March 25, 2012
Hello Everyone!
So I've been telling Ben that I need to update for about a month now! With Ben's school and all of Cora's appointments there is just no time. So, it's after midnight and I am making time to update.
Cora has been doing great! Honestly, there is really no news to report! She continues to thrive in her talking and walking. We have been enjoying this beautiful Spring/Summer weather and usually have the windows open. This requires me to keep a heavy eye on Cora as she takes off towards the front screened door and yells, yes yells, at anyone and everyone passing by whether it be in a car or simply walking. Just the other day a guy was walking by and she yelled, "hi, hi, hi" then turned to me and said, "mom, boy walking". Luckily it was a boy as she is at the stage where she gets them mixed up! She also repeats everything that comes out of our mouths be it good or bad. About a month ago a lady cut me off when I was driving and I yelled, "moron" (I know not the ladylike thing to do!) so the rest of the way home she was yelling, "moron, moron, moron" to random cars and trucks passing by I couldn't help but chuckle!
Cora is enjoying pool therapy once a week. At first she hated it, but now loves it- depending on her mood for the day (I thought terrible 2's were bad!). She is also continuing regular physical therapy once a week with Stephanie. Stephanie is great! She always goes above and beyond to help us, and especially Cora, out. We didn't see her for a few weeks in February, but saw another pt who was nice as well, but the first time we saw Stephy again you could just see the excitement on Cora's face! I missed her as well and looked forward to our little chats.
In February we went to celebrate auntie Christina's birthday with her. One Thursday we had nothing going on so we went to Eau Claire and spent the day with her and Annabelle. We had lots of fun, but it went by way too fast! We also went to visit a Catholic preschool that Ben and I are interested in enrolling Cora next year. We've only visited one so far, but we were very impressed at what they had to offer. A little boy named Sammy came up to us and said, "Hi, my name is Sammy. Welcome to Jesus' school!" We were invited into the preschool room and Cora walked right in like she owned the place, sat down, and began to play with play dough with the rest of the children. So much for needing to be socialized at a daycare! They were very impressed with her and welcomed her with open arms to which we were equally impressed. We plan on visiting at least one more in the area before we make our final decision next January. Time will definitely go by fast and before we know it Cora will be in preschool.
Our next big appointments are coming up in April and May. April 5th we see Dr. Wolpert, the urologist. We saw him in January when we decided to take Cora off medicine. I believe we will talk about what to do for the future at this appointment. We put Cora on the potty 3-4 times a day, but still don't know what she can and can't feel. We also will see Dr. Koop, orthopedic surgeon, on May 1st. At this time we will discuss surgery, if she will have it this year, and show off a little with Cora's walking. Just this past week she was showing off when she decided to drop one of her sticks and walk with one, yes, I said one!!! It's something we've been practicing at pt, but she usually hates it, so I was super excited when she did it all on her own!
The next BIG event we are looking forward to is uncle Nick and auntie Ashley's wedding! We are super excited that it's less than a week away! We've been having dance party's and Cora's been practicing shaking her little butt- which she is pretty good at! It's always nice to see people who you don't usually see very much. Sometimes it feels that we only see people at weddings and funerals! Auntie Tina, uncle Raleigh, Ashley, and Austin are coming home and we are very excited to see them! Cora LOVES when we Skype with Tina so she will finally get to see her in person. Can't wait!!!
Hope you all are enjoying this lovely weather! It sure is nice to get outside and get Cora used to walking with her sticks on uneven surfaces. You don't realized how uneven outside is until you have a child who needs assistance walking. She is doing so well and we are SO proud of her!!
Have a wonderful Easter!!!
Love,
Ben, Paula, and Cora
January 18, 2012
Hi Everyone,
So much has happened since I updated a week ago. As you may remember last week we were so excited for Cora to finally be off medicine. That excited news lasted 5 days and now she is back on medicine. On Saturday, she started complaining that her lower back hurt. She kept grabbing it and whining, "mama, back hurt". We knew that it couldn't be her kidneys because she just had a renal ultrasound on Monday. Then, as we started getting her ready for bed, I noticed that she felt warm and sure enough she had a fever of 99.6. Which isn't very high, but Cora's normal is usually 97.4-98.0 so we were a little concerned. We gave her some Tylenol and she fell asleep just fine. We thought we would wait until morning and see how she was. Then around 4am she woke up screaming for mama and dada. I ended up laying with her in her bed and around 7am she woke up throwing up! Her fever was 100.8 so I gave her a bath, quick jumped in the shower and then called the nurse line. The nurse told me to bring her in immediately. So into the ER we go and for the next 4 hours we sat there while they ran a strep test and urine culture. The strep came back negative, but the urine came back positive and her white blood cell count was high. At this point Ben and I could have curled up right there and just cried! We were so excited to finally be off medicine and now Cora is back on for 10 days. On Tuesday I received a call from Dr. Wolpert's office saying that we would put her back on the medicine that she was previously on and meet with Dr. Wolpert in 3 months. This was crushing news!! But, we put our strong faces on and know we need to be strong for Cora.
On Tuesday, we also met with Dr. Koop (orthopedic surgeon) and Dr. Graupman (neurologist). Cora had a MRI on her head and a x-ray on her hips. She screamed the whole 10 minutes for the MRI. I felt so bad and there was nothing I could do. Hopefully, next year she will be better and understand it a little more. The results for the MRI came back great! Every year when we see Dr. Graupman, he forgets who we are until he sees us because Cora has never had a problem with her shunt (knock on wood!).
When we met with Dr. Koop he explained that her hips look great and he was also excited to see her moving around so much and at ease. I explained that we wouldn't be where we are without Gillette and without Stephanie! I told her that Stephanie pushes her (which we love) and we also push her so that she continues to thrive. Looking at the x-ray from last year compared to this year there is a huge difference- her hips look a lot straighter! Dr. Koop also discussed with us the 4 surgeries that Cora would need on her legs and feet. We knew this day would come, it was just a matter of when. I told him that she will start preschool in 1.5 years and asked him if he would suggest having it done before then and he said, "yes". Obviously, it's just preschool so she could miss some days, but I would like her to be walking good again before starting preschool. He said that it is something that we need to discuss with Stephanie. Cora will need surgery when her walking comes to a plateau and it will probably be done sometime this year. I asked him about the down time involved with the surgery and he said she would be in the hospital 3-4 days and that recovery time would be around 6 weeks or so. She would have casts on her legs for 6 weeks. This is going to be difficult as she moves, moves, moves and LOVES to walk, she always so go, go, go! We will get through it and Cora will be a trooper through it all!
We continue therapy and Cora continues improve. Last week, Stephanie was sick and Cora was so sad. She missed her Stephy and didn't want anyone else to help her through therapy. We absolutely love Stephanie and all she has done for us and especially Cora! Cora would definitely not be where she is today if it wasn't for Stephanie and all the doctors and nurses at Gillette. They are like a second family to us!
Thank you all for your thoughts and prayers! We really appreciate them.
Love,
Ben, Paula, and Cora
January 11, 2012
Hi Everyone,
NO MEDICINE! NO MEDICINE! NO MEDICINE! Yes, you heard that correctly, Cora is finally off all medicine! This is such a BIG deal as she has been on medicine since she was born! On Monday, Cora had a renal ultrasound and a RNC. The ultrasound checks her kidneys and the RNC detects reflux. For the RNC they filled her bladder 3 times so they could see if it would start to travel up (reflux) and all 3 times it stayed in her bladder. After both the ultrasound and RNC we headed to Dr. Wolpert's office to find out the results. They weighed Cora and then wanted to get her blood pressure. I asked the nurse if it was really necessary to get her blood pressure since Cora gets really upset and therefore it is never accurate. She hesitated and then said, "no, we don't have to get it". Like I said before, my friend Natalie taught me that we have to speak up for these kiddos! We then met with Dr. Wolpert to talk about the results of the tests and he said he was very impressed and there is no sign of reflux. He told us he was quite happy and couldn't have asked for better results! I then asked him if she was able to be off medicine and he said YES! We were so happy! It was such wonderful news that we decided to celebrate and get Cora a basketball hoop. I put it together today and she loves it!! We help her dunk, but she also practices shooting while having only 1 forearm crutch. She freaks out a bit and wants her other forearm crutch, but we try to make it fun! The problem is the ball is too big for her little hand so she wants both hands, but needs the crutch. Hopefully, it will build up her strength and next week at physical therapy I will ask Stephanie what we can do to help her out with it. She is just so excited to have a basketball hoop!
Cora had a wonderful birthday! One of her presents from mama and dada was a Vtech MobiGo. She loves it, but is still learning. She gets too excited and frustrated sometimes and just pushes buttons. The age range is 3-8 years old so hopefully she will catch on quickly. She received so many presents from everyone that when Christmas came she didn't really care to open presents. We were thinking maybe we should have a 1/2 birthday instead? Not a bad idea, but we'll still think about it!
We hope you all had a Wonderful Christmas and a Happy New Year! We stayed home again Christmas Eve and left Christmas day to see both sides of the family. It's hard to see everyone in one day, but it gives us a chance to have our own Christmas and start our own traditions. We make it work and enjoy spending time with family. Before we knew it, we were on our way home and Christmas was all over. Cora's favorite Christmas present was a little broom that we got her. She always insists on "helping" mama sweep that I thought, "why not get her a broom just her size"? Now, she wants to sweep 3-4 times a day! So, of all the toys, games, etc. for Christmas, Cora loves her Broom! I guess it's the simple things, right?
Since I last updated Cora had 3 pool appointments. The first one she screamed basically the whole time. As long as Stephanie was okay with her crying, I was too! We knew she wasn't hurt so there was no reason to stop. Glad Stephanie and I think the same! The second time she cried for 5-10 minutes and last week she cried for maybe 2 minutes. Stephanie and I realized that she was probably scared a bit from the chair that lowers her into the pool so now I just hand Cora to Stephanie. From now on though, another therapist is doing the pool therapy so we pray that Cora will continue to like it. I am sure Amanda (another pt) will take a little getting used to, but hopefully Cora will be fine. All the physical therapists are so nice, but Cora wants her Stephy!! Honestly, we really can't blame her, she has seen Stephanie for almost 3 years now!
On Tuesday, Cora has more appointments at Gillette in St. Paul. She will have a x-ray of her hips, see her orthopedic surgeon, Dr. Koop, and see her neurosurgeon, Dr. Graupman. It will be a busy morning, but we were glad to get them all in one day- that rarely happens!
We have also started looking into preschools. We are hoping to send Cora to a private school or a charter school. Sending a child off to school is hard enough, but having a child with special needs is even harder! If Gillette only had a preschool we would be set! We want a school where Cora can do her best, we want her to be independent and have the class size smaller than a public school. She won't start school until Fall 2013, but that will come quickly! Being a stay-at-home mom, I am going to start a little preschool with Cora now that she is 3 years old. Since she doesn't go to a daycare to get the "preschool" that others get, it will be a chance to see what she knows and what she doesn't. It will only be maybe 2 hours a week or so. I am not sure what Cora will sit still for, so we'll see how it goes! I may have my hands full!!!
We thank you all for your continued thoughts and prayers! They really work and we really appreciate them! Also, please feel free to shoot us an email and let us know how your families are doing. I know you get to hear all about us, but we want to hear from you too!! Just go to the homepage and click on 'contact us'. We still don't have the message board up yet as there are too many spammers! We are working on correcting this and by we, I really mean Ben!!
With love,
Ben, Paula, and Cora
December 8, 2011
HAPPY BIRTHDAY CORA! HAPPY BIRTHDAY CORA! HAPPY BIRTHDAY CORA!
Our beautiful little baby is 3 and now a big girl! Remembering this past week I can't believe it's been 3 years! I remember it like it was yesterday and feel like it was yesterday. Time sure does fly by!
Last week we celebrated Ben's birthday. Cora and I went to get him a "brownie mountain" on Friday. We came home and put it in the frig. and I told her that we will give dada his cake tomorrow (Saturday) and continued to play until nap time. Later on, when dada came home she kept saying "dada birthday cake"! I tried stopping her, but she kept repeating it. She then went to the frig. and said, "in here". What the heck do I do now??? What a little turkey!!!
What a year it's been! Remembering where Cora was physically and mentally a year ago, she has come SO far. Last year in December we bought her a walker. Then in March/April Stephanie (Cora's Wonderful physical therapist!) started trying the forearm crutches with her. It sure didn't always come easy. At first, Cora hated them and was so scared to use them. Before long, we were walking in to pt with her walker and practicing with the forearm crutches. For the Spina Bifida Run, walk, & Roll in August, Cora used her walker. We wouldn't have even imagined her using her forearm crutches because she wasn't walking very fast or well with them. Now, she won't use her walker (maybe a good thing?) we just keep it in the van for long distances. Because it is winter it would be nice if she would use it because it would be more stable for her on the slippery sidewalks. Since she is still little we often use her stroller for long distances and if it's slippery.
We have been really busy with appointments. Just this week Cora had another dentist appointment. This time she actually opened her mouth and wasn't scared. She wouldn't let them touch her mouth or teeth, but Dr. Timm said that's ok. As long as we don't have any worries about her teeth there is no need to rush her. On Tuesday, before her appointment, I was practicing with her and telling her where we were going. We go back again in 6 months so we'll see how she does then.
Next week, we have 6 appointments in 5 days! It will be a crazy week!! Cora is going to try the therapy pool. I really hope she does well as it will be good for her balance and bearing weight on her legs. I am really excited for Cora! Right now we only have one pool appointment scheduled because we want to wait to see how she does and then we'll schedule out from there.
Time goes by so fast! I am so glad I choose to stay home with Cora. Believe me, it's not always easy, especially financially, but we make it work. I don't want to look back one day and my children are all grown up, but I have a huge house and the best vehicle! I want to look back with no regrets, a loving family, and many memories!! Can you tell I am an advocate for stay-at-home moms? Anyway, enough ranting for one day!
Thank you all for your continued thoughts and prayers! We really appreciate them and they really work!
We wish you all a very Merry Christmas and a Wonderful start to the New Year!!
Love,
Ben, Paula, and Cora
November 9, 2011
Hi Everyone,
Today Cora had a procedure called Cystoscopy with a bilateral deflux injection. It's complicated, but basically Dr. Wolpert went in through her bladder wall and injected a substance to stop the reflux from going up into her kidneys. We arrived at 7:45am and her surgery was supposed to start at 9:15am, but didn't start until around 9:45am.
We got into her room around 8am and the nurse started taking all her vitals. We changed her, watched curious George, and just played. The nurse filled us in on what was going to happen and when. One of us was allowed to take her to the OR. Then they would come and get us once she is in phase 2 (starting to wake up). I expressed my concern that we want to be there when she is waking up for Cora's sake and ours. I told her that she would scream and be unhappy if all she saw was strangers when she was waking up. I also told this to Dr. Wolpert while talking to him and the anesthesiologist that it was important for us to be there. What do you think happened???
I took her to the OR where she cried the whole way there. I held her while they put her to sleep and then helped lay her on the table, kissed her, told her I loved her and left. It was one of the hardest things I've ever had to do.
Around 10:25am Dr. Wolpert came to talk to us and told us that she did great and the procedure went well. After talking to him, our nerves faded and we were pleased. He said they will come and get us shortly to take us back to recovery. Well, shortly turned into 40-45 minutes later! The nurse came out and said they were taking her back to her room. We were walking and turned the corner to her room and there she was sitting up, crying in the big bed!! I just ran to her and hugged her! I was overcome with emotion-happy to see my little honeybun, but PISSED they didn't get us sooner! The poor little girl had a cry I have NEVER heard before! She wanted no nurse to touch her and wanted her iv out!!! Her iv was in her wrist with huge amounts of tape around a splint that reached her elbow. The anesthesiologist said they wanted to monitor her because after she woke up she was crying funny and seemed to be holding her breath. I sternly said, "that is why we wanted to be there when she woke up". Simple right?!? She would never had gotten this upset had she seen us instead of strangers with hats and scrubs on when she woke up. I was upset, but tried to keep my cool for Cora's sake. She wasn't able to settle down and they were wondering why. Hmm...let's see she just had surgery, wants this damn iv out, and woke up to strangers!!! I kept telling them if they take the iv out she will calm down because she kept pulling at it saying, "all done". They gave her a sedative to calm her down and then the iv came out. Once the iv was out we noticed 3 different pokes on her hand trying to find a vein. Poor girl!
She was so tired! She wanted to sleep, but wanted to make sure mama and dada were still there. We reassured her that we weren't leaving. The nurse that was in there gave her a bomb pop which she loved! I kept asking the nurse why didn't they get us earlier, especially since I requested it and warned them what would happen. I mean, come on, she isn't even 3 yet! What child wouldn't be scared? The nurse didn't know and said that she would have came and got us right away, but wasn't sure why they didn't. Side note, this was a different nurse than the one that took her vitals in the beginning.
Well, what's done is done, but we will FOREVER have the image of coming around the corner seeing Cora crying, trying to get the iv out while the nurses are trying to get her bed into her room. Just breaks my heart!
Now that we are home she is doing okay. She doesn't want to play, just sit. She has a bad cough and is hoarse. Not sure if it's from the tube in her mouth during surgery or what. This morning when she woke up she had a cough, but no fever. We told the nurses about this and since it just started this morning and no fever she was still cleared for surgery. Hopefully, she isn't coming down with something, but we'll watch and see. Wouldn't that just be dandy?!
One thing I learned from a friend is that, "you MUST ask questions, you MUST do your own research and you MUST never get too comfortable". Believe me, I tried today, but feel that I failed Cora.
Thank you for your prayers!! Please pray for a fast recovery for Cora and that soon she will play, play, play!!
Love to you all,
Paula, Ben, and Cora
November 7, 2011
Hello Everyone!
It's been crazy busy at the Gryskiewicz house! I actually began updating our website on the 3rd, but wasn't able to finish so here I go again! It seems like every year in the fall the Gryskiewicz household gets super busy and this year there is no exception! I am always asking, "where does the time go?"
Ben is still busy as ever with school. Luckily, he takes classes online so at least he is home studying and not away in a classroom. He studies every night and his hard work is paying off because he just got a perfect grade on a paper he handed in a few weeks ago. We are pretty proud of him!
Cora had fun on Halloween and was "Little Red Riding Hood". Her costume was super cute! We went and visited Stephanie, Cora's pt. Cora loves her "Stephy"! We also went to auntie Ashley's mom's house in Eden Prairie. We stayed there for a while and visited with them and Cora had a dance party with Ashley, her mom Donna and sister Danielle. It was a fun evening and we didn't get home until after 9pm so we didn't make it to the neighbors. Cora sure didn't mind though, as long as she was able to see her Stephy and Ashley.
As you may recall from previous posts, she had a urologist appointment on September 29th. We met with Dr. Wolpert and discussed having the deflux surgery. He said her kidneys still look good, but she has a considerable amount of reflux going into both kidneys. In order for us to keep her kidneys looking good we need to stop this reflux from happening. So, Cora is scheduled for surgery this Wednesday November 9th. We will be there early in the morning and leave late afternoon, early evening. Last week she had her pre-op appointment and was cleared for surgery, so now we just need to keep her healthy until then (and of course after too!) At her pre-op her pediatrician did explain that even though it's an in-out surgery we still need to remember it's a surgery and that she does need to relax and rest the day or two after. I made sure she doesn't have any appointments for the remainder of the week so we will be home resting and taking it easy.
We continue every week with physical therapy at Gillette. She does an awesome job and absolutely loves Stephy! The whole way there is is constantly saying, "Stephy, Stephy." I then respond by saying, "yes, we are going to see Stephy." Sometimes she keeps repeating it like a broken record!!!
This week auntie Tina is visiting from Florida. Tonight we had to call her again because Ben was talking to her and Cora didn't get her chance. Cora loves calling people on the phone, but when she gets on she is shy and doesn't want to talk long. It must be from her dada because mama can talk forever! We are so excited to see auntie Tina and uncle Raleigh this weekend.
Sorry for the LONG update. I really need to get on here more and update! Please keep Cora in your Prayers as she has surgery. We trust in her doctors and know she is in good hands.
Love to you all,
Paula
P.S. as I finish writing this Cora and dada are both sleeping, snuggled together! How precious! I am so lucky to have such a beautiful family!
September 23, 2011
Hi Everyone,
Long gone are the days in the pool! We enjoyed our Summer, but it went by way too fast! Our family/living room is done and we are enjoying the extra space. It took the whole Summer, but it is finally done and it feels like new room and we absolutely love it! We are still hoping that we can do the siding next Summer.
Ben started school again and now our lives are busier than ever! His classes are getting harder, but he works hard and always does great. We, as a family, can't wait until he is done and we get more time together. He will be done in 2013 when Cora starts preschool. Oh my, did I just say that! I will definitely be crying! It will go by so fast that I am just going to sit back and enjoy my time with her now.
Speaking of little miss Cora, last time I updated I mentioned that she is doing well walking in her walker and practicing with her forearm crutches at physical therapy. Well, now she is walking well with her forearm crutches! Yep, she is doing awesome!! We continue to have physical therapy working on moving around, walking up stairs, and just getting her used to walking with her crutches in general. We are scheduled through December with physical therapy. Once we get closer to December, Stephanie will let us know how often she thinks Cora will need pt. I am hoping we continue once a week or at least twice a month with pt because I think she needs it. Especially moving around during the Winter. It will be a challenge dealing with the snow, ice, and whatever Winter brings us. Cora, I'm sure, will do great with whatever comes her way!
Last, but definitely not least, Ben's brother Nick and his fiance Ashley are not moving to Colorado. We are so happy! Ashley told me over a lunch date we recently had and I am so excited. We try to get together as often as possible and now we can continue. Cora loves her "Ash" so she is excited as well!
July 21, 2011
Hey Everyone,
Hope you all are doing well and enjoying your Summer! We sure are enjoying Summer and time seems to be flying by quickly. Lately it's been so hot that we are struggling to get outside for long periods of time. Cora and I try to get outside and go for a walk everyday, with this week being an exception, of course! We also bought a pool that is big enough for all of us so we are enjoying that as well. Cora absolutely LOVES the pool! She does a wonderful job walking and going on her knees around the pool, she doesn't know it, but she working while she is playing in her pool!
Our weeks consist of "Kid Series" on Mondays at various parks here in Bloomington and Cora loves moving and grooving to the music. Then we have play dates and physical therapy during the rest of the week. By Friday, we can't believe it's already Friday! Where does the time go???
Cora is moving quite well in her walker. We continue to have pt twice a week and it's working quite well for her. It allows her to "park" her walker while she practices walking in forearm crutches. She honestly doesn't get much practice with her forearm crutches at home as we are trying to get used to her using her walker more around the house, so having physical therapy to do so allows her to get better in her crutches. She walks into physical therapy which is great practice for her, even though it takes quite a while. Cora, like any other two year old, gets distracted easily. She stops to see the birds flying, hearing cars go by, and greeting everyone who crosses her path. Very cute, but we also need to get to physical therapy! Mommy remembers to have lots of patience!
Last time I wrote about Cora practicing standing from a kneeling position and how she didn't want to work hard at it. Well, now she is constantly getting up from kneeling even when she doesn't have her afo's on. What a little turkey! Stephanie, Cora's great physical therapist, and I knew she could do it, it was just her wanting to do it.
Lastly, our fireplace is non-existent! Ben finished the final touches of painting and we can't wait to enjoy the new space. It was such an ugly fireplace and we are so glad it's finally gone. We are hoping to still do the siding this year and take down the ugly chimney. If we don't do it this year we hope to get it all done next year. Hey, at least the fireplace is gone!! Now that Ben is done with the fireplace, I will get on him about putting all the pictures we've taken on our website. Like I said before it's a long process that keeps growing as I continue to take pictures everyday. There's always so much to do and not enough hours to do it all!
Hope you all have a wonderful Summer!
Love,
Ben, Paula, and Cora
June 9, 2010
Hello Everyone!
Well, I haven't updated since Easter (way too long) so I thought I would write a few lines while little honeybun is sleeping. Like usual we are keeping busy with appointments and trips to the zoo. Cora absolutely loves the zoo! The fish are her favorite, plus they are more interesting than Marshall and Ted (Cora's fish). Luckily, we weren't at the zoo yesterday when the wolf escaped! I really don't know what I would have done.
We continue with PT twice a week, play dates, and starting next week our Mondays are now filled with "Kids Series" where there are different activities for kids at different local parks here in Bloomington. Cora is doing great with PT and now realizes that we expect her to pull to a standing position without any help. I think for a while there she thought she could fool us, but we knew all along that she could do it. We ordered her bright pink forearm crutches so now she can practice with those as well as her walker. She usually prefers her crutches, but can move much faster with her walker. All in all she is doing quite well and we are so proud of her.
On Tuesday the Twin Cities had the hottest temperature in the whole U.S. with 103 degrees!! It hasn't been that hot here since July 1988. It was so hot that it made yesterday (80 degrees) fell like a cold front! Just thought those of you who aren't from Minnesota would like that little tidbit of information. Luckily, today is beautiful and it's nice to have the windows open instead of the ac.
This weekend Ben is taking down our fireplace on the inside while Cora and I are in Wisconsin. We've hated it since we moved in so we are so happy to see it go. Then this fall we are going to take the chimney down and put on new siding. We also can't wait for this! It will finally make our house complete. Two years ago Ben painted the front door and screen door, last year we had our front walkway done, and this year we are doing siding. The projects keep getting bigger and bigger! I think, after the siding, we are finally done. Thank goodness!!!
Well, this is it for now. Hope you are all doing well and enjoying this beautiful weather because in 5 months we will have snow!!!
Love,
Ben, Paula, and Cora
P.S. I have taken so many pictures of Cora so in the coming weeks I will have Ben put them on our website. It just takes a long time so he needs to find time to do it!
April 22, 2011
HAPPY EASTER!!
Can you believe Winter is finally over? Well, let's hope. It was snowing here just two days ago! We've been keeping busy with appointments and play dates and dada has been keeping busy with work and school. He will be done for the semester on May 15th and we just can't wait!
Since our last update we have some big news! Cora is now practicing walking in forearm crutches! This is a huge accomplishment for her and we are so proud! Before long she WILL be in a Gillette commercial! She is practicing hard daily and is so proud of herself. So now instead of not having PT during the summer we will continue PT twice a week through August. I am not complaining at all because as long as she is willing to move forward let's allow her to do so. In fact she doesn't use her walker much at all anymore. It's funny because when Stephanie first showed Cora the crutches she was scared of them and now she puts her arm in them and is ready to go! We need to have her practice outside and on different surfaces with both her walker and crutches as soon as the weather allows us to.
We are still practicing getting up from kneeling to standing. I swear we've been practicing this forever! We know she can do it because she's showed us many times. Cora is being a typical 2 year old that only wants to practice it when she wants to, not when mommy tells her to. If she is this way when she is 2 what will she be like when she is 16? I keep telling Stephanie that when Cora turns 16 she is going to live with her! Overall, Cora does a wonderful job and always impresses us with new tasks that she learns. She is very determined when she wants to be and when she is praised.
We are anxiously waiting for Summer to be here. Our Summer schedule will be very busy with appointments, play dates, and trips to the zoo and parks. I can't wait! Now that Cora is more mobile it will be fun for her to get out and enjoy herself.
Hope this update finds you all well!
Love,
Ben, Paula, and Cora
March 13, 2011
Hi Everyone!
Just thought I would update to let everyone know how Cora's appointment went on Thursday with Cora's urologist, Dr. Wolpert. We were planning on going ahead and setting a date for deflux surgery for her reflux (sounds confusing, doesn't it?), but since she only had a ultrasound and her kidneys look great we need to wait to schedule it until she either has another UTI or after her VCUG and CMG in 6-9 months. Of course we are thrilled her kidneys look great, we were just hoping to schedule her surgery so that she can get off this nasty medicine. Since she didn't have the VCUG or CMG this time (she only has these tests done once a year) we weren't able to schedule the surgery because there would be no way to prove to our insurance that she still has the reflux. Dr. Wolpert also said that she may just outgrow the reflux. This would definitely be ideal! We would just like to get her off this medicine as soon as possible one way or the other. I sure hope you all followed that!!
I also had a appointment on Thursday night. I have been working hard on the treadmill since the end of January/beginning of February and my right leg was swelled and hurting really bad. I went and my doctor did x-rays and on Friday I had a ultrasound. Luckily, there wasn't anything broken and no blood clots. I was given orders to stay off the treadmill for 4-5 days and ice it whenever I can. It has been very difficult since I usually walk/run everyday. I will try walking tomorrow for a little while to see how it feels. It really stinks when you get excited about exercising and then you are told not to for at least 4 days.
Since our last update Cora had a little stint in the ER on February 20th. It started on Friday the 18th when I noticed she was acting not quite herself and running a fever. Remember, we need to stay on top of her fevers for obvious reasons, but mostly for the possibility of a UTI, or an infection somewhere which could also be her shunt somehow being infected. Then on Saturday she was okay, but not acting like the funny little go, go, go girl we know. Saturday night she was coughing a lot, breathing heavy and had a fever again. Sunday when we woke up she was doing the same as Saturday night only worse. The first thing I thought was she had pneumonia. We ended up being in the ER from 11:30am until 5:00pm! They ran numerous tests including a chest x-ray, strep test, test for RSV, urine culture. They all came back negative so now what do we do? By the time we got home Cora's fever was at 102.4 and she looked terrible. She was so restless and only wanted mama. Her doctor wanted to see her so we went in on Tuesday and he felt so bad for her. There was nothing he could give her because he believed it was just some virus comparable to RSV. She continued to have a fever until Thursday night so we had no therapies that week. It was really scary how sick she was, but like always we got through it!
Cora received her new AFO's and they are very cute. She also got her FIRST pair of shoes! I keep telling Ben a girl has to have shoes!! With all of her AFO's up until now they were too small for shoes to fit. Her feet are very small and chunky, which is common in kids with Spina Bifida. They are so cute that we got two pair of the same kind. Hey, when you find a shoe that works you make sure you have backup! We continue with PT every week and we just love her therapist, Stephanie. She is great and always goes above and beyond her duties as a physical therapist. Cora is doing a good job walking in her walker and soon we will be taking her outside and public places to walk. We just need to be close by so that she doesn't fall backward or flat on her face. That would be horrible!!! Before long she will be walking so well that she'll be in one of Gillette's commercials. Well, that's mama's goal anyway!!!
Happy Spring!!
Ben, Paula, and Cora
February 14, 2011
Happy Valentine's Day!
Cora now has some pets of her own. For Valentine's day from mama and dada she got some fish. She loves the fish when we go to the zoo, so Ben thought it would be a great present. He wanted to get her a bowl with a Beta, but I said if we get fish we should just go all out and that's just what we did! We decided not to get a Beta since you can only have one and got some tropical fish instead. She has a little 2.5 gallon tank and loves watching them swim. Cora helps feed them and dada is in charge of cleaning and maintaining it. I love the fact that all our pets are low maintenance!!
Cora's appointment went very well on January 27th. As you may remember we saw her orthopedic surgeon, Dr. Koop. It was a routine appointment to check on her hips, see how her foot placement is doing, and overall see how she is getting around. He was very impressed with how she is doing and also that her ball and socket of her hips is staying in place. He said that with her diagnosis it should be dislocated, but it's a miracle that it's still in place. I reassured him that it may be part miracle, but also part prayers. He agreed and said, "keep doing what you are doing" and make sure to take lots of videos so we can compare them in the future. So we now have a new video on our website of her walking so make sure you check it out. She does so well and we are so proud of her!
Cora continues to thrive in her walker and it shows off in PT every week. Her physical therapist, Stephanie is great! I am going to miss her once our PT slows down. It will definitely be bittersweet. Cora gives her the same devilish laugh as me when she doesn't want to work. Of course, there are days when she doesn't want to go in her walker and practice, but she is 2! This past weekend she didn't want to go in her walker and actually had a little temper tantrum so I didn't push it and we instead practiced getting up and down while playing in her kitchen. As long as she doesn't catch on that it's work I think we're okay!
We continue to have playgroup and therapies every week and stay pretty busy. This week Cora will get her new AFO's. She continues to grow which is wonderful, but after a while needs new AFO's to keep up with her growth. Mommy is happy as the old ones were giving her red marks on her left leg. Also, her new AFO's will give her more support for walking and getting around.
Our next big appointment is March 10 with Dr. Wolpert, Cora's urologist. We are excited to meet with him to see how her kidneys are doing and talk about the surgery we may have her get. The surgery will stop urine from going up into her kidneys and also keep her off a daily medicine. We would love to get her off medicine as she has been on medicine since she was born. We will talk about this later as we aren't sure if we are going to do it soon or not. We could have done it last year, but wanted to wait until she was a little older.
Hope this update finds you all well! We sure did enjoy the 48 degree weather we had yesterday. That still isn't very warm, but compared to what we had it was a heat wave!
Love to you all,
Ben, Paula, and Cora
January 20, 2011
Hi Everyone!
Like always I can't believe it's been so long since I updated! Crazy how time flies! The last time I updated was on Cora's 2nd birthday. The past 6 weeks have been extremely busy like always. Cora's birthday party was supposed to be on December 11th, but as you know we got 18 inches of snow the night before. We were going to have a sledding party, but I think we prayed way too much for snow. It has been a crazy winter here in Minnesota! So far we've had a total of 49.9 inches!! I love winter, but after this year I could live in one of the southern states no problem! Anyway, all in all her birthday was a blast and because of the snow she had 2 birthday parties.
On December 13th, Nick, Ben's brother proposed to his girlfriend Ashley in New York. We are so excited for them. We love her so much and have always called her auntie Ashley, but now it's official. We can't wait for the wedding!
We had a wonderful, blessed Christmas! Auntie Tina, uncle Raleigh, cousin Austin, and cousin Ashley drove up from sunny Florida to spend Christmas with the Gryskiewicz family. I thought they were absolutely nuts to leave Florida for this cold weather, but it was nice to see all of them and our time with them went by so fast. Tina usually makes her way up a few times each year, but it's been a while since we've seen the rest of the family.
It was our first Christmas without "papa". Cora has always called my grandpa that and every once in a while she will look at the ceiling and say "papa" and we tell her yes, "papa" is in heaven. We went to my grandma's house and had a good time. There were many tears, but along those tears were memories and little "miracles" that grandpa is still watching over all of us. Grandma is doing well and staying strong. She is such a strong lady and glad she can get around and go places. I try to call her at least once a week and she is always telling me how busy she is and what she has been doing. When we talk it's always 30 minutes to an hour. I will look back someday and remember all of our conversations.
I can't believe it's January already. As Ben mentioned I am 30 years old! I remember in high school thinking 30 was so old! Now, not so much! Cora and I have been keeping busy with 3-4 appointments every week. She is doing so well in her walker and some days I feel like she's been walking in there for years. Other days, she doesn't want to walk at all and gets distracted easily, but like Stephy (her PT) says, "she is a 2 year old." Stephy is great with Cora and we appreciate everything she does. When Cora starts getting in her walker and out of her walker by herself we will cut back on her PT appointments. We will definitely miss Stephy, but will also enjoy being at home more.
Cora recently got over a ear infection. She didn't run a fever so we didn't know she had it. Then one day I noticed her twitching and Stephy noticed it too. We thought we should call her neurosurgeon's office and see if we should take her in. They said to wait and take note on when she is doing it, what she is doing while she is doing it, and how many times. They also thought we should take her and have her ears checked just in case it's an ear infection. Well, what do you know, it was an ear infection. Then, just last week, she had a fever and threw up. The fever lasted 1.5 days and hung around 100-102. Not sure what this was, but luckily it only lasted a few days and she was all better. It's hard to know when she is sick because she is always laughing and playing like normal.
Next week Ben starts school again which means our nights and weekends will be filled with Ben studying. He works so hard and it pays off because last semester he got all A's. Cora and I were so proud of him! These last 5 weeks he had off of school we tried to enjoy every bit of it. Nights and weekends were spent playing and having fun as a family. We will definitely miss playing with dada, but hopefully this semester will go by fast. It was nice for Ben to not have to come home from work and start studying for 2-3 hours every night. We look forward to 2013 when he will be all done.
Our next big appointment is on January 27th. Cora will have an x-ray and see Dr. Koop, her orthopedic surgeon. I hope Cora will show off all of her walking skills so that he can see what we've been doing the past 6 months. Also, on the 27th, my 2nd cousin Bernadine is having surgery. Please say prayers that her surgery goes smoothly and that she is able to recover fast from it. We have been saying prayers like crazy for her and wish her well.
Thank you for being so patient with my updating. I always try to update every few weeks, but it's hard to get time in an already busy schedule.
With love,
Ben, Paula, and Cora
January 16th, 2011
Happy 30th Birthday Paula!!!!!
Paula is a wonderful wife and mother, so Cora and I wish her many happy returns!
Love,
Ben and Cora
December 8, 2010
HAPPY BIRTHDAY CORA! HAPPY BIRTHDAY CORA! HAPPY BIRTHDAY CORA!
Hello everyone,
We just can't believe our dear baby Cora is 2 already!! It's bittersweet because we love watching her grow up, but it's also kinda sad to see her grow into a little lady and not a baby anymore. Ben is waiting for me to cry, but I will wait until tomorrow when he's at work. HAHA! I just can't believe it's been 2 years already. I remember it like it was yesterday!
Today we had lots of fun celebrating her birthday. Ben took a vacation day so we slept in and then had breakfast in bed watching Cora's favorite, "Super Why". After breakfast she opened her presents and then we got dressed and went to Macy's 8th floor Christmas display "A Day in the Life of an Elf" in downtown Minneapolis. We then drove to Pizza Ranch (another one of Cora's favorites) for lunch. Came home, Cora took a nap and now we are going to have supper and take a drive to see some Christmas lights.
All in all it was a great day!! I still can't believe how big my baby is! On Monday we went in for her 2 year check-up and she is 30lbs, 4 oz and 32 inches long. She has dropped some weight since she was there in October. I think she weighed over 31 lbs. It must be all the crawling and walking she's doing.
Thanks to everyone for all their thoughts and prayers. Cora really is thriving and doing so well. We continue having physical therapy and Cora gets so excited when I say, "we're going to see Stephy today" (Cora's physical therapist). We couldn't be more proud of all her accomplishments. It seems like every time we turn around she is doing something new and accomplishing some goal that we have. She is walking well in her walker (a goal mama had by the time she was 2). We still don't leave her by herself and stay pretty close, but she goes, goes, goes. She does get distracted easily, but come on she's 2 right?!
With love,
Ben, Paula, and Cora
December 1, 2010
Hello Everyone,
Yes, our website is finally being updated. We have again been very busy. The whole month of October I was busy making Cora's Halloween costume. She was the cutest scarecrow in the world!! We went to visit the grandparents Saturday evening and didn't get home until 12:30am. Then on Halloween we went to visit uncle Nick and auntie Ashley and a few of our neighbors. It was a fun weekend and Cora enjoyed hanging on to her basket and getting candy (of which mama and dada HAD to eat!)
After her Halloween costume was complete we started preparing for Cora's birthday and decorating for Christmas. With Thanksgiving, Ben's birthday, and Cora's birthday all within two weeks we have been quite busy with preparations.
Ben's grandma also passed away on November 16. She was 93 years old and a sweet, caring lady. She will be greatly missed by her husband, children, 30 grandchildren and 31 great-grandchildren. She lived such a great life!
We enjoyed our first Thanksgiving at home. We did miss seeing our families, but it was nice to start our own tradition and not having to travel. We ate, took a nap, and watched Christmas movies. Cora and I were sick last week so it was nice to just take it easy and stay home. We finally started feeling better and were ready to shop by Friday.
Not much has changed since our last update. We did get a call about a week after our Sept. 30th appointments saying that Cora had a UTI. This was so upsetting since she hadn't had one since November 2009. We did come to the conclusion that she probably had one since August because since the beginning of August she was fussy would wake up during the middle of the night screaming. In August we took her into her primary doctors office and she was fully checked out. Later that week we took her to Gillette to have her shunt checked and they also suggested to have her urine checked out. Apparently, they did the urine analysis, but failed to do the complete urine culture. After two weeks on medicine she completely changed and was back to sleeping through the night. I don't blame anyone because mistakes can happen, I just feel bad because we thought we had all our bases covered and Cora is the one who suffered from it all.
We are looking forward to Ben's 30th birthday, Cora's 2nd birthday and Christmas. This weekend we are going to get our Christmas tree. We do it every year for Ben's birthday and really enjoy it! Our inside of our house has been decorated since the 18th so it will be nice to finally get our tree. We love Christmas and I think Cora does too! She likes looking at lights and dancing in the car to Christmas music. Have I mentioned she is a great dancer? We will post a video of her dancing and you will get to see for yourselves that a great dancer she is. We are pretty proud!
Well, that's it for now. I will make sure to update again soon. Thanks to everyone for being so patient with us as we will try to update more often.
With love,
Ben, Paula, and Cora
October 5, 2010
Hello All,
Thursdays appointments went very well. We were at the hospital from 7:50am until 2:00pm. It was a long day, but Cora did an excellent job! She laid very still while they did the CMG. She actually fell asleep for part of it. During both the CMG and VCUG she needs to lay extremely still so that they can get a correct reading. She also had a ultrasound and did a great job laying still so that they could get good images. What a great patient we have on our hands here folks!! Both her bladder and kidneys look great and they are both growing like they should.
After the tests and the ultrasound she was weighed and her height was taken. She now weighs 30 lbs, 15 oz and is 32.5 inches long. We then met with Dr. Koop (orthopedic surgeon) and talked about her new skills and her left leg. Her left leg is bowed more than her right leg and we were a little concerned about it. He said that as long as she continues to thrive and walk and crawl we won't do any surgery, but if it starts inhibiting her ability to walk in her walker and/or crawl then we will look into it further. They don't like to do the surgery before the child is 4 years old because of the possibility of having to do repeat surgeries to correct it again. He said she looks fantastic and to keep doing what we are doing. We will see him again at the beginning of the year and have x-rays taken.
Our last appointment was with Dr. Wolpert (urologist). He said that she now has reflux going into both of her kidneys (a year ago it was just the one), but he isn't too concerned about it. She hasn't had a UTI since November 2009 so we will continue with the same regime of medicines. It's obviously working for her so why mess up the system! We will see him again in 6 months. If she does have another UTI before then she will be reevaluated for a procedure where they go in and shoot medicine up to her kidney to stop the reflux. We could have this done right now, but it's a surgery so why put her through it if she is doing just fine with the medicine. The one good thing about doing the procedure would be that she wouldn't have to be on medicine anymore. We talked about it and decided that maybe in a year or so we can have it done when she is a little older. The big picture is that the medicine is working and she is doing well on it so lets not mess with it.
Cora amazes me everyday!! She just started crawling September 20th and she now moves so fast it's incredible. She opens the frig., closes doors, and even "locks" herself in her room. Last night she was in her room after reading books and she wouldn't let us in. I would knock and then open her door, but I would only get it about 5 inches open and she would slam it shut. Then I would knock and say "Cora where are you? Can I come in?" She would knock back and laugh her crazy, devilish laugh. It was absolutely hilarious! It's so funny because she knows right from wrong, but usually chooses to test us.
She is still going to PT twice a week. Lately, since she started crawling, she doesn't like walking in her walker. We do work on stepping side to side across the couch and she is periodically moving her legs by herself. I will put her in her walker and she just cries, but sometimes she will actually move a few steps and then want to quit so we just move onto another activity. She works hard and it definitely shows off, we just need to keep at it while reminding ourselves that she is just a child. We will continue to work hard so that we may reach our goal of walking consistently in her walker by her second birthday. Speaking of her birthday, I can't believe it's in 2 months! It's crazy that she will be 2 already!! It has gone by SO fast.
Well, that's all for now. Take care and enjoy this beautiful weather! Today in MN it was mid 70's!
Love,
Ben, Paula, and Cora
September 22, 2010
Hi Everyone,
Cora is crawling ALL over!!! Like I said in the previous post she finds ways to move around the floor like crazy, but on Monday (2 days ago) she started crawling. Before she would move her legs once or twice when she would start to crawl but now she is moving and there is no stopping her! She loves it and thinks she's funny. I actually brought the camera to show Stephanie on Tuesday just in case Cora was in one of her moods where she wouldn't do it, but to our surprise she actually crawled for Stephanie. We are continuing to work on her moving sideways across the couch to get toys. Tonight we put markers on one side of the couch to get her to walk to get them. She walked alongside the couch and got them with a little help from us. We kept moving the markers to the other side of the couch and she walked across the couch 10 times! This is great because we usually aren't able to get her to go that many times before she decides to quit. She is motivated, but has her moments.
Cora now has a devilish laugh and it's quite creepy! She has many laughs, but just recently started this creepy one. When we hear it we know she is going to do something or is already up to something. She also copy's everything that we do. I just know that one day in PT she will say "oh, shit" and Stephanie and I will do everything possible to not laugh. For example, Ben was reading the paper and Cora picked up a random piece of paper and started to "read" it. Little smarty!!
Her "talking" and saying sounds has come a long way in just the past few weeks. The other day she was saying "ass" but we quickly figured out that she was just saying "sss". Thank God! We know it will take a while, just like her mobility, but we read as much as possible to her and continue to do our flash cards everyday.
Cora is not sleeping well again. She wakes up in the middle of the night screaming! We really hope it's just a stage, but it's been going on for over a month now. She also used to take such good naps, but recently started not wanting to lay in her crib and when I put her down, she screams. Last week I let her cry it out and one day she screamed for a whole hour and the next day she threw up! Great, now what do I do!?! She also cried so hard that she broke blood vessels in her cheeks. She had little purple dots on her cheeks. Poor thing! So, needless to say, now I just pick her up and hold her until she falls asleep. You gotta do what you gotta do, I guess!
This weekend it's our anniversary. I can't believe we've been married for 6 years already! Where does the time go? I look back at our wedding pictures and remember the day like it was yesterday. Last year we went on a little trip, but this year we are going to stay around here and go out to eat. We also have the Spina Bifida Association picnic this weekend. I am excited to meet other families who have children with SB and learn all that I can from them. It should be a lot of fun and we are excited to go.
Well, this is all for now. Please think of us next Thursday as we have all of Cora's appointments that day. We hope her kidneys continue to look great and that everything goes well. We will update soon after her appointment.
Love,
Ben, Paula, and Cora
September 9, 2010
Hi Everyone,
I can't believe it's been since August 2 that I've updated. I apologize to those who check our website frequently. It's been a difficult month here at the Gryskiewicz household. My grandpa passed away on August 20th. He was 83 years old and the most thoughtful, caring man you ever met. He always would tell me that he prays the Rosary for Cora and us every night. Cora and I saw him 2 days before he passed away and he knew who we were, he was just very tired. Cora always called him "pa-pa" and he loved it! I am so glad I decided to go for the day and visit. It was a nice visit, but hard to leave because I knew that it would be the last time I was able to hug and kiss him. We said goodbye and Cora said "pa-pa" shh... because he was sleeping at the time we left. The mind of a child! Once he passed away we went to their house and stayed for four days. When we got to my grandma and grandpa's house Cora was looking all over for "pa-pa". It's hard because she doesn't understand yet. I think the hardest part will come when she stops looking for her "pa-pa".
We've had a little break from PT since her physical therapist was on vacation. We welcome it though, because the only time Cora gets a vacation is when Stephanie takes a vacation. We sure do miss our Stephanie when she's gone! Cora got extremely excited today when I told her we were going to see "Stephy". We had therapy today for the first time in a week and a half and she did okay. I think the terrible two's are kicking in!! She will refuse to practice walking and lift her legs so you can't put her in her walker or stander. Yesterday I tried putting her in her stander and I couldn't get her in so we waited until dada got home from work. She is a determined little girl with her own mind to do what she wants to do. Our goal is still to be walking well in her walker when she turns two. We will keep working hard to achieve that goal. We have less than 3 months so we better get going and Cora better start wanting to walk. She does like going up the stairs so when all else fails we work on that. The stairs helps her work on weight shifting so I am happy she will do that. She is stubborn and gets it from me! I might as well admit it because those of you who know me know I am stubborn as heck. I tell things like they are and have nothing to hide. Oh my, we may have problems when Cora starts school!!
We keep busy with physical therapy twice a week. We also have playgroup twice a month. So, some weeks we have 2 appointments and some we have 3. On the days we have nothing we appreciate our time at home playing, working on walking, and coloring. Cora loves to color, but she loves pulling the caps off the markers more! She will get them off and on and do it for what seems like hours. Also, she moves around the floor like crazy and loves kneeling. She will pull away from you and do "no hands" and laugh. She is a little daredevil, but with all she has going on I wouldn't have it any other way.
We have many BIG appointments coming up on September 30th. We actually have 5 appointments that day! We have her CMG, VCUG, ultrasound of her kidneys, meet with Dr. Koop (orthopedic surgeon),and we meet with Dr. Wolpert (urologist). It will be a busy day, but we are so happy we have it all in one day compared instead of five appointments taking up five days. We hope her kidneys continue to look well and that her reflux hasn't changed. Luckily, Cora hasn't had a UTI since November and we are ever so grateful! She is on medicine daily as a prophylaxis. She alternates every two weeks with two different medicines. The one makes her little butt extremely red so we are hoping to discontinue that one and just stick with one medicine.
Fall is here and hopefully to stay. We are sure enjoying this weather. Last week it was in the 50's so I decided to make a apple crisp and thought of our friends Jessica and Dustin. They love the fall weather as much, if not more, than we do. It was so yummy and gone within a few days! This weekend we are going apple picking and we are SO excited! I can't believe it's that time of year already. I wish the 50-60's temps. would last three months so we could enjoy it more. We have many leaves in our yard from our neighbor's trees and absolutely love it!
I hope to update again before Cora's big appointments at the end of the month. It's not a guarantee, but I will try my best. Thanks to all of you who continue to check in on us. We appreciate the many thoughts and prayers that come our way.
Have a great day and enjoy the brisk fall weather!!
Love,
Ben, Paula, and Cora
August 2, 2010
Oh my goodness!! I can't believe it's almost been a month since I last updated. The Summer is definitely going by too fast! We have been busy as usual with Cora's appointments, practicing walking and crawling, and trying to enjoy as much as we can of Summer. We have been enjoying lots of walks and a few outdoor concerts.
Cora seems to be growing up way too fast and is such a big girl now. Since she was a year old she has been brushing her own teeth in the morning (I, of course, make sure I brush them at night too). She also tries to brush her own hair. She also points to her butt when she poops. Just recently she started telling secrets which is adorable! Also, when you ask her what time is it she looks at her hand as though if she had a watch she could tell you. She is so smart (biased, I know!). I really can't believe in 4 short months she will be 2!
We are continuing to work on her talking. She says a few words, but knows what most words mean, which to me is better than being able to say everything. All the doctors and therapists aren't worried as she is concentrating on her gross motor skills so the fine motor skills are on the back burner. This makes complete sense to us since we are always trying to work on her movement. We read at least 8 books a day and she will try to sound anything and everything out so at this point we aren't concerned. She does get frustrated though because she can't quite tell us what she wants when she wants it.
Therapy is going well. Stephanie, Cora's PT, is great! She works Cora to the max which is great because I do the same thing at home. A few weeks ago Ben came to one of her appointments and she knows Stephanie and mama work her so she was looking to dada for help. Little stinker! Just this past weekend we were playing downstairs and she was on all fours and moved her leg forward all by herself. We were so proud and kept cheering her on. Cora was happy that we were proud so she kept doing it. It seems like each week her legs get stronger and stronger. I know when she is working hard because her legs start to shake and the poor little girl sweats like crazy. The stronger her legs get the faster she will be walking by herself in her walker.
We hope all of you are enjoying your Summer. The best part of Summer is "Miracle Treat Day" in August where at least $1 will be donated to Children's Miracle Network and Gillette Specialty Hospital in St. Paul is a Miracle Network Hospital. Last year they raised over 4.5 million dollars! This year it's this Thursday August 5th, 2010 so don't forget to get a blizzard! Plus, it's for the kids so they are calorie free on August 5th.
Love to you all,
Ben, Paula, and Cora
July 6, 2010
Hi Everyone,
Here at the Gryskiewicz household we are so glad June is finally over!! During the month of June Cora had three appointments each week. We were so busy that we can't believe it's July already!
Cora had her 18 month appointment and weighed in at 27lbs, 7 oz and 30 inches long. She is a growing girl! Dr. McCord said she is doing great and that we are doing a great job which is always nice to hear. She was cathed to check for a UTI, but it came back negative. So she hasn't had a UTI since November 2009 and we are so happy!! He said that the mix of medicines that she is on is obviously doing a great job.
On June 19th Ben, my dad, Ben's dad, and Ben's brother poured our concrete walkway. We originally had it scheduled for the beginning of the month, but rain stopped them from doing it. It looks so nice and I am so glad it's finally done. It's amazing with a house you never run out of new projects to do.
On the 28th Cora had her appointment with Dr. Koop, her orthopedic surgeon. She had x-rays prior to seeing him and her hips look well. So far there is no surgery needed which is a big relief. It's always nice to go to an appointment and hear good news. We also showed Dr. Koop and his nurse, Patrick, how she walks with her walker. On that particular day I barely got her in it and away she went. I think she wanted to show off to the boys! Oh no, what are we in for!!!
We had a great 4th of July weekend. On Saturday we got in one last day of strawberry picking. We picked 3 times this year and every time Cora had a blast. I made some jam for the 1st time and I have to say it's delicious!! Nothing beats homemade. In the evening we went to Normandale Lake as Bloomington has all their 4th festivities on the 3rd. Then on the 4th we went to my aunts' lake house in Northern Wisconsin. Cora didn't sleep the whole way there. I think she was excited to see her aunt, uncle and cousins again. Even though it rained we had a lot of fun. Plus, they live in Illinois so we haven't seen them since Cora was 3 weeks old. Also, my cousin Tosh was there with his new fiance so we had the chance to meet her as well. By the time we arrived home late Sunday we were all tired and ready for bed. Luckily, Ben had Monday off so we all slept in. If Cora doesn't hear us up in the morning she will sleep until 9ish. Hey, I am not going to complain!!!
We continue to practice walking everyday and Cora also continues to go in her stander for an hour everyday. She works so hard, but we are still finding some time to play and be a "normal" kid. She loves her pool and every time she goes in it mama and dada come out just as wet as she does. We actually have more time to play in the morning now that she takes only one nap. She sleeps from 1:30pm until 4:30-5pm. I usually have to wake her up. We decided to go down to one nap since she has PT every Tue. and Thurs. mornings. It just doesn't make sense to have some days with 2 naps and others with only one. It gives me time to do housework, check email, and get supper ready without a little monster helping me.
We hope you are all enjoying your summer!! Thank you to all who continue to check in on us. We really appreciate all your thoughts and prayers. If you have time leave us a message.
Love,
Ben, Paula, and Cora
June 17, 2010
Hi Everyone,
Since we have exciting news I will start with the most current events and go backward.
CORA IS WALKING!!! CORA IS WALKING!!! CORA IS WALKING!!!
Yep, that's right you heard correctly, Cora is now walking in her little walker! We are so proud of her! It all happened last Thursday at physical therapy. I told Stephanie (Cora's pt) that when we were practicing, it was like she wanted to move her legs, but couldn't quite lift it up. Well, next thing I knew we were practicing at pt and she moved her legs. She gets her legs twisted up a little, but is getting better and better everyday. I had tears in my eyes and wanted to cry, but I held it in. It was such a great feeling and I was so excited for her! Some days it seems like all we do is work, work, work, so now it's good to see the work paying off. The best thing is that she LOVES her walker, in fact, she loves standing. Thank goodness she does otherwise we would have trouble making her practice. Not that it's a sure thing, but Stephanie said we may be able to skip the gait trainer. This would be fantastic! If we could skip the gait trainer, we would be closer and closer at walking more and more unassisted. Granted, we know she will always need some kind of assistance with walking, but if we can avoid a step, why not? Overall, we are so excited and thrilled that she is doing so well and couldn't be more happier for her!!! GO CORA GO!
Cora had her 18 month pictures taken at Target and they turned out great. She looks absolutely adorable. We took some with her walker and some without. When Ben went to pick them up the lady asked if he would sign a wavier so that they could use some of Cora's pictures. We aren't sure if she will be in the portrait gallery online or just in the store. Either way she is a superstar! We may have a problem though, we think she knows she's cute.
Memorial day weekend we went to Red Wing for a picnic. It was a lot of fun. We went to a park that was inspired by two mom's whose children have cerebral palsy. Along with steps there are ramps that take you everywhere on the playground. We were excited about it and anxious to go back once Cora is walking more. All in all, it's a great idea and allows children with disabilities to play alongside other children.
On Memorial day we went to Mattock's park in St. Paul. This is the park that I used to take Christian and Anna to so it brought back many memories. We came home started to make lunch and ended up going to the ER. Cora fell in the family room and bumped her head. As you may remember, anytime she bumps her head, even just a little bump, we need to take her in and get it checked out. It could affect her shunt and the doctors all say to bring her in to be on the safe side. When the doctor came in she reassured us that it was good we brought her in and that we need to stay on top of things especially when we are dealing with her shunt. After an exam, and three hours later, we walked out of the germ infested ER with a bump on the forehead and a little cut under her tongue. Poor little girl.
Cora has a new cousin and we have a new niece. Alice Mary was born on May 26th at 11:50am. She is beautiful! Sarah and TJ now have 3 little girls. While we were visiting both Lucy and Claudia were excited to hold little Alice. They are such good helpers.
Well, that brings us back to when we last updated. Everyone at the Gryskiewicz house is healthy and well. We are enjoying walks in Cora's wagon and walking in the grass with her walker. She loves being outside except when it's very hot she turns red, quiet and you can tell she wants to get inside where it's cooler. We are usually only in the direct sun for 15-20 minutes because the medicine Cora is on causes her to burn very easily. Of course, we lather sunscreen on. In general, all of us shouldn't be in the sun very long so we can learn something from Cora. Cora has her 18 month appointment tomorrow. I can't believe she is 18 months already. Time sure does fly! It is bittersweet seeing her grow up so fast, but we love her personality. She is such a happy girl that we really have nothing to complain about.
Thank you all for your continued prayers. We appreciate them all. We can see all your prayers in Cora's everyday progress. We hope she continues to shine and do well in her walker. Sometimes when we are practicing she walks as if she has been walking for years other times she is tuned in to whatever is around her. We love her so much! There is new video of her walking on our website. It is of her walking the second time across the physical therapy room. Just click on Videos here or on the left. Enjoy!
Love,
Ben, Paula, and Cora
May 18th, 2010
Hello Everyone,
I hope this update finds you all well and enjoying the HOT, HOT weather. We have so much to share about our busy last couple of weeks, so I will try to keep it short, but there are no guarantees.
The NICU reunion was a lot of fun! Unlike last year we didn't see anyone we knew, but we still enjoyed ourselves. Most of the families that attend the reunion had children that were in the NICU because they were born prematurely. I still remember when Cora was in the NICU one of the nurses said that she was the biggest baby in there (she was only 7lbs!). At the reunion we saw lots of twins and triplets and Ben and I just looked at each other with exhaustion! I honestly couldn't imagine, but twins do run on both my mom and dad's side and also on Ben's mom and dad's side so I should watch what I say! Yikes! All in all the reunion was fun and we enjoyed pizza, popcorn, cake, and cotton candy-there goes my diet.
The next weekend was cousin Annabelle's 1st birthday party and Mother's day. I can't believe that she is a year old already. Once again we snacked on yummy food and birthday cake. It was a lot of fun and also nice to see everyone. Then on Mother's day Cora and I came into the family room and Ben had a spa ready for us. It was so cute!! We soaked our feet in warm water with baking soda. We each had our own chair and bucket along with a magazine and coffee for mama and book for Cora. Cora also did some artwork for mama that is hanging up in the family room. It looks wonderful! We then had breakfast and Cora took a 3 hour nap!! Once she woke up we went to the park and had a picnic. Cora also went on her 1st slide and loved it! We also took a long walk on the trails and then called it a day. It sure was fun and by the end of the day we were all tired and ready for bed.
This past weekend we had the Spina Bifida Spring Conference at the Grand Casino in Hinckley, MN. It was wonderful and we are so glad we went. I saw a friend of mine who also has a son with SB and met other moms who have children with SB. We were also able to see how the public schools work with children who have SB and are looking into what the best option will be for Cora. The BEST part for me was when someone came up to talk to us they didn't ask "Is she walking yet"? As if to try to compare her with their children. This is the question that bugs Ben and I the most. Whenever we go somewhere (Target, Church, etc.)if someone stops to look at Cora or say "hi" usually the first thing they say is "is she walking yet"? and we always respond with a simple "we are working on it". There is no point in going into detail with a complete stranger that Cora has Spina Bifida and she will always walk with assistance.
Cora continues to fight this cold that she's had for 13 days now! This is why we DON'T expose her to people who are sick!!! Sorry, but it's frustrating when people don't understand that Cora has a weak immune system so it takes her twice as long to get rid of something once she has it. I took her to the doctor yesterday because it looked as though someone beat her up. Both of her eyes were swollen and her right eye was all red and watery. She was also coughing like crazy and her nose was running like a faucet. The doctor congratulated me because at 17 months old this is her first real yucky cold. He also said that it looks as though she may have a little sinus infection because the cold just started getting worse this weekend and under her eyes it's quite red. Apparently, we need to treat any infections as quickly as possible because any infection can lead to her shunt track getting infected. I never thought of this and am so glad we went to the doctor. He put her on medicine for 10 days and hopefully the nasty cold will clear up soon too.
Today she is looking better already, but she still has that nasty cough.
Well, thank goodness I didn't make any guarantees that it would be short!! We just had a lot of information to share with everyone. Tomorrow it is Grandpa Gary's Birthday-Happy birthday!!! Also, auntie Sarah is due May 29th with her 3rd child so we can't wait to hear the news!! Please pray that everything goes well for Sarah and the baby.
Love to you all,
Ben, Paula, and Cora
P.S. Ben did update the pictures a few weeks ago so there are many new ones to look at. Enjoy!
April 22, 2010
Hi Everyone,
Cora got to see her favorite aunt Tina last weekend. (Edit after Tina left a message)
It's been a little while since I have updated and I apologize. We've been pretty busy, it's no excuse, but it will have to do. Besides if more people wrote messages I would probably write more often. Hint, hint!! We really do appreciate those of you that do write messages. I read them to Cora all the time.
We hope you all had a nice Easter. Cora looked so beautiful in her Easter dress! Ben will update pictures soon. I try to take a few everyday so there are quite a few to upload.
Since I last posted dada was able to come to a physical therapy appointment. He came to one last summer, but this was his first time meeting the GREAT Stephanie. Right now she also has a wonderful student, Nicole working with her. She also does a great job with Cora. Cora did well when dada was there. It was as if she was showing off to him. Ben loved how Stephanie made Cora work and how she encouraged her to do her best. I was glad he came as he finally got to see what I have been talking about all this time. He is going to try to come to a physical therapy appointment every couple of months.
Last week we had our usual physical therapy appointments along with a home appointment with the early childhood teacher. Cora is doing great and right where she should be according to the teacher. We will see her again next week at the playgroup. I am currently trying to find/organize a little playgroup with kids Cora's age. I have had a few contacts, but haven't met with anyone yet.
Cora also ran a fever last week from Thursday afternoon/evening until midday Saturday. It ranged from 100.5 to 103.2. She wasn't herself at PT on Thursday, but had no fever until later that day. I wanted to get her into the doctor, but they wouldn't see her until she ran a fever for 48 hours. Did Obama care kick in already?!? Needless to say, by Saturday afternoon she was starting to act more like herself. For the next few days we just watched her carefully making sure it wasn't her shunt.
Today at physical therapy Cora went on the light gait (I think this is what it was called!). Basically, she was strapped in a harness on top of a treadmill. The harness held her up while she took steps. Of course, Stephanie and Nicole helped her along the way while mama blew bubbles trying to keep her upright as much as possible. She did very well and I was SO proud of her. She was taking lots of steps and I think she really enjoyed herself. I hope that she continues to do well on this and then we can go back to the gait trainer. Please say lots of prayers that she improves each and every week!
This weekend we are going to the NICU reunion. It will be lots of fun and we hope to see some of the nurses that took great care of Cora while she was in the NICU. Last year we saw 1 or 2 nurses, but didn't recognize anyone else. As Cora gets older she will enjoy it more as they have lots of fun activities for the kids.
This is it for now. I will have Ben upload the pictures after the reunion on Sunday. There will be many to look at!
Take care and have a wonderful weekend!
Love,
Ben, Paula, and Cora
March 31, 2010
Hi Everyone,
I hope you all were able to read Ben's last post. It sums up how we (and many others) feel about the current health care debate in our Country. Luckily, Ben was able to put how we feel in words as I was just too upset and encouraged him to do so. He did a great job! If you didn't have the chance to read it and would like to go to updates and click on Archive.
On a lighter note, I can't believe how nice it is outside. It is too warm too early-I haven't shed all my baby weight yet and with this warm weather you can't cover yourself up like you can in the winter. I better get a move on!
Cora is growing and getting so big! I can't believe she will be 16 months on the 8th. We still have physical therapy twice a week. She does well depending on the day and her mood. One day she will work really hard and the next she will be distracted by everything around her. Overall, we are so proud of her and her hard work. Yesterday after her pm nap we were practicing what we did in PT with her walker. I put her in her walker and she immediately started moving her hands to turn around just like she did in PT earlier in the day. She didn't want to walk forward, she wanted to turn and so we did. It amazes me how she remembers things. She sure is a smart little girl!! Biased, I know!
This past weekend we went to Target Field for the Twins open house. Even though the Twins weren't playing (the Gophers were) it was pretty exciting. It was great to sit in the season ticket holders seats ($55/game) and realize that we will never sit there again. Basically, we were able to go anywhere except the boxes on the third floor. The new field is nice, but I will miss the Dome and I am sure everyone else will too when it is cold and rainy.
We are looking forward to Cora's second Easter. This year it will be fun for dada and mama to hide the eggs and hopefully next year Cora will enjoy finding them. Coming up we also have the NICU reunion at the end of April. We hope to see some familiar faces and show the nurses how big Cora is getting. In May we also have the Spina Bifida Association Spring Conference in Hinkley, MN. We are excited to learn more about the various activities available for our family and families like ours. We hope to meet many people with precious little angels just like Cora.
Cora sure loves going for rides in her wagon. The whole time she is hanging on tight and laughing. I hope this update finds you all well and enjoying the weather. We have many pictures as we haven't updated them on our website in a long time. We will get them up as soon as we can.
Thank you all for your continued thoughts and Prayers. We really do appreciate them!
Love,
Ben, Paula, and Cora
March 22, 2010
Dear President Obama,
I really don't appreciate you completely ignoring the American people! The majority of Americans do not want the so called health care reform that you and your friends in congress just recently passed. You ran your presidential campaign on being bipartisan, what part of the health care reform process was bipartisan? I guess you probably consider the last health care summit, when you invited republicans to join in on the talks, bipartisan, though they suggested starting over, and were largely ignored.
Can you explain to me how we are going to pay for the $940 billion price tag of this bill? (I'm guessing $940 is a low estimate!) I should rephrase my question, can you explain to me how my children and their children will pay for this legislation? Ahh, the way of the democrat, tax more, spend more, spread the wealth!
Speaking about my children, there are no reassurances that with this legislation, and future legislation, she will receive the highest quality of care, which she has now. America has (had) the greatest health care system in the world and your health care reform will sink it. Maybe not with this first bill but more to come. The insurance companies will have to raise premiums to pay for the regulation, no pre-existing condition for example. The premiums will get astronomically high. Insurance companies go out of business and you step in and add a public option. With the public option health care will be rationed. The government will get low on funds and how do we make up the depleted funds? Higher taxes and rationing. I do not want government bureaucrats deciding the fate of my daughters health care.
By the way, I've just received word that, because of this health care (insurance) reform, that all pay raises in my company are suspended due to the likelihood of insurance premiums skyrocketing. I can guarantee my company isn't the only one in the private sector banking on higher premiums. What does that mean for the recession we are in? It will get longer and worse. If people can't expect a pay increase, they will not spend any extra money, even with your cash for clunkers and first time home buyer tax credit. How did the cash for clunkers program work out anyway? I don't see too many people rushing to purchase a new vehicle now. You just made it easy for people who were already planning on getting a new vehicle to get one.
Mr. President, what I am trying to say is that, in the words of Rush Limbaugh, you have failed! You have failed the American people. You have failed a great health care system! You have failed the greatest nation on earth. If I were you, I would bury my head in the sand and hope that nobody trips on my ass and finds me.
Thanks for your time (even though I know you won't read this since its not praising you!)
Ben Gryskiewicz
(Ben took the words right out of my mouth!- Paula)
P.S. Cora is doing great, well that is, until 2013!!
March 9, 2010
Hi Everyone,
It seems like forever since I last updated, but it's only been 2 weeks. I hope this update finds you all well and enjoying this wonderful Spring weather. This past weekend we were quite busy. Ben and my dad put a new side door and a screen door on our house. It took them a long time and we were quite thankful that my dad knew what he was doing. I think Ben could have done it by himself, but it would have taken twice as long. In other news we FINALLY have curtains in our family room! We have been here almost 2 years so it was time to get them. They look great and really add to the room. Ben also put together Cora's wagon that she got for her birthday. She went for her first ride Sunday afternoon and LOVED it. She just hung on and laughed the whole way. It was very exciting and we can't wait for the rain to stop so we can go again.
Cora had her 15 month appointment today. I can't believe she is 15 months already!! Time sure does fly! She is 28.5 inches long and weighs 24lbs, 3oz. Her doctor said she looks great and we are doing such a great job with her. Since she hasn't had a UTI since November (hurray!!!) we didn't have to test her for one today. Dr. McCord said that I do a pretty good job knowing when she has one so we won't put her through being cathed. She screamed when she got her 3 shots, but quickly settled down as I was dressing her as though she had to be a big girl and stop crying. I wiped her rolling tears from her cheeks and told her I loved her so much and that it was ok to cry when she hurts. She just hugged me close and said in the saddest voice, "ma-ma". Poor little thing!!
Physical therapy at Gillette is going well. We absolutely love Stephanie (Cora's pt) as she works so well with Cora. We have been practicing standing at home in a little walker. She does a great job and I am so proud of her! We have been practicing at Gillette with the gait trainer and last week Cora was taking all of her steps with her right leg, but had a little trouble with the left one. We will keep practicing and she will get there. She is quite the determined little girl and amazes me everyday!
Thank you all for all your thoughts and prayers. We really enjoy them and Cora especially enjoys it when I read the messages on the board to her. We will update again in two weeks.
Love,
Ben, Paula, and Cora
February 22, 2010
Hello Everyone,
Happy Birthday auntie Christina!
We have been enjoying the warm sunshine and the 30 degree weather here in Minnesota. Cora has also been enjoying riding in her sled. I ask her if she wants to go in her sled and she points to it and then points outside. What a smart little girl! Biased, I know!
We have been keeping busy, like always, going to PT twice a week. I am so glad she is going twice because I really do notice a difference and the more practice in the gait trainer the better. She is now up to 53 minutes a day in her stander at home. She really doesn't seem to mind as long as she has something to play with. Some days she isn't having it and we go less time, but then practice standing independently by the couch.
This week we will go to playgroup for the first time and I am excited and nervous. It will be fun seeing her interact and watch kids her own age. The physical therapist from the school has already told me that Cora will probably just watch the kids the first time and then may start interacting with them as she warms up.
As many of you may know Cora has been waving like crazy for a while. A month and a half ago she would only wave when she wanted to, but since the end of January she waves to anyone and everyone (with the exception of the girls at Gillette). I think she knows that when we go to Gillette she has to work and doesn't want to wave. Last week in church a lady behind us gave her a little wave and she responded by laughing and waving her arm so big that her whole body was shaking. I think the lady felt bad for causing such a scene. We couldn't help but laugh! Just this past weekend though she has changed her wave. It's like mom, dad, that wave was getting too old, here's my new wave. Absolutely hilarious! She now just moves her fingers in a squeezing motion. Apparently, it's a much cooler wave.
Hope this update finds you all well! Thank you for your continued thoughts and prayers as we really appreciate them and they all mean so much to us. Also, if you would like to know when our website is updated, enter your email address on our home page.
Love,
Ben, Paula, and Cora
February 12, 2010
Hello Everyone,
Welcome to our new website!!! We are so happy to have a new site and it''s all thanks to Ben. He put lots of long hours and hard work into building us a great site. Please look around and see all the new information that it has to offer.
On Thursday, Cora had an ultrasound of her kidneys and met with the urologist. She did a great job laying still for the ultrasound and the ultrasound tech was impressed and I am sure if auntie Tina was scanning her she would've been impressed too. After her ultrasound we were supposed to meet with Dr. Wolpert, but met with his nurse instead. She was very nice, but we felt like we needed to ask questions in order to get any information from her. When we asked how her kidneys look she said that they look absolutely GREAT!!! We are so happy with this wonderful news. After asking for more information she also said that we won't need to see them until September. The regimen of medicine that we are doing now seems to be working since she hasn't had a UTI since November. Since she is doing so well we also don't have to put her on Ditropan. If you remember from previous post the Ditropan didn't go very well for Cora and she started wheezing and breathing heavily. We will continue the medicine that she is on until September and then reevaluate how she is doing. We need to keep her UTI free so that maybe she eventually won't need medicine for prevention.
Last week at physical therapy we started going in a gait trainer. She did well for her first time. We don't have one at home yet, (they are a bit expensive!) but have been practicing stomping so that when we say stomp while she is in her gait trainer she will stomp her feet. Within the past week or so Cora has also learned to crawl backwards. While on her tummy she just stretches her arms and pushes herself backwards. She goes really fast too and before I know it she is out of the room.
Enjoy the new site and let us know what you think. We love hearing from all of you!!
There are lots of recent new pictures for you all to enjoy. Cora is growing up fast! She turned 14 months on the 8th. It seems as though she is doing something new everyday.
Love,
Ben, Paula, and Cora
February 12, 2010
Hello Everyone,
Welcome to our new website!!! We are so happy to have a new site and it''s all thanks to Ben. He put lots of long hours and hard work into building us a great site. Please look around and see all the new information that it has to offer.
On Thursday, Cora had an ultrasound of her kidneys and met with the urologist. She did a great job laying still for the ultrasound and the ultrasound tech was impressed and I am sure if auntie Tina was scanning her she would've been impressed too. After her ultrasound we were supposed to meet with Dr. Wolpert, but met with his nurse instead. She was very nice, but we felt like we needed to ask questions in order to get any information from her. When we asked how her kidneys look she said that they look absolutely GREAT!!! We are so happy with this wonderful news. After asking for more information she also said that we won't need to see them until September. The regimen of medicine that we are doing now seems to be working since she hasn't had a UTI since November. Since she is doing so well we also don't have to put her on Ditropan. If you remember from previous post the Ditropan didn't go very well for Cora and she started wheezing and breathing heavily. We will continue the medicine that she is on until September and then reevaluate how she is doing. We need to keep her UTI free so that maybe she eventually won't need medicine for prevention.
Last week at physical therapy we started going in a gait trainer. She did well for her first time. We don't have one at home yet, (they are a bit expensive!) but have been practicing stomping so that when we say stomp while she is in her gait trainer she will stomp her feet. Within the past week or so Cora has also learned to crawl backwards. While on her tummy she just stretches her arms and pushes herself backwards. She goes really fast too and before I know it she is out of the room.
Enjoy the new site and let us know what you think. We love hearing from all of you!!
There are lots of recent new pictures for you all to enjoy. Cora is growing up fast! She turned 14 months on the 8th. It seems as though she is doing something new everyday.
Love,
Ben, Paula, and Cora
February 9, 2010
Hi,
Let it snow, Let it snow, Let it snow!!! Oh my, do we have lots of snow! And yet, they are complaining on the East Coast about all their snow. Come to Minnesota and you will see snow! Cora and I had lots of fun sledding yesterday. She absolutely loves going fast in her sled and couldn't stop laughing while mama was pulling her. I bet she would laugh harder if, while I was running, I fell face first in the snow. We were outside for 20-25 minutes and came inside when she started to shiver. Poor little thing!! Luckily, she was dry and the only thing exposed in that cold air were her cute cheeks. Once inside she fell fast asleep in her crib and took almost a 2 hour nap.
On Thursday we have her urologist appointment at Gillette in St. Paul. It's been kind of nice only having to go every few months or so. Last year at this time we were at Gillette every week for an appointment. We will meet with Dr. Wolpert to discuss one of two surgical options. We did discuss this back in the November post. I am nervous and excited to see how her kidneys are doing and if we will do the procedure soon or if we will wait. Keep us in your prayers that her kidneys still look great.
We still are doing physical therapy twice a week at Gillette in Burnsville and the teacher from the school system only comes once a month now instead of every two weeks. The physical therapist doesn't come anymore as we will start seeing her at play group on Friday's. We are excited to go to play group and see other parents and children Cora's age.
This past weekend we were excited as it was our first relaxing weekend we've had in a while. We had nothing planned and stayed around home which was nice for a change and Ben fixed the snow blower just in time for the freshly fallen snow.
Hope this message finds everyone well and warm. I will update later this week with information on her appointment.
Love,
Ben, Paula, and Cora
January 25, 2010
Hello Everyone!
It's hard to believe that Christmas was already a month ago. That leaves us with only a few more months of winter, we hope! Cora is already 13 going on 14 months and she is getting so big. I constantly remind myself to enjoy every moment of it because before we know, it she will be all grown up and off to kindergarten.
We had some exciting news since we last updated in the beginning of January. We went to Atlanta to see Brian, Melanie, Christian, Anna, and John for my birthday. For those of you who don't know, this is the family I used to nanny for. They are like family to us and I love them all very much! I have never flown and neither has Cora so it was VERY exciting for us. I loved it so much that I asked Ben if we could do it every weekend. Cora did great on the plane. Ben, with the help of Brian and Melanie, planned the whole trip and it was definitely the best birthday present ever!! Christian made me a cake with help from Melanie. It was delicious and so sweet of him! We hung out at their house the whole weekend which was relaxing and fun to catch up with one another. Before we knew it, it was time to come home and I was so sad. The trip was so special to me and I wish they lived closer.
Cora is doing great with standing and her legs seem to get stronger as we continue practicing and practicing. She now dances when she is standing. It is so cute! She moves her cute little butt when she dances. Adorable, absolutely adorable!!! She continues to go in the stander while mama is on the treadmill. If she has to work so does mama. She is now up to 40-45 minutes a day. Some days she starts to cry and whine after 30 minutes so then I will just take her out and work on transitioning from sitting to standing. Usually, as long as she has toys to play with, she does just fine the whole time in her stander.
We continue to have PT twice a week and home PT twice a month. In February we will start going to a play group on Fridays. I am happy she will be with kids her own age as older kids tend to scare her a little. The home PT says that's common especially with Cora's limited mobility and that we shouldn't force it. Home PT and the early childhood teacher came this morning and said she is doing very well with her fine motor skills. Some things are in the 12-15 month range and Cora has been doing them for months. This made me so proud of her. For all she has gone through and all that has yet to come she is an exceptional little girl.
Thank you to all who continue to follow with our website and I will try to update every couple of weeks (one of my New Year's resolutions). Thank you also for all your thoughts and prayers that you write on our website. We appreciate each and every one of them.
Have a great week and we'll update again soon!
Love,
Ben, Paula, and Cora
January 5, 2009
HAPPY NEW YEAR EVERYONE!!!
We hope everyone had a great Christmas and Wonderful New Year. We sure did. It went by fast, just like it always does, but we enjoyed every bit of it. We went to Christmas Eve mass at our Church and it was packed. It amazes me how people seem to go to Church just once a year for Christmas! Apparently, they are good the rest of the year so they don't have to go. We came home and ate supper and Cora got to open some of her gifts. She absolutely LOVED the paper and boxes more than the actual present. How soon that will change!!! Christmas morning she opened the rest of her gifts and then we went to grandma Cheryl and grandpa Greg's house. We were able to see uncle Nick and aunt Ashley there as well. Cora had a good time. Next, we were on our way to grandma Linda and grandpa Gary's house. We ate again and opened presents. We arrived home late Christmas night and, after all the traveling, it felt good to be home. The Holidays are bittersweet like that, you try to see everyone and you feel like you are running around with your head cut off.
With the New Year brings a new schedule of appointments. Cora will continue to have the early childhood teacher and PT come to our house the second and fourth Mondays of the month. She is doing great and the teacher says she is right on track. Cora is very smart and we are just looking to help her gross-motor skills. She will now have PT at Gillette on Tuesday and Thursday every week. Cora has started to move from sitting to pulling up so we want to work her extra hard as long as she lets us. Starting in February she will have play group on Fridays. It will be nice to get into a group with kids her own age. This new schedule will keep us busy so the days that we aren't at appointments will consist of playing and staying home. The new schedule only leaves every other Monday and every Wednesday free so we sure will enjoy it.
Cora is doing a wonderful job working on standing up, crawling, and sitting up from laying down. I try to combine playtime with work time so that we can get her moving. I think she is enjoying time at PT now that she can move more. We absolutely love her physical therapist as we can rely on her for answers to our many questions, even non physical therapy questions.
Cora is also trying to say so many words, but they just don't quite come out yet. She says mama, mom, dada, and up. She is also waving, clapping and continues to point at everything! We are trying not to talk "baby" to her. We call people by name and try to talk to her like another human being and not a baby, with discretion, of course!
Hope this update finds you all well and continuing your New Year's resolutions!! Thank you for your continued thoughts and Prayers.
Love,
Ben, Paula, and Cora
December 20, 2009
Hi Everyone,
I apologize for how long this update is and for how long it has taken me to update. Cora had a busy week and lots of appointments. I actually started updating on the 16th, but Cora and I were sick this past week so I haven't felt like updating. I hate it when I am sick and especially hate it when Cora is sick because then she misses important appointments. This past week she missed PT because she threw up. Poor little thing! She has enough stuff going on with her already that we don't need to top it off with being sick. Our main goal this season is to keep her as healthy as possible especially because of her already weakened immune system. If we seem overly protective, we aren't, we are just protecting her and her delicate immune system.
Cora's birthday came and left in a flash! On her birthday we went to the MOA and went on the Carousel. I wasn't sure if she liked it because she didn't cry, but stayed pretty close to make sure I wasn't leaving. Then we went to see Santa. She screamed and wouldn't let my hair go. Needless to say I picked her up at the same time that I put her down and we were done with Santa. When we got home we had cake. Cora loves cake! It was her first time having it and hopefully will be her last for a while. Like we previously stated we need to make sure she stays at a good weight because there is such a high chance of her being overweight.
We decorated all last week for her party on Saturday. It was a lot of fun and thank you to all who could make it! We had tons of food and the best looking cake ever!!! Ben and I decided we wanted to make Cora's cake for her birthday since it would be a lot more special. We had a fun time making it and our lack of sleep showed by Saturday night. There are pictures of her party and cake for you to look at under cora images. The one we made is the two-tiered one with bright pink, purple, yellow, and green balloons, presents and stars on it. The other little cake we got from Byerly's and ate it on her actual birthday.
This week started off with her 1 year appointment with Dr. McCord. She now weighs 22 lbs, 9 oz and is 27.5 inches long. We thought she would weigh lots more, especially with all the cake at both party's! He said she looks great! I had questions about starting milk and concerns about her weight and we sat down and talked about it. I asked if she should be on 2% instead of whole milk and he said that it was a good idea. Besides new facts have come out about milk not having enough vitamin D in so we should continue with her Trivisol. He said it's better to prevent her from becoming overweight than to have her overweight and try to take it off. He said we just need to make sure she is getting good healthy food and not a lot of fattening foods. If we stay away from them she won't want them in the future. We want her to be a kid, but also want to prevent her weight from becoming an issue. He continued to say that she is doing well and we will continue with the same regimen for preventing UTI's. She also had the usual shots for a one year check up and two additional shots, one for her booster of H1N1 and her booster of the regular flu. She had a total of 5 shots and was upset for the remainder of the day. I called Ben on the way home and told him that she cried so hard and I never heard her cry like that before. Poor girl!
On Tuesday we had 5 appointments at Gillette in St. Paul. First up was checking her height and weight. Next, she had her MRI. She was strapped down during the MRI and cried the whole time. I now know why she doesn't like loud noises. She wore little earmuffs over her ears, but it was still pretty loud. We next saw Dr. Graupman. He said her ventricles look great and she looks great. He said that we still need to keep an eye out for her shunt malfunctioning, but soon it will be easier as she will be able to tell us if she doesn't feel well. We don't have to see him for a whole year. Exciting news!!! Next up for appointments was a pelvic x-ray. I was excited to see the results from this x-ray as she started standing in her stander in October. Back in August her hip bones were actually forming inside the cartilage like they are supposed to. I have been hoping ever since she started her stander that her hips were still doing fine. We saw Dr. Koop after the x-ray and he said her hips look great. I was so thankful that my prayers were answered. I told him that we are still doing her foot, hip, and leg exercises 3 times a day and he was a little taken back by that. His nurse, Patrick, said that we were probably one of three families that actually does exercises. They both also said that we are exceptional parents. This made Ben and I feel proud of ourselves and yet sad that other parents don't help their kids along and do exercises. We just know that we want the best for Cora and whatever helps her have a better future we are more than willing to do. We will see Dr. Koop in 6 months.
We continue to have PT twice a week. When the school PT comes we go to Gillette once a week. This past week I have been working with Cora on crawling and kneeling. She does so well and makes me so proud!
We wish everyone a Merry Christmas!! We will try to update again before the New Year so that we can keep them a little shorter.
Prayers as always are very much appreciated!!
With love,
Ben, Paula, and Cora
December 8th, 2009
HAPPY 1st BIRTHDAY CORA!!! HAPPY 1st BIRTHDAY CORA!!!
Dear Cora,
Happy Birthday! Dada and I can't believe the time has come already for you to turn 1. The past few days we have been reminiscing about last year at this time and I almost cry just thinking about it.
It all started around 9:30pm Sunday December 7, 2008. Dada and I were watching a Christmas Hallmark movie (love those movies!) I had been feeling a little pressure earlier in the evening, but just figured that's how it is in your 9th month of pregnancy. Suddenly I felt as though I wet my pants. I went to the bathroom and changed, but just thought I had an accident as many women do when they are pregnant. I came back to continue watching the movie and told dada what happened. We totally didn't think anything. Around 11pm we went to bed, but I couldn't get comfortable and had cramps. Dada was already sleeping, but I couldn't get to sleep and that's when I knew they weren't just cramps, but contractions. During my 27th week of pregnancy we went in because I was having contractions, but they just sent me home.
I went to the bathroom as there was so much pressure that I constantly had to pee. I came back and woke up dada and said, "I think it's time to go". He shot up out of bed and went to start the car. It was snowing very hard and very cold outside. Dada got the car packed and dressed before I was even dressed. He was in such a hurry!! This time we knew we were coming back home with a baby.
Once we got in the car dada called the hospital and let them know we were on our way. I could hardly talk as my contractions were SO strong! Dada tried just talking to them, but they insisted that they needed to talk to me. I told them that my contractions were about 5-6 minutes apart. We arrived at United Hospital at 1:21am. I got undressed and put on a hospital gown. They put the monitors on you and had a hard time finding your heartbeat. I was nervous and so was dada. They gave me oxygen hoping it would help you out. Your heartbeat went from the 120's to 101. You were still ok, but the nurse said that anything under 100 they tend to get a little worried. The nurse called the doctor in and within a few minutes there were 10 people in the room. Dada came out of the bathroom and saw all the people in the room and got a little worried. He looked like he was going to pass out. The doctor decided that we were going to get you out. My contractions were 2-3 minutes apart.
I was wheeled into the OR at 3:05am. Dada came in at 3:22am. You were born at 3:38am. You were the most beautiful baby I had ever seen! They took you and wrapped you in plastic wrap and off you went to the NICU. I told dada to go with you.
You had your first surgery at 5:30pm on the day you were born. Dada walked with you as far as he could as they took you to the OR. I wasn't able to be out of bed yet, but said many prayers as they closed up your back. It was a big relief when Dr. Graupman came and told us everything went well.
You continued to be in the hospital until December 13th. In the early morning hours of December 15th as dada and I were changing your diaper we noticed your back leaking so we went to United hospital once again and at 12:45pm you had a shunt put in. We finally left the hospital on December 17, 2008.
This past year you have accomplished so much! We are proud of you each and every day. You continue to thrive and impress us in so many ways. We are so lucky to have you in our lives. We now know that God works in mysterious ways. He gave us you, our biggest joy in life. Love you so much!! We know that many obstacles will come your way and we will be there to help you through it all. Love you! Love you!! Love you!!!
Love,
Mama and Dada
November 13, 2009
UPDATE - November 18, 2009
Just had to share a little exciting news about Cora. Yesterday at PT in Burnsville she was on all fours all by herself. Stephanie said, "that's all her Paula" and she was by herself in the crawling position. Of course, she didn't move and only stayed there for a moment, but she did it!!! She also is starting to reach for toys and come back to sit. I am so very proud of her!!! I called Ben as soon as I got in the car to tell him the wonderful news!! We have been practicing this for SO long and she finally accomplished it. I am a very proud mama!!!
Love,
Paula
November 13, 2009
Hi Everyone,
Oh my, has it been a busy week!!! The week started with Cora having another CMG on Monday. She did SO well and laid SO still. She is such a little trooper! On Wednesday Ben put her new car seat in the car. It is soft and comfy, but Cora is used to her infant seat and so is mama. It was nice to be able to just take her in her carrier instead of taking her completely out, especially if she is asleep. Also, her new seat sits more upright so she has a hard time getting comfy to fall asleep. I am sure in no time she will like it.
Yesterday, Cora had her ultrasound appointment followed by an appointment with Dr. Wolpert, the urologist. Her appointments started at 2:15pm with her weight. She now weighs 22 lbs, 11 oz with clothes on. She sure is growing. Then at 2:30pm she had her ultrasound which she laid so still and kept looking at the ultrasound tech each time the machine beeped. She started to squirm a little when the tech was by her ribs, as Cora is especially ticklish on her ribs. Our next appointment wasn't until 3:45pm so we had a little time to sit a wait, or so we thought. Ben kept going to the front desk asking how much longer we had to wait and the lady said all the rooms are filled so it will be a little bit. We didn't get called to the room until 4:50pm! The nurse came in and apologized for having some long patients before us. What could we do at that point? We really wanted to find out her results from the doctor. Finally around 5:30pm Dr. Wolpert came in and also apologized.
Ready for the big news?!? Her kidneys look GREAT!!! Dr. Wolpert can't figure out Cora as her kidneys shouldn't look this good with all of her UTI's. She does have some reflux on her left side, but that kidney looks good too. He also asked how I can tell she has a UTI and I said that I really can't. One time her urine smelled funny and looked really yellow and I took her in and she had a UTI, otherwise it's kind of hit and miss. When we go for her regular appointments she does get catheterized for a urine culture to check for UTI's, but otherwise we don't know. I told him my main goal is to keep her kidneys looking great and he agreed and said that was his goal as well. We will see him in 3 months for another ultrasound and checkup. At this time we will see how her kidneys look and decide one of two options:1. Do an outpatient procedure where they take a tube (he compared it to a stir straw for coffee) and shoot medicine up to block the urine from refluxing to her kidneys or 2. have surgery where they would make a cut about 2 inches and make a flap to stop the urine from reaching her kidneys. For this procedure she would be in the hospital for 1-2 nights. I am nervous, but hoping that the outpatient procedure would work for her.
Today we had PT in Burnsville with Stephanie and Scott, a student who is working with her. Cora cried almost the whole time and I think it was because her new medicine for her UTI doesn't make her feel well and it makes her very sleepy. Earlier today she had some diarrhea, which is also caused by the medicine. On the way to the car from PT my arm felt wet and I look and Cora leaked through all over her pants. Poor little girl. I am sure this happened while we were at PT and that is why she was crying. If we just knew when she isn't feeling well!
Next week comes with 3 PT appointments, two at Gillette and one home. I can't believe Thanksgiving is almost here. Where does the time go? In the next week or so Cora will also be getting her booster to both the H1N1 and regular flu shot. She got the H1N1 on Halloween and the flu shot a week or so earlier. I am so happy to have her protected this Winter!
As always thoughts and prayers are always welcome! Don't forget to sign up for email updates above.
Love,
Ben, Paula and Cora
November 10, 2009
Hello Everyone,
Cora is now 11 months and getting bigger and bigger every day. She proved to us just how big she really is by needing a new car seat. When we were at the doctor's office 2.5 weeks ago she weighed 21 lbs, 8 oz and her infant seat is only approved for up to 22 lbs. The new seat came yesterday and we have yet to try it to see if she likes it. It looks so soft and comfy so hopefully she will.
As mentioned in the last post, last week and this week Cora has several appointments. Last week Cora had home PT along with Gillette PT. She did good at both and we are still trying to improve her arm strength. We are still at 25 minutes in her stander/day. She likes it for about 10-15 minutes and then starts to whine like there's no tomorrow. I remind her that I am walking/running on the treadmill while she is in her stander and I don't like going on the treadmill, but it is what is best for us. It makes it easy for me to go on the treadmill since I know she doesn't like her stander much. Right now we just hope that she isn't in pain while she is standing and putting weight on her legs. It is hard for us to know now since she can't tell us what hurts and what doesn't.
On Thursday, Cora had her VCUG and CMG at Gillette in St. Paul. She did an amazing job during both procedures. Everybody commented on how well she laid still for her age. During both the VCUG and CMG she must lay pretty still in order for them to get the correct reading. She was a super star!!! The nurse was unable to get a good reading for the CMG because they didn't drain all of the dye from the VCUG so we had to make another trip to Gillette yesterday. This was upsetting because I had to wake Cora up early again so that we could be at the hospital at 7:45am. She fell asleep on the way and stayed asleep until we got on the elevator. Poor little girl just wanted to sleep!
Yesterday we received a call from a nurse at Gillette saying that Cora's urine results came back positive for a UTI. She will start another medicine today. As for the VCUG results Cora was able to hold 75mls and for the CMG she was able to get in 30-50 before she started to leak. Now that I know she has a UTI I am wondering if she could hold more if she didn't have one. Usually when she has a UTI she will pee while we are changing her diaper. Could she have held more if she didn't have a UTI? I am going to ask the urologist on Thursday about this and see if we can have another CMG done when she tests negative for a UTI.
I will update after Thursday's appointment. We are hoping to hear all good news at this appointment. Please pray that we hear wonderful news and that Cora's kidneys still look great like they did back in July. Thanks again for your thoughts and prayers. Keep them coming!!
Hi all, Ben here, as many of you may know, the US House of Representatives passed their version of health care reform. I ask everyone to contact their senator and urge them not to support any bill that would inhibit care to anyone. Health care cost are high, but the bill that was passed in the House, will only make things worse. Care will be rationed, it's inevitable. When the government runs out of money for health care, the only way to save on cost is to either ration care or increase taxes. If care is rationed, that will leave us in a tough situation. What if Cora's shunt malfunctions? She would need a revision immediately and I really don't want the government bureaucrats deciding if (and that's a big if!) or when Cora will get surgery. Right now, she would get surgery immediately, under this bill, who knows! This is just one of the many concerns of the House Bill so, please contact your senator and ask them to vote no on this bill. Here is great article, published the day the bill was passed, on the many shortcomings of the House Bill, H.R. 3962.
Love,
Ben, Paula and Cora
November 4, 2009
Hello Everyone,
Sorry it's been so long since we have updated! We have been keeping quite busy the whole month of October and are looking forward to some quiet time in November. I hope to update sooner next time so that we can keep the posts a little shorter.
October came and left in a flash!! With it included going to Wisconsin 3 weekends in a row. Not that we are complaining, but traveling three weekends in a row is quite exhausting. We are glad we won't be going back now until Thanksgiving- which is right around the corner! Cora had lots of firsts in October which included going apple picking, to a pumpkin patch, the flu shot, H1N1 shot and her first Halloween. She slept through the pumpkin patch which was good because we went on the coldest day ever! She, of course, was nice and warm in her stroller. She was a monkey for Halloween. She was the cutest monkey I've ever seen!! I made her a banana out of some fleece material to go along with it. We surprised Cora's grandparents on Halloween and they all enjoyed seeing her. We didn't go trick-or-treating, but made a few stops to some of our neighbors (Cora's other grandparents). She had a blast!!
For the past few weeks Cora has been irritable and waking up during the night (something she hasn't done since she was a few weeks old). She also was sneezing and had a cough, but no fever. I took her to the pediatrician's office and she came back just fine. They also checked her urine for a UTI and that came back negative. Then last Sunday she threw up so I called the nurse line thinking it may be her shunt. The on call Dr. called me back and said if it continues or gets worse to go in. Monday she was not well in the morning and screamed anytime I put her down. On Tuesday she was better until nighttime when she threw up again. Wednesday I called her Dr. office and her Dr. called me back and told me to change her medicine and see how that goes. Needless to say she stopped throwing up. Thursday came and we went to PT and she cried and cried. She didn't want to play and wanted only mama. Her PT suggested to call Dr. Graupman's office (Cora's neurosurgeon). On Friday she had a CT and it came back normal. Thank God!! We were so happy to hear the good news, but still wondered what was wrong with our dear Cora. Today she continues to be slightly irritable, but has gotten a little better since last week. Maybe she is finally getting her molars?! We aren't sure, but just taking it day by day.
We are starting to get ready for Miss Cora's 1st birthday party!! I am excited and sad at the same time. It has gone by SO fast!!! I really can't believe it!! It seems like just yesterday we were in the hospital learning about all the ups and downs we were about to go through. Now looking back, Cora has accomplished so much in the past 11 months. She is quite the little fighter and such a determined little girl! I love her more and more each and every day.
This week and next are filled with lots of appointments. On Thursday we have a VCUG which checks her bladder for reflux and sees how it is emptying. Next week we will have an ultrasound of her kidneys and see Dr. Wolpert, the urologist. These two appointments are extremely important. We hope that her kidneys are functioning well and her bladder continues to empty properly. Please keep us in your prayers as we go through these appointments. My worst fear is having to catheterize Cora, not for my sake, but for hers. I really don't want her to have to go through it. I, of course, am a nervous wreck, but am trying to remain positive and wait for the results. If you want to know more about what a VCUG is, Google VCUG and find out. It will help you understand what Cora has to go through. It makes me cry just thinking about it, but helps to know that she went through it at 4 months she can go through it at 11 months.
Lastly, Ben has updated the website with all the pictures we have taken this month including her Halloween pictures. You will also see a couple of pictures of Cora in her stander. There are quite a few, like always. Thank goodness for digital cameras! Enjoy!
Don't forget to sign up for email updates at the top of this page. This way, when the website is updated, you will get a email notification.
Thank you all for your continued thoughts, messages and Prayers. We really enjoy them and I always read them to Cora to remind her how loved she really is!!
Love to you all,
Ben, Paula and Cora
October 8th, 2009
Hi Everyone!
Today Cora is 10 months old!!! Yep, she's that old already! We just can't believe how fast time flies. I look back a year ago and couldn't have imagined how fast it would go. Nevertheless, we are extremely excited with all of her progress and continue to cheer her on with every obstacle that comes her way.
We continue keeping busy with her weekly PT appointments and last Friday got her a stander. This will keep Cora upright and get some weight bearing on her legs. I am really excited as she is such a strong determined girl! Her physical therapist, Stephanie, is great with Cora. She really keeps Cora going, which I think is great. I wanted a therapist that would make Cora work hard rather than just tell us what she can/can't do.
Our weekends are our family time and we love it! It's the time that dada is around and we get the chance to do things as a family. This past weekend we went to an apple orchard. Cora slept through part of it and woke up just in time to pick some apples. She even picked her own small apple and dug right in to start eating it. I, of course, washed it first. We also had our church pictures last weekend. Cora wasn't excited at all and didn't even smile. I think she was wondering why mama and dada were in her picture! She kept looking up at us instead of at the lady taking the pictures.
This weekend we are going to the pumpkin patch. Cora told me that she wants lots of pumpkins so we have to persuade dada to get as many as we can afford. I am sure she will enjoy picking out her very own pumpkin.
We are anxiously waiting for Cora's pediatricians office to receive the flu vaccine. I want her to get it ASAP so that she can fight off any germs before they come to her first. Plus, it's getting cold, immune systems are down and germs are flying! I continue to call everyday only to hear the voice mail say "we currently have not received the flu vaccine". How frustrating!!!
We hope this update finds everyone well and healthy! Thank you all for your continued prayers and messages for Cora. We really do appreciate them.
Love to you all!
Ben, Paula and Cora
September 15, 2009
Hello to all of you!
Cora is such a big girl and growing up very fast. We appreciate all of you who continue to check our website. I do read all the messages to Cora so she knows how much she is loved so keep them coming!
Yesterday Cora had her 9 month appointment. Yes, I said 9 MONTH APPOINTMENT!! She is doing very well and the doctor said she looks great! She weighs 20 lbs, 11 oz and is 25.75 inches long. Luckily, her clinic doesn't use percentiles (I hate them-what percentile is your baby, mine is this and that!!!) but they do use a graph at which each child should fall in and Cora is right in the middle where she should be. I was concerned about her height and her doctor said when the nurse takes her height it's never very accurate because of kicking and stretching her out (her hips are tight and it's hard to stretch them out). He thinks since Ben is 5'11" and I am 5'2.5" she will be in between there, but probably closer to my height. Right now he won't give a definite answer because of her myelomeningocele.
Cora didn't have any shots yesterday so that was a nice surprise since I was expecting them. I absolutely hate it when she gets her vaccines, not because of the vaccine, but I hate seeing her cry so hard. She will be getting the flu shot and H1N1 shot next month when they are available at her clinic. While talking about the flu shots I asked her pediatrician if I am too overprotective by not letting her be around anyone that is sick, has a cold or not feeling well. He immediately said no and that it's not being overprotective, but a responsible parent. I, of course, couldn't agree more!! Needless to say as we get together with family and friends in the winter months and during the holidays we will be asking before hand if you or anyone in your family isn't feeling well. If we forget to ask please tell us before hand as it is common courtesy so that no one else gets sick. Please be honest as we don't believe in exposing Cora to anything to up her immune system. She has enough issues already that we don't need to top it with being sick.
We enjoyed having our friends Jessica, Dustin, Jerry and Jen over on Saturday night. We grilled out, caught up with everyone's busy lives and played games. They are such wonderful friends and we enjoy getting together whenever all of our busy schedules allow which is usually every couple of months. Also, this weekend we had Ben's parents over for dinner on Sunday night. We keep Cora on quite the schedule so it is hard having people over and going places. Her naps, like her doctor says, are SO important to help her grow. Regardless, she needs two naps and except on days she has appointments we make sure she gets two.
Hope this update finds you all healthy and happy. Whenever you get a moment drop us a message as Cora will appreciate it in the future.
Love,
Ben, Paula and Cora
September 8th, 2009
Happy 9 Month birthday Cora!
Hey Everyone,
I haven't updated in a long time but I thought I would today. Cora is now 9 months old, she is growing up so fast. She impresses us more and more every day. She has started sitting really well right now, we just have to be there to stop here from knockin' her head on the ground if she wobbles a little far and can't correct herself. (Something we have to watch closely with her shunt.) Soon, she will be mobile and chasing Lilly all over the house. I know Lilly would rather not have that day come.
Tomorrow, Cora will be getting new AFO's to replace the AFO's she received just a couple weeks ago. It was finally determined by the orthotist that what she has was just too small. (Something I think Paula already mentioned.)
We got rid of the chaise that was in our house and replaced it with a play corner for Cora. Basically, it just holds all her toys and things like that. I built a shelf/bench thing that is attached to the wall and has 3 fabric boxes that hold her toys. (Not to sound conceded, but I am very happy with the work I did!) We also painted our front entry door a red color along with the front screen door white. The screen door was brown and didn't really match the rest of the house.
I also made a website for my father-in-law, Gary Karasch, for his company Karasch Construction. I'm really happy with how it turned out, so check it out if you have a chance, www.karaschconstruction.com. If you need a great construction company in the Chippewa Valley, he's the one to ask!
The fair has come and gone which means summer is winding down. Its already September and soon the leaves will be turning colors and falling off the trees. Actually, our yard is covered with our neighbors leaves! This may come as a surprise to some people, but the 25th of this month marks the 5 year anniversary for Paula and I! Can you believe it? Time sure flies by when your having fun. Paula has been an excellent wife and friend and I really can't think of anyone I would rather spend my time with. (Not that I ever rally think about it!) She does such a great with Cora and is the main reason she is coming along so well. She never thinks of herself, but always Cora or me on her mind. She is truely one of those genuine selfless people out there. My wife , my daughter and my job give me a pretty nice life. I wouldn't trade it with anyone!
As usual, thanks to all the messages, thoughts and prayers that people leave for us. I know they help!
Talk to you soon!
Ben
August 21st, 2009
Hi Everyone,
I can't believe it is the end of August already!! Time sure flies by when you are busy! That's right, we sure have been busy ( a usual theme in our house) the last couple of weeks. Cora continues to have her weekly PT appointments and PT from the school comes the 2nd and 4th weeks. Cora is doing quite well in PT and this week didn't even cry when she had to work hard. She continues to impress both physical therapists as they can tell we are working with her at home and that she tries her very best. Sometimes I want to cry watching her struggle at a task, but I am also happy at how determined she is. I love her so much!!!
Last week we also had to go back and have her AFO's adjusted. Her right AFO was too tight so they loosened it up. The orthotist also put some grips on the bottom so when we start weight bearing she won't slip. Unfortunately, her right foot is still too tight so back we go next week to get it redone. As if we need another appointment on our list!
On August 13, it was Miracle Treat Day at Dairy Queen. If you went to DQ on that day, THANK YOU!!! A donation from every blizzard sold went to a Miracle Network Hospital. Gillette Children's Hospital, where Cora has many of her appointments, is a Miracle Network Hospital that benefited from the sales of blizzards. Last year over $4.5 million was raised towards Miracle Network Hospitals in just the 1 day. Hopefully, this year we topped that!!
On Saturday we went to the zoo. It was a lot of fun, but very hot. We didn't stay very long as Cora isn't supposed to be in the sun. We made sure she had lots of sunscreen on and blocked the sun from her. It is hard to enjoy outdoor activities but we know that doctors give orders for a reason so we usually only go outside in the early evening to avoid as much sun as possible. After about an hour we came home and Cora fell asleep within minutes of getting in the car.
This weekend we are having our friends Jessica and Dustin over. We are excited as we haven't seen them in a while. It's funny how busy we all get even though we live within minutes of each other. The last time we got together was way back in March. It is nice how quickly we all pick up right where we left off and there is so much to talk about that we sometimes go on for hours and hours about anything and everything. It is a great time and we truly enjoy their company.
Next week we have PT, an adjustment of Cora's AFO's and a urology appointment. This will be a new urologist as we are getting a second opinion. I am excited and nervous about this appointment. I hope that her new urologist is able to answer all our questions and concerns. I already have my notebook of questions/concerns to ask and intend on getting them answered. As I said before, Ben and I are Cora's voice and we need to make decisions that are best for her and that she can benefit from. I really hope that she won't need to be put on ditropan. I have researched this medicine and it has lots of side effects. The less medicine Cora is on the better. I hate to have her on all this medicine. She takes it all like a pro (she has been on LOTS of medicines since she was born) but with all the side effects I want to make sure she really needs it.
We love Cora so much. I always tell Ben that I miss her even though I am with her everyday. I think the fact that she has been through so much makes me love her and miss her more! People who have a special needs child know exactly what I am talking about. Each accomplishment, each day, you can't imagine what life was like before God gave you this special child. It truly makes you look at life in a completely different way and value ALL the little things.
Thank you all for thinking of us and writing on our website. Each time there is a new message I read it to Cora. She may not understand it now, but someday she will look back and read all of them and know how loved she really is!
Love to you all,
Ben, Paula and Cora
More pictures and videos will be coming soon. Videos will now be played from YouTube. For some reason, some web browsers played the videos right away and zoomed in so I decided to switch them to play from YouTube.
August 8, 2009
HAPPY 8TH MONTH BIRTHDAY CORA!!!
(WARNING -LONG POST, BUT ALL IMPORTANT INFORMATION)
Hi Everyone,
What a week it has been!!! I am so glad it's finally the weekend! As you may remember in our last post Cora had appointments Monday, Tuesday, Wednesday and Thursday. She did an excellent job and I am so proud of her! She was such a trooper through it all especially since she was missing a nap each day. By 7pm each night she was definitely ready to go to bed. It was finally Friday and we were finally done with appointments. Cora and I were both exhausted! She is now back on her regular schedule, which she SO desperately needs.
Monday started with her AFO fitting. She did great and stayed calm through it all. The whole fitting lasted 1.5 hours and she didn't have the slightest whimper once. We just read books and played while Bill was adjusting her AFO's to fit her properly. Ben and I can't believe how big they are! She is growing up way too fast! While he was fitting her for her AFO's she didn't like it when he was fitting her left foot. We believe she does have some feeling in that foot, which is a good sign. Like we said before, we really won't know what feeling she has until she is older and can tell us. For right now we just have to be extremely careful because if she can't feel pain something can hurt her and we wouldn't know it. Luckily, her AFO's help protect her a little bit.
On Tuesday we met with Cora's orthopedic surgeon, Dr. Koop. She was also weighed and came out at 18lbs, 8 oz and 25.5 inches long. Whenever we get her weight and height we realize it varies because it isn't always at the same place and the same scale. Before we met with Dr. Koop Cora had an x-ray of her hips done. She, once again, was a trooper and laid still with a little help from mommy. When we talked with Koop I pulled out my list of questions and concerns- I may look like a dork, but I would never remember all the things I want to discuss with him. Plus when we only see him every 4 months I want to make sure we get everything answered. He, of course, answered all my questions/concerns. He said that her hips look great and at this time we aren't discussing surgery. This made us beam with joy! The longer we can hold off on surgery the better. Dr. Koop also said that her hip bone is actually forming inside the cartilage where it should. Her AFO's do need to be adjusted as they aren't quite wide enough for her little feet. He also said that we can start weight bearing activities during her physical therapy. I am both excited and nervous about this as we aren't sure what she can feel and we won't really know until she is able to tell us herself. After meeting with Dr. Koop we saw two of Cora's favorite nurses, Patrick and Sarah. Cora first met Sarah when she was a few days old. Overall, her appointments went well and we left quite happy with the results.
Physical Therapy from the school came on Wednesday afternoon. Katherine was happy with the progress that Cora has been making with sitting and rolling over. She said, "Paula, she is doing great!" I am always so happy to hear this. It makes all the hard work and our tight schedules that we have worth the results. She also said she is right on track where she should be and isn't worried about her falling behind-we just need to continue doing what we are doing.
On Thursday we went to Gillette in Burnsville for Physical Therapy. I love Cora's therapist Stephanie. Cora actually cries sometimes during therapy, but she loves her too! I think Cora knows that Stephanie puts her to work and doesn't let her be lazy. Even though I hate seeing her cry, I know it is good to get her working her muscles. This is one of the reasons we do her foot, hip, and side stretches 3x/day.
As you may remember from our last post that we were thinking of getting a second opinion and going to a different urologist. Well after much discussion and research we have an appointment with another urologist that specializes in children with spina bifida at a different practice. We are very happy we looked into it and have an appointment set up at the end of the month. Hopefully, it will go well and we will be happy with our new urologist.
Thanks again for all your continued thoughts and prayers. We enjoy hearing from all of you so leave messages whenever you are able. Having Cora in our lives is such a blessing and we thank God everyday for such a precious gift. It was a year ago 8/6/08 we found out that something may be wrong with our child. I will always remember that day. Coming up in a few weeks is the day we found out she had spina bifida and our lives were changed forever.
Love,
Ben, Paula and Cora
July 31, 2009
Hello Everyone,
Cora is doing well and getting SO big. Yesterday we had her urologist appointment along with a renal ultrasound. Her kidneys look good. That's really all the information we got about her ultrasound. The urologist wants to start her on Ditropan (spell?). I have heard both good and bad things about this medicine so I am going to research it a little more before we start giving it to her. Don't you hate it when you ask a doctor a question and he/she talks over you like you are a piece of crap? Sorry to be so blunt, but the urologist didn't answer any of my questions completely and failed to explain much. I asked how her kidneys look and he just said, "fine". No detailed answer telling us if they still look "great" like her normal urologist said back in March. (her normal urologist was on vacation so we had another doctor from his practice) I kept wanting to ask more questions, but he was hurrying us along probably getting ready for his next patient. Besides he wasn't answering my questions anyway so what the heck do you do? We are looking into possibly getting a second opinion with another specialist. Ben and I are her only voice and we need to do what is right. We want to do what is best for her and if we decide to put her on another medicine, we want to make sure it's the right one.
Cora did have her height and weight checked yesterday and was 18lbs, 3 oz and 25.5 inches long. This was with clothes and a diaper on, but my has she grown!! For those who don't remember she was 7 lbs, 14 oz and 19.5 inches long when she was born. She is still in 6-9 month clothes, but I am sure it won't be for long. During all three of her appointments yesterday she was a very good girl. She laid SO still during her ultrasound and didn't even cry. Considering all of the people we saw yesterday (ultrasound tech, height and weight nurse, and urologist) weren't very friendly, Cora did wonderful! It was odd to us that all of them weren't in very good moods and we were shocked by it. Usually everyone is so friendly and helpful. Maybe they have Obama's health care plan on their minds as well?! We, for Cora's sake, are hoping that the health care plan won't go through. Cora does have such wonderful specialists (with the exception of urology) and we don't want to change that. It seems like every time we see a doctor they look at Cora's list of doctors and say that it's an "A" list of docs. That's great news to us as we want her to have the best we can provide for her!
We continue to have Physical Therapy every week and Cora is doing well. We now have her hip, foot, and side exercises to do 3 times a day, so with playing, reading and her exercises we stay very busy. Next week we have appointments every day except Friday. I will definitely be waiting for Friday to come so Cora can catch up on some sleep. On days she has appointments she usually only gets one nap and another quick nap, sometimes in her carseat. Overall, she handles it pretty well, but is extremely tired by the evening.
A few weeks ago Cora started saying "mama" and now she says it all the time. This past Sunday she said, "mom" and both Ben and I laughed. It was as though she is too big to say "mama" and just wants to say "mom". She also knows who "dada" is and when you ask her where the kitty is she looks for Lilly. My gosh she is growing too fast! I continue working on dada and Lilly so hopefully she will say those soon too.
Thank you all for your continues thoughts and prayers. We update her pictures as often as we can. We have lots of them as mommy gets a little crazy now and then. We will update next week when she is done with all her appointments. Hopefully, they will be better than yesterdays appointments.
Love to you all,
Ben, Paula and Cora
July 13, 2009
Hi Everyone,
Cora is now 7 months and getting bigger everyday. We love her so much!! She is at that stage where she wants mommy, daddy and that's it! The doctor reassured me that it's NORMAL and enjoy it while it lasts because before we know it she will be a teenager and not care where we are. Her pediatrician also said this stage may go on for a while. With all Cora has been through this is the least of our worries! At first we felt bad when she would be held by someone and cry or when the person holding her was upset that she was crying, but we realize that ALL kids go through it and some are worse than others. We hope no one feels offended and that everyone knows that's just the way kids are. It's not as though she hates anyone, it's just that she wants mommy and daddy. We are enjoying this and embracing it! And why shouldn't we?!? As time will come when she won't care where the heck mommy and daddy are or who she is with.
As you may remember from our previous post Cora had a UTI at her 6 month appointment. Well last week I took her in for a urine culture since her pee smelled funny (sorry for the detail!) and once again she has another UTI. I was furious at the fact that she has all these UTI's when she is on a daily medicine to prevent UTI's. She has had 3 UTI's since April with 2 possible UTI's. The doctor congratulated me on catching it ASAP and said that since children with SB are more prone to UTI's there isn't much we can do except catch them ASAP and treat them. I explained my concern with all her UTI's and suggested that she have a higher dosage or be put on a different medicine. Apparently, the medicine she was on was resilient to the bacteria that was causing the UTI this time. So she is on Cephdinir for 10 days and then will be put on a different medicine after that. She has been a little crabby lately and we think it's because of all the side effects with the Cephdinir. She has diarrhea, is crabby, and has had a fever (common side effects). Finally, on Saturday her fever went away. We are hoping this new regime will work for Cora. She will have another culture at her 9 month appointment. Please pray that we don't have to go in before September to have a culture and that this new medicine works for her. Every time they test her urine they have to cath her and while she does a great job it is hard to see her being cathed so many times. Once again it just shows how tough she really is!!
In the upcoming weeks we continue with PT and have the urologist appointment at the end of the month. At this appointment she will have a renal ultrasound. We are hoping, especially with all these UTI's, that her kidneys still look great like they did in April.
We try to update our website with pictures as often as we can. I think we have close to 3000 pictures of Cora and we put many of them on our site for you all to enjoy. As you can see there are some of her and her pool. I don't think she is quite sure if she likes it yet. Hopefully, before it is time to put it away for the winter she will enjoy it more.
Thank you again for all your thoughts and prayers. Keep sending them Cora's way! She has been through so much and has many more obstacles to go through. Also, thank you to everyone who sends us a post. Eventually, we will make Cora a book of all her updates and letters from family and friends.
Love always,
Ben, Paula and Cora
July 1, 2009
It has been almost a month since our last update and for those of you who still check our site, I apologize. We have been pretty busy this month and our days seem to just fly by. A little note: it's 8:30am and Cora is still sleeping! This gives mommy a little time to get stuff done.
On June 9th Cora had her 6 month appointment with Dr. McCord. She weighed in at 15 lbs, 8 oz and 24.4 inches tall. She sure is a growing girl!! She also got her shots at this appointment and hated every bit of it. I actually had to hold her hands down as she was trying to move the needle away from her legs. She sure is a smart girl!! It was so sad and mommy is usually more upset to see her go through it than she is. At this appointment they also did a urine culture and found another UTI (common in children with SB). These darn UTI's are upsetting, but don't seem to bother Cora at all which is difficult because then we can't tell if she has one or not. The Dr. said she will cry and/or have a fever, but Cora seems to have none of this when she has one. It sure would help mommy and daddy out if we knew something was bothering her.
Our next appointment was on June 16th for a MRI and a check with Dr. Graupman, the neurosurgeon. She had the MRI and then we met with Graupman to find out the results. She did a GREAT job during the MRI. She was scared and cried, but did a great job! Dr. Graupman said the MRI showed that the ventricles were small (a good thing!) and that everything looks great! Since her shunt is/can be changed with a magnet he had to change it back from 1 to 1.5. The MRI (HUGE MAGNET) made it change, not a big thing in this case since we met with Graupman after the MRI. He said she seems very healthy and we will meet with him again in 6 months. We still continue to watch for signs of her shunt malfunctioning. I pray everyday that her shunt will continue to work for her and I also kiss her shunt everyday. Dr. Graupman said that a kiss everyday helps. I firmly believe it!!!
We continue with PT from the school every 2nd and 4th week of the month and PT through Gillette every week. I love both therapists as they seem to give Cora a little push especially when she doesn't want to work. She has been rolling from her belly to her back like crazy, but struggles with her back to belly. In the past week or so she has been trying very hard to roll from her back to belly. Sometimes it seems as though she gets frustrated with herself because she can't get her hips over. She tries so hard and has mommy cheering her on. She has her head up off the floor and her arms out, but can't quite get that butt over. I usually give her a little help and then praise her like crazy. She knows she is doing well! She is almost to the point where she can sit unassisted. She is still a little wobbly, but is excited to sit by herself.
Our next appointments consist of a urine culture to check for a UTI and weekly PT appointments. At the end of July we meet with the urologist and have a renal ultrasound to make sure her kidneys continue to be in good shape. Also, in August we will meet again with Dr. Koop (orthopedic surgeon) and discuss how her feet/hips are doing. PT from Gillette said that she can tell the difference in Cora's hips and that we are doing a good job with her exercises. YEAH! It's always good to know that hard work is paying off.
Ben and I got to go on a date for the first time since Cora was born. Actually, it was just a drive in movie and Cora was in the back seat sleeping, what a great girl we have! Ben and I are just not ready to leave her alone yet. Partly because of her Spina Bifida, partly because we had her to become a family and be with her and mostly because we just can't get enough of her! This is exactly why I'm so glad I get to stay home with her and not have to work. Each day Cora seems to learn/do something new and I am so glad I don't miss it. She is such a joy and so much fun to be around.
Cora is continuing to thrive and impresses us each and everyday. We are so glad God chose us to be her parents. Thank you to all who continue to check up on us. We also like hearing from you so leave us a message if you stop by our site.
With love,
Ben, Paula and Cora
June 7, 2009
Hi Everyone!!
It has been a long time since we updated and there is so much to say, but I will try to keep it short, well maybe not.
First of all, Cora is almost 6 months old! It has gone by so fast and I am so glad I stay home to enjoy it. She is a talker like her mommy. It seems as though she has so much to say, but just can't get the words out yet. I tell you once she starts talking I know there will be no stopping her. She is doing a great job sitting up. She can't quite do it on her own yet, but it won't be long. She also has been working hard on rolling over. She will roll from side to side, but not all the way over. She will get on her side and try very hard (grunting as she is trying) but is unsuccessful at getting on her belly. We blame her hips! Poor girl has hip dysplasia and has a tough time getting those hips over. It will come with time. At physical therapy on Tuesday she was very close to rolling by herself, but couldn't quite get over. She seemed mad at herself for not rolling over and I felt sad for her. She tries so hard and is such a tough girl.
On Thursday we went to Durand, WI to see Jane and MaryJo. Jane was my doctor when I was first pregnant with Cora and MaryJo is her wonderful nurse. They were both very excited to meet Cora. It was nice to see them again and chat. They adored Cora and Cora was comfortable enough with them to put their fingers in her mouth. We decided to weigh her to see how much she weighed and with her clothes and AFO's she was 15lbs, 15oz. What a big little girl!! Cora did say that she would like to see them again soon so we will make a trip again later this summer/fall. It was a great time!
Cora has been eating solids for about a month now. She started with rice cereal on May 12th and two weeks later we gave her solid food. She started with squash for 3 days then she had sweet potatoes for 3 days. After that we gave her apples, peas, and now green beans all 3 days apart. So far she hasn't had any food allergies (Thank God!). She hated all of it including the cereal, but now seems to like cereal and food so we will introduce each food all over again and see if she will eat it the second time around. The first time it seems as though she really didn't know what to do or what is going on.
Cora's bottom two front teeth appeared on May 31st. They are so cute! She plays with them all the time and enjoys putting EVERYTHING in her mouth. She is just growing up too fast. Time is flying by and before we know it she will be a year old! Mommy will be so sad. I wish we could just stop time for a few months and enjoy every minute of her!
We continue with PT every week and Cora is thriving with each new task they want her to do. We are so proud of her! This next week we also have her 6 month appointment with Dr. McCord. We also have her 6 month pictures on Monday so she has a busy week.
We put new pictures of her, including some picnic pictures on the website. There are also some pictures of Cora and Annabelle. Cora is excited to be the big cousin for a change.
Hope you are all doing well. Thank you again for the continued thoughts and prayers. We appreciate each and ever one of them.
We will update again soon.
Love,
Ben, Paula and Cora
May 12, 2009
Hi Everyone,
Cora is getting bigger and bigger each day! I can't believe she is such a big girl now. We went to the doctor yesterday and she weighs 14lbs, 6 oz. She is 24.5 inches long. She has the biggest blue eyes ever and a beautiful gummy smile that says, "I'm cute". She will definitely use that to her advantage someday. She already uses her cuteness on mommy and daddy.
We continue to have PT every week at Gillette and the 2nd and 4th Wednesdays PT comes to our house from the school. Last week at Gillette Cora SCREAMED the whole time. She wasn't happy and didn't want to work on her belly or rolling over. She sure was upset and let the therapists know. Today at PT she was awesome! She did a great job rolling over and laying on her belly. Mommy was proud and Cora knew it!! I think Cora was proud of herself as well and smiled as if she had been doing it for years.
Today was a big day for Cora as she had rice cereal for the first time. I am not sure if she liked it or not. She opened her mouth, but looked confused. she only had a few bites so each day we will give her more and make it thicker. We will continue to give her cereal once a day for the next two weeks and then start solids. I can't believe my baby girl is eating cereal already. We took pictures and video so we will get those up soon.
Thank you to everyone who keeps us in their prayers. We continue to struggle with Cora having UTI's. When we went to the doctor yesterday her culture came back negative for a UTI so that is wonderful. Now she seems to have caught daddy's virus that he had last week. She has had lots of yucky diapers, but always has a smile on her face-worst patient ever!! Sometimes I wish she would be cranky when she isn't feeling well, but she will throw up and then smile. What a little pumpkin! Keep those prayers coming as we can feel all our family and friends behind us.
Since our last update my sister and brother-in-law had their baby. Annabelle Lynn arrived on May 6th, 2009. She is beautiful and looks just like Craig. Cora is glad to finally be the bigger cousin. We went to visit them in the hospital and Cora looks so big compared to a newborn. We hope to see them lots while my sister is on maternity leave.
With Love,
Ben, Paula & Cora
May 2, 2009
Hi Everyone,
We have lots of news to update you all on since our last update. Some good and some not so good.
First of all, we attended the NICU reunion. It was a lot of fun and there were many miracles from God there. Most of the children that are in the NICU are babies that were born prematurely, so, Cora was the exception. I remember back when Cora was born one of the nurses said she weighed more than any other baby in the NICU. At the reunion, we didn't see any of the nurses that took care of Cora, but we did see the occupational therapist that taught us her hip and leg exercises. We also saw, for the first time, the quilt of all the children in the NICU, including Cora's piece that we sent in. You can see this quilt in some of the pictures on our site. If you would like you can also see the quilt in person by visiting United Hospital and walking past the NICU. They said it will be up until the next reunion when we will make a new one. It is truely amazing to see all the families brought together and hear their stories in their quilt pieces.
Last Tuesday we went to the Twins game. I really didn't want to take Cora this early, but Ben won tickets so we decided to try it. She screamed!! As soon as we walked into the dome she got her big lip and as soon as we sat down she started crying. We walked out into the hallway hoping it would help, but she continued to cry. We went home and called it a night. (We got there in the third inning and left in the fifth). We might try again at the end of summer with Cora or wait until next summer at the new field. By then she will be 1 1/2 and will be ok with the noise. Poor little girl was scared out of her mind!
We had physical therapy (PT) at Gillette on Friday and Cora did very well. We now have exercises to do for her hips 2-3 times a day. Hopefully, this will help her hips not be so tight and she will be able to lay easier on her tummy. PT once again said she is exactly where she should be as far as development. I was happy to hear this as all of our work is paying off. As you can guess with her long feedings, naps, reading time, and playtime we don't have enough time in the day as it is.
Here is the not so good news. On Saturday, we were planning on going to the Zoo. Instead, we ended up going to the ER. Cora was doing well Saturday morning until about 10:30am when she threw up twice. She had thrown up earlier in the week and I had called the nurse. The nurse told me that some children had been coming into the clinic with a mild stomach flu. Cora didn't have a fever so that was a plus. I didn't think it was her shunt at the time so I just watched her and she didn't get sick again, well until Sat. morning. Once she threw up Sat. morning I wanted to take her to the doctor right away. She was irritable, didn't have a fever, but sick to her tummy. Since this could all be signs of her shunt malfunctioning we took her in right away. We got to the hospital and they did a culture of her urine since she has a history of urinary tract infections (UTI's, common in children with Spina Bifida). Then they did a CT and x-rays to make sure it wasn't her shunt malfunctioning. She is such a brave, strong girl!! She took all the tests like a pro. Luckily, her shunt and shunt track looked great and after 3 1/2 hours at the ER we were allowed to go home. The whole time we were there she never cried! Ben and I were both surprised because she ate at 8am and didn't eat until we got home at 4pm. I couldn't feed her there in case it was her shunt and they needed to do surgery. What a little trooper!!! Cora is such a good baby, she just takes everything in stride. There are some pics on our site of her CT. They may bring tears to your eyes as she is so little to be going through all of this. It makes me realize how strong she really is.
This week we will be keeping busy with her PT appointments. PT from the school comes on Wednesday and we go to Gillette on Thursday for her other PT. She is doing so well at her PT appointments which makes me happy. As long as she gets in a good nap and eats before her PT she does well.
Everyday we thank God for our sweet baby Cora. We are so happy to be her parents and she brings so much joy to our lives. Also, we hope that she overcomes these nasty UTI's. The less times we need to go to the doctor, the better. Please continue to keep us in your thoughts and prayers. Enjoy all of her new pictures. We aren't up to 50 pages of pictures yet, but are getting close.
Love,
Ben, Paula and Cora
April 24, 2009
Hello,
This week Cora and I kept busy with appointments. She had one Tuesday, Wednesday and Thursday. Tuesday she had PT (physical therapy) at Gillette in Burnsville. Cora did an excellent job!! She laid on her tummy very well and for quite a while. This, remember is hard for her because of her hips, but she did wonderfully and mommy was very proud. On Wednesday PT from the school came to our house and Cora did another wonderful job. The PT was impressed with how well Cora holds her head and we worked on her rolling over. She rolls from side to side and has been for a while, but getting over all the way is again challenging with her hips. Those darn hips!!! Both PT's said she is right on track where she should be and is doing an outstanding job.
On Thursday Cora and I went to Gillette in St. Paul to meet with Dr. Koop. He said her AFO's seem to be keeping her feet right where we want them to be, so, we will continue with her AFO's for the time being. If her AFO's wouldn't be working we would go back to casts. Dr. Koop said we won't need to see him for 3 months. I was so happy! This means one less appointment to go to. After seeing Dr. Koop we had to have her AFO's adjusted since she is growing. So it looks like the only appointments we will have until her 6 month appointment and her appointment with Dr. Graupman in June will be PT. We may have to have her AFO's adjusted once in a while, but that's it!
Cora is becoming a little social butterfly and she has such a good personality. While at her appointment on Thursday she looked at everyone walking by and "talked" to everyone. I am so happy she is so vocal. We were at Gillette for 2 hours and she was happy the whole time. While at Gillette we also saw Cora's favorite nurse, Sara. She held her and wanted to keep her until her next appointment with Dr. Koop, mommy of course said no way!!
This weekend we are looking forward to the NICU reunion on Sunday. It will be lots of fun to see everyone out of the hospital atmosphere. My sister hasn't had her baby yet so hopefully next time I update Cora will have another cousin.
Thanks for all the love and prayers!
Love,
Ben, Paula & Cora
April 8th, 2009
Cora is 4 months old today!!! Our beautiful, adorable little girl is growing up way too fast! Yes, we are biased but we are her parents.
While daddy is at work Cora and I stay busy with her appointments, reading books, and playing. Last week we started physical therapy at Gillette. We have her PT scheduled for every week for the next 12 weeks. Last week at PT Cora cried the whole time. She was very upset and kept a close eye on mama. The physical therapist said that she is at the age where she is leery of people and wants her mama and dada only. She also said that it will only get worse in a few months. She said that it is normal and if she wasn't scared of people she would wonder what's wrong. Today she had her second appointment with the physical therapist and it went much better. She cried for only a few minutes in the beginning. I took some pictures of her at PT (Ben put the new pics on the website.)
Next week she has her 4 month appointment. We can't wait to find out her weight and length and see where she is on the scale. At this appointment she will also have a few shots. I hate taking her when she gets her shots. All you mothers out there know what I am talking about! The cry is painful and they just don't understand why they are getting poked. Poor little girl! She also has her PT next week so we will be quite busy.
Besides Cora's appointments we have been keeping busy and getting together with friends and family. A few weeks ago we got together with our friends Jen and Jerry and Jessica and Dustin. It was a great time to just hang out and catch up. It was a lot of fun and Cora seemed to enjoy herself. This past weekend auntie Christina and uncle Craig came over and spent the night. We had a blast!! Funny moment: we all went to Church on Sunday and Cora tooted very loud in Church!! It was embarrassing and hilarious at the same time. Then 5 minutes later she burped loud. What a little gassy girl!
Lastly, my sister Christina is due April 29th and is about ready to pop! She looks really good but, from what I remember, very uncomfortable. We are very excited for her and Craig and Cora is excited to have another cousin. Cora is going to look like such a big girl compared to their baby. I will definitely cry. Congrats Christina & Craig and good luck!!
Hope you all enjoy the new pictures. Thank you for your continued thoughts and prayers. Cora and I come to the website and I read what people write. She loves it and is thankful mommy and daddy have such wonderful family and friends.
Love,
Ben, Paula and Cora
March 30, 2009
Hey Everyone,
Short Update
New pictures have been added. We really need to start taking more. We've really been trailing off and not taking as many.
Cora is doing great. She had an appointment with Dr. Koop of orthopedics late last week. She weighed in at 12 lbs 6 oz. Nothing has changed, which is this case is a good thing. She has an appointment with physical therapy this week. She does really well at those appointments too.
Some web browser don't properly display the videos below, so click on the link to get a bigger view if that happens.
Thanks again to everyone for your kind words, thoughts and prayers!
Love,
Paula, Ben and Cora
March 12, 2009
Update March 13, 2009
New videos! The videos are below and are great!
(Please be patient, the files are pretty big so it can take a while to load.)
March 12, 2009 (LONG UPDATE)
Hello,
Today we had Cora's appointments at Gillette. Her first appointment started at 9am and the last one started at 2:45pm. Needless to say we were gone from 8:15am until 4:30pm. It was a long day!! Cora, mama, and dada are all exhausted and ready for bed. Well, Cora is already sound to sleep in her crib.
Her first appointment consisted of getting her weight and height. I am proud to say that Cora is now 11lbs, 10oz. What a little chunky monkey!! She is also now 22 inches long. We are happy with her results and hope she continues to thrive.
Next came her CMG appointment. At this appointment, they use a catheter and measure how her bladder is filling. At her age she should be measuring 60cc's and she was measuring 47cc's. Her bladder only measured 47 because she was moving and it started leaking. Overall, she was a real trooper and did a great job! The nurse doing the CMG said that she was behaving very well considering how young she is. Mommy and daddy were right there beside her throughout the procedure.
Her third appointment was an ultrasound of her kidneys. By this time she was getting a little fussy and kicking all over. Daddy had to help hold her legs while I held her arms so that the ultrasound technician could get a good picture of her kidneys. Cora must have done a good job because within 15 minutes we were done and the tech said she had some great pictures.
Next we had Cora's AFO's adjusted. She had been having some redness on her ankles that wouldn't go away. They readjusted them and made them more comfortable for her feet.
Finally, we had Cora's appointment with Dr. Wolpert, the urologist. We first met Dr. Wolpert back in December when Cora was just 5 days old. He had us scheduled for an appointment 3 months out and here we were meeting with him already. It's amazing how time flies!!! He said her kidneys look GREAT! Yep, that's the word he used, GREAT. We were so incredibly happy! He also said her bladder is filling well like it should. This, of course, also made us happy. We will need to see him again in 4 months. Cora, for now, will continue to take 2mls of amoxicillin once a day to prevent a urinary tract infection.
Once we were done with our appointments at Gillette we went to her pediatrician's office for her final appointment of the day. By now it was 2:45pm and Cora was fast asleep in her car seat. I made an appointment with her doctors office because for the past few days she has been having some stomach issues. She has been having some loose stools and toots. She has also been spitting up more than usual. For the past few nights she has been irritable and clingy. Poor girl!! As most of you might think it's not that big of a deal, but with Cora, because of her Spina Bifida and shunt, we MUST be extra careful. These could be signs of her shunt malfunctioning in which we would need to rush to the ER right away. The doctor said it was good to bring her in, but it seems as though she has some viral diarrhea that is going around right now. I guess a lot of kids are getting it and it is also affecting their stomachs.
Our next appointment is in two weeks. At this time we will meet with Dr. Koop (orthopedic surgeon). He will be checking to see how her AFO's are fitting and how they are working. Since she got them we have been in a few times to have them checked out and modernized. They weren't fitting her feet well and her feet kept slipping out of them. Today, we actually had them put some extra cushioning in them so that her feet won't keep getting red sores on them. So far, so good. I guess it's a good thing we keep tabs on these things.
All in all Cora is growing and doing really well. She still continues to impress us and make us the proudest parents ever!! She is also starting to try to sit up. The other day we were driving and I hear her grunting. I look over and see her trying to sit up in her car seat. Sometimes I wish we could freeze time so that we can enjoy and remember all these times.
We will be putting some new pictures on here soon. Ben is busy right now installing our new dishwasher. So, by this weekend we should have a lot more pictures on here.
Thanks again to all of you who write to us and support us. We wouldn't be where we are if it wasn't for the love of our family and friends. Thank you!
Love,
Ben, Paula and Cora
P.S. Sorry for such a long update!
March 8, 2009
Happy 3 month birthday Cora!
Hey Everyone,
Cora is 3 months old today!!! WOW, we really can't believe it. Yesterday we went to United Hospital and saw Cora's primary nurse that took care of her in the NICU. She couldn't believe how big Cora has gotten. As we were leaving the parking ramp Ben and I were talking about how much time leading up to Cora's birth and shortly after her birth we spent there and how much money we spent on parking! Since September I had appointments there every other week and sometimes every week. Then when November came around I had appointments every week and sometimes two appointments in one week. It felt weird being there and definitely seemed like forever since we were there. Cora does see her pediatrician there so we go there every few months.
Not much else is new. Cora has her urologist appointments this week on Thursday. Her appointments, unfortunately, will last all day beginning at 9am with her last appointment at 1pm. Hopefully, we will get out of the hospital before dark! This week she also has her PT appointment. The PT will be every two weeks starting this Wednesday. We are excited for her to begin this already. Sometimes it is hard to sit on the sidelines and watch time go by with nothing being done to help her continue to thrive. Luckily, she has her mama and dada here to get things rolling.
Cora is getting so big and has such a cute personality. She makes eye contact with everyone she meets. She smiles more and more everyday and we think she is the most adorable baby ever!!! A little biased as you can imagine.
We will add more pictures soon. Yes, I said more pictures!! When she is SO cute how can you not take millions of pictures.
We hope everyone is doing great and have a great week. We will update after Thursdays appointments to let everyone know how it went.
Thanks for all your thoughts and prayers. We love hearing from all of you!
Love,
Ben, Paula & Cora
February 24, 2008
Hello Everyone,
Cora finally has her casts off!! (For now at least, as long as her feet stay in the "normal" position) She was fitted for AFO's (Ankle Foot Orthosis) last Tuesday and she got them on yesterday. AFO's are boots that keep her feet in the position they are in. I like to compare them to braces and retainers for teeth. Her casts were the braces and the AFO's are the retainers. So, if she doesn't have them on for the majority of the day, her feet will most likely go back to the club foot position. And by majority, I mean 18-20 hours a day.
Cora will see Dr. Koop again in a month to make sure the AFO's are doing their job. Her next appointment will be with Dr. Wolpert of Urology on March 12th. She will have an Ultrasound of her kidneys at this appointment to see the progression of her reflux.
Overall, Cora is doing extremely well! She smiles more and more each day and is even starting to giggle quite a bit. You can probably see that in the pictures. She is also very active. She holds her head up alot and kicks her legs all the time.
As usual, thanks to everyone for keeping Cora in your thoughts and prayers. We will update with more pictures in the very near future.
Love,
Paula, Ben and Cora
February, 18 2009
Update: February 19th, 2009
New pictures have been added!
February, 18 2009
Hello,
A lot has happened since we last updated. First, and most importantly, Cora was baptized this past weekend. She looked so beautiful in her new white gown! Christina and Craig are her Godparents and they did a wonderful job fulfilling their roles. Cora was not happy when the holy water was poured over her head, but liked the chrism that Father Bill rubbed on her head.
Secondly, Cora got her casts off yesterday and was fitted for her AFO's. We were happy to finally see her legs. We haven't seen her legs since before she had her tendon lengthening surgery over three weeks ago. Her legs are beautiful and perfect! She was also weighed yesterday and now weighs about 10.5 pounds. After she was fitted for her AFO's Dr. Koop wanted short casts put on so that her feet would stay straight and we wouldn't lose ground while we waited for her AFO's. She has little purple casts on. It is the first time her casts are colored and they look adorable. Dr. Koop was pretty impressed with the progress she is making and how her feet are forming.
Today a physical therapist and a teacher came from the school district to give us their evaluation of Cora when they came by on the 5th of February. They were happy to announce that Cora is doing very well developmentally. So far, she is exactly where she should be. We will be setting up physical therapy every other week to make sure she stays on track.
Next week we go back to get her casts off and her AFO's put on. Hopefully, it will go smoothly and they won't bother her too much. At this appointment we will also meet with Dr. Koop and he will let us know how many hours a day she will have to wear them.
Other than all her appointments Cora and mommy are having lots of fun spending time together. She still refuses to sleep in her crib during the day and the only way for her to sleep is if I am holding her or if I lay with her in bed. I am trying to work on a schedule with her and get her to sleep in her crib during the day. At nighttime she is doing great and has been since she was a couple of weeks old. She sleeps fine in her crib at night, so I am confused why she won't lay there during the day. What a little peanut!!!
Ben will be adding more pictures tomorrow. There are lots and most of them she is smiling like crazy. There are also pictures of her baptism. Just a little note about the pictures: Ben adds them to the website, but I take the majority of them during the day. We are glad you are all able to enjoy them. Feel free to print any out if you want.
With love,
Ben, Paula & Cora
February 10, 2009
Hi Everyone,
Where does the time go? Cora turned 2 months old on Sunday and boy are we ever proud of her!! She is doing so much stuff now and has her own adorable personality. She toots like her dada and pouts like her mama! She is all smiles when we talk to her and seems to always be in a good mood. It also seems as though she is trying to roll over, which is great since she does have her casts holding her back from doing a lot of stuff. When she had her tendon lengthening surgery I told Dr. Koop that I now know why SB kids develop later- it's because they have SO much going on early in life that they are unable to do things most newborns can do, like move their legs without big casts on.
Yesterday Cora had her 2 month checkup. Her pediatrician said she looks great and very healthy. At this appointment she also had her shots and an oral vaccine. She got 3 shots, 2 in one leg and 1 in the other. She SCREAMED!!! I felt horrible and wanted to cry. A new mom taking her child to get their shots for the first time is painful! I also felt bad because here is this strong, adorable little girl with big casts on getting 3 shots in her legs. She is doing pretty well with the exception of having a low grade fever. She also seems very tired. What a trooper!!
Next week Cora will get her casts off on Tuesday and be fitted for AFO's for her clubbed feet. These little shoes make sure that her clubbed feet stay straight and don't go back to where they were before her casts. It will be so nice to hold Cora without her heavy casts. I am sure she will be excited to finally have them off as well.
We will update the website after her appointment next week. We apologize, but it is much easier on us to update the website for our family and friends than calling everyone. Plus, this is the main purpose of the site. This way we don't repeat the same update on the phone a million times!
Ben is still in the process of changing the website so look for that soon.
Happy thoughts and prayers are always welcome!!
With love,
Ben, Paula & Cora
January 21, 2009
Update: February 2009
More pictures added!!! She smiles alot now!
January 21, 2009
Hey Everyone,
Cora is now already 6 weeks old and weighs 8 lbs. 11 oz.
It's been a very long time since we last updated. In that time, Cora has had 2 cast changes. They both went well and her feet are still progressing nicely.
Her most recent cast change was Tuesday, January 19th. At this appointment Dr. Koop, her orthopedic surgeon, mentioned that Cora is now ready for the surgery on her Achilles Tendon. This is where they will cut the tendon which will lengthen it so it won't be as tight. Gillette Children's called this afternoon and said her surgery would take place on Tuesday, January 27th at 7:45. It will be an in and out procedure. It will take approximately 45-60 minutes and she will be released the same day.
After the surgery, she will need another set of casts that will be on her feet for 2-3 weeks. Hopefully, only 2 weeks so she may not have any casts on for her baptism. This way she would be able to be fully immersed in the water.
Everyday, Cora never ceases to amaze us! She seems to hold her head up longer everyday. She also smiles at mommy and daddy all the time. She sleeps very well during the night, only getting up once for feeding, but fails to take daytime naps. She does nap during the day with one provision, it has to be on mommy! She really enjoys her tummy time, especially if mommy reads to her. She lays on her shunt for a little while at a time, but it still seems to bother. It would bother me if I had something sticking out from under my skin, so we know she is tough because she doesn't complain about it too much.
In the next few weeks, our website will be completely redone, so don't be surprised if you don't recognize it when you check again.
Please say prayers so that everything will go well on Tuesday!
We will update again after her surgery so check back on Tuesday or Wednesday of next week
Have a great week and an even better weekend!
Love,
Ben and Paula
January 21, 2009
Hey Everyone,
Cora is now already 6 weeks old and weighs 8 lbs. 11 oz.
It's been a very long time since we last updated. In that time, Cora has had 2 cast changes. They both went well and her feet are still progressing nicely.
Her most recent cast change was Tuesday, January 19th. At this appointment Dr. Koop, her orthopedic surgeon, mentioned that Cora is now ready for the surgery on her Achilles Tendon. This is where they will cut the tendon which will lengthen it so it won't be as tight. Gillette Children's called this afternoon and said her surgery would take place on Tuesday, January 27th at 7:45. It will be an in and out procedure. It will take approximately 45-60 minutes and she will be released the same day.
After the surgery, she will need another set of casts that will be on her feet for 2-3 weeks. Hopefully, only 2 weeks so she may not have any casts on for her baptism. This way she would be able to be fully immersed in the water.
Everyday, Cora never ceases to amaze us! She seems to hold her head up longer everyday. She also smiles at mommy and daddy all the time. She sleeps very well during the night, only getting up once for feeding, but fails to take daytime naps. She does nap during the day with one provision, it has to be on mommy! She really enjoys her tummy time, especially if mommy reads to her. She lays on her shunt for a little while at a time, but it still seems to bother. It would bother me if I had something sticking out from under my skin, so we know she is tough because she doesn't complain about it too much.
In the next few weeks, our website will be completely redone, so don't be surprised if you don't recognize it when you check again.
Please say prayers so that everything will go well on Tuesday!
We will update again after her surgery so check back on Tuesday or Wednesday of next week
Have a great week and an even better weekend!
Love,
Ben and Paula
January 6th, 2009
UPDATE: January 8th, 2009
HAPPY ONE MONTH BIRTHDAY CORA!!! We love you so much!!!
That's right, our little girl is already a month old. We really can't believe it! With Christmas, New Year's and all her appointments time sure does fly by. She is starting to get on a routine and I am so happy for that. Lately, she has been waking up only once or twice during the night-what a good baby! She is also doing a good job holding her head up and we've come to the conclusion that she has a very strong neck. All in all she continues to impress us and make us proud of her.
Ben has put all the new pictures up on the website for you all to enjoy. There are a bunch with her casts on for you all to see.
With love,
Paula and Ben
January 6th, 2009
HAPPY NEW YEAR!!!
We hope that everyone had a blessed Christmas and a great New Year!! On New Year's Eve we went out for dinner with our friends Jessica and Dustin. We've been going out to dinner with them for New Year's for 3 years now so it's kind of a tradition. This year Cora came along and slept throughout dinner. She rang in the New Year at midnight eating until her heart was content. Hopefully, next year she will have a little friend to ring in the New Year-no pressure Jessica and Dustin!
I can't believe that Cora is almost a month old. Time sure does fly by and before we know it she will be in kindergarten. We have been taking pictures of Cora like crazy. She does so many cute things that Ben and I are constantly telling the other to "get the camera quick." Honestly, we believe she is ADORABLE and we feel we need to capture every moment as things may only happen once.
We continue to have weekly cast appointments. Today she was also weighed. She is now 8 pounds!! Cora got her 4th set of casts on her legs today. Usually she is pretty calm about getting her old casts off and new ones on but today was a different story. She was upset at the nurse for taking her old casts off. She kept kicking her legs to avoid them being cut off. When it was time to put new casts on her legs she was mad that her legs weren't free!! As the casting nurse put them on she actually had her hand by her face in a tight fist with her middle finger straight up in the air! I couldn't believe it and wished I had the camera by me. It was as if she was saying, "you can put the casts on but here is what I think about it!" She left her hand like that for a few minutes and then continued to try to free her legs. If she is this strong and determined now what will she be like at 2 years old? Good for her! She makes us so proud!
As far as appointments go she has three more cast appointments scheduled for this month and then her pediatrician appointment in February. Last week Dr. Graupman said we didn't need to see him for 6 months. This was great news to us as things are looking good as far as her shunt and back closure goes. He said if something comes up give him a call otherwise we will see him in June. Lets hope and pray nothing happens to signal a shunt malfunction so we can just wait until June to see him. Also, Dr. Wood, the plastics doctor said that her closure looks great and we won't need to see him again. The less doctors we need to see the better!
I am really enjoying my time at home with Cora! I still can't believe how big she is getting. I am trying to get her on some sort of schedule, but she is only a month old so it is pretty much whatever she wants, she gets. It is hard knowing what is wrong when she cries-is she being a "normal" infant and just crying to cry or is something bothering her like her shunt or legs. We continue to learn her wants and needs everyday. I told Ben that basically whatever she wants now or whenever she cries we need to go right to her because something could be making her uncomfortable and she just can't tell us right now.
As usual, thanks for messages! You may notice Kate H. has left a couple of messages. She was Cora's primary nurse at the NICU and she was wonderful. They told us if we "click" with nurse we can ask to have her as our primary. Kate was her first daytime nurse and we could tell she was very caring and enjoyed taking care of Cora. All the other nurses were nice, but there was something about Kate that we liked. She seemed to really know our little Cora. We'd like to thank her again for taking such good care of her and making us feel comfortable leaving Cora with her.
We will post new pictures soon!
Thank you for the continued prayers. We really appreciate them.
Love,
Paula
December 26, 2008
Merry Christmas Everyone!
We hope everyone had a very merry, happy, safe and fun Christmas! We sure did! We definitely received the best gift anyone could ever get, a new baby home for Christmas.
Cora is doing very well at home. She has her days and nights mixed up a little bit, but that's to be expected. Especially when she was in Paula and active the most at night. She opens her eyes up more and more each day which means we get to see her big, beautiful blue eyes. If you've meet her, you know what I'm talking about.
She already has her second set of casts on her legs. They were applied on Tuesday, December 23rd. At that time we were able to meet with Dr. Koop, the pediatric orthopedic surgeon. He was very nice and seemed very positive for Cora's future. The technique he uses to correct clubfoot is called the Ponseti method where a series of casts are used instead of surgery. They are seeing that adults who had clubfeet corrected by surgery as children are having very stiff, weak and painful feet. If interested you can find more information here.
Dr. Koop said that she will have her casts changed every week and would need them for probably 4 to 6 weeks. She may need very minimal surgery after that but no where near if she had not had the Ponseti casts put on.
Her next appointment for the casts is on December 30. She has many appointments that day. We will meet with Dr. Graupman, Neurosurgery; Dr. Wood, Plastics; Dr. Koop and she will have her casts taken off and new casts put on.
More pictures have been added. I was able to get it so the newer pictures are in the beginning. So newer pictures will start at Page 1.
And, as usual, thanks to everyone who check our site regularly, leave messages on our message board, and more importantly, who keep us in their prayers.
Love,
Ben
December 19, 2008
Hello Everyone!
We are HOME!!! Sorry it has taken us a couple of days to let you know that she is home, but these last two weeks have been a complete blur. Cora was discharged Wednesday evening. She is doing great and is such a little princess. Her shunt surgery went well and during her recovery time at the hospital she didn't have any pain medication except for Tylenol. I asked why she wasn't given any pain meds. and the nurses said they don't like to give it unless she would seem to be in a lot of pain because it is very potent. I completely understand this, but also feel bad for Cora because she had a major surgery without any pain medication besides the anesthesia. Remember this the next time you are in pain from the doctor, dentist, or any other kind of pain. What a little trooper!!! She is definitely our little hero and a Godsend to us!
Yesterday we had our first appointments out of the many that we will have in the future. We had her orthopedic appointment along with her pediatric appointment. Together these appointments took up the whole morning. I was glad Ben was able to come with. He will try to come as often as possible, but with work it gets hard. Cora had her casts put on her legs for her clubbed feet. She slept through it so that was a plus. Ben and I often wonder if they hurt or bother her and the answer is that we really don't know. She is such a mellow, calm baby that it is hard to know if she hurts. Last night we gave her some Tylenol in the hopes that if she is in pain it will help her out. After her orthopedic appointment she had her first pediatric appointment which went well and her doctor seems wonderful. They weighed her and she weighed 8 lbs, 1 oz. This, of course, was because of her casts on her legs. On Monday she weighed 7 lbs, 6 oz. Overall, her doctor said she looks great and healthy.
Next week she has another appointment for new casts. She will get her casts taken off and new ones put on every week. She will have this done until her clubbed feet are corrected. Hopefully, the sooner the better. We hope and pray that these casts will correct her feet and that someday she will walk with or without assistance. Right now all we can do is provide the very best outcome for her which we are trying to do by getting her feet taken care of as soon as possible.
Once again thank you all for your continued thoughts and prayers. They mean so much to us and sure helped us out when we were in the hospital. Please pray that her feet will be corrected with the castings and that she isn't in any pain. Also, pray that her shunt will work correctly and we can avoid another trip to the ER. Since she now has a shunt we must watch for signs that it may malfunction. This little miracle as gone through more in her 11 days of life than many of us have ever gone through our whole lives. She sure is tough and when the time comes and she gets older no one will mess with her.
Pictures of her casts will be added later.
Love,
Paula, Ben & Cora
December 15, 2008
Hello Again Everyone,
It looks like our little Cora likes the early Monday morning trips to the hospital. Well, I guess I wouldn't say she likes it but we went into the ER very early this morning. She is now back in the same room in the NICU where she was discharged just 2 days ago.
Paula noticed that the dressing over her defect was very wet. I concurred and took off the dressing to take a closer look. (They gave us extra dressing material just for something like this.) After the dressing was taken off, we did notice her incision was a bit puffy and had a small leak. I called the neurosurgeon's office for advice and eventually talked to a nurse who in turn got a hold of Dr. Partington, the on call neurosurgeon at Gillette. He said we would need to go into the Children's ER but since the weather was bad, we could wait a few hours. We, of course, did not wait and got ready and drove very carefully to the ER in St. Paul.
They admitted our baby Cora, and did a CT scan of her head to see if there was a big difference from Thursday's MRI. Dr. Graupman looked and the scan and said there was not a very big difference but the leaking in her back was a sign that she needed a shunt.
So, at 12:45 Monday afternoon, Cora went into surgery to have a shunt placement. Because its late and I need sleep, I'll give a two sentence explanation of a shunt. Because of the neural tube defect, there is excessive spinal fluid in Cora's head, not a huge amount, but more than normal. The shunt drains the fluid by way of a valve through a tube to her abdomen where it is reabsorbed inter her system. The shunt placement is very common and the actual surgery only took about 45 minutes.
Tonight, Paula and I are at home to sleep, without our darling Cora. It is very difficult but we know she is in great care back at the NICU at Children's. Dr. Graupman says she should be out in 24 - 48 hours! Knowing Cora, it will be the former! While she is in the NICU she may have her casts placed to help correct her clubbed feet. We will update when that happens.
A bunch more new pictures have been added. I just copy all the pictures we take and put them up. The images farther in the photo gallery are the newer pictures.
There are a few pictures in there of Cora's primary nurse! She was absolutely wonderful so we had to get a few pictures with her and Cora. When we have time, we will write something about how great she is. (She is the one who wrote on our message board!)
Thanks again and again to everyone's kind thoughts and prayers. They help a lot!
Love,
Ben
December 12, 2008
Hello Everyone,
It looks like everything is going very well for our dear Cora. The neurosurgeon looked at the MRI she had this afternoon and thought that everything looked good!! He doesn't think she will need a shunt! A least for now, she may need one in the future but right now she looks great. Obviously they will be keeping tabs on her to make sure she is still doing well.
This means we are GOING HOME! I'm a nervous wreck! Paula is doing better but still has questions. We'll just have to take it one day at a time.
Paula was discharged this afternoon and Cora will be discharged tomorrow sometime. Probably around noon. They have to do a discharge exam to see if everything is good before we go home.
She has many appointments already scheduled for next week. We will try to update, if we have time, about her progress.
God bless and please keep Cora, Paula and me in your prayers!
Love,
Ben
December 10th, 2008
I'd first like to say sorry an update took so long, the internet at the hospital was blocking me from uploading to our site. Also, I'd like to thank whoever came and shoveled our driveway!! It was very nice and generous and means a whole lot! The message below is what Paula wrote to put on the site.
Hello Family and Friends,
Cora Lynn Gryskiewicz greeted us with her presence early Monday morning. Sunday night I started having contractions and they were 5 min. apart. We called Labor and Delivery on the way to the hospital around 1:15am. Once we got there they were getting stronger and closer together. I could hardly breath through them and they were soon 2 minutes apart. Her heart rate also slowed down and the many doctors and nurses in the room decided that since I was considered full term we should just go ahead and deliver. Ben and I were both scared as we weren't planning for any of this and it came about so fast! Even though they rushed me into surgery everyone was so caring and made sure that Ben and I was taken care of. United Hospital and all of it's staff is great in that way. Two days later Ben and I still agree that all the nurses and doctors here continue to surprise us with their caring, generous attitude towards their patients. Cora blessed us at 3:38 am weighing 7 lbs, 14 oz and 19 inches long. She is beautiful!! Of course, I am biased because I am her mommy, but she is SO perfect in our minds. My original c-section date was set for Monday December 15th at 7:30am. Evelyn Klopp, my aunt, guessed the correct date that she was actually born and my friend Betsy would have been correct had Cora stayed for another week. Thanks to all who guessed a date-it was a lot of fun for us and hopefully for you!
She had her first surgery to close up her back around 5pm Monday, less than 14 hours after she was born. What a trooper she was! After the surgery the neurosurgeon came to my room and let us know how everything went. He said she did a great job. Her level of opening is a little higher than they originally thought. It was originally a L5/S1 level and now that she underwent surgery they discovered it was more of a L2/L1 level. This made us sad and it was a little discouraging, but we pulled through and know that it all rests in God's hands. She can only do what she puts her mind to and what her momma and dadda offer her. We have made our own promise to her that we will provide whatever we can for her and lead her down all the right paths to as many opportunities that she can do. We just want the best for our precious little girl. We have learned that SB is completely what you make of it. Yes, children have their restrictions, but Cora is strong willed and a pretty tough girl. We know she can handle her own and believe me, no one will mess with her.
We have said before that she will have 2 surgeries within her first 4 days of her life. She had the first one on Monday evening and we are currently waiting to see if she will need the shunt surgery. They are measuring her head circumference everyday to see if anything changes. So far her head is normal size and everything is measuring good. On Friday they will do an ultrasound of her head to see if her hydrocephalus is draining correctly. If it is they won't be putting a shunt in right now, but we would have to watch for signs of it not draining correctly once we get home. Also, they are going to do an MRI next week so that we can be reassured that nothing is going on with the draining of the fluid. What a busy schedule she has!!
Since we won't know when/if she will need the shunt surgery until Friday no one except for Ben and I will be able to see her until this weekend, or maybe Friday if it doesn't look like she will need a shunt. We realize that this is hard for all of you and that you want to see her asap, but we must look and see what is in the best interest of our child. Also, please realize that we didn't get to hold her until Tuesday afternoon so it is hard on us as well. The worst thing that could happen is that she would come down with a virus and not be able to have the needed surgery right away. This would absolutely break our hearts to know that we could have prevented something and we chose not too. Also, her nurses suggested that no one see her for 3-4 days after her back surgery to make sure that everything is healing and she is not being held too much that it would cause stress on her back. Right now she can't lay on her back so they keep switching her from side to side. When everybody is able to see her does also depend on if she needs surgery for a shunt. If surgery is needed it will be after then that you will be able to see her. These surgeries are important and necessary and we are fully committed to our daughter. We will try to keep everyone updated as to when you can visit her and please remember we want to show her off as soon as we can, we just have to keep her best interest at hand. We love all of you and want visitors as soon as we can. Remember I am still here, so if you are close and want to stop by you can see me and lots of pictures of Cora.
Also, we can't update the website from the hospital so Ben is going home to send this quick update. We will try to keep everyone informed as much as we can. Thank you for understanding that we need to put Cora's interest first and that we are just trying to be good loving parents. It is hard on us to not be able to cuddle and hold her as much as we can and realize that for all of you waiting to see her it is hard as well.
Please continue to pray for Cora and her continued strength to get through each day. We know that she is doing as good as she is because of all of your prayers.
Love always,
Paula, Ben and Cora
New and old images are here!!
December 4, 2008
Hello Everyone,
Once again this week we had the regular appointments. My OB appointment on Tuesday went well. One of my concerns is that I will go in early before my scheduled c-section. Pat clearly informed me that I won't go in earlier and that right now it would take sticks of dynamite to get her out. This, of course, made me happy, but at the same time scared me with the talk about dynamite.
On Wednesday I had my weekly NST and BPP tests. She scored 10 out of 10 again for the third week in a row. Yeah, Baby!!! After both tests Pat wanted the ultrasound technician to measure how big the baby was. She weighs 8 lbs, 4 oz!!! Yep, she sure is a big girl! We are so glad she will be a big healthy baby which will make her surgeries much easier.
After my doctor saw the results of the BPP and NST she wanted me to have an amniocentesis. She saw that I had a lot of amniotic fluid and that the extra fluid was causing me to have contractions. So, back at the hospital 2 hours later I had an amniocentesis. I was very scared and nervous, but the doctor and his assistant were amazing and made me feel very comfortable. All together they took out 1100cc's of fluid. While they were taking the fluid out she (baby) grabbed the tubing, what they use to take the fluid out after they insert the needle and shook it like crazy. She sure has a mind of her own! Apparently the amount of fluid is supposed to be between 8 and 22. Before they took out 1100cc's my fluid was at 30. It is normal and happens all the time. My contractions stopped and I felt a big relief of pressure.
Next week I have all 3 appointments on Tuesday so that should take up my whole day!! It is nice to have them all in a row, but it also makes it a long day. We will update after next weeks appointments. Ben will also be putting some new ultrasound pictures on the website soon.
II can't believe I will be 38 weeks on Saturday!! It has gone by so fast! We are both excited and nervous to be parents. (Ben's probably more nervous than me!)
Thank you for all the prayers. We will really need them in the coming weeks.
With Love,
Paula and Ben
November 26, 2008
HAPPY THANKSGIVING!!!!!
Hello Everyone! Today we had appointments that took up the whole morning. I find it funny that the doctors office has a note that says "If you are more than 15 minutes late for an appointment we may ask you to reschedule". We have always been early for my appointments, but they always run late and it's apparently ok. Sorry, just a little frustrating!
I was supposed to have 3 appointments back to back, but my doctor was sick so I only had 2. The NST (non-stress test) went well and she was moving like crazy. The nurse said there isn't much room left and she can see how uncomfortable I am. During the NST I sit in a comfy chair and press a button every time the baby moves. She always tends to move and roll around like crazy during this test. The second appointment I had was the BPP (bio-physical profile) test. During the BPP, the ultrasound technician measures the fluid around her, checks for breathing on her own and also checks for movement in her arms and legs. The BPP went great, but the baby must have been pretty tired from moving during the NST because she was trying to sleep and the U/S tech kept trying to wake her up. Her total score from both these tests was a 10 out of 10. She did great!
Next week I have 3 more appointments. My regular OB appointment is on Tuesday with Dr. Chang. Hopefully she is feeling better by then or I may start to get worried. Then on Wednesday (Ben's 28th birthday) I have the NST and BPP tests again. With all these appointments I should just rent a room at the hospital!
Only 3 weeks and 3 days until my due date!!! I feel very overwhelmed that I haven't done everything I should before I go in. Our bags are packed in case she decides to come before the due date. As most of you know, we aren't sharing the c-section date with anyone as we want to keep it a surprise- with a normal delivery people don't know when you will go in. Our freezer and cupboards are stocked with food and her bedroom is about as ready as it will be, but there still feels like a lot that needs to get done before her arrival. I, of course, am getting nervous but trying to stay calm as I don't want to go into labor. The thought of a c-section scares me to death, but I know I have a wonderful doctor that will take good care of me and Ben will be right by my side through it all.
Also, Emily brought up a good question wondering when she will be able to see me and the baby. After she is born they will be taking her to the NICU and finish stitching me up. Ben will go with her to the NICU to make sure she is doing alright. Once I am in the recovery room Ben will be calling our family. From there he will probably delegate people to call other family and friends so it will be a chain of calling. I say that because he will be going back and forth from me to the baby the whole day and the last thing on his mind will be to make sure he called everybody. He will, however update the website that night to make sure everybody knows. My doctor doesn't want me to have visitors until the next day. She wants me to rest the first day so that at nighttime I can go and see our baby in the NICU. If I don't get my rest I won't be able to see her that night. This is very important to me as I want to see her as soon as possible! No one, except Ben and I, will be able to see her in the NICU until after both of her surgeries (approx. 4 days after she is born). This is because of the opening in her back and the many viruses she could catch-they want to be extra careful because it is winter. Also, no children are allowed in the NICU. Ben will be taking lots and lots of pictures of her so that whoever comes to visit me can see pictures of our baby.
I hope everyone has a safe and Happy Thanksgiving!!
Thank you all for your continued thoughts and prayers. Right now we are just praying that she stays in there as long as possible and that if she decides to come out she is a big, healthy baby.
Love,
Paula and Ben
P.S. A new picture of me has been added. I swear I am going to tip forward soon!!
November 12, 2008
Hello Everyone!!
It has been quite a long, busy week and it’s only Wednesday! On Sunday we ended up going into Labor & Delivery at United Hospital. I was having some lower abdominal cramping, but it wasn’t repetitive so I wasn’t too worried. When we got there, they hooked me up to the machine and started monitoring the baby. After about 15 minutes the nurse came back in and said I was having contractions. Holy crap! I was scared and nervous as I just turned 34 weeks on Saturday. After about 4 hours, an IV (fluids), and 2 shots to stop the contractions, we were allowed to go home.
They believe that I have a bladder infection and that is what caused the contractions. The doctor on call came in and informed me that I was to stay home from work on Monday and rest. I, of course, thought this was unnecessary, but Ben reassured me that it is better to take one day off now instead of overdoing it and then being on bed rest for the rest of my pregnancy. So, I stayed home on Monday.
Yesterday we had my monthly ultrasound and it went great. It’s still a girl! She now weighs approximately 6 pounds, 5 ounces. Everything looks stable and she is continuing to grow normally. Once again they were unable to see any meningeal membranes in the sac. This is the third ultrasound in which they were unable to locate anything in the sac. This is great news! We still won’t know what, if anything is in the sac until she is born.
Some people have wondered and said that doctors can be wrong and she may be completely normal and ok. Let me reassure you that as much as we want her to not have spina bifida, she does. If, once she is born, there is nothing in the sac, great, but her back is still open which is what a neural tube defect (spina bifida) is. We want to stay positive, but also have to be realistic. We, along with 7 other doctors, nurses, and neurosurgeons have seen the opening and sac located along the bottom of her back. Believe me, we have educated ourselves about spina bifida and know it like the back of our hand. We wouldn’t just let some doctor tell us what is wrong with our daughter without finding out more information and making sure we are getting the best care. So that everyone else can see it as well Ben has included a couple of pictures of the sac and opening.
Also included is a new picture of her beautiful, chubby little face. She looks so much like Ben.
Today we had a regular OB appointment with Dr. Chang. Everything again went smoothly and she said my huge tummy looks great. It seems like every time she sees my belly she gets excited at how big I am getting. She is so incredibly happy that the baby is getting big. As we have said before, the bigger the baby is when she is born the easier the surgery will be to close her back. Dr. Chang wasn’t concerned about my visit to Labor & Delivery and the fact that I was having contractions so the c-section date hasn’t changed. We aren’t telling anyone what the date is as we want it to be a surprise. Please respect our decision in this and Ben will call once she is born. Also, when we are in the hospital either Ben or I will be updating the website so the rest of the family and friends (Ben won’t be able to call everyone) will know what is going on.
I also had a stress test today and will continue every week until she is born. Along with the stress test every week I will have a Biophysical Profile test where they monitor her movements through an ultrasound. It sure will be busy during the weeks until she is born. We have less than 6 weeks until she is born. I can’t believe it’s gone by so fast!
Our upcoming appointments include a stress/BPP test every week and regular OB appointments every other week. As of right now, I don’t have any more ultrasounds since she is growing normally and nothing has changed.
Thank you all for the continued prayers and messages. We enjoy all of our family and friends coming on our website.
Have a great week!!
Love,
Paula & Ben
October 30, 2008
Hello Everyone,
This is just a quick update.
Paula had a regular OB appointment on Tuesday this week. As usual her doctor said that everything is going along smoothly. She was surprised when she saw from the ultrasound two weeks ago how big our little girl has been getting, it was a good surprise though. She has said she wants a big baby. She even joked about Paula having a 10 pound baby, saying that we are having a c-section so it really doesn't matter how big she is. In case we didn't say why earlier, I'll elaborate
When our little baby is born, she will need surgery within 24 hours to close up her back. Paula's doctor wants her big for two reasons:
1. Its much easier to operate on a bigger baby rather than a smaller one. The way I see it, its analogous to texting on phone and typing on a computer. The phone is small and tough to get the letters correct all the time. While typing on the computer with a full size keyboard is much much easier.
2. The bigger she is, the more developed she will be. The more developed she is, the easier the surgery will be on her little newborn body.
Another picture of Paula has been added. It's been about a month since the last picture and it looks like she's running out of room. I don't know how her belly can get any bigger! Paula will be 33 weeks on Saturday, only 7 weeks and 2 days left!!!
Also, thanks to everyone who has left messages and kept us in your prayers! It really means alot to us!
The message board has been fixed. You may use the same name as often as you would like!
Take care and have a Happy Halloween!!
Ben
October 15, 2008
Hello Everyone!
As you all know from our previous update we had another ultrasound this morning. Everything went well and we now have lots of pictures of our little girl. The ultrasound tech said that everything looked great and nothing much has changed since the last ultrasound a month ago. The hydrocephalus has gotten a little bigger, this could be because she has grown or it is just getting bigger. We do hope and pray that it is bigger because she is growing so fast. On a positive note once again they couldn't see anything in the sac that is located at the bottom of her back. There is an opening in her spine, but from the ultrasound they couldn't tell if there were any meningeal membranes located in the sac. This is GREAT news, but we definitely don't want to get our hopes up just yet. The pediatric neurosurgeon said that sometimes in ultrasounds you don't see everything and that shadows can cover up different parts in an ultrasound. Right now we won't know if there are indeed membranes in the sac and probably won't know until she is born. We are just hoping for the best! Please include us is your thoughts and prayers that we have the best outcome when she is born.
Once the ultrasound was complete the technician looked at all the measurements and estimated her weight to be 4 pounds 4 ounces! We were quite surprised since a month ago she only weighed 2 pounds 5 ounces. I have 9 weeks 3 days left so she will be a BIG baby. This is, according to my doctor, a good thing because operating on a big baby is much easier than a small baby. When I was born I was 8 pounds and Ben was 9 pounds 13 ounces so she will probably be somewhere in between.
Below, Ben has included some of the pictures we got today. She kept turning around like she was showing off so it was a little hard to get a good shot of her face. She has big round cheeks and whenever the tech tried getting a picture of her she would stick her hands in front of her face. We, of course, think she is just adorable.
My next appointment is in two weeks and I have another ultrasound in a month. I really can't believe how fast it is going! Before we know it we will be a family of four (Lilly will be a big sister!).
Thank you all for your continued love and prayers. We really appreciate all of our friends and family coming to our website to see our latest updates and leave messages. The thoughts and prayers really have been helping us get through all of it.
Love Always,
Paula & Ben
October 11, 2008
Hey Everyone,
Just a quick update. Paula had an regular OB appointment that went really well on Tuesday. Dr. Chang said the baby is growing very well. She checked the baby's heartbeat and at first it was very fast, in the 180's bpm! It finally settled in the 150's bpm. Because it was so fast, she said that baby must have been having a party in there!
Also, tonight we went to church and at one point I looked down at Paula's belly and saw it moving! Just then I heard Paula say something about the baby kicking. Turns out I saw the baby kicking through Paula's belly! She's probably going to be soccer player. It was really cool to see!
We have a few things coming up in the next week:
1. Tomorrow, we are taking a "readiness" class at United Hospital.
2. Tuesday, we have a class for our baby's baptism at our church Guardian Angels
3. Wednesday, we have an ultrasound to check on the growth and development of the baby.
On another note, my company made a small commercial for our website, which I starred in. You can check it our here, www.faketv.com, and click on the "FakeTV Demo" video on the right.
Take care and have a great week!
Ben
September 23, 2008
Update: September 30, 2008
Another picture of Paula has been added. It was just taken today and look at how big her belly is getting!
September 23, 2008
Hey Everyone,
First of all, thank you to everyone who guessed the sex of the baby. We hope it was fun for you. It was nice to see people who come to our site regularly take a chance and guess. We love getting messages on our site! As you all now know it will be a girl and we are very excited! Honestly, we would be equally excited if it was a boy.
On the 15th we had our detailed ultrasound and everything looked good. She weighs approximately 2 pounds, 5 ounces. All her organs look great and her head is normal size and the prenatal doctor said the level of the opening is very low (which we already knew). We have another ultrasound the 15th of October to make sure nothing has changed. It was a very positive appointment.
Last Wednesday we meet with the pediatric neurosurgeon, Dr. Michael Partington, and he explained in detail what will happen once she is born. We got a lot of information out of this meeting with him and feel a lot better now that we know what the game plan will be. He said that after my c-section they will make sure the baby is stable and go from there. The surgery to close her back will be within 24 hours after delivery depending on whether she is stable. They don't want to do surgery on a baby who isn't completely healthy and stable. Her next surgery will be approximately 2 days later to put the shunt in. They need to wait 2 days so that she is stable and healing from the first surgery. He said he won't give us a time frame as to how long she will be in the hospital, but most are in 10-14 days.
Today we had a regular OB appointment with Dr. Chang. She said I am very healthy and the baby is doing great. The baby's heartbeat was 156 bpm. Once again she answered all my questions and concerns. One of my concerns was that every once in a while it feels as though the baby is ripping out one of my ribs from my ribcage. She said that it is completely normal and happens all the time. Easier said when it isn't happening to you! She also said that at my next appointment we will schedule the c-section. Overall, everything is going smoothly and we seem to get positive feedback.
Please continue to pray that everything goes alright with my c-section and her 2 surgeries. This is all a long process for us and all we can do is hope and pray that God will watch over us. We sure have our ups and downs, but what gets us through the day is that we know everyone is praying and in the end we will have a beautiful baby girl.
I also want to say congratulations to my sister Christina and her husband Craig! They are expecting their first child April 29th, 2009 and we are SO excited for them.
Love,
Paula
Hey Everyone,
It's Ben, Paula has pretty much taken over the text of the website, which is good because she explains things much better and I have fun creating things for people to interact with.
I just wanted to say thanks to everyone for being so supportive through all of this. All we can really ask from people is to be in their prayers.
Right now, the baby is in Paula's belly which is the best thing for her. If we could only keep her in there forever, we would know she'd be safe. Not that she won't be when she enters the world, but it would be nice have a little force field(like her mother) around her protecting her from everything. This doesn't mean we are going to put her in a plastic bubble and keep her from the world, it just means I want what's best for our baby, our child, our little blessing.
Most of you know that I work for a very small company, just the boss and me. I couldn't ask for a better place to work! My boss has been great through all of this. He has always stated that he is pro-family. He always asks how things are after Paula's appointments not to be nosey, but because he is concerned.
Thanks for checking the website and leaving comments, it really means a lot to us that so many people are here for us!
Love,
Ben
September 16, 2008
Hey Everyone,
It's A Girl!!!!!!!
Also, I figured the problem with the message board. You cannot use the same name when posting a second message. All the messages have been deleted so post away. Remember not to use the same name twice.
Love,
Paula and Ben
September 9th, 2008
Update: September 13, 2008
Hello Again,
The Sex Guesser is now up and running! I broke it off of the interactive page because it was just looking too cluttered. So, the Sex Guesser and Delivery Date are separate pages. Have Fun!!!
Ben
September 9th, 2008
Hello All,
Today we had a regular OB appointment. Everything went well and I absolutely LOVE my doctor. I know I keep saying that I love her, but I can't help it, she is absolutely wonderful! For those of you who already have children, you know where I am coming from. It helps when the doctor that is caring for you and your unborn child treats you like you are her only patient and wants the best for you and your baby. Some doctors just have that great bedside manner. My doctor (Pat) wanted to know how I was feeling and EVERYTHING that was going on with me and the baby. I, of course, had already made a list of questions. Let me tell you it was a list! I have shared some of them with you below.
The big question on my mind today was the fact that I woke up feeling fine, but once I got into the shower I was very lightheaded and felt like I was going to pass out. I threw up twice this morning and almost ended up not going to take care of Christian and Anna. I told Pat that I felt like I had in the beginning of my pregnancy. She told me that my blood pressure was low and that I needed to make sure I kept it regular. She also told me that I may have trouble standing in one place for more than 5 minutes and after standing for a while I may feel weak. I informed her that I do start to feel weak and usually have to sit while making supper because my legs always feel weak. She said it is common and just watch myself. I should also be getting up slowly so that I don't suddenly black out from getting up too fast as it is common in pregnancy. She said that people with high blood pressure have too much salt and since I have low blood pressure I needed more salt. I just have to make sure I drink lots of water along with it. BRING IT ON! Ben immediately started laughing because he knows I love salt! Peanuts, chips, popcorn, the more salt the better-yum! Now I could eat it and not feel guilty. I was so excited. For those of you who know me well, I put salt on just about anything I can, within reason of course. My friend Jessica and I used to go to McDonalds and pile salt on our fries until the fry was covered in white.
Another question I had was about my left leg because there are times that it will feel like it has pins and needles in it and other times it feels completely asleep. It is so bad that there are times it wakes me up at night. Believe me they are bad because it takes a lot to wake me up! She said that the baby is laying on a nerve and there is no big concern for it. It happens in a lot of pregnancies and unless it really hurts there is no reason to be alarmed. To me it's more annoying than painful.
Pat also informed me that I can't travel outside of the metro area after November 1st. She said, for example, "You can't even go to Coon Rapids". So basically Ben and I figured out that she doesn't want me traveling anywhere that is longer than 30 minutes away from the hospital. This news is bittersweet as I know she wants the best for me and the baby, but now we will be staying here for Thanksgiving. We completely understand where she is coming from as my pregnancy is high risk and she doesn't want me to go into labor at another hospital because of the special care our baby will receive immediately after birth. The first thing Ben thought of was that now we can't go Christmas shopping the day after Thanksgiving. I told him hopefully we will have all of our shopping done before then.
Other than that she was very happy with how big I am measuring and said that everything looks great. She asked if I am eating well and I said that I eat more little meals than 3 big meals because it's easier for me. She said a lot of pregnant women do that so that they don't feel as full and uncomfortable and it's completely fine. I also told her that we drink about a gallon of milk (yes, I said a gallon) a day. Ben drinking about 1/4 of it and me the other 3/4, she said that's great! Overall, she was very satisfied with how the pregnancy is progressing. It is always nice to hear good news.
On another note Ben fixed the TV he found. For those of you who didn't know, Ben found a 46-in, flat screen, LCD TV at his work. It was sitting by the dumpster so he brought it home. Once he started taking it apart he noticed that it was made in 2005 so someone had bought it 2005-2006. He figured out what was wrong with it, ordered the part and now we have an almost brand-new T.V. The best thing about it is that it only cost him $116.00 to fix it. I am very impressed!!
Next week we have appointments on Monday and Wednesday. We are going to find out the sex of the baby and will update on Wednesday with the news.
Ben made a brief note below about the new "interactive" page. Don't forget to take a look at the new pictures below. Also, if you missed any of the past entries, click on "blog" above, and you will be able to see all of the updates.
Thank you again for the continued love and prayers.
Love,
Paula & Ben
You may notice that the delivery date link has been changed to interactive. I decided to make a "Sex of the Baby" Guesser so the delivery date page is no longer just the delivery date picker. I haven't worked out all the details but it will be up and running soon, hopefully by the end of this week.
Some people are still having trouble posting messages. If you run into some problems please email me what you tried, what type of computer you are using (PC or Mac), what your internet company is, and whatever information you think may be useful to me so I can figure out the problem.
August 30th, 2008
Update 2: September 6th, 2006
I've put some pictures of Paula down below showing her belly. The first one is from July 26th and the second one is from August 18th. Not even a month apart, and look how big her belly has gotten!
Ben
Update 1: September 1st, 2008
Thank you all for your wonderful kind words. Ben and I really appreciate them and they mean a lot to us. We are glad you all are informed on what is happening with the pregnancy, although, please remember that we look at this pregnancy as being just as "normal" as any other pregnancy. Come December I will be having a normal C-section. One thing that is VERY important to us is that our child isn't characterized by his/her spina bifida. What we mean by this is that we informed people about what is happening with my pregnancy simply to inform them, not to profile our unborn child. When people ask, "how is your (Paula's) pregnancy going?" I feel that it is ok for me and you to tell them that it is going great, because it is. One thing I have learned from many websites is that I am having a "normal" pregnancy and we are having a "normal" child. Yes, our child may have his/her special needs, but we don't know the extent of anything until he/she is born. Thank you all again and have a great week!!
Love,
Paula & Ben
August 30th, 2008
Hi Everyone,
Today we have some sad news about our precious baby. We recently found out that our baby has spina bifida. For those of you who don’t know what it is, it's an opening in the spine. When our baby was developing, its spinal cord didn’t close all the way and left a small hole exposed. Ben has attached a link that will give you more information. (Article is here) This news brings us sadness, hope, and our faith that we can get through this difficult time.
Ben and I have cried countless nights wondering why this is happening to us. All we've ever asked God for was a healthy baby. We have never cared if it was a boy, girl, twins, or triplets as long as it was healthy. There is no answer and the conclusion we have come up with is that God knows we can handle it. He wanted special parents to take care of a special child and he chose us.
What we know so far isn’t too much as we will learn more along the way. Instead of delivering at Fairview Southdale in Edina I will be delivering at United Hospital in St. Paul. My pregnancy is now considered high risk so they are monitoring me and the baby more closely with every appointment. I had my first appointment with my new doctor, Patricia Chang this past Tuesday. She is completely wonderful and said herself, "God knew you both would be good parents so He blessed you with a special child." This, of course, made both Ben and I cry. I decided to go to United Hospital/Gillette Children's because I have heard wonderful things about the teamwork they provide, especially when you are going to have a sick baby. They also have a special center for spina bifida so we know that the neurosurgeons know what they are doing. Our main concern is that our child gets the best care.
Our schedule of events, as some might call it, is as follows: I will have an OB appointment every two weeks; I will also have an ultrasound every four weeks to monitor the baby and check the status of the spina bifida along with the hydrocephalus (extra fluid in the brain). Monday, September 15th, I have my first ultrasound with the prenatal department. This will be an in-depth ultrasound and will last roughly 2 hours. Then on Wednesday, September 17th, we meet the neurosurgeon, Dr. Partington who will perform the surgery on the baby.
Come December, I will have a scheduled C-section at least one week prior to my actual due date. We will know closer to December on the actual date because I could start going into labor early-which we don’t want. Once the baby is born, she (we don’t know yet, it’s just easier to use one instead of she/he) will be rushed off to the NICU. It is important, especially since she has an opening in her back that she doesn’t catch anything or get sick prior to her surgery. We will not be able to hold her before the actual surgery. She will have the surgery to close her back within 24 hours after delivery. The sooner the surgery after delivery the less deterioration will occur resulting in the best outcome for our child. As of right now we don’t know the extent of the spina bifida and will find out after our September 17th appointment. We are just praying and hoping for the best.
This weekend Ben and I are going on a little trip. We need to get away for a little while and comprehend the recent events that have taken place. We don’t know where we are going, but just need to get away for a while to clear our heads and be with each other. In a few short months we will have a baby to take care of and won’t be able to take off as easily.
We still have many questions and concerns, as you probably do too, but we don’t know anything more than what we are telling you here. Right now, we need your prayers. I pray to God every night that He will watch over us and guide us along this journey. We pray every Sunday when we go to church that He will keep the baby safe from any further harm and hold her in His arms. Pray, please pray for us and our special baby!
Thank you all!
With Love,
Paula & Ben
August 6, 2008
Hello Everyone!
As most of you know today we had my 2nd ultrasound today. Everything went well and it was very exciting to see our baby! The baby measured at 20 weeks and so did my uterus so we know the baby is growing properly. I have also gained 6 pounds since last month which Jane said was good. He/She has grown a lot since the 6 week ultrasound, it actually looks like a baby and not just a little peanut. We also could have found out the sex of the baby today, but chose to be surprised in December. We are very excited!
On Saturday, the start of my 20th week, I felt the baby move for the first time. We were at a Twins game and it wouldn't stop moving! I think that he/she is going to be a Twins fan for sure. The experience was unforgettable!!! I can't wait until Ben is able to feel it.
Starting next month I will be going to a clinic in Edina and preparing for the birth at Fairview Southdale Hospital. I wanted to start going up here so that I get a chance to know my new doctor and feel comfortable around her. My doctor in Durand actually recommended her and I look forward to meeting her. I am going to miss my doctor, Jane Poeschel, and her wonderful nurse Mary Jo. Once you get to know someone and have them as your doctor for many years it is hard to move on, especially when they take such good care of you. It was hard to leave, but I plan on staying in touch and promised to come visit with the baby.
We put the new ultrasound pictures on the website for everyone to see. The first one the baby is laying on it's side and the second one is the picture of the baby's face. The ultrasound tech was trying to get the baby to move more, but he/she wanted to sleep. My doctor said that the baby knows when something is going on and can sense the ultrasound. He/she would move it's arms as if it were saying, "leave me alone and let me sleep".
Have a good rest of the week!!
Paula
July, 20 2008
Hello Again Everyone,
Nothing new to report but I thought an update would be nice.
Paula is now 18 weeks along and showing a little! She has me feel her tummy all the time because it is getting hard. I am her husband so that isn't an invite for everyone to go up to her and touch her tummy! She kind of gets annoyed by that and I guess I would too.
Paula will be done taking care of the twins this week. She's sad to leave but is happy to have her hours go from 50 a week to about 30 a week. Her last day with them is July 23rd.
I will be keeping my job for a long time in case anyone is interested. I love my job and wouldn't change it for anything.
We recommend seeing "The Dark Knight" and apparently our Priest does too. We went to see it on Saturday and really enjoyed it. We then went to church on Sunday and our Priest started the homily by mentioning the movie. He talked about scenes from it so Paula and I figured he went to see it this weekend as well. Just an interesting tidbit.
Have a great week!!
Ben
July 9, 2008
Hey Everyone,
Well, its been a while since our last update. We'll try to update sooner, we've just run into some website problems that took up some time and is still taking up some time. But first things first.
Paula's appointment was changed from July 11th to July 7th because her doctor was going to be out on the 11th. Everything went great!! We expected this but its always nice when the doctor says everything is going well. We were able to hear the heartbeat again, 150 bpm which is what it should be. Paula's doctor was able to find the heartbeat much faster this time!
Our doctor always wants to do lab work when we go in, just to make sure all is well and, as expected, everything is great. Nothing abnormal. Nothing to worry about!! Not only for the babies sake but for Paula's sake as well.
We made another appointment for the beginning of August where Paula will have another ultrasound. As usual we will update after that, but we will try to update sooner.
Posting messages is currently down due to spammers. I only had to erase one spam message in the beginning, but know I have to erase at least two everyday. I'm working on getting a security image in place, you know, the picture with jumbled words and letters where you have to type in the correct letters in order for the form to post correctly. I know its a pain but it's better than me having to go through each message and make sure its ok before posting. This way you will be able to see the message right away. I don't know why people do that kind of stuff, but just a few ruin it for many.
EDIT: Posting to the message board is up again!
Hope everyone had a great 4th and has a great week!!
June 24, 2008
Hello Again,
As usual, nothing new with Paula's pregnancy. She's not really nauseous much except for when she sees bread. Her tummy is starting to show a little, but I only notice because she points it out. Otherwise, I don't think I could tell she was getting a bigger belly. She's beautiful!!
We'd like to thank everyone who was able to come to our house warming this past weekend. We hope you all had a good time!
We'd especially like to thank our realtor, Margaret Solberg, for hosting the party! We hope you had a chance to talk to her, she is wonderful. She did an awesome job, not only hosting, but helping us find an excellent home! Please consider her if you are looking for a home in the Minneapolis/St. Paul area. We couldn't have asked for a better realtor. She works for Remax out of Beth Richardson's office, www.movingtominnesota.com. If you'd like her contact information, contact Paula or I and we will gladly give it you!
I made a small change to the blog page. It was getting pretty long so I put another page on it. Just go to the bottom and click next (Or should it be previous since its really the previous posts we have done?). Anyway, thanks to all who have left a message on the message board.
We'd also like to note that the delivery date calendar is not just for family. It looks like its just for family because those are the only people who have guessed. It's for everyone! Take a guess and have fun! To the select few that guessed for a day after the due date , don't be surprised if you get a little something in the mail courtesy of Paula!!
June 17, 2008
Hello Again,
Nothing new on Paula's pregnancy. The "morning" sickness has pretty much subsided. Still nauseous but not throwing up. At our last appointment, Paula actually lost 2 pounds! Her doctor said that's ok, soon enough she'll start gaining it back really quick. She had another patient that did the same, but by the next appointment she had gained 10 pounds! I have a feeling, with the way Paula can eat, that when she starts getting cravings, watch out because it will be every man for himself!
With that in mind, the Twins have a few all you can eat nights coming up! There are a couple in August we are thinking of going to. Hopefully, Paula will be just about prime at that time and will be hungry all the time. The way I see it, when she gets done with them, the Twins will think twice about another all you can eat night!
We finished our front landscaping this past weekend and we love how it looks! I was completely surprised as to how it turned out. It was a lot of work and money but we are happy. All of our neighbors have commented on how nice it looks and how happy they are to have people actual trying to keep the house looking nice.
Thanks again to everyone who has left messages on our message board. If you haven't checked out the Delivery Date calendar, take a look and try to guess when Paula will deliver. Nobody will win anything if they are right, maybe a hug from me or something but that would be about it. Just a little something fun to add to the site. Once again, if you guess after her due date she will have issues with you (Sarah!!)!!
Paula's next appointment is July 11th. We try to update once a week and will always update after her appointments to let everyone know how things are going.
Have a great week!
June 11th, 2008
Hey Everyone,
We had my second appointment today. Everything went well! Jane, my doctor, said because I am over 12 weeks I should have a sigh of relief. This made both of us feel good since I will be 13 weeks on Saturday. My blood pressure and heart rate are good and I am healthy so there is nothing to be concerned about. What a relief! I have been fine the whole pregnancy, but it is always nice to hear that everything is going great. Plus, as some of you may know, I am always worrying about something.
My "morning" (I hate calling it morning sickness since it lasts all day) sickness has started to fade and I am not as tired as I used to be. I still am sick, but not nearly as often. I also feel much better and "alive". I can actually come home from work and not go directly to lay down. It's funny what a difference a week makes.
We also got to hear the heartbeat again today. She used something called Doppler ultrasound. It is so amazing to hear and realize you have someone growing inside of you. I could listen to that sound all day! At first I thought she had a hard time finding it, but she had a hard time keeping it because "little peanut" kept moving and she said, "your baby is very active". The heartbeat was in the 160's and she thought everything sounded great. It's always a good feeling when a doctor says that. Overall, we had a good appointment. My next appointment is July 11th.
Ben has added a delivery date calendar to the website. You can pick any day you want. Just put your name in, choose the date and press the button. Click here to go to the calendar. WARNING: IF YOU PICK A DAY AFTER MY DUE DATE (DECEMBER 20TH) I WILL HAVE ISSUES WITH YOU!!
Hope you all have a good day and we'll update soon!
Paula
June 8th, 2008
Hello Again,
Paula is now 12 weeks along and the "morning" sickness has not yet subsided. She seems to be feeling better but she is still nauseous some of the day. Our next appointment is this Wednesday, June 11th. We feel that everything will go great, but prayers are always welcome. Nothing has been bothering Paula, so it seems that everything should go along smoothly at the appointment.
Paula is still going to her regular doctor because she likes her a lot. We will eventually have to go a different doctor, though, because her regular doctor is located all the way in Durand. We think we will start to go up here around August. That can't come soon enough because Durand is kind of far. (A little side note on doctors appointments. I had a dentist appointment on Friday and came out with no problems!!)
I would like to thank Pops for letting me know about the date the site was updated. I would think to do that before I would update, then completely forget again when I do go to update. Paula sure can vouch for my forgetfulness.
Don't forget that there is a message board that you can leave messages on. Thanks to all who have left a message. We love to hear from you!
We're going to try to put something fun on the site soon so check back!!!
June 3, 2008
Hello Everyone,
Nothing new to report on the pregnancy. Everything seems to be going along just great. Paula is still sick. They say the "morning" sickness usually subsides around 12 weeks, she's now at 11 1/2 weeks. Hopefully it won't be too long before she wants to eat everything in site instead of feeling nauseous at the site of everything.
Transformers 2 has started filming and is scheduled to be released June of 2009! You can read the synopsis here. As you may know, Transformers is by far my favorite movie. I don't know why, I can't explain it, but its just an awesome movie. It looks like everyone from the first one is returning. Which is a good thing since sequels are never as good unless they get the main characters to come back.
Paula and I started to do some landscaping on our front yard. It is very difficult to determine how much material you'll need. We still have a little bit left to do because we ran out of rock and didn't feel like going back to Menards for the 8th time that day. We'll probably get it finished this weekend. Don't worry, I'm not letting Paula do any of the heavy lifting!
As I always say at the end of the post, I'm still working on getting this site better. Mainly trying to get it all self contained. For example, getting the blog so the page layout is the same as everything else. Still working on a photo gallery and trying to think of other things to incorporate.
Have a great of the weekend!
May 31st, 2008
Hello Everyone,
Everything is going great with Paula’s pregnancy. The doctor gave some medication called Reglan for her morning sickness. It seems to work alright but she still not feeling the greatest.
One thing Paula would like to add about the morning sickness. She would like to know who decided to call it morning sickness? She is sick all the time everyday.
She is now ten weeks along and our next appointment is June 11th. We will definitely update after that. Her appointment following that is July 11th.
We’re going to try to put some pictures of family up on the page, but since we had to wipe our computer a month ago, it’s tough to find pictures. That really sucked! Oh well, though, nothing we can do about it now but take more pictures.
May 24th, 2008
Hello Everyone,
As you may already know, the company I work for, Opto-Electronic Design manufactures a little security device called FakeTV. If you don’t know what it is, look here, www.faketv.com. It’s really a neat little product.
Anyway, if you go to that website, you will see a picture of me as a burglar looking up at a house with FakeTV showing in the window. We recently put out a press release for the product and did get some buzz going! If you Google FakeTV you will get some links that sell the product and others that review or explain the product. Most of the sites that review FakeTV let readers post comments, some good, some bad and some just funny.
I have copied and pasted a few for your enjoyment, all poking fun at the picture, apparently I look more like Doogie Howser than a burglar!
From engadget.com:
couchpundit @ May 21st 2008 12:07PM
So, from the photo, this device will repel Doogie Howzer from breaking into your house?
I’m confused.
Bad Beaver @ May 21st 2008 12:20PM
The burglar in the picture looks confused. Maybe he’s stoned. I bet he’ll try and break in anyway because of that, only to find you, stone too, rolling in front of your linkenlights device, droolin, then giving you good company—them lights are flashy dashy man, I mean brrright!
Yourself @ May 21st 2008 12:51PM
Is the burglar in that picture scratching his head with his crowbar?
Just a few funny comments!
Soon we will have a blog up so we can archive all the past happenings. Notice that that message board is up. We will try to get more pictures up.
Hope everyone has a great Memorial weekend!! (Have fun at the race mom and dad!)
May 21st, 2008
Hello,
Welcome to Paula and Ben’s brand new website. If you couldn’t figure it out already, Paula’s Pregnant!!
So far everything is going along smoothly. Well, except for Paula is extremely nauseous all the time! To us, that is a blessing in disguise, letting us know that everything is OK.
We had our first appointment Friday, May 16th. The doctor said Paula is doing great and doing everything she should be at this stage. At that time it was determined that she was 8 weeks and 6 days along, and her due date is December 20th.
As you you may be able to tell, the image above is of Paula’s ultrasound which was a very cool experience!! That is were everything turned ‘real’. We were able to hear and ’see’ the heartbeat!!. (The baby’s heart rate is at 171 beats per minute.)
Check back often as we will update with pictures, text, message board or whatever we can think of. Sorry the website is kind of lame, but we will be working on it to make the coolest website on the net. Everyone’s going to want to see it!
May 21st, 2008
This is our first blog. I never thought I would have a blog, but here I am blogging. Basically, I put up this blog to archive the items I put on the main page of our website in case anyone wants to go back a read what we wrote.