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