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