Friends and Family,
Hello! Just wanted to update everyone on “the state of Kenai” Attached (or inline) is an mri she had done in September. The curve in her cervical spine is very obvious. These (the vertebral anomalies, fused vertebrae, fused ribs) are apparently a random birth defect. The doctors have said that the spinal issues are not related to the seizures she is having.
What has happened in her neck is that the vertebrae did not form properly and so one side has been growing while the other has not. As it grows it pushes her head further to the side. In the doctor’s words, given time, her ear would be on her shoulder. The severity of the curvature requires that she have surgery ASAP, which looks to be in January or February. They will go in through the front of her neck and remove the curved part then flip her over, go in through the back of her neck and removed the little, straight part that is not growing. They will then replace these with screws and other “hardware”.
Between now and her surgery (date has not been set) she will have lots of testing done. Sometimes kids with these kinds of defects can also have heart and/or kidney defects. They will do a full pulmonary workup and a renal ultrasound. At surgery time, she will have 2-3 days in the hospital and then it’s home in a collar for about 6 weeks. This surgery will solve the problem in her neck with no further surgeries foreseen. Aside from setting off metal detectors J, the only way this should effect her down the road is that she will have to avoid things like contact sports (yeah, maybe we’ll have a swimmer!).
We are so grateful for the care Kenai has received at Cincinnati Children’s. We feel confidant that her surgeons are two of the best around, especially the orthopaedic surgeon who is running things.
On another note, Kenai’s seizures increased as we entered November and became ridiculously frequent. We are changing her medication and should know if this one works in about a month. We have already seen improvement just reducing the dose of her original medication.
We appreciate your prayers and support. I believe prayer has played a vital role in all of this and that God has been involved from the beginning. Please continue to pray for all of us as we struggle through this.
We also still have houseguests, Ronna and her son Jayden, living with us. For those of you out of the loop, Ronna is 17, a senior with a 23 month old son. She is an amazing young woman who has beat every odd you can imagine and we have been so blessed to make her a part of our family. We brought her into our home when we discovered that her living situation was not safe. Most of you know that our house is very small so we are hoping to find a more permanent place for them to live. It’s more urgent now with the upcoming surgery that we have our house back to ourselves so that we can create a peaceful environment for Kenai. Please continue to pray that we can find the right solution, a quick one, that will be good for Ronna and Jayden.
With Deepest Appreciation,