We don’t really like going to the doctor. Taking Kodiak is mentally and emotionally a challenge as well as a physical challenge. The reason is we have learned with Kodiak never to worry, never to expect certain things because it always ends up different from expected. Sometimes way worse and sometimes good news. So we try to go expecting the worse and being totally open-minded. The good just ends up being a welcome surprise and relief. It’s exhausting.
We left super early to see the spine doctor. It was snowing and Colt woke us all up around 2:30 am as he got really sick. I will spare you the details. He still was not good when we had to leave so Symone and I took Kodi and realized we were running behind. We wanted to get coffee but it was not an option because the roads were wet and slick with freezing rain. We made it to the appointment on time. We did height and weight check… 49 1/2 pounds but grew 1 1/2 inches from November. If I remember correctly he was 50 inches last November. So I was right he’s growing and that’s why he is so skinny again. I fully expected to hear from Dr. B that he would need a brace.
When Kodiak was 2 1/2 or 3 in 2005 he had a sitting X-ray and he had a curve of 26 degrees. I was told sitting makes the degrees more severe but the X-ray in November is actually 20 degrees while he was standing. So he doesn’t need a brace at this point but to come back in two years and be checked every year as a teen. I also got more clarification on the instability of Kodiak’s neck. C1 and C2. At the base of your skull is a ring where your head and spine meet. (not the medical terminology) Kodiak’s ring is incomplete and it’s why he has torticollis. The only way to correct it would be to fuse it and that’s not a good option for him right now. (IF EVER) He would not be able to turn his head at all. Since we don’t have good communication and since he is stable and spinal cord is not showing signs of being at risk at this point we are good to leave it. This is a congenital defect. I plan on doing research on that more. I want to have a clear understanding in my mind. I know from other doctors and other visits that Kodi should not be on a trampoline. Also keeping him very active and doing walking, swimming, wheelbarrow walks with him on his hands and us holding his legs is also good for him. Dr. B. said he has good balance and mobility. As a DeafBlind kid he’s amazing in my eyes and yes he does fall. But for the most part he amazes me. I’d say its the hearing piece and loss of vision that plays a huge roll in his falls.
Also because he has a hump on his back it’s helping the scoliosis from progressing more. And his shoulder? It’s not frozen… we do need to work with it though. Poor kid.
I totally expected we would be dealing with a brace. But I’ve been surprised in a good way. Again, the news your child scoliosis is bad enough. But knowing he doesn’t need bracing makes it easier. I don’t know how we were going to deal with little communication and him having to deal with a brace. So for now keep moving forward. Keep working on communication and put that off another two years. It’s a relief and good news for now. I don’t want to feel sorry for him all the time. I want to enjoy his life as he knows it and try to keep him happy and going towards communication.
Dr. B agreed the eye deal was probably the really bad source of pain. My poor little guy probably had no idea what was happening and no idea how to tell us. I feel so bad about that dark two years. Two years of unexplained torture and trauma and no way of knowing how to help because we didn’t really know what was going on. I only hope he remembers enough to tell me someday what happened and how he felt so I can understand what happened and help him as well. Dr. B also said if we have Kodiak on meds and his base line is good, don’t mess with it. We need to be able to function. He needs to learn and grow and sleep. So I felt good that he felt that was as well. So far Kodiak’s team is on the same page. His team is a large group of very smart, educated and kind doctors all willing to help this kid out. Willing to help us in our life with Kodiak. I’m so happy he doesn’t need a brace.
So the spine:
The curve this way helps the other curve in second photo.
His 20 degree curve.
Ok. So Colt I need to tell you how sorry I am. I left the doctors and decided to take Symone and Kodiak walking at MOA. I know you hate shopping. This was more so we could keep it quiet longer for you to sleep and keep Kodiak away from you longer. Also I figured walking him that much would make him tired and not want to go upstairs were you were… Anyway it worked. We got home and you felt somewhat better. Kodi was too tired to get into things. 🙂
We got home and rested for the weekend. And it snowed! Beside Colt being sick… all was good!