DeafBlind, Charge Syndrome and Scoliosis

posted in: Kodiak My Little Grizzly | 2
Scoliosis spine image
Scoliosis spine image

I don’t know if I really even slept… I got up and Symone told me her head still really hurts. Colt went to school though. Kodi was home and played with Mark and Anna… Thank you for coming to work with Kodi. I really appreciate it…

I have in 40 hours already this week.  I’m tired. But before closing one clinic and heading off to the Urgent Care clinic I asked Dr. B about Kodiak’s spine x-rays. He showed me that Kodi has 24 degrees curvature and that I need to get him in to see him but at Gillette… Thank you Dr B. On my way to work the Urgent Care clinic I called Gillette and got him scheduled with Dr. B in March.  He told me to go there because they will have to make him a brace. Poor kid. He will not know what happened. But if we can help it improve. I have a cousin that had to have surgery for Scoliosis   Andrea I’m sorry but I wish I had asked you more about this.  Do you have pain? Do you have any other symptoms that I might need to know since Kodi can not tell us?  It makes me wonder now if he does get headaches, and body aches with the weather change… Anyone out there that can tell me how they feel with Scoliosis? I also know the kid has like a frozen shoulder on the left side, Torticollis and instability in his neck. But at least he can run around 🙂 🙂

Sometimes I wonder how much suffering a person should have to go through. I’m not looking forward to this at all.  I know someone who does log-rolling but I can’t see Kodi doing this unless he has cables holding him and then how does this help… LOGRolling in the US  Ok, so there are worse things out there for him but quite simply put, Kodi has been through so much more than I ever have, more than most people out there and all while he is DeafBlind and people doing things to him that must seem quite mean.  However, he is my little “giggle factory”. He giggles for no apparent reason and it’s infectious. We all end up giggling because some thought, some feeling, or what we don’t know because he can’t tell us has turned on his “giggles”. People wonder how I still smile and how I can be happy. First it’s my faith, Second If my giggle boy has gone through this much and can giggle? WHAT is MY excuse for NOT smiling?  Besides there are times I’m overwhelmed and cry.  I did Tuesday night. I did for Tuesday night was a night where so many worries, news and problems all came at once.  Then very little sleep.  I allow myself to wallow in that self-pity long enough to walk through that fire and come out stronger on the other side.  Anyway,,, I cried! But I’m ok.

I long to go to bed. I’m waiting for Kodi to drift off… He is still giggling but his giggles have slowed down a bit. I love my babies. I will go to bed and pray and not worry. I’m just too exhausted for that!!!

2 Responses

  1. Reblogged this on Oyia Brown.