Kodiak is at peace when he’s asleep… I came home from work and found him asleep… I was worried but then big storms do this to him. He fights with his eyes and head and then wants to lay down because that is what CHARGE Syndrome kids do… They need to be horizontal because of their balance and equilibrium issues. So when there are storms and rapid barometer changes Kodiak just flat-out feels safer I think lying down. He was more off-balance this week. And that left eye took a beating. It makes me so sad. I really wish he would resort to signing “eye hurt” we keep telling him but he just won’t sign it. I take him out in public and forget how awful and horrific it is. People stare as he’s wailing on his eye and we try to stop him and say “no! Eye hurt!” And at times I’m sure they wonder how he got such a black eye but then they see him do it himself and I think they get it. I can’t think about it too much anymore. It makes me cry. I miss those beautiful eyes!
On to funnier things… So my kids have a job again this weekend. And it involves dogs. It’s the one time they smile because they get to know an animal and seeing them again makes them smile… Like seeing a friend again. Well today I was going to let Kodi see the doggie… I signed “dog” to him and he pushed my hand away! WHAT?!? So because of that I decided maybe he knows it’s a dog and he’s not in the mood to see one today.
Awhile later we were sitting and he was sitting on Symone’s lap and he kept signing “sit”. She kept saying “Why is he signing “sit”?” We were giggling because we figured he was just practicing the sign and telling himself he has to sit.
Then we took Kodi with friends to Noodles for lunch. Well he loved his Mac and cheese and it was so crowded. So he was standing next to me and at times sitting on me and I was feeding him his food. He would get up and spin around in a circle and sit back down and open his mouth ready for another bite. He will do that when he’s all cuddled up falling asleep in my arms… Suddenly stand up, spin around and then curl back up in my lap and go to sleep. You’ve seen dogs do this… They spin around and the plop on their doggie bed? It makes me laugh every time… I don’t know why he does this. Like he has to make his nest! Or it’s some strange impulse he gets to spin in a circle. I just hope it’s not a form if a seizure in him.
I was thinking of flying to a conference for CHARGE Syndrome. After talking it over with the experts and knowing Kodi and pressure related things flying is NOT an option for him. He would not do well, being so confined either and I would not be able to explain what was going on and why. So we are stuck with road trips… I prefer that anyway. But we still have the seatbelt issues and I’ve been researching but am still finding roadblocks… Grrrrr!
Thanks for all the tips so far by the way… We are brain storming and trying to work out a solution… 🙂
We went to see my grandma today and took her flowers.
Kodi felt them. He tried to eat one. I signed “No eat flower!” And the kid completely understood. He giggled his boyish mischievous giggle and then tried it again only this time was teasing and when it touched his lip and nose he shoved it away and was giggling so hard and no sound came out just you could tell how his body was jerking… When he finally got air he squealed so loud. What a silly kid! He loved my grandma’s couch. He was so good there. But then he thought it was so funny to stick his finger in my ear. So I did it back. He would laugh so hard like it’s the funniest thing ever.
Still cloudy and spitting snow. We still have snow on the ground.
Kodi went to sleep quickly tonight. He curled up on me and kept reaching up and bopping me on the head. Then kids got him a blanket and he went right to sleep.
Well we are all settled in for the night. My phone got an aurora borealis alert but its cloudy here so probably not going to see them. 🙁