Yep! My oldest is now 18. I’m finding it so difficult to believe this. I remember it very well when she was born. It really stinks. But you know what? It’s not like she is a kid that will use it as leverage. She is doing quite well. She is doing things that show she has amazing goals. She has a good job, she volunteers 70 hours a month helping others as well as she still helps out with her little brother. I’m not going to say too much here because… Well she is an adult and I don’t want her to feel like I just post anything. We talk about it first.
So Kodiak saw one of his core doctors. Dr. F. He didn’t make any mediation changes. But he did want Kodiak to have a sleep study. Also he wanted follow up with the spine team. First off, when I take a day off to do the whole Dr thing I’m really hoping to make a day of it. Get all the good and bad done in one day. Does this ever happen for anyone? So we headed off to Gillette Childrens. The spine Dr P. Decided Kodiak needed new X-rays and then come back into the room. So back down the hall I went with Kodiak who just then decided he was only going to walk backwards. But we needed to hurry because he had another appointment in another Gillette Building that we needed to drive to. The whole time doing X-rays he giggles. The techs were quick because they timed in between inhailing and the giggle itself. Then back to the room we went but this time he only would walk sideways like with a crazy limp. I gave up. But he is growing. He’s 4’7″ and weighs 67 pounds. The Doctor decided that his X-rays look good. Spine is not showing scoliosis. Good job therapy. However, he was still concerned about the instability in C1 & C2. So they got me out of there but not before scheduling in 1 and 1/2 hours a CT Cervical scan. We got out of there and to the parking ramp. He refused to get into the car. Ugh! So I went to the other side, pulled him in and shut the door quick. Then off we went to other clinic. This time meeting with the sleep Doctor. Dr. G. We went through the senerios and decided at this time our options were limited as a C-Pap is a strangulation hazzard for Kodi. But let’s do a sleep study to determine if something should be done surgically. We got that scheduled and then off we went back to the other Gillette to get his CT scan. This little guy was perfect. He layed there perfectly still all snuggled and swaddled.
So now we waited for the results.
I forgot to talk about the first day of school. But well, before school we went to a Luke Brian concert at the new Vikings Stadium. We parked, we walked, and walked, and walked… An officer told me the will call is on the opposite side. I was not sure what to do at this point and he said to leave my kids there because that is the entrance that is easier for the disabled. So I left all three and went. It was crazy. No one knew where to go and there were very unorganized lines for different things everywhere and no one understood where to go. Finally, someone said “this is the will call line but first you have to go through the security line. That took a very long time. Finally, at the will call window I was told I can’t leave to go give tickets to kids. Once I do I forfeit the tickets. I kept asking and explaining my situation. Finally, one guard who was working for the Vikings Stadium said she would escort me to where kids were through the inside. It was a long walk but we got to the gate and all got in. The next deal was find our seats. The guy again working for Vikings Stadium decided to show us our seats because it was his section. We were top section and 3rd row from the top. It was way too high for Kodi. I was beginning to stress out myself. Then Dustin Lynch came out and said who he was and started to play and sing. It was horrible feedback and you couldn’t understand a word or even recognize the song. I got up to go ask if we could stand down lower because Kodiak was not doing well. Just as I stepped out on the stairs management came and asked me is a DeafBlind boy was up here. I pointed to Kodiak. She stated that for safety reasons they wanted to move us lower and maybe even to the floor. We waited around awhile but then she came back with 4 floor seats for us. It was much better and by the second song Kodiak was even standing and dancing. We were right next to the speaker. It turned out to be fun. We had a few guys with their wives protecting us from some wild people in the row ahead of us. But I was glad to see my kids have so much fun.
So then we moved on to first day of school. Symone came up in her cap and gown and decided that was how she was taking Colten to school. He was a good sport. But he was not all that happy about it. Kodi has a new intervenor at school this year. So I hope he continue to progress to more tactile signing and Braille.
It took me awhile to finish this post. I’m not sure I will totally explain why. But there are more good things to come in my next post. I promise.
Chow for now.