Yesterday morning, Cybell and Catalina headed back to Chile and slowly things in the Andrew household are returnng to a routine. I’ve really missed blogging and am looking forward to getting caught up.
There’s lots going on in our world. We have a gazillion meetings that we put off from August to September because of company, so the next 2 weeks are jam packed with appointments. Today we are meeting with Nathan’s teacher and his team at the school. We will be discussing communication. We got his dynavox with eyemax ready so it’s time for us to start using it.
We are also getting a lawyer involved in the process. Ronna who has been working with Nathan feels taht the school should’ve bought him the communication device and that they should be doing more with him communication-wise. At the IEP I asked them to hire a private speech therapist with experience with communication devices and they said no. So I realized I’d need to get a lawyer involved. We hired Sharon Grandinette and are in the process of getting her familiarized with Nathan and his situation. Tomorrow will be the first meeting with the team and then we will schedule another meeting with the lawyer to be involved. I love Nathan’s teachers, they are amazing, but I think the administrative staff needs to be more proactive and I want the lawyer to be involved to make sure everything is happening correctly for Nathan.
On another note, I have to admit I am worried. For the last couple of months we’ve had issues with Nathan throwing up. He is congested a lot of the time and the congestion seems to cause him to throw up every once in a while. He’s so skinny already, and watching him throw up after getting a full meal into him is just awful. For the first time I am actually consdiering the possibility of a Gtube.
The thing is, Nathan loves to eat. He loves food. His eyes light up when he sees food. The cunnundrum is that he loves food that is bad for him. I think a big part of the congestion and throwing up cycle is that we’ve been off his diet. We wanted to fatten him up so we were giving him whatever he wanted. But breaking his diet causes the congestion which causes him to throw up so we are then back at square 1. He is not so excited about eating gluten casein free food. So he doesn’t eat as much when he’s on his diet. And he doesn’t drink enough water. I was looking at a guide to how much water people should be drinking and he is WAY below where he needs to be. Which brings me back around to the thought of a Gube. We could really use some prayers regarding this issue. I am getting back on my super proactive gotta figure this out mode and see what we need to do to resolve this. I am going to take him to a DAN doctor again to have all of the testing redone so we can start back on square one with his diet.
Today Nathan did the first of the 10 session Rolfing series. He’s been seeing Tom, our Rolfer, for about 6 months now, but he was doing a hybrid movement therapy session with him and not the proper rolfing routine. I decided to go thorugh the 10 session rolfing series myself and boy oh boy is it stunningly incredible. I’ll write a separate post about it. So I insisted to Tom that I want him to do the straight Rolfing protocol with him, which we started today. Nathan loved it! He enjoyed the deep pressure and he loved everything Tom did. By the end of the session his body looked and felt different. It was pretty amazing.
Then on the car on the way home, out of nowhere Nathan started throwing up. He threw up most of his lunch. Typically after he throws up he goes on with his day as if nothing had happened. But today he cried and cried and cried and it just broke my heart. I could tell he was in pain. He got really hot after throwing up, so I took off his shirt and went outside with him where there was a cool breeze. Then I noticed he got cold and clammy and really pale. So I held him and rocked him on the hammock and a couple of minutes later he was asleep. I put him down in his room, waiting for him to wake up. That was at 4pm. It is now 1 am and he is still asleep. And I can’t sleep because the whole incident has me pretty freaked out. I hope we can figure out what’s going on soon and get him back to his healthy happy self.
On happier news we got to meet some wonderful friends from New York who have the cutest boy with CP on Sunday. We all hung out at Disneyland together. It was a blast! So my blogging will be spotty for the rest of this week as we are going to hang out with them a couple more times this week.
This week we also have an appointment with Dr. Kenny, a wheelchair fitting as we try to get a new wheelchair for Nathan, an appointment with a healer who works with sound waves, and Belle’s first official swimming class.
So now we start 6 weeks of “life as normal” and I am looking forward to getting ourselves into the normal rhythm of life!