Andrew had his sleep study and EEG on Thursday night. I went with him and stayed the night. It was a rough night of sleep. It will be interesting to see the results. He had 27 electrodes on his head and 5 or 6 on his body. He also had a nasal canula in his nose to check oxygen levels. He tolerated the process of putting them on as long as he was watching Baby Einstein- gotta love those DVDs and the music that they have. We arrived at 7 pm but the process of putting the electrodes on lasted till 9:45. They woke us up at 5am to get ready to leave, so he didn't get the best sleep that night.
We have been in contact with the Thoughtful House in Austin. This is a center that does biomedical research and intervention to recover children from Autism. They have really given us some hope. I had an hour phone interview this week, which was intake and then Andrew's case was presented to all of the doctors to see what the next step would be. They suggested an aptmt with their nutrionist which will be on Oct. 4th? I think. After this aptmt we will have an aptmt with Dr. Jepson. He is very well known in the field with Autism, has a son with Autism, and has written a new book- Changing the Course of Autism. My Dad bought us a copy and has been reading his copy. He said it is soo good and provides lots of hope for our children on the spectrum. I am excited about this, especially since Andrew seems to be getting worse. Their website is www.thoughtfulhouse.com
Andrew has been coughing for 3 weeks, we started thickening his liquids again to honey. Obviously the SLPs who were so rude to me this summer didn't know what they were talking about and did a horrible job on his swallow study- $90 dollars down the drain. It would be fine but we know he is in a lot of pain- crying, coughing, crying some more. It's frustrating and even though we don't want him on any meds that could potentially slow his development even more I have to take him a pulmonologist on Monday to get him checked out.
Yesterday he had a great day. We started out at Sea World where he smiled and stared at all of the fish in the aquarium and relaxed in the stroller. We then went to Gymboree for his cousins, cousin- Sophie's 2 year old birthday party. He loved it! This was the coolest party. All of the kids ran around jumping, running and climbing on things, and dancing to music. The kids had a blast! After a nap we hung out with the Altamirano family and relaxed. What a great day!
Rett Syndrome. One year Post Surgery
3 months ago