Heath's journey 1/27/11

mujul79's picture

Heath had a wonderful Christmas. He was into his gifts this year but still needed some help with the paper.

Heath is still seeing his PT and ST once a week and TOD every other week.

On Jan 6th Heath saw the devemental pedi. She played with him for over an hour and asked me many questions about his history. Things that she had him do, build with blocks, puzzles, draw a circle and line. At the end of the visit she said his cognitive development was the same as his peers so he is smart. But that he has a global delay because he is behind in speech and motor skills. But she was not to worried because we knew he had Chiari and the hearing imparment, and is already getting services for them.

She said I should stop trying to deal with CHOA (who still have not sent his rechords) and talk to his pedi about doing the test over. Then she sent us to the hospital for more blood work. They are doing some genitic testing and I should have the results soon.

The night before Heath had broken his hearing aids so we also visited that part of the hospital and found out his new molds where done. So he now has blue and red ear molds. And she was able to fix his old ones for me so I can keep them for his keep sake box.

On the 7th we went to see the pedi to talk about doing the sleep study over here in Albany. She was supportive and also said we should up his speech services.

On Jan 25th Heath had his sleep study. We was so good at letting her put all the wires on him and playing when we arived. He just ate crackers and watched Signing Time on my lap top. It was about 8:30 when she was done and the lights whent out. I wish I could say the rest of the night went as well. He was not ready to sleep so by 11 all the leads had fallen off and he was cranky but not sleeping. The lady had to come back in and redue all his wires. At Midnight he let me nurse him to sleep. He was up often all night because he hated the pluse-ox and kept taking it off or rolling and getting stuck in the wires. I stayed with him in the bed and he to my breast almost all night to keep him asleep, at 8:30 they woke us up so I hope they got some usedful info. I am so thankful that my Aunt came with us for the night so all the fussing and up and down I was not the only one up all night.

We should have the sleep results in about a week and then we can send them to the Nero S and see what he thinks about them and if surgery will be of any help to Heath for the Chiari.

On the 2nd is Heaths ISP appt and we will find out if he still needs to be getting PT and SP services. His PT teacher can not make it so she gave me a copy of his report last week and he is right at 19 months (His age will be 27 months on the 4th)

His next Hearig Test is March 25th and back to the Pulmonologist on April 28th.