Heath's Journey 10/6/10

mujul79's picture

Hi everyone.

Wow I don't even know where to start.
After our move in June life has been fast pace.
Peter is in school and Tessa, Heath and I get to hang out all day.

Heath is getting PT, ST and TOD (teacher of deaf) services and they come to our house. He is making some amazing progress. On Sept 28th just a few days before he was 23 months he just got up and started walking all over the house and dropped crawling as his transportation choice. :) His speech is coming along too with imitation. "Do it" is still the only 2 words he puts together but many other single words are starting to come out.

Heath is still always happy and willful he is the blessing in my daily life. His giggles make me smile and once he got his hearing aids his laughter turned from facial expressions into belly laughs and I can't stop but enjoy it even now. The first 11 months of no sounds not even a baby’s coo was heartbreaking for me. I get choked up just thinking about how lucky I am to have not only a happy child but one that can hear him and us LOL and is making sounds. His last hearing test shows that he is hearing in normal range for vocal tones as long as you are within 3 feet of him :) He is still having a hard time hearing any tones under 35DBL. Just this month, His 2nd set of tubes have fallen out and his ear drums for the first time without tubes are still moving For now ENT says to just leave him be until the hearing aids stop working for him.

His health stays about the same. We are still on the meds for preventing respatory problems daily and a few times a week he still needs the rescue meds. We had a visit with the lung dr and were sent for another lung x-ray and CBC with blood gas. Poor little guy hated it all. But the results came back normal for both. SO the talk about getting a trach is not so much on the table, but an option if things don't improve. He is on the highest meds he can be on now so it is looking like our only options should he have an issue with the winter weather and breathing (this will be our first year in NY) no one can tell me if weather is going to effect his respatory or not or if he will end up back on O2.

Also we had and x-ray done of his neck his new Pedi here was thinking he looked like he always kept his head to one side and I agreed. That x-ray did not come back normal. It is showing his c1 and c2 (top 2 by spine) are tilted and abnormal and could be putting pusher on his brain stem. He will be having a MRI of his head and neck on Nov 17th and because of the OSA it will be done with general anastisia. After the MRI results we will be going to see a nerio surgeon.

We go on the 20th to have new leg braces made.