Heaths Journey 7/24/09

mujul79's picture

Hi everyone. We are home safe in GA.

We went to ENT on Tuseday. She says his tounge is starting to fit in his mouth better but that he is still having controle issues (nothing I did not know I am the one that feeds him and we are not able to get him to take baby food mush yet and swallow it) He had lots of wax in his ears and at first she thought maybe that was causing the hearing issues I was noticing. After cleaning them out (he cried) she was able to look in his ears and he has no infection (he has never had one) so they said he was ready to have his hearing tested.

First they tested the ear drum.


left ear durm is not moving at all

right ear drum has limited movment with negative prusher

Then they tested to see what sounds he is hearing

He failed that in both ears the computer did not record him hearing anything. (recording his eardrum moving like it should)

Then we did a sound box test where they had him in a soundproff box and watching a TV that had no sound on it. She talked and played tones through speekers at diffrent volums to see if he would leave the eye stimulation and turn towards her voice.

He never turned left

He did turn right but only for vocal sounds louder then 30 dbls. But tones he did not turn to until they got to above 50 dbls.

Based on this and his history of not making any babbling sounds we have decided to have tubes put in his ears. If he has fluid in them causing his eardums not to move right doing the tubes will slove his hearing problems right on the table. It is not going to be a normal tube prochudure because we have also decided to have him not use the gas for the 15 min tubes but intabate him for a hour and while he is out do an ABR test to see what sounds his brain is hearing. This surgery is Aug 19th and out patent and we are alowed to watch for the obsurvation deck in the surgery room. By time we go home we will know if it has sloved any or all of his hearing issues. And if not the info from the ABR will be used to make our next move in how to manage his hearing.

I am not happy that my baby is not hearing but it is a relife to know at least this is another thing I knew to be true and now the dr and my family belive me and not only that but unlike everything else just being a wait and see we can do something to try and help him. Some people that know him are not so sure that he can't hear as he dose respond but he loves to watch people's faces and is hearing loud sounds out of the right ear so that explanes his responding. We did a facal test where we mouthed to him and did not make sounds and he responded the same as if someone was talking. Loud noses make him jump and cry, because most of his world is so siglent he gets scarred.

The last Apnea report showed he is still having true events of apnea as recent last week. We will still have the o2 and repeat the sleep study after his 1st b-day. We go see the genetics on the 20th of Aug.

I can't wait to see if the surgery helps with his PT too.