Heaths Journey 8/21/09

mujul79's picture

We had a good week.

On Sunday while David I and the kids where playing a game Heath got up on all 4's and started to do this bunny hop/belly flop to get him self around. So on Monday he did it durring PT and we have a forward moving little buddy now!!!! It is not crawling yet but he is getting around and that counts.

Wed was his surgery. At 4 am I got up and ready and we arived at the hospital at 5:30am. Everything was right on time they took him back into surgery right at 8am. By 8:20 we got a call that the tubes where done and his ears where dry and that they where starting the ABR. David and I decided to grab a bite to eat from the vending maching. It was right about 9 when the audologyest came out to get us and took us to a confrance room. I knew right then we where going to get some kind of news. She told us that the tubes went in well and since he had no fluid we can know that the ABR test is accurat. It showed that he has hearing loss in both ears and it is not a type that can be fixed with surgery, the tubes surgery did not change his results. They say he is not hearing anything at normal speeking level or below so he is missing out on alot of sounds. He did respond to sounds such as a loud door slam. Our next step is to get him hearing aids (not sure yet how well that will help) and teach him to sign. We are going to be doing some more testing on his ears to try and figure out what caused his hearing loss or if he was born with a loss as he did pass as a newborn but only after they did the test at the hospital 3 times and he has failed it every time tested since. The birth hospital could have given us an untrue pass.

Thursday we had his genetics visit. His chromozone study came back normal and he was negative for beckwith weddermann syndrom. After taking his history we decided to do more testing. So they drew blood and are now going to count the geanes on his chromozones to make sure he has the right numbers. But the genetic dr felt that it also would most likly be negative too. He said to check back with nergology because of the left side weekness he was thinking that in about 6-12 months a repeat CT will show a diffrence from his baseline one done in May. He suspects Heath had a stroke while I was prego or during the birth and that it is causing his problems.

Thanks for reading. I just encourage you if you think something is not right with your baby to get it checked out. If I just let it go we would not be getting him the help he is getting now. Or maybe he would not even be here because of the risk of SIDS with his Apnea. He has a good chance to catch up with his peers now that he is getting all this early intervention.

Our next steps:
get fitted Hearing aids
tube post surgery visit in 4-6 weeks
call nerology (he has a vist set up for Dec, but I may try to get one sooner)
genetics- test should be back in 3 weeks
And keep doing PT and add in someone to help us as a family learn to sign. It is a blessing that because of www.signingtime.com both my kids already have a good base

I expect to someday having some OT and speech but first we having to get him the hearing aids and see how he responds with them.