Heath's Journey Nov 2 09 (the last few months)

mujul79's picture

On Aug 31 Heath's hearing aid molds where made. The Audiologist was so nice and answered a lot of my questions about infants with hearing loss and even gave us some places we can call to get support.

On Sept 15th David and I took baby Heath to look at the Atlanta Speech School to have a look around. It is an audio verbal school and while it I am sure kids coming out with awesome results we just did not feel like it was going to fit our family by time we walked out the door. The director was not supportive at all about our families feelings on using any sign even baby signs with Heath. The teacher kept saying if he sign he will talk like a deaf person and if we do only audio verbal lesions then he will sound "normal" right not "normal" is not the goal our family goal for him is communication in any form.

We also are set up with a program called GA PINES it is a group that is free to all hearing impaired children in GA and they come out every other week to work with him and talk to us about any needs he may have. Like how to get him into the special school classes when he turns 3, going over progress he has made with ASL or speech since her last visit and just getting us that extra support.

Total communication is something that is debated but after talking to lots of other people we decided to teach him Total communication, using verbal, ASL and lip reading. While we know he needs more direct verbal speech spoken at him to catch language. Hearing babies learn not only by being talked to but from hearing people talk around them. Heath misses even with his aids on (or it is distorted) sounds from anyone that is 2 feet or more from him. We do not feel like ASL will hinder him but more that it is so much more important for him to have communication then proper speech.

Now that said we did not want to write off audio verbal schools all together so I am going to the Audio Verbal School of Atlanta on the 17th of Nov to have a look around.

On Sept 22nd we went to the ENT and found out his ears are all healed from getting the tubes, but that he is still setting off his apnea alarm so another sleep study is set for after is birthday.

On Sept 24th 2009 Heath got fitted with is hearing aids. Right away he started making sounds and smiled when he heard my voice. That night I was showing David how to use them and in ten min he had crawled all the way back from the living room to the bedroom and found us by following our voices. He had never crawled more then 4 feet at a time or left the location of where I placed him with toys before. I am sure it was because he could hear us!!!!! The rest of the first 2 weeks where hard he kept taking them off and was fussy when we had them on him. But on Oct 15th we where back at the audiologist (he had already broken a hearing aid) and she adjusted a few of his sittings so they where not so loud but so he would not miss vocals. Now we don't make him have them on if we are in the car (he gets fussy and takes them off anyway) and he is not perfect about it but he is keeping them on longer each day and pulling them off only when he gets tired.

On Oct 2nd we went to see the CF Dr. He wants to see what the sleep study results are. Said Heaths jaw looks fine and we talked about now that Heath is crawling doing a surgery reduction should the next sleep study show sleep apnea still. I am not a fan of this at all. It is an evasive surgery with a NICU stay for 5-7 days with him sedated, feeding tube and maybe help breaking with a vent, with no guarantee it will even make any improvements to his condition. He kept saying "it is something we can try" David and I are still thinking this is a last resort and will ask for a adenoids removal to free up space or staying on O2 for a bit longer before we go that rote. This Dr. has been pushing us to do the surgery since Heath was 3 weeks old. It just seems so aggressive with no promises that after he would even be free of the o2.

On a happy note I have been taking him once a week when we don't have a Thursday Dr. visit to the parents morning out program that I took Tessa to last year. I stay and volunteer in his class. This way I am giving back and he is getting some social and verbal communication without me having to leave him anyplace, with is aids or from my boobs.

The kids just love him and early in the month Peter wanted to take Heath for show and tell at school.

Peter asked to take Heath to school with him for show and tell.

We have gone in a few times and his classmates are always asking him "What is wrong with your brother?"

Well went went in and Peter got up in fount of the KG class and says "This is Heath he has this to breath (O2 tank) and hearing aids so he can hear us and that is just who he is." And then he sat down. It was clear that nothing was wrong with his brother.

Tell them, Heath has some special needs but all people do because no one is perfect anyway so love everyone just the way they are. Heath's just happen to have needs that can be helped by things like the o2 and hearing aids out the outside of him where some people take medicine or have allergies and other things they need help with like glasses to see to help them.

I then unhooked Heaths O2 tube from the tank and turned it up so the kids could hear it and we followed the tube from the tank to his nose. I showed them the part in his nose was short and soft and did not hurt him. And tried to enplane that the hearing airs where like him having a microphone and little speakers just for him to make what they had to say louder to him because with out them Heath would not be able to hear them asking all the questions they had.

Heath and I also went to the pumpkin patch with his class and we did the corn maze I try not to let the tank slow us down. Although I am happy to say his Dr did sign another 6 months handicap parking form. Getting that is just a blessing. We have not heard from SSI yet.

Tessa loves Heath to death but will take any moment I am with him to do something she knows she should not be doing. We are truly blessed to have joined a church and at how helpful they are to us on Sunday and all week to her in school. I know she is loved when she is with them and it makes me feel a little less guilty about sending her to school so young (2) so I could meet Heaths needs.

Next for Heath:
Tour the other school on Nov 17th
Nov 17th hearing aid check (once a month)
GA PINES, Nov 4th, 18th and Dec 2nd and 16th.
Every Monday PT
Nov 4th is his first b-day!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Nov 5th CT
Dec 5th Sleep Study
Dec 18th vacation to NY for x-mas!!!
Jan 20th back to the ENT
and some time after that back to CF

Today Heath was doing some standing during PT and resting his belly on the ottoman and playing with toys. That was the longest I have ever seen him stand. She always says he is so willful about learning a new skill and he just loves to see her come every week to "play". But is he ever funny now that he has his hearing aids he is just coming out of his shell and is stubborn. She gets him to stand anyway and do what has to be done. Next we are going to be trying him with a stand up walker. I don't think without PT with BCW he would be doing all he can do. His PT has showed us how to teach him to roll over, get on all 4's, crawl, get from crawling to sitting and we are now working on pulling up. Early intervention has been a life saver, even if he was not mastering any skills just to have someone come over every week and check on him and play with him is a huge help. I don't feel like I am so alone. Don't get me wrong David is helpful but he is doing a lot out the of the house to keep things going that the "house/kids/appointments" stuff falls a lot of the time on me.

Heath also just this week started eating some table foods, he had corn and green beans. He is still a much bigger fan of oatmeal and apple sauce but we are trying to up his iron some as it is still low. Oh and he is a fan of dry cereal, it is so cute to figure out that pinch grasp and then getting something into his mouth.

I can't believe his birthday is this week. A year has passed and we are so blessed to have him here with us. I could not have done it without all the support Thanks for taking the journey of baby Heath with us this past year.