Identified, now what?

I may have given the impression that Matt got his ear molds that night in the hospital. No, his fittings were sent off, and we got the ear molds one, maybe two weeks later, and loaner hearing aids from the clinic.

But we woke up that next morning with a deaf son. He was always deaf, but now he was finally, "properly" labeled. Now what do we do? We didn't even have the hearing aids yet.

This was a bit of a stressful time in our lives. I was finally pregnant with our second son, after a couple of miscarriages, and had recently been hit by another car. At one point we thought we were going to loose this pregnancy, too. We didn't, but that was just the beginning of our stressed-out summer. We had some other issues we were facing, too. So I'm left to carry my chunker son Matt around while pregnant with my next son. THEN we had to move to a different home on post, I had to do most of the work as my DH was busy with work. This was all during the same time our son was finally diagnosed as being deaf. Very interesting summer.

So what could we do? I was so tired I didn't want to move. But I made phone calls. The audie had given us a booklet of resources in our area, and I immediately started contacting folks who could help us. Within days I had a case manager with the local school district, and Matt was soon evaluated for in-home early intervention. I also signed him up for early intervention at the State School for the Deaf, one hour away. I did this with an open mind and am SO thankful I did. Although they used sign language, the school for the deaf (SFD) had a speech therapist who was AV trained, and they really did work on Matt's oral skills. They worked hard with each child at their individual levels. Amazing. So Matt ended up with an in-home therapist one, and eventually two days a week, and I drove to the SFD for sessions two days a week, too. On top of almost weekly visits to the hospital, almost two hours away. I learned ASL at the SFD, and the county gave us a SEE instructor at home one night a week, too. I believe in covering all of the bases!

Remember I was pregnant while I did this. This is the time in my life I started to drink coffee. While pregnant. Someone at the SFD asked me about drinking coffee while pregnant. I told them that drinking coffee had to be safer than driving off the side of the road.

I moved like a rocket ship, fast forward. That was just how I coped. The mountains of paperwork just kept growing, and I was forced to develop a good filing system for everything. I was trying to learn everything I could about my son, how I could best help him.

Surprisingly, Matt did well with his analog hearing aids. For a while, we didn't think he would need a cochlear implant. Matt was learning to recognize sounds, started making his own sounds, too. He was really enjoying his teachers and playgroups, and would sit with his speech therapist for an entire 45 minutes! He just wanted to learn. This all started in August, his schooling in September. I still have his communication books, notes from the teachers. Really cool.

But then the Spring came along. Chris was born in January, was finally sleeping through the night, and then Matt's "dizzy spells" started in March. The months previous to this Matt had had his pre-CI MRI and CT scan, and had been diagnosed with bilateral Mondini Dysplasia (in his case 1.5 vs. 2.25 turns of the cochleas) and Enlarged Vestibular Aqueducts. So we were now thinking his imbalance may have something to do with his malformed inner ears. NOT something neurological, after all of those other tests we had run in the past. But Matt went through almost three months of weekly periods of imbalance. It was scary at first.

I remember Matt just walking inside the home and then he just couldn't walk. He was listing to one side again, couldn't hold his head up, started to throw up. Freaked Out Mommy was back in full force. I absolutely HATE to see kids in pain, and this kid had the most confused look I've ever seen on his face. We rushed him to the doctor, and had another overnight stay. We couldn't find anything obviously wrong, and he improved a bunch, so we went home. It took days before he could walk much better, then it would happen again the following week.

Many times it would happen after being outside. Once after getting bumped on his head by a girl in the park. And then it would happen when he was laying prone in bed at night. We ended up sleeping with him, holding him upright through the night. And we stopped giving him chocolate milk before bed, too. I became a pro at cleaning up puke, I hate to say. My new baby was sleeping through the night, but we weren't.

I started doing my own research on inner ear malformations and balance disorders. Nothing seemed to fit just right until I came across a parent online who had gone through the same thing. She found that her child had bad allergies, and these allergies possibly aggravated the inner ear, caused swelling of some sort, and it left her child imbalanced. Well, a knock to the head or an ear infection can cause swelling and maybe imbalance! This was starting to make sense! She said she gave her child Benadryl and noticed an immediate positive effect. Couldn't hurt to try, right? Heck, at this point I had actually accepted that my son would never walk normal, would have to live with his dizziness. How could Benadryl hurt? I asked my doctor if it would be okay to try, he agreed with why not. It really did work in Matt's case. If he did get dizzy, it would at least soften the effects. We were popping it in him every four hours, around the clock. Other than that, we were sleeping through the night, finally!!!!!

Through this we did notice that he was worse on yellow pine dust days. Not so strange, as I have minor dizzy spells and tinnitus when the yellow pine dust was bad. So did our neighbor across the street then. It all just fit together and the Benadryl worked for us.

During this time his hearing took nosedives. That was hard to watch, as well. I still have all the audiograms in chronological order. Matt tested very well in the sound booth, but with every dizzy spell his residual hearing would decrease. We had digital hearing aids at this time (thank you insurance!), and the audie would test Matt and then try to update his hearing aids to help him better. But his decline was rapid and there came a day when the audie told me there wasn't anything more she could do with the HAs. Huh. It had been almost a year since Matt was diagnosed, and we were back to considering the cochlear implant for him. Finally.

I need to get more coffee, kids are waking up. But I'd like to share more, maybe later today. I hope to talk about the support we had on post, the deaf folks who worked there, and how we finally decided to get Matt a CI. So many things are coming to mind as I type this, I'm very glad I'm finally putting everything down. I wonder how much of this Matt remembers. He can express himself quite well. I'll ask him if there's anything he'd like to add later, too. I'll type, of course! :)