Back to the beginning with Joshua.

I need to get back to our "story". I think I left off with us in having moved to the Town Home. Matt was doing well at his schools, and then Josh was born. He was tested at birth for hearing loss, something we didn't have for Matt. We actually had a feeling he was deaf, so were expecting him to fail is hearing test. I requested to observe the testing, but the nurse who did the testing didn't get the word. The next morning she came in to give me the results and before she said anything I could read it on her face. He failed the test. For some reason she was immediately apologetic, told me of course he'd be retested, could probably hear. Maybe there was fluid in his ears, who knew? I tried to reassure HER that this was okay, we fully expected he was deaf, one of our other sons was already deaf with an implant. I thought it was so strange she was more shaken than I was at the moment. There were a ton deaf folks in the area, surely they had more babies fail the test? She said maybe one a month at their facility.

When she walked out I finally broke down and cried. Bawled. I was wiped out from the delivery, and finally heard what I was expecting to hear. My husband just sat there not knowing what to do, what to say. My best friend there walked in literally seconds later. Her son was in Matt's class, a HA user. I couldn't talk for a few minutes, just sat there and cried. When I could finally talk, I told my husband and friend that I wasn't crying so much for my son and his deafness, as I was crying for myself. Matt was doing so well with his deafness and implant, and here we were all over again. We had to start from square one with Josh. All of the doctor visits, all of the tests, all of the therapies. Sure those were selfish thoughts, but I'm trying to be as honest as I can about what we were going through. At least I can blame it on the hormones after delivery? :)

Well, there we were, a second test confirmed enough to us that two of our three sons were deaf. Of course the test after birth isn't a true diagnosis, but it was good enough for us. We had an official ABR done, and Josh had hearing aids by the time he was a month old. Good thing he had such a bucket head and big ears! They stayed on with no problems.

Oh! Boys are acting up right now, I'll try to catch up more later. As an update on our travels, we're doing okay. Matt had a birthday party last weekend with family we haven't seen in three years. They were all shocked that he could speak so well! It was really cool to hear comments from people who hadn't seen him in such a long time. I forget sometimes how far he has come. Josh did better too, initiating conversation and more approximations than he even used a week ago. Slowly but surely, we move on...

More on Joshua.

I just got Josh dressed and his CI on, and I wanted to share some more thoughts I've had this morning. The CI has been more of a blessing that few could fully understand. When we were at our last location/home, we were very fortunate to have great therapies for Josh. Four different therapies a week, two in home, and two at other locations. For both physical and CI habilitation. Sometimes that therapy was really hard to go through. For all of us. My hubby was in Iraq for a year, too, leaving me at home to deal with this and the three boys. We are stronger for it, but I'm glad at least that is over.

But I really believe that Josh's access to sound through his CI has been a major help in his development. He is much better able to express himself now, and we are finally seeing how much he can understand. His physical development is coming along now, too. Gross motor and fine motor skills. His biggest problem, through my own observations, has been physically telling his body to do something. Once he figures out how to do something, it seems to come much easier. Now we are understanding the seizures may have been getting in the way of his motor processing.

But now that he has his CI on this morning, his input is more clear, I am able to get his attention better, and he is calming down more. I need to get a picture uploaded sometime, though. He just looks like a little angel. I mean he really looks like a cherub! Such a cutie. He even approximated "I love you" after I said it to him. A stranger may not have understood it, but it meant the world to me.

Update on Joshua

Hi! Sorry for the spotty updates. We've been on the road for almost three weeks now, and won't get our new home for over a week from now.

Just before we moved, Josh was diagnosed with a "seizure disorder". He had an EEG and there were some observed spikes. The whole experience was awful, as the techs ignored his CI site (I even made them feel it in the beginning!) and roughed up the site quite a bit. Then wondered why he didn't get a reading on the electrode in that area. DUH! The electrodes were just put on with the goopy stuff, no damage to the kiddo. Other than he screamed, sweated like a pig, the electrodes kept falling off, and it took them 1.5 hours to get hooked up for the test. Half way through they had to wash his head and start over, putting him on a body board and fully velcro wrapping him in. But they did find some possible seizure activity.

I didn't see the doc except for a few seconds when they pulled him in at the end, still confused as to why they couldn't get a good reading on one electrode. THEY NEVER LISTENED TO ME! The doctor barely spoke with me for a few seconds and that was it, he was gone. Then when the results came in I was only able to speak with the referring doc, who didn't fully understand the results, either. He is very experienced with special needs kids, that's what he specializes in. So he talked to me for a while about what he knows about seizures, medications, etc.

After almost three weeks of constant time with Josh, I'm fully convinced he does have some type of seizure disorder. I've had time to reflect on the past, too, and I'm pretty sure he's had this since birth. We just didn't understand the signs, were more focused on his hearing loss and inner ear malformations, thinking those are what caused his imbalance. I've finally gathered up the courage to do some research online, and feel much better after reading stories, "blogs", online journals of other parents who have gone through similar things. We are working hard to get us enrolled in the new insurance region, and will put the pedal to the metal to get Josh reevaluated by a doctor I feel more comfortable with, and then probably start him on medication.

I type this journal online to not only to get my story down for us, but to share with others. I can't tell you how comforting it was to read other stories of families going through similar things. The main purpose of this blog is to document the boys' CI stories, but it now emphasizes even more how very different the journey is for each child.

My heart is breaking right now for Josh. He's having a "fit" of sorts right now that I can't seem to snap him out of. When he gets tired, and he's tired now because he had some shake of sorts that woke him up early, but when he gets tired it's like his brain can't focus too well. I don't know if it's getting worse or if we're just seeing i more because we've been with him so closely lately.

His CI experience has actually been the blessing in our days. H is really understanding more, and is expressing better what he wants and feels. Kind of cool! :)

Well, I'll try to type more later. I'm a bit tired now, and the day has only begun...

Still on the road. :)

We're still on the road, closer to our new home now. I'm working on someone else's' computer, so I will try to continue the "story". I'll have to figure out where I left off, though!

The boys have done very well. We've had no problems with the CIs. The rechargeable batteries have been great! We brought along the packs for their BWPs, to use regular batteries if needed, but haven't had to use them. Their BWP batteries have been lasting all day, then into the next day. We've been turning them off for naps and sleep. Matt doesn't nap much, and he wears his when he goes to sleep. We turn his off after he's out for the night. But both boys start up with the same batteries the next day, we only replace them with charged ones when we have to. We have found that to be very easy.

We've had MANY opportunities to share with people about the boys' cochlear implants. I should have kept a log listing all the conversations we've had with people, it would have been very LONG. Matt went with his Grandma today to pick up his little cousin at school. One of the other kids waiting to be picked up asked what the thing on his head is. Grandma had him explain it to the other children, and they all found it "cool". Matt has never been shy to explain that his ears are "broken" and the CI helps him to hear. He's a cool kid.

Chris is overcoming his fear of water at a furious pace. He's been a cutie through most of the trip. :)

Josh has had a lot of physical exercise, certainly more than he even had with therapy in the past. We were recently at Yellowstone for four days. In the beginning he couldn't run down the gravel hill too well in our campsite. By the end he was whipping down it in no time flat. Up and down, with me chasing him. He walked so much visiting his Grandma and seeing the sites there that he would collapse by the end of the day. He is also into "jumping" just for fun now, too. His balance had problems in the past, and he has lower muscle tone, so this progress has been fun to watch. His word approximations are getting a little better, too. It's amazing how I forget about the muscle tone in his mouth, and how he needs to keep working on it, too.

Well, I need to get going. I'll try to continue the story later.