Happy Birthday to This Blog! ;)

I just figured out that today is my FIRST anniversary blogging! Can you believe it?

Click here for my first post ever.

My (other blog-name removed) isn't quite as old, but I've posted and had more "hits" there than on this one. But, sigh... So much has changed in a year! How neat to have it documented in the blog. ;)

AB Recall

Yes, there WAS a recall a while ago. Supplier B's implants had a slightly higher rate of failure than Supplier A's internal parts. As soon as this was discovered, Advanced Bionics pulled all unimplanted internal parts and replaced them. I am impressed by their integrity and speed of action.

Did I freak out a little, wondering if my Little Guy was implanted by Supplier B's product. Yes, of course I did. So I called Sandy Mintz at AB (she has an implant herself!) and asked her about the recall. She said if there were any problems with my son's implant, we would have most likely known about it by now. We talked a bit more, and I immediately felt reassured and not worried about my Little Guy's implant. And I was even more impressed with the proactive actions on Advanced Bionics side of the issue.

I've also read about Linda's thoughts on this issue, and it helped reading about it from an adult user's point of view. As a parent, I enjoy hearing experiences and thoughts from adults who can better describe their feelings than my son. He has the VOCABULARY and SPEECH to tell me what he's thinking, but is an almost eight year old boy who likes to keep his thoughts to himself, too.

Well, bottom line is I'm not worried. We have since moved away from Little Guy's implant center, haven't heard from them, so I'm wondering if I'll get a letter from AB that he has Supplier B's internal part. How will I react if I get that letter? Right now I can tell you with certainty that it won't/doesn't bother me one iota. My son is doing fine, and I'm more concerned about how he will do with the 120-channel programming when it is released. Coming to an implant center near you, sometime in the future... ;)

Way to go, MATT!!!

Matt tested so well on five different standardized tests, all normed for HEARING children, that it's been recommended to fully mainstream him. His speech teacher said if Matt wasn't deaf she couldn't write an IEP for him based on his speech because he was doing so well.

I've started the ball rolling with the district, have a summer full of papers and tests, but I'm very excited for our son. He wanted to be around other deaf/hoh kids last year, but we'll have to find another way to do this. I think his needs to hang with friends in the neighborhood at home AND at school is growing much stronger in him. The poor kid, because of our military family lifestyle, this will be his seventh school, and he's just turning eight next month. You name it, we've seen it, all across the country. We've been amazingly blessed with wonderful teachers and therapists along the way!

Hmmm... I've been thinking about bilaterals for him, too. Last week I met some AMAZING adults who have bilateral CIs, and was just floored by hearing them talk about their experiences. I've also been keeping up with Little Jack's progress, too. I would like MATT to talk with the adults I've met, too, see what "bi-CIs" looks like. I look forward to reading research on improvements in speech recognition and other areas, how bilateral CIs help vs. having one implant. But, come on, I'm thrilled my boys can even do so well with one! Yeah, technology!

I'm a little more on the fence re: bilaterals for the Little Guy, as I wonder if he'll need MRIs in the future. SURE the magnets can be removed for an MRI, and I heard the procedure isn't too difficult, either. But I don't know if I'd want to mess with an MRI and TWO CI magnets. These are my very personal feelings, I wish things were a little different but that's life. I'll talk with his developmental ped doc and CI team more about this, see what they think.

In the meantime, we are ANXIOUSLY awaiting the arrival of the 120-channel programing. I have no clue when it will be released, but I'm patiently waiting. HOW EXCITING! Deb has blogged a little about this, and so has Dan. I can't wait to read more someday!

Oh, wait! The Little Guy may be going to his school five full days a week, maybe with a mainstream pre-K for 2 or 3 days/week if that all works out. I'm looking at other options for him, just to keep my mind open to everything around us.

As a mom, I can't wait for school to start again! Did I type that? Isn't that funny how perspectives change? When I was little, I lived for summers. NOW I'm TRYING to make summer fun for my little ones. I really, really, REALLY appreciate the amazing jobs my boys' teachers have done. I don't think I could thank them enough for their patience and expertise. Sigh... ;)

The Boys in Action

(video deleted)

Here are the boys in action! Sorry for the poor editing, I had to cut out some personal stuff. I was trying to give you a good idea of Matt's communication skills, but Chris continually steals the show. I'll try to do a video "interview" of Matt later and upload another video. Enjoy! ;)

Summer Vacation

I haven't been posting much because things have been going pretty well lately, status quo. No big surprises. Josh is communicating much better at home and at school. He seems to really know his alphabet, will sit and "read" a book TO me. In his own way. Yesterday he was counting EVERYTHING. He uses sign language, but is vocalizing much more, and consistently when I prompt him. Very cool.

Reading with Matt has been a VERY good experience. He is quite a trooper when SGT Mommy sits with him to read his books. His speech teacher said he tested very well, vocabulary is doing well, too. Just needs to work on his enunciation, dictation, you know the drill. I have a hunch he could fully mainstream IF he didn't feel so strongly about being around some deaf/hoh peers in school. I have to pay attention to the whole picture with him, not just his academic abilities.

This summer we have some options. But something that Matt has always wanted to do was start a local science club. So I'm thinking we're going to work together and plan a Summer Science "program" here at the house, maybe art and craft days, too. Then put together a calendar and pass it around to his friends and other neighbor kids. Many years ago I used to run a park program, all by myself. 20-60 kids at the park at any given time. That was WAAAAAAAY back when I had more energy, though. I think if I have a plan, pick a couple of hours in the afternoon to do the activities, we could have a really fun summer.

There are programs in the area for things like this, but I prefer to have something here vs. running around like a mad woman dragging three kids around. AND this may help us to get to know some other kids better, on our own turf. Matt LOVES science, especially interested in robotics. So I have a little research and planning to do now. Again, with good PLANNING this could be a lot of fun. Maybe I'll get to know some other parents, too!
Well, that's the update. Matt and Josh both have some cute schoolwork I should probably scan in for the blog. I love the idea that they'll be able to look back at their "story" someday, and share it with others, too. ;)

OOOOH! Speaking of stories, Little Jack, linked on my sidebar, just had his second CI implanted. I'm so excited for them! I encourage you to check out their blog and read about that, too. Very exciting!!!!!

What are your plans for the summer?

Time with Joshua.

After church last week Chris (middle kid, hearing) told me that the children had prayed to God. And that God had told Chris personally that he had to spend less time with Matt (oldest son, CI), and more time hanging out with Josh (youngest son, CI).

Matt told Chris, "God can't talk to you, you can't hear him. I don't care what kind of ears you have."

Of course, I told the boys that God CAN talk to us, in our hearts. That we didn't need ears to hear his voice in our lives. I was actually at a loss for words at this point. A little shocked at my 5 year old's revelation.

But Chris must have had a true change of heart, because I've heard him several times the past week say something like, "Matt, I can't play with you right now, I need to spend some time with Josh." Each time I hear that I am floored. Absolutely FLOORED! Boy, that word looks funny when you type it in caps...

Anyhoo... Josh is one of those kids that has an ear infection, but you don't know about it until it does something like rupture his ear drum. I'm not kidding, it happened a few days ago. But my, oh my, he is doing MUCH better! The pressure must have been bugging him something awful, because he's been Mr. Chipper ever since it popped.

I thought he just had a cold, like everyone else in this house. In the future I will just have to play the overly paranoid mommy role and bring him in every time I suspect something. Like I'm not overly worrisome NOW. Bottom line, he's doing better. Sigh...

I need to write down some of the notes from the boys' schools. They are both doing VERY well! Josh's vocalization and use of language keep improving, little by little. Matt keeps coming home with papers for me to sign, only one or two wrong on his math and spelling tests. He's done some writing on his own recently, at home. I need to ask his permission to post something here.

Thanks for all of the nice comments lately! Please feel free to contact me if you have any questions. ;)

Matt at Cub Scouts

I chose these pics because I think it's easy to figure out which kid is Matt. And to see how he's just hanging out and having fun with his friends. It's really cute how Matt's headpiece matches the flag patch on his shirt, too. He really loves those headpiece stickers!

I'm a Mommy, I worry about my boys. I work hard to help them with their communication, but I also spend time worrying that they'll "fit in" with friends, make buddies and have fun. Not only do the boys have to overcome some significant communication hurdles, but with us moving all of the time they have to constantly make new friends, too. I'm willing to admit that I probably worry too much, but that's just me.

So to help our boys out, we try to give them many chances to get out, meet other kids, and have fun. Cub Scouts has been a WONDERFUL experience for the boys. Only Matt is old enough for Cub Scouts, but Chris has tagged along with him the whole way, too. Matt has made a few friends in this group, the same boys from his mainstream 2nd grade class. He'll also be playing baseball with them next month. The coach is very willing to use the FM system, a big bonus for us.

For a some time this past year I was worried Matt was having some issues talking with these kids, communicating and behaving properly when in a large group. Then last week I overheard his mainstream teacher talking to the whole class (while I took the picture two posts below) about the exact same issues and specific incidents involving totally different kids in his class (playground behavior of other boys).

Then it dawned on me, I had one of those ah-ha moments. Matt is very much like every other boy in his class. Yes, I worry too much sometimes, but I also find it funny that I'm worrying about some of the same things most other parents worry about, too. And that deaf with CI, Matt is also a very normal, cool little boy. ;)