Pic of Joshua and Mom

Okay, one more photo, a pic of me and my "little one". I know Josh is almost three, he's actually large for his age, but he'll always be "my baby". :)

Pic of Matt, Chris and Josh.

Now THIS is one cute picture! The boys really do spend a lot of time together. I think Josh's favorite friend is Chris, and Chris doesn't know what to do when Matt isn't around. We're really blessed that they get along so well.

Both of the CI boys, Matt and Josh, have their BWPs on in the pic. I think you can see the cord running from their headpieces to their processors. We absolutely LOVE the BTEs, and they wear both around the house. But when Matt is at school he uses the BWP with the Phonak Microlink. We still haven't had the BTEs switched and remapped so that he could use the new iConnect, but that will happen. HE CAN'T WAIT. He could wear his CII BTE now, but chooses his BWP for school, the BTE for home.

I keep the BWP on Josh more now when we're running around. We need to get a new ear mold made for his BTE. With a good, comfortable ear mold, we don't seem to have a problem with Josh's processor physically staying on. To be honest, when we're out and about I'm more worried about Josh taking his BTE off and playing with it, though. That's just Josh's personality. Since he's become more mobile he's been quite a handful to chase! When he wears his BWP, he uses the Pediatric Processor Harness (http://www.bionicear.com/products/prod_dev.asp). He is so used to putting it on and taking it off that it's just become another piece of clothing for him. It is wonderful, doesn't get in the way of his car seat use, sticks out very little under the sides of his shirt. With Josh's long hair, most people don't even notice he's wearing a CI! He's such a cutie pie!

Okay, I need to keep moving. The boys are playing in the basement now, and things are a little too quiet...

Pic of Matthew and Daddy! :)

Hello! Since our move we haven't taken too many pictures (and can't find the ones we took on vacation, oops!). But here is a recent shot of Matt with his Dad. Matt especially loves hanging out with his dad. Together they play a lot of chess, Halo on the XBox, take hikes and do really cool stuff with Matt's Wolf Scout group. I think the first entry in my blog is actually a photo of the three boys together. That was taken over a year ago! Boy, so much has changed in a year! :)

Matt's improved reading skills.

At Matt's four year post CI checkup the audie suggested we have Matt read aloud to us and highlight the letters he's having problems with. This helps him to naturally speak slower when reading, and helps him concentrate on the letters he is not saying well. Mostly "s", but others, too. I can highlight most of the letters he needs in advance, and then I highlight more as he reads and we find areas he needs help with. This can lead him to reading in a choppy manner, so after he gets a sentence well, I may ask him to read it again a few times as I drag the pen along the line. His articulation improved, this helps his speed and flow. It's working, when we consistently work with him.

Josh slept horribly last night. I might be imagining things, but there is a strong weather front headed our way, big pressure changes. So this morning I was tired and forgot his vitamins and supplements. The ProEFA. Again, I'm sure he was just tired and I'm imagining things (read: I'M EXHAUSTED), but I could tell he was "off". He did communicate very well at school, in sign but not so much in speech. So much that the teacher and some of the staff were excited to tell me what he did. Pretty cool! I gave him his vitamins at home, and again, maybe I was imagining it, but it was like he was "waking up". I've noticed he "babbles" more at night, anyway, but he just started babbling away. Like a faucet with his own words flowing out. It's very strange, but in just two weeks we've seen so many little changes in him, unbelievable. Some of the changes are small, some bigger. But I'm Mommy, constantly have him under my personal microscope, and I've watched his communication finally blossom. :)

Well, if you haven't caught on, I'm very tired. With much to do, of course. Hubby has been a tremendous help lately, I'm so happy he has a job he can finally relax and enjoy. Makes things easier at home for all of us. He took the boys for a two mile "road march" tonight, pulled Josh in the wagon part way. Yeah! I'm betting they'll all sleep well tonight! Here's to hoping, anyway...

CNI Camps

Hello, again! I KNOW I shouldn't be sitting here at the computer, AGAIN, this morning, but there's something else to share. Colorado Neurological Institute Center for Hearing has a great site for CI info: http://www.thecni.org/hearing/index.htm . We're trying to go to the John Tracy summer program, too, so at least we have some fun options this summer!

Along those lines, I have seen folks compile lists of summer camps/activities that would be great for CI kiddos. I'd love to see some things for this next year, will try to do some "research", see what's out there, and put together a little packet. I know there are some great folks reading my blog, if you have any ideas, send them my way. Thanks! :)

John Tracy Clinic Online

I think I've posted about this in the past, but I'm excited to share info about the John Tracy Clinic (http://www.jtc.org/) and what it has to offer. Here is some info from their site:

"The John Tracy Clinic MissionJohn Tracy Clinic is a private, non-profit education center founded by Louise Treadwell Tracy in 1942. Its mission is to offer hope, guidance and encouragement to families of infants and preschool children with hearing losses by providing free, parent-centered services worldwide. The Clinic has over 60 years of expertise in the spoken language option.

Worldwide Family ServicesParent Distance Education / Correspondence Courses and Summer Sessions for families of young deaf children ages birth to 5 years. A special course is available for parents of preschool deaf-blind children.

Local Family ServicesYear-round, parent-centered education programs for newborns, toddlers and preschool children who are deaf and hard of hearing. Free comprehensive pediatric audiological testing, counseling and evaluation emphasizing early diagnosis and intervention.

Professional EducationDeaf Education Master's and Credential Program, offered in partnership with the University of San Diego. Available in two options: 1) one year at JTC for full-time graduate students or 2) two-years online for working teachers. Both options include two summer residencies at the John Tracy Clinic campus in Los Angeles."

Although we use sign at times with Josh, I am working very hard to help him progress in his listening and speaking abilities. I signed up for this course a week or so ago, FINALLY downloaded the first section just now. Things haven't been too organized around here, but we're getting things moving now! We're also very interested in their summer camp, may attend this summer. It's been a little disheartening to see Josh struggle more with speech than Matt did, but he's coming along. :) It's hard to describe until you've seen it, but just this last week with him on ProEFA has given us more hope for his progress than anything else so far.

Well, I would encourage anyone with deaf/hoh children to look into John Tracy's correspondence courses. They are free, been around for a long time, and have helped many folks already. Our most recent course is printing right now (just bought more printer paper, yeah!), and I already have a binder set up to keep things straight. Now to settle this in our daily routines...

ProEFA

I've been giving the boys Nordic Naturals DHA for kids, but finally ordered the ProEFA for Josh. Immediate difference! Even his teachers noticed at school. Not just with his approximations, but all attempts at language have greatly improved. And his physical skills, I think his balance is even better!

I can't stay on long right now, but haven't posted in a bit and wanted to get this update out. No kidding, we really have noticed that much of a difference in Josh since starting him on the ProEFA. Hubby and I ask each other, "Did you see/hear him do that? Is that just weird? It's like a switch was just flipped and he's just doing things!" We were like that all last week. We noticed a difference just with the DHA, and when he's off it he almost "reverts". Now with the ProEFA we're just in a bit of shock. In a good way.

I don't sell the stuff, but you can read about it at: http://www.shop-in-service.com/diet.htm . I think this site is run by the Cherub Foundation, really cool stuff. We feel blessed that this has helped our son.

Comfortable with sound and without.

There was a very interesting discussion on one of Yahoo groups that I'm in. I've copied my own response below:

Wow! This is an interesting topic. I don't think it's a judgemental one at all, but rather thought provoking. I also agree 100% that my son needs to be comfortable w/o sound at times, too, and he is. He copes very well when he is forced to be w/o his processor (I'm talking about the oldest boy, Matt).

Now, I absolutely did not set out to teach him this. He has learned it on his own. When his implant was activated and the sound scared him atfirst, I told everyone in no uncertain terms that the CI would stay on. I would allow the volume to be turned lower, only to be gradually brrought back up. But the CI would stay on. Both of my boys wear their CIs when they fall asleep at night, I go in and take them off and recharge the batteries while they are sleeping. We've never had to take them off in the rain, either, never had any problems with that. And call me a mean mommy, but when all of us were stuck travelling across country in a truck, the littlest one screaming at times, Matt wanted to take off his CI so he didn't have to hear the screams. I made him put the CI right back on, and told him if he wanted to hear, he had to hear the screams, too. Also adding that I sure as heck wish I had the option to take my CI off, too, but of course I don't have one. :)

But his comfort and self confidence became evident when his battery "died" when we were at dinner at DH's boss' house. I think he grabbed the wrong battery, one that wasn't fully charged. Since his batteries last all day and into the night, we've forgotten to carry spares, not needing them in the past. Well, Matt was without sound, but continued to play with the other kids just the same. We weren't close enough to run home and get him another battery. He could have stolen Josh's, leaving him without sound, but said he was fine w/o it. DH's boss' wife was just amazed that Matt was doing so well even w/o a working battery. That he really was comfortable playing with the other kids, not self conscious at all. It didn't even phase me until that point that he would do anything different.

Now Matt is invited to a swimming party where he won't be wearing his processor. It's a drop off party, but I've asked the mom if I could stay to help with Matt if he needs it. Even if Matt's processor were "splashproof", I don't think I'd let him wear it to the party. I know my boy, and the other kiddos that will be there. I would be worried about even finding the processor in the pool after they went through a round of dunking each other. That's just their reality. We moms don't like it, try to stop it, but can't control those 7-8 year olds every second. But the kids know Matt can't hear without it, Matt is fine with that, and he's told me he's not worried in the least, wants to go to the party with his friends. He is comfortable with himself and coping when he can't have his CI on all the time.

The CI is great, but it's not a cure for his deafness. I'm glad he can cope without it those rare times when he is w/o it. There's no way I could cope without my glasses, I'm practically blind without them. Maybe I could get through a day, without driving. But it would be difficult. Anyway, that's what I get from the discussion about "comfortable with sound and without". Very interesting topic! :)

--Karin, mom to the Bionic Boys
www.bionicboys.blogspot.com
BEA Volunteer

> I agree one hundred percent. There will always be
> times when our children are without sound, and they
> need to be comfortable in silence as well as in sound.
> There are times when I wish I could turn off MY CI,
> but I don't have one! :)

Very small hooray!

I can't remember what the word was, but Josh let me manipulate his mouth a little while he was vocalizing, to help him properly make his "oh" sound! He let me do this a few times, and I think I saw some wheels moving in his head. After I was done with him, he tried it a little on his own, but didn't quite get there. He was a little closer, but this will take some time. How exciting! I'm really glad he lets me help him, oral motor stuff. It's like walking, I think he can do this, but it's going to take time to convince his noggin that he can do it. I knew he could walk when he was ready, but it took a week with a walker for his brain to figure out he could do it on his own. And he was so cute with that little walker!

He used a lot of language today, on his own. To tell me what he saw, and what he heard, too! When a motorcycle went by us in the park he looked at me confused and signed "LOUD". I signed and said, "Yes, the motorcycle was loud!" He signed and tried to vocalize "loud" again, actually tried to say the word. Good progress.

He's using his language to label things well, but he's also starting to tell me what other people are doing, how they feel. He consistently uses happy and sad when another boy is smiling or crying. Cool that he identifies these.

I'm signing with him, but also working so hard to help him vocalize, too. I find that when he is comfortable with the language, the speech follows much more easily. And I'm sure was more patient with me working a little with his oral motor skills because we were outside in the park relaxing vs. doing "therapy" at home. When he's relaxed and having fun, communication comes much easier.

OH! He was waving and saying "Bye!" to everyone, without any prompting! When a boy would get off the climbing toy, he would wave and say, "Bye bye!", and when the boy got back on he would wave and say, "Hi!", more like, "Hah!" But this took no prompting from me whatsoever, it came straight from him. And when we left the park he waved and said bye to the park sign, too.

As a mom who is totally involved with all of her children, I get very frustrated at times. I feel chained to the home, to the kids, like I have no life of my own whatsoever. I am a full time unlicensed therapist for my boys, and this has been going on for years. I hit a rough spot yesterday where I felt so burned out I just wanted to cry for hours. My husband asked me if I'd want to do anything else, and to be honest, I don't know what else to do. This has been my life for a while now, it's just become a part of me.

Fortunately, I have always loved books and find good escape in them, even if for a few pages at a time. That and Law and Order. I used to like gardening more, but that's hard to do when my three boys are running around the neighborhood like crazy men. I look forward to Josh being in school full time.

But when I am burned out, Josh always seems to pull something new out of his hat. Like letting me help him with his "oh" sound, and saying "Bye bye" to the kids and park sign all on his own. He is one cute kiddo!