I love our insurance!

It's time to order new batteries, wires and headpieces for the boys. I was prepping to do a ton of paperwork, re-enroll them in the Army's Exceptional Family Member Program (have to do this every three years, as if they weren't still deaf with cochlear implants...), enroll them in the new program for durable medical equipment supplies, ECHO, and then prepare all of the forms necessary to order equipment under that program.

Since we aren't near a typical military facility now, I didn't know to whom I would submit all of these papers to get the ball rolling. Army One Source, a number we can call for answers to everything, and I mean everything, directed me to Sue Ellen Braden, the EFMP coordinator at Dewitt Army Hospital. I think that hospital is on the post where my hubby's HQ is located. She faxed the old EFMP documents to her higher ups, I think, and the boys are re-enrolled. I think they figured out that once you're deaf with an implant, that doesn't really ever go away. Then she put me in contact with the insurance coordinator who said these items are now covered under regular services, no extra paperwork needed. YEAH! But that she'd enroll them in ECHO, anyway, as we may need their services later. I will keep putting together paperwork on that in the meantime.

I have an audiology appointment for Josh today, and have all of the papers needed to hand over to the CI dept., to order new equipment. I am so THRILLED! The process under the new insurance is MUCH easier than the old system. For once I have seen progress through the changes. I don't know how long it will take to put the paperwork through, get the equipment, but I am just tickled pink today that this load of TODOs is off my back. I was so grateful that I wrote a note of appreciate to the Patient Rep at Dewitt Army Hospital in regards to Sue Ellen's superior service. YEAH!!!!!

Fantastic Flubber!

Nope, not directly a CI related post. But don't they look like they're having FUN? We had a quiet, relaxing day at home, ended it with some Flubber making fun. Cute kids!

Dancing with Joshua.

Preface: I'm supposed to be cleaning the house.

Reality Check: You simply have not danced until your cochlear-implanted young deaf son turns the dial on the radio until he finds some music (little dude doesn't dig talk radio), drags you into the living room and tries to get you to dance. Dance, you must! You can clean more later...

Josh has taken a strong liking to music lately. He'll point to his ear when he hears it on the radio, TV, in the store, you name it. He's wide awake, bright-eyed and bushy tailed right now, wanting to boogy. And when that cute little hippy-haired toe-head pulls me into the living room to dance to "Kung Fu Fighting", I will dance every time. :)

Apple Bubble!

Clear as a bell, Josh is saying the words, "apple" and "bubble" now! Yeah for Joshua! I just offered him juice, he saw the apple on the juice box and said, "apple". Floored me. Might not mean much to some folks, but hearing him say that just tickled me pink! His teacher yesterday said he was doing better in speech, said, "bubble" perfectly, too. So I tried him with this, and yup, he did it! All of the work we do to help him is really paying off. It takes more time with some than others, but I'm so excited to see the progress. As his muscle tone improves, I'm much more certain now he'll be able to make more sounds clearly. Very exciting for all of us.

Then there's Matthew. We worked very hard with him, he attended great schools and had amazing therapists. And now he talks and talks and talks and talks, won't stop. I guess THAT'S good, too. :)

Josh's tinnitus and residual hearing. Vestibular problems.

Wow. Interesting title, eh? I have a good stat counter, so I can kind of see who's "visiting" this blog. PLEASE leave comments, suggestions, ideas you may have to share. That said, back to Josh.

Big, no, HUGE ah-ha moments for me tonight. One now, just past 2 in the a.m., that is such a big click in my noggin, I have to get it out on paper so I don't forget about it.

Yesterday Josh's teacher and other staff said he did GREAT in school. But he hit a brick wall, was very tired and crashed in the truck on the way home. But I didn't take him home, went to a friend's house w/even more kids around. Woke him up from his deep slumber to a small group of chaotic kids. He was burned out. Didn't melt down, but wasn't interested in hanging out and kind of stuck to himself. Normally that wouldn't bother me, I know he's fried after a full day at prefers to be on his own. So I really kept my eye on him when we finally did get home.

He started to communicate much better after he had a chance to unwind at home. It was nice to see him perk up, even though he was exhausted after a long day. Then after I took off his CI, before bath time, he pointed to his ear to signal he heard something. Oh, interesting... Then he started to make his high pitched sound, I'd call it an "almost yodel." Only way I can describe it. So I made the sound, loud like him, and he stopped and said he HEARD ME. He was not looking at me, he did not have his CI on. I tried this a bunch of times with him, high pitch and low, and he responded. Not to different words that I tried, but to the sounds themselves. Could it be from "feeling" the sound? He responded when he was across the room from me, too. I had to cup my hands around my mouth, almost like I was trying to make the sound louder (as when yelling to someone far away), but he turned around and signed he heard me. Wow. First lightbulb moment, he does have a bit of residual hearing. Maybe he makes the loud sounds sometimes because he can actually hear them a little?

Then, lying awake at 2 in the morning, not unusual for me, I thought about this. It finally dawned on me that I was so caught up in the thought that he may have some residual hearing that I completely forgot he had pointed to his ear FIRST, then started making his sound, then responded to my sounds.

Flashback: Matthew is not quite three years old, going through a horrible time of vestibular problems, residual hearing dropping with each "off balance spell", hearing aids not helping him anymore, didn't yet have a CI. He would tell me, w/o his hearing aids on, that he could hear things he previously heard w/ his HAs. Tinnitus. Clearly tinnitus in my book. He would describe it as helicopters (we lived on a Navy base w/active air traffic), a train, dogs barking, telephone ringing, baby crying, all things he had related to w/ his hearing aids. Post implantation, when he was hearing sounds with his CI, he was really freaked out at first. Almost to the point of scared that the sound was like before, when he had his horrible bouts of tinnitus. As soon as he could put something REAL with a sound, like a truck down the street, geese honking across the street, an actual helicopter overhead, he was THRILLED!!!!! Matt was 39 months when implanted, almost the same exact age Josh is now.

Back to Josh. He has been very excited lately to point out when the microwave beeps, or the dryer, or anything else making a beeping sound. He'll point to his ear, and go look for the beeps. When he hears the beeps, he knows his warm, chocolate milk is done, or it's time to take the laundry out. The kid is obsessed with the laundry. That's a good thing, but I doubt it will last, darn. Anyway, when he pointed to his ear last night, AFTER his CI was off, I'm just wondering if he was telling me he was hearing something like tinnitus. Then responding with his own sounds. I'm not sure what this all means, but it really has me thinking, my mommy wheels spinning.

What does this have to do with vestibular problems? The following are just observations, musings of mine. No diagnosis, nothing concrete here. He is all plugged up. I have noticed in the past that when he has a cold, his balance is more affected. Cold this lead to more problems with tinnitus? I am having bad problems with tinnitus right now. Not real bad, but noticeable. I'm also having a horrid time with allergies. AND I noticed Josh's eyes were a little red the last couple of days, too. In the way past, Matt's vestibular problems were their worst on days that were heavy with yellow pine dust. He literally lived on Benadryl for three months, which seemed to help tremendously. His doctor then told me that Benadryl is also a vestibular inhibitor. If Matt has one of his now rare off balance spells, Benadryl will literally stop it w/in 20 minutes. But Benadryl never affected Matt's activity level, it knocks Josh out. Should I try some Benadryl with Josh? Maybe a smaller than normal dose? Or Sudafed to see if that helps to unstop his sinuses, maybe relieve some pressure and thus help him out?

See, this is how my brain works, why I can't sleep some nights. Maybe I worry too much about my boys, but that's just how I am. When I figure out something that can help them, I get really excited about it. I have an appointment w/Josh's audie next week, I'll bring up the possible tinnitus and residual hearing with her. And I might need to think about getting Josh in to see someone about vestibular issues.

Back to those. Josh is progressing leaps and bounds with his balance and motor skills. He has reached a strong independent streak, won't let me help him into and out of the truck now. Wants to "walk the plank" at the park, you name it. And no coincidence, as these skills progress, so is his communication. Maybe not at the end of a long, brain frying day (my brain was done working yesterday, too), but he is doing much better at home and school. Willing to try new things with vocalizing that I wouldn't have even considered trying with him before. It's been very interesting to me to see how the physical and communication really go hand in hand. That's what leads me to believe that many of Josh's motor processing, expressive language and other delay issues may be related in some way to his vestibular problems.

He is progressing, at his own slower pace, but forward movement it is. On a much more positive note, now that he is expressing himself better, we're finding out how much he really has digested. His teacher will orally say, "It's story time. Go get the pillows (to sit on)," and he'll run to get the pillows. She said yesterday that he recognized may of his alphabet letters with a new puzzle she had, and he's just past his third birthday. That's pretty good in my book. When I introduce a new word to him orally, he's picking it up much more quickly now. Yesterday he was playing with the mop. I told him what it was, gave him the word. He instantly got it. Most hearing kids may learn huge portions of their language through osmosis, through hearing the spoken words all day. We may take for granted what they do and don't understand. Well, Josh knows all about the mop now. Maybe that will be his next obsession? Fine with me. Some kids might like cars, Josh likes to clean. Again, I wonder how long that will last...

Ooh! That brings me to the same point I keep bringing up. Read to the kids. Language, language, language, get it to them. I'm VERY tired most days, that's just life. But I've been making a much stronger effort to read to Josh and Chris most days when they're home. Chris could sit forever listening to books. Josh actually sits quite a long time, now, too.

Okay, that's enough for now. My head actually hurts, like a little, throbbing migraine. I sure hope I can catch some more sleep. Please, Mr. Sandman?????? I have a long couple of days ahead of me with the boys. PLEASE let me get some more sleep? I feel better getting all of this down in black and white. Maybe I won't stay awake thinking about it now, kind of exhausted the topic. Exhausted, yes, I am. Need sleep...

Time to get up!

Well, almost. Joshua had a rough night of sleep, so I'm letting him sleep in until the last minute before I have to rip him out of bed and we all head out.


BUT, he has been vocalizing like crazy! Trying, anyway, and getting more adventurous, too. Last night we started a new "song". I sing (you can't hear the tune, just pick one out), "Mama, mama, mama, Bye bye," then he copies it. When he was comfy with that I changed it to Mommy instead of Mama, then changed it to Chris, fish, moon, we tried a bunch of things. Some sounds are still hard for him, but we spent a bit of time working with "n" yesterday, and he's really trying now!

Another cool note. He's really into his numbers. He's trying to count all the time. AND recognizing letters, too. We have a signing alphabet poster hanging up downstairs. He tries the letters in sign (I'm THRILLED he's getting his alphabet now, any way he can), but he'll also sit with me and try to vocalize them, too. This is EXACTLY how I started Matt with his vocalizations. First he felt very comfortable with the concept of the alphabet, then I tried to get him to voice the letter names. I'm a huge believer in reading, and I think this is key to why Matt is doing so well with his reading now. His spelling needs some work, but he's in second grade, he has time. I'm just tickled pink that Josh is showing a good interest in numbers and letters now, too. And as his comfort grows, so does his communication.

Today I'm going to pick up the Leap Frog letter thingy that goes on the fridge, makes the letter sounds. I visited a friend who had these. Josh loved the single letter one, Chris loved the one with three letter, capital and small. I think Leap Frog is the easiest to understand "mechanical" speaking toy, too.

Okay, time to wake up the little bear. Will have chocolate milk and CI in hand. If he's cranky, I'll shove the chocolate milk his way and move on with changing him. Here we go!

Baby Moon

Joshua is finally USING his language! Yeah!

We were watching Teletubbies yesterday. I really hate the show, but Josh likes it. He actually "talks" with me about what's going on in the show, so it's a good time to work on his communication skills. I remember having to translate kid shows for Matthew, and for that reason I have a burning hatred for Barney. Too many songs, words, you name it! But I digress...

Back to Josh and the Teletubbies. At the beginning of the show a sun comes up with a little baby's face in it, laughing. It shows up throughout the show, then the sun sets at the end of the show. Josh loves this, we call it the "Baby Sun". So yesterday, at the end of the show I said, "Josh, say Bye Bye to the Baby Sun." Josh says and signs, "Bye, bye, Baby Moon." Mom: "Bye, bye, Baby Sun." Josh laughs and says, "Baby Moon!" Sounded more like "Bay-beh Moo", but you get the idea. He was messing around with me! I thought he was messing up, having trouble vocalizing "Sun", he can't do his "s" sound yet so avoids it. But he was clearly vocalizing (well, as best he can) and signing "moon". He was laughing his tail off when I finally caught on and joked with him about it. That little stinker! Cutie pie, but a stinker, too.

Josh is also counting and dancing with the Teletubby program. I used to hate this show with a passion, but am loving it through Josh's eyes and "ears". He absolutely LOVES to dance when he hears music on the show. His moves aren't much better than the Teletubbies', but he's so adorable when he gets up there and shakes his booty! :)

Ooh! Ooh! Josh's finally figuring out he can make different sounds with his tongue and started trying to say words beginning with "n" the right way! Yeah!!!!! He might be slower in progress, but it is SO COOL to watch as he learns new things! Really neat boost to MY morale, a payoff that encourages me to keep plugging away with him.

Matt, on the other hand, has no problems talking. Won't stop. Almost drove me insane yesterday. Thank GOD, literally, for the snow. I was THRILLED when the two older boys finally went to play in the back yard. Hours of peace and quiet with Josh, and to get things done around the house. Love the boys, but sometimes MY ears and the whole house need a break from their energy. (Big Mommy Grin here.)

Paperwork Mountain.

I had plans for today. To be all organized and a cool mom. Then I remembered the boys' batteries are starting to last a shorter time, need to order new ones.

Oh, my gosh, the paperwork involved with that is overwhelming. First I have to re-enroll them in a certain program, involving paperwork through their docs and teachers. Fax that to someone, wait for it to be approved, fax the approval letter to another program, get more paperwork filled out by different docs and maybe educators again for that program, then order equipment.

I don't think we'll loose all of our battery power before then, but I'm sure I could borrow some if needed, until ours get ordered. I should have started this six months ago, when we first moved in here. But, Tired Mommy Me just gave up on paperwork for a while. For six months now. Well, time to get cracking! GRRRR...

I've been at this for hours this morning now, have left many messages on many phones. Will call again and leave more pleasant message, again, I'm sure.

For this reason, I recommend all parents in this kind of situation keep really, REALLY good records for all procedures, equipment, educational info, etc. I mean, you need to keep very meticulous records, multiple copies of certain docs on hand, and have good access to a fax machine.

This can be such a hassle and can take a lot of time, but the payoff is great. My boys can hear!!!!!

"Holy Snow, Batman!"

That was Chris' response to seeing our blizzard results this morning. I put him back to bed.

We wrapped up all of the boys last night to do some sledding as a family. We're right next to a little park that has a small hill which is perfect for the boys.

Interesting note, though, when the boys' heads were covered with pull-on hats and hoods from their coats, not even the "hearing" son could actually hear us that well. More difficult for our CI boys. We will most definitely use their FM systems when we take them out later today. Oops! One is at school, one at home. Well, at least we'll have one to use.

Now which kid to use it with? The tiny receiver can be damaged, if say the boy wearing it is in a snow fight, rolling down the hill after being hit by another sledder (boo, hiss, neighbor boy!!!!!), or just when messing around. That would be Matt last night. He was wearing his uber-durable BWP under his jacket, in its pouch around his waist. He had absolutely no problems with that. But the FM receiver is a small attachment to the processor, more easily knocked or damaged. I'll have to talk to Matt about this. I need to start using the FM more regularly with Josh, too, though, so today might be a good opportunity to give it a try.

Back to the original thought. Could the hearing son hear me last night? Or was he blowing me off? Hmmmm.... He IS five now. It's a toss up. I couldn't tell you one way or the other. :)

Joshua and his 123's

Okay, it's sometimes hard to know what Josh really DOES know, since his communication skills are delayed. But last night after we left our favorite pizza joint, walked to our car, we passed a bunch of numbered spaces. Josh ran off, in the parking lot, to space #3, signed "3" and tried to vocalize it! Then he continued up the line with more numbers. Yeah! He just turned three a couple of months ago, too. :)

His teacher says he's recognizing his letters, too. I think that's something he does better for her at school than he does at home. But it's so cool to see he's getting these things!

I talked to his speech teacher about oral motor exercises, again. He has lower muscle tone, and it's interesting to see his muscles finally get stronger. He couldn't take off his own shoes until his tummy muscles got stronger and he could bend over to reach the shoes. Just like he can't make his "O" sound properly until his mouth muscles strengthen more. His tongue is going side to side better, and down, but up is still hard. She gave me some ideas to work with him on this. I've heard him RARELY play the "lalalala" game with me. And last week when his teacher told him his groundhog painting was wet, she swears she hear him say, "Dry", with the "d", as did the sign for dry. He understands a lot, we just have to keep working to help him express what he knows, feels, hey wait! He seems to have fewer problems expressing what he wants. :)

Matthew my "Tester".

I have a hard time figuring out if Josh's equipment is 100% up to par. If one of the wires is getting old and frazzled, his sound quality could be compromised. Matt has a much better descriptive vocabulary. I use him to test if something "funky" might be going on with Josh's headpiece and wires.

I was wondering why Josh has been responding differently lately, hooked Matt up to Josh's wire and headpiece (BWP). Matt told me right off the bat that Josh's was "softer, like one or two on the volume". Not a lot softer, just a little. No interference or anything, just a little softer.

So I went through my Box O' CI Stuff, and pulled out some new wires and Matt's older BTE headpiece (he's using the newer Auria headpiece with his CII BTE), which I knew was still working well. Boy do we have a lot of CI equipment! I need to organize it better. Two boys, four processors, an older set of hearing aids, batteries galore, different harnesses, FM system, more batteries, WOW! And to think I need to put in another order for equipment, too. Oh, boy.

Anyhoo, I put everything together and am psyched to have such a good tester to help me quickly and certainly figure out what's going on. Yeah, Matt!

I'm SO GLAD the batteries last so long, I don't have to order them very often. But I do need to order more equipment through insurance. More paperwork, yuck. ;P

"On Back."

I remember a year ago when Josh was finally moving through his vestibular issues. Walking better, really starting to get around. That's when he seemed to be freed up to finally communicate more with us, on his own.

Fast forward a year, and he is now vocalizing when I verbally prompt him to, not needing touch so much to remind him. I am so thrilled! I'm wondering what the next year will bring. Now that his receptive language is getting so much better and he's vocalizing more, I really see the need for more oral therapy. I'll have to talk to his speech teacher, see what they're doing. And when we finally get into a developmental peds department here I'd love to see what else we can get, as a medical not educational issue, for insurance purposes.

But yesterday he really started getting me. I've been feeling like doo doo this past week, hard to move. Back pain, you name it. But when Josh asked to go downstairs, "Ah ba.." (for "On back"), you BET I gave him a piggy back down the stairs. He's been signing this, but I've also been encouraging him to say it. Yesterday he did it! All on his own! :) I find him vocalizing much more, when he's not falling over tired, and I am so thrilled! It's like something has finally clicked in his little noggin. Especially vocalizing the word, "NO!", but that's another story...

The boys are quiet...

That is either a blessing or a warning. I will have to type quickly and then check on them. :)

Something I wanted to note. We started using closed captions for Matt's TV viewing, and his vocabulary and comprehension have greatly improved. I started off by watching a show with him, paused it (digital cable), then asked him about what was said. Since we started adding CC, I've done the same thing (w/o CC) and have found his comprehension much better. I think he just had to teach himself how to focus on what was said. How we speak things in class and therapy are much different than how things are said in the media. Much quicker there, more colloquial (sp?). I found that so true when I studied Russian. Give me a book or newspaper to read, not so bad. I would get very nervous when actually talking in Russian and listening to a speaker, but forget about listening to the radio or TV shows in Russian. It was much easier w/ a vocabulary list in front of me, helped me to "train my ear". Kind of like what we're doing with Matt, I guess.

Joshua, Joshua, Joshua. He is communicating much better now. I have to keep encouraging him to use his voice. I'm at a loss of what I could be doing at home, need to look back into the book, Listening for Littles, for some more ideas. Good program. But that kiddo spontaneously made a three word sentence (with signs) in class yesterday! He's been doing that at home, and much more. It's good to see he's doing that at school now, too.

I've been tired lately, had a little visit to the ER with more doc visits to follow. It's really hard to give much attention to the boys when I feel like I'm going to fall over, face forward. But the boys have all been very understanding. I'm working hard to get more order into this home so I can have more fun time with the boys. And for all the hours I already spend working with them, I feel absolutely no guilt when I have to take a break. I can see Joshua slip back a little when I'm not consistently working with him, but he'll get right back on track when I have the energy to keep up with him.

Okay now, PLEASE DELURK and leave a comment! I sure would love to hear what you think about my blog, our CI journey. Any suggestions or ideas for support would be greatly appreciated, too. :)