Something Different

Because this came up on the CI Circle AND I had actually thought about blogging about this very subject, today's topic is what hubby and I have deemed "The Look".

I forget that Max even wears an implant most of the time (other than putting it on in the morning and taking it off at bed time) until I see "The Look" register across someone's face. I always realize when someone notices Max's implant (he only has one so it may take some time to register). They get this look on their face and I can actually read their thoughts, "oh? I wonder what that is? is it an ipod? hmmm it's flashing? should I ask? will I sound like an idiot? will they be offended?" I can see all of these questions and emotions on their face and I'll usually take that time to tell them about the implant and "miracle" we get every single day.

I've had people ask what he's listening to, point out that his ear is flashing (only to be mortified when I tell them what it is and what it's for), and one lady just could NOT stop staring at it in the movie theatre (that red light does flash brightly in the dark). I'm pretty sure she was hypnotized by that light flashing quickly since she could NOT stop staring and can only imagine her telling her friends and family she couldn't remember what the movie was about maybe something to do with flashing lights? One time we were invited to a friend's church and a woman came up and started talking to my husband and I and she was yakking away (about her 20 yrs of christianity) and then noticed Max's implant and again it was "The Look". You could see her face change as if she had put on a mask, or taken one off, whichever you prefer. She actually told us that we should take Max up to the preacher and have him pray for Max!!!!!! I was so fired up over that I could have slapped her in the name of Jesus myself!!!!! I can pray to God myself thank-you-very-much, and he has answered my prayers, my son can hear and speak. ooohhhhhhhhhh I was hot.

Most kids notice (again the cool lights) and I've noticed that some kids are better than others. Some will ask and once they know it doesn't faze them in the slightest. I have noticed that middle school age kids, 3rd, 4th, 5th, and 6th usually are worse, as they don't ask but point and whisper to one another about it. This caused a meltdown for me at vacation bible school this summer when I took Max and left him, only to think of the older kids and their pointing and whispering which caused me to start crying and freak-out and insist to my husband that I had to go back because I had thrown our son to the wolves. However, Max was fine and actually a 3rd grade boy had be-friended him. Usually Jr. and Sr. High school kids will ask and it doesn't faze them either. Sometimes someone will come up and ask when Max got implanted and they know all about the implant or someone else with an implant and that is kinda cool too. Get to meet people you wouldn't have otherwise talked to.

The best thing about going to the AG Bell Convention this summer was that no one even thinks twice about it. Don't have to explain, don't get "the look". Oh, and there's lots of other kids there with things hanging on their heads and ears.

So yeah, it is "different" for others (obviously not for us anymore though) and it is great opportunity to educate them. You never know, someone you educate may be really glad that they talked to you one day if they face hearing loss or a loved one, young or old is diagnosed. Can you HEAR me?

Singing......la..la..la...la...la...

Ha! Don't tell me a deaf kid can't sing. Here is a video of my son trying to sing to the High School Musical Wii game. It absolutely does not matter that he doesn't know the words, or that he is off key. He is singing!!!! I have to give him a lot of credit. For one thing, he is singing the hardest song on the game (notice the captions in the background) I can't even add the captions to this video because it's a nonsense song. He got a C from the Wii and I honestly can tell you that I probably would not have gotten a better score.

Can you HEAR me?

The MOST Expensive Tube

When Max was 14 mos. old he got tubes in his ears. This is how the whole process with Max's not speaking any words, not turning his head when I called his name got started. It seemed that he could hear, but he just wouldn't talk or turn when I called his name. I remember being scared it was something on the autism spectrum, not full out autism because he was sociable other than not talking and not responding to auditory commands or his name.
So we go to an ENT at a local hospital and he says "Yes, his ears are full of fluid, that is why he is not talking, it's as if he's hearing under water." So at 14 mos. Max gets tubes in his ears. I'm guessing that the surgery for the tubes cost me around $4,000-$5,000. I'd like to give you an actual figure and not a guesstimate, but a lot has happened since this time and honestly my brain cannot possibly keep up with it all. But I'm going to assume this is a fairly good guesstimate.
Of course, the tubes don't seem to be doing the trick, he still doesn't respond and still makes no attempt to say anything. The story from there is like a tricky twisty maze, you go in one direction only to run smack into a dead-in and have to turn around try another and hope you get out of the darn thing FAST, because you're tired, thirsty and it really isn't fun anymore. So I guess I don't have to tell you it wasn't the fluid in his ears since he now has a cochlear implant. You can pretty much guess that it was a full blown hearing loss that somehow happened either after he was born, OR the hospital messed up the newborn screening to begin with.

In the middle of August, Max's first week of school I noticed that he was digging in his left ear ALOT. Everytime I cleaned that left ear I noticed that the wax or the end of the q-tip looked a little bloody. Hmmmmmmmm, ever trying to make things less severe, I assumed that he had possibly gotten a bug bite or something just right in the ear canal and scratched it. After watching him in the observation room one day during school, he really was going after that left ear. Even his teacher looked in there. That night I again cleaned it with a q-tip and sure enough that was blood. So the next day while he was at school, I asked his audiologist if she could possibly go check his ear since he keeps sticking his finger in there. She told me that he definitely had something going on in there and needed to be seen before Monday when his ENT surgeon that put the implant in (Not to be confused with our local ENT idiot) could look at it. Still pretty sure that it was bug bite I called our "papaw/doctor" for a look on Friday. He looked and was pretty shocked to find that Max had a very bad infection in the outer part of the ear, basically in the canal. Max was put on antibiotics and antibiotic ear drops. This was probably at a cost to us of $115.00. He stated that he did want Max's ENT to look at it since it was really bad and with him being an expert and all with the ears. So on Monday I take Max over to his ENT and he exclaims that yes it is really infected but everything we are doing is good so bring him back over in two weeks. That appointment cost me $54.56 (insurance will break them down and pay a small portion). So we take all the meds, ear drops, and papaw looks at it again and says, "Geez, I think it's that tube that is infected. Looks like it might have scar tissue or skin on it." O.k. STOP. Let's do a little rewind here. Tubes were put in, right tube was removed during a good ear cleaning while sedated for an ABR. Left tube fell out whatever they put it in, ear drum, but never fell out of the ear. Now back to The MOST Expensive Tube. He suggests that I take him back to Max's ENT and have him take a lookey-loo. ENT looks and says, "yes, it looks like that is what is going on, still a little inflamed, we're going to have to schedule surgery to remove it." NOOOOOOOOO, this cannot be. I have had medical bills out the wazoo with his cochlear implant surgery, getting to that surgery, my daughter's seizures, EEG's, MRI's, our sawmill went bellyup dead and we filed bankruptcy in April of this year. I have no money, no way to get any money, we are living on the edge, my deductible is $3,000.00, the job Trent's been working at is going belly up as well, he's doing odd jobs which pays odd amounts. NOOOOOOOOOOO. So surgery is scheduled. During that time I pray, I pray hard. I pray for that tube to fall out, go away, disappear. Oh and I get another bill for $54.56. Surgery day: Thursday 9/18. We were supposed to see ENT on Monday but because of the hurricane winds that wiped out S. Indiana and KY, there is no electricity anywhere so no appointment with ENT(savings: $54.56). On Thursday we get to the hospital at 9:30 am. We go through all the rigamaro and with each person I say, I'm still holding out hope that it's fallen out or can be taken out without this surgery. They all look at me like "yeah right." Just as the nurse was bringing the "happy juice" to make Max happy to be going out, I ask if the ENT could just take one more look and make sure that he can't get it out without surgery. ENT comes in, looks, and says I think we can get it. It looks like a little ball of wax blocking it. So surgery is "off". Thank goodness. I'm so happy, I'm sure we'll have to pay something but probably not $3,000.00. ENT gets telescope from operating room and he and Trent and two nurses hold Max while he tries to get the tube, and I cower outside because I don't think I can bear this. After about 5 hours, no not really more like 5 minutes but dang it felt like forever, they come out with, can't get it. It's attached. Oh holy crap. Surgery is back on they give us the "happy juice" for Max. At about 1:00 - 1:30 they come and take Max to his tube removal surgery. I cry when they take him, as usual. I've been through him being sedated or surgery 6 times now, you think I could get over that, but I can't. We wait for him to get out, only 10 - 15 little minutes, it's just a little surgery you know. Max comes out and he is furiously mad, cries, tries to nap for a minute, remembers he was violated and cries some more. ENT says that it was attached to the ear drum still, tissue on it is being sent off to biopsy, hole should close on it's own in ear drum, and gave us antibiotic drops to start putting in on day 5. Max was fine that night, riding his bike like nothing happened. Happy as a lark. I'm happy that it's out, til I get the bill I'm sure. This tube, a little bitty green thing, is the MOST Expensive Tube. Probably around $8,000-$9,000 when it's all said and done. I wish I could have had it. I'd frame it.
Can you HEAR me?

Just when You think......

I could do a lot of those. Just when you think......you've got it all figured out, you're done, you're in the clear, you're something,...........it comes back and smacks you square in the face like a boomerang. Things have been going very well with Max and his speech. Oh sure there are times when I'm completely clueless as to what he's talking about, I just nod and go on, or say o.k. and go on (gotta stop that one though because I can see us getting into a lot of trouble) or I say really........ and hope that he says something else that gives me a clue as to what specifically he is talking about. So anyway, Max is doing really well, has over 200 words, picks up new ones daily (or every other day) starting to put more consonants in, following two and three step directions, making his own little two or three word combo sentences. I'm feeling pretty good and confident about all this again. (Let me say there are peaks and valleys in my confidence level in where Max is at, where he's going and how long it's going to take to get there.) So Monday Max gets home and lays on the couch, won't get up and I take his temp and it is 102!!!! O.k. so we start the piggy back of Tylenol and Ibuprofen. Tuesday morning he still has a fever of 99.9 or so and it goes up to 99.9 and down to 99.1 (I know not technically a fever but still, not your average.) So I start asking Max does your ear hurt? No. Does your throat hurt? Funny look and then a "no". And I realize that he has no idea what his throat is!!!!! He knows ears, I mean honestly how could he not since his have been poked and prodded and discussed more than any other topic in our house. He knows nose, arms, legs, eyes, hair, head, feet, hands, toes, fingers, knee, belly but throat..... that is a new one. And the trick is getting him to figure it out. So when he went and got it checked and yes his throat was red, I tried to explain where his throat was. So, thus goes the confidence level again, swinging on the downside as I realize just how much more he has to learn just with normal bodily functions. Sigh....
Can you hear me?

Some things are easy.......

It's amazes me how quickly my son can pick up some things. For instance, this weekend we took a trip to our "local" Wal-Mart, not something that we get to do very often anymore since Max has started school and we have such a long drive to get to school. Passing the gaming section, Max ran over and started to play a Playstation game. As if a trip to Wal-Mart isn't long enough. It was so easy for him to figure out how to move around and play the game, especially since we have a Wii and not a Playstation so he was unfamiliar with the control pad; however, it is so hard to get this language going. Don't get me wrong, Max is doing fantastic. He's got well over 200 words and puts 2-3 word combinations together. It's just that it takes so much time and so much hard work (and a lot of ingenuity, yakking, driving, gas, and time on my part ":c). I don't think that people realize all the hard work and effort that it takes for Max to hear and speak. Most people think that we turn on the implant and vwala! Hi Mom!! They don't realize that he has to learn to listen, learn the word or sound and meaning, and then practice, practice, practice. If only Phonetic discernment could come as easily as a Playstation game.





http://s9.photobucket.com/albums/a66/brakim1/?action=view&current=Ridin.flv
Sorry can't get the video in, you have to go directly to it.

Speaking of easy, my daughter has finally taken off the training wheels on her bike. I'm surprised that it only took a "few" spills to be able to do this since we have a gravel drive rather than concrete or asphalt. When I look at her at 7.5 years old, I'm astounded at how big she is but yet still yearn for the baby that she was. They really do grow up too fast.

















Can you "hear" me?