Can you hear me now???

So, if you're my friend on Facebook, you might have notice the status updates mentioning Nate got his external part of the cochlear implant last week, and it seems to be working!  I'm sorry it took me so long to get a blog out for this, but it's been a little busy around here lately.... not that it isn't that way on a normal day, but you know what I mean right... right?

Nate got the "processor" part of the implant last Thursday (Jan. 29) and they did the initial programming.  The ENT told us that he was able to get all of the electrodes in, so that will provide optimal stimulation.  The technical part of all this is head-spinning, so I will explain this as I can understand it.  Each electrode is programmed with a different stimulus.  They test each one, and check for nerve response and also physical response.  Now, Nate has significant brain damage, so his response isn't like a child who's just DEAF.  We would watch Nate during the testing and it SEEMED like there was response.  He would maybe blink at the extact same time everytime, or he seemed to move around more during the testing.  I was wondering if what I was seeing as response was just my imagination, wondered if I was generating his responses in my mind.  But, I WAS seeing something.

So, we took him home and then took him back the next day and they did another programming.  The audiologist thought she was seeing a little response as well.  Maybe, she just was getting used to Nate now and knew how his responses flowed.  I don't think she had ever worked with a kiddo like Nate before, so this was new and she relied on US a lot to tell her if we thought he was uncomfortable with the levels or not.  But there was also two other ladies in there to witness anything as well.  So, between all four of us... we felt really good about his reactions.

This week, we just focused a lot on talking to him, singing to him, pretty much bombarding him with sound.

The most annoying thing about this device, is that the magnet that attaches to the internal magnet comes off ALL the time.  Since Nate doesn't sit up, he mostly reclines or is laying down unless we are supporting him.  So, the second he turns his head to the right-- the magnet pops right off.

When we are feeding him his food with a spoon in his high chair, he's constantly turning his head back and forth, so we stick it back on everytime we notice it's come off.  I think how messed up would that be to have sound- no sound- sound- no sound.  I tried it with my IPod, it's dizzying.  Try full on sound, then hit mute, then sound again.  Can you say VERTIGO?  Yowza!

Well, we will try to work on keeping it on better, it's just hard. 

So, Craig took Nate yesterday back to MWEI and they did another programming.  And there seems to be even more and better response!  Terrific!  We are very happy with that!

I have to confess though, we are supposed to work with both the cochlear and his hearing aid on at the same time!  I HATE that hearing aid!  We've had two ear molds made and neither of them fit very well, so it would whistle everytime he made a move.  We are waiting on yet ANOTHER mold to come that hopefully will fit better.  It's such a shame that we spent so much money on this thing and he hardly ever wears it.  It actually makes my stomach turn a little bit.

Well, in TND news... we got our first load of sweatshirts in and they are awesome!  I wear mine everyday, in the morning when I wake up.  It's sooooo warm!  If anyone would like one, either contact me because I have a few of each size here at the house, or you can email Carrie and she'll order you one!

We are planning on doing the Meet Nate Day at MAM fundraiser again this September and like I've said before, we are wanting to do it on a Saturday.  Since we already did this once, we think this next one will be even bigger and better!  And we have some REALLY COOL things in the works for that!  I will have some news about that hopefully soon!  Oh you just wait people.... it's gonna knock your socks off!  Also, we are planning a Firehouse Chili Cookoff for May (hopefully) and once we get some more details ironed in for that, I'll let you know! 

We've been laying low for a while, but TND is kicking back into gear!  We are ready to jump start some charity PEOPLE!

Okay, well I must be off to feed the Nate Dog himself. 

Love you all!

Carolyn

What kind of a "blogger" am I???

Hey there all you faithful TND-ers!  I have become such a bad "blogger"!  I am sure, those of you who try to keep updated with us, are tired of coming to the site and seeing the same old post as two weeks ago.  My New Year's resolution (ok so it's my Jan.21, 2009 resolution) is to post at least once a week.  How's that?  I will dedicate my time to unloading my thoughts, stresses, worries and boredoms on to all you fine people!  God love ya!

Anyway, Nate News:

So, Nate is doing amazing!  His surgery went very, very smoothly.  Once he woke up and was "with it" again, I was able to feed him his dinner and then a bottle.  The nurse had come in and asked me if I wanted him to have any pain meds since he was eating, and I said, "Sure."  So, she comes back and starts to squirt the medicine in his mouth, which he dutifully swallowed, and I asked what it was.  She said Tylenol.... with codine.  Ha, ha... I didn't know they even gave one year olds codine!  I wasn't opposed to it, I didn't want him to hurt, but I was surprised at the medicine.  I guess I figured they would give him Motrin or just straight Tylenol.  Then I was glad that I HAD fed him, because I know what codine can do to an empty stomach.  He felt asleeeeeeeeeeeeep (emphasis on that word, of course) around 7pm and was out!

The night nurse and Care assistant would check on him every few hours, not that there was anything to check, he hadn't even moved.  But at around 2:30 am the night nurse woke me up and said she would like to suction him out.  He had a bit of a cold with a tiny cough, which we were used to and honestly, not terribly concerned about.  He has had this type of cold/cough thing before and even though we do EVERYTHING that you can do at home to alleviate the symtoms, nothing ever seemed to make it that much better.  Just time.  We had even been given a nebulizer and Albuterol once.  (again, that never seemed to be the ticket either)  So, I was a bit pleasantly relieved when she said she wanted to do a little tube suction.  Poor guy, as asleep as he was, we had to wake him up gingerly then she sticks this tiny tube down his throat and up both nostrils-not at the same time mind you- and I would say.... THAT woke him up!  But it did clear him pretty good and then he was WIDE awake.  So much for a good nights sleep, for him or myself.  I decided to feed him another bottle, simply since the only time he ate on Thursday was his dinner and a bottle at around 5:30 pm.  Well, he had a bottle and promptly fell back asleep.  That's ma boy!

We woke up the next morning and ordered him a feast of baby foods, oatmeal, pancakes, scrambled eggs... I figured we might as well try, since we were there and the food was "free".  He ate like a Zeller man eats.  He seemed to like (or not hate is easier to tell) all his fun new foods. 

We got discharged around noon and have been home ever since. 

The swelling is pretty much gone and he doesn't seem to be in any pain.  We go back to the ENT on Friday to have the incision checked.  I think it looks good, but what do I know?  All I can tell is there's no redness or oozing from the incision and he doesn't seem to be bothered by it.  Sooooo, I think that's a good sign.

Then at the end of next week, we will go to the Midwest Ear Institute and have his initial stimulation/programming done for the outside part of the cochlear implant.  If you have no idea what I'm saying, then you must realize that the implant has an inside part and also an outside part.  One doesn't work without the other.  The outside part is the "computer", the thinking part of the implant.  This will consist of a magnet that will be placed over where the implant is in his head.  The magnet has a wire that comes from it to the computer.  That will either be body worn or over his ear (like a hearing aid).  I think we are gonna go with the body worn for a while, simply because he doesn't sit up.  Nate's always reclined or laying down, so having it around his ear, plus the hearing aid on the other side could be a little much. 

Well, here's where it gets tricky.  I think I've said before that this is not a gaurantee that Nate will "hear".  He will have "nerve response".  Now, if his brain was perfectly healthy and had no damage, then that "nerve response: would be all he'd need.  Of course that is not our little Nater Tot.  So, fingers crossed that his brain can interpret the sound accordingly.  He will have a few stimulation programmings, and then we will do some auditory training to teach him to hear.   I have faith though, that even if it's not right away, that he WILL eventually benefit from this.  I hope he can experience this world through sound. 

Nate has gotten very mobile with his arms lately.  He's also been opening his hands all the way.  He used to always be clamping down on his thumb with his other four fingers.  Now, he has an opposible thumb!  HA HA!  He's still my little monkey though.

He also looks as though he could roll over.  He cranks his head back when he's laying on the floor and brings his arms to that side.  All he would have to do after that significant (for him anyway) move, is get his legs over.  We're working on it.

Nate is also trying to cut about 6 teeth right now.  Since he doesn't chew, he's not cutting the teeth though on his own.  His poor little gums have been swollen for weeks if not months.  I will use a cold wash cloth to rub his gums and it's absolutely heart breaking to see his look of pain.  It's the ONLY time that he has looked like he was in pain since May 10, 2008.  I keep thinking maybe it will trigger a cry, but I'm trying not to be sadistic about rubbing his gums or anything.  So, anyway, he has his two bottom teeth in and now the ones trying to move through are the top two (one has broken the surface), then the two on either side of the top and the other two on either side of the bottom.  I imagine what that feels like for a kid who's not brain damaged and I guess in a way both relieved and sad that he doesn't seem to feel it (unless I'm scrubing a rough wet wash cloth on his terribly sensitive gums).

Well, today is Wednesday and I'm going to be running like a crazy person for the next 7 hours.  Wish me luck!  And I promise to be better about postings and keeping up to date! 

Love you ALL!

xoxoxo

Carolyn

Nate's Cochlear Implant Surgery

Hey there everyone! Just wanted to pop in a note here for anyone who's interested in knowing how Nate's Surgery went.

Everything went really well, the ENT told us. He was able to drill through the little bit of bone oxification that had grown, but didn't show up on the CAT scan. So, also he was able to then feed the entire wire with all the electrodes into his cocheala. That's awesome news!

He has been in recovery since about 1:30 and now we sit in his inpatient room here at CMH. He has a VERY padded right ears with a ring of gauze encircling his sweet little head. He is randomly opening his beautiful blue eyes and his daddy is cuddling him right as I type this. We will try to give him some water through a bottle here shortly and as long as things go smoothly, we will be outta here tomorrow.

Thanks for all the prayers people! This little guy IS a fighter, we all knew that.... but the prayers DO help... that much I am sure of!

Thanks,

XOXOXOXO

Carolyn