History

Wednesday, October 17, 2007 8:02 AM CDT

It's been forever since I've posted, I guess probably because everything is going so well. Charlie is talking like crazy -- his articulation needs a lot of work but he's really making some serious progress. He's talking, spelling and reading now too. We are very proud and excited.

He's also taken up tee ball and pretty much does airplane spins in the outfield, but he does like to hit the ball and bask in his glory.

We're super excited about going to disney world next month! He's going to lose his mind!

IEP meeting tomorrow. Hope it goes well!

Tuesday, February 20, 2007 10:24 AM CST

Hey All,

Figured it had been a while so thought I'd post. We're all doing great and Charlie continues to use more and more words and sounds almost daily. I've pretty much given up on keeping his "word list" as he adds new ones every day. We've been really working hard on him getting all the consonants he seems to leave out -- the /s/, /t/, /p/ sounds especially.

The great news is he is starting to use some sentences very regularly now -- I'll do it. I did it. You did it. I want ________ -- he started with chocolate milk but has now discovered that he gets more "stuff" when he uses his words properly.

I am very very proud of him and am encouraged that he will catch up at a faster rate than we had anticipated. I was telling his new audiologist that a year ago they had us thinking we needed to consider other modes of communication, which totally freaked me out. But now I am confident in his curiosity and his enthusiasm to try new words and sounds, and really feel like he'll be able to make it in a mainstream setting in the next few years. :)

He's starting to respond to me on the phone and "talk" to grandpa and grandma when prompted. Think that will come more easily when he goes to a behind the ear configuration of his implant. We're STILL putting them on his shoulders. Tried the earhooks a couple of weeks ago and he did okay for a little while, then I caught him on the computer with the entire thing, hook and all, laying on his shoulder where it normally would be pinned. Funny boy.

Well better get movin! Take care.
love and hugs,
Michele

Tuesday, January 2, 2007 9:54 AM CST

Happy New Year Everyone!

Well, we've made it through the holiday season. Hope you all had as great a time as we did. I'm still tired from all the fun!

It's so amazing to report that Charlie's been bilateral now for over a year as of 12/16 and we are SOOO excited about how quickly he is progressing now. I don't even know that I can even keep up with his word list anymore as he's randomly saying pretty much everything now. Mimicking everything we say and seems to want to know what everything is called now. I'm so relieved I could just cry and I actually have a few times.

He's reading along with a few lines in his favorite books now and is spelling -- calling out most letters, counting to twenty, thirty with a little coaching. He's starting to use sentences when we make him. He was so excited with Christmas this year and his "ho ho ho" was perfect and his trip to see "Anta Caws" he now expects to repeat every time he gets in my car now.

I took him to Borders Books for the first time and he was right at home. He promptly took his coat and hat off and went to the search engine computer and immediately typed in his name in the "keyword search" space. He's very computer saavy and is playing golf like a champ too!

As you can see from the picture, we were very lucky and got to actually meet the Wiggles. They were very gracious and I must admit I was a bit starstruck. Charlie has never been so excited and now when he watches them on TV you can see that he feels like he knows them now. He loves his Red Guitar and loves to play with Murray.

Well, I'll post some holiday pics as soon as I figure out how to use my camera. Thanks for checking in. Enjoy 2007!!

Love and Hugs,
Michele

Thursday, October 12, 2006 10:53 AM CDT

We are now about a month into school now and I am so proud to say that Charlie is already showing a lot of improvement, both expressively and receptively. He is imitating the most random words now and seems to finally want to learn what things are, how to say them, etc. Still having a little trouble with consonants and are considering trying a different type of therapy to see if that will jump start him using them more often. But I understand his vowel-ese quite well and am excited that he is talking so much now.

I heard his first unprompted sentence the other day -- He grabbed a box of poptarts off the counter and said "I oh-eh iht" -- translation -- "I'll open it."

The funniest thing right now is potty training -- we've got number one pretty much down, but #2 has been a bit of a struggle. It's hilarious when he has to go because he pretty much strips down --- then when it's time he stands there and says a very long and drawn out "oooohhh moe" which is his version of "oh no." Frankly he can keep the oh moe as far as I'm concerned -- its so funny and cute, but then I'm a little biased!

He's doing really well at his auditory oral preschool and enjoys the 6:15 AM pick-up for the hour 1/2 ride to Hampton. Then in the afternoon he's at Parish Day School and Richard picks him up every day around 430. He's become much more social and is playing with other kids -- basketball, soccer, trucks -- the interaction has us breathing a real sigh of relief. The tantrums and not joining in was making us nervous. Well I better get...

I'll post more soon!
Hugs,
Michele

Tuesday, September 12, 2006 9:56 PM CDT

Three months have passed and my boy is another 8 inches taller. Just kidding maybe two, but he's definitely at least 3'3" tall and getting larger by the minute.

After much learning of the processes and red tape involved when it comes to "stalking aka advocating" for your child, he has finally started an auditory oral program out of district. I honestly thought getting his alternative placement would be tough, but the enrollment process at his new school was crazy. He's in though and did very well his first day so I suppose that's what matters.

The final step today was the agreement to accept Charlie's IEP from the Beach. They conference called me in. I was as always nervous, but I think it went well. It was almost like getting married to hear that they would adjust Charlie's IEP on the basis that the placement would provide Charlie with the most appropriate setting to best acquire receptive and expressive language skills while giving him the opportunity to interact daily with normally hearing peers.

He was VERY possessive of his new language journal tonight, so I know he is happy to be back in school. It was very tough to put him on the bus while it was still dark. But he was sooooo happy to be on a bus and greeted Miss Becky with a very loud "HIIIIIIII" and clapping with "YAYYYYY." He loves to ride the bus. His preschool/daycare, in a mainstream environment over the summer has definitely made a difference. I wish we could just start a program there (wink wink Missy), because as of today they have THREE bilaterally implanted kids attending!! SO EXCITING!!

Both of Charlie's teachers at Hampton today were surprised how well he did. I joked with his Grandma Barbara that they got to see the new and improved Charlie today.

Okay -- new word report --

the word how it sounds

pancake aah ache
syrup sssrp
wash ahsh
dry rye
cheerios sssheeerios
cereal sssheeerios
cheese jeez
pickles ih(sharp) uls
cup cup

I'll try to post some new pics too ASAP!

Thursday, June 8, 2006 6:36 AM CDT

Everything is going smoothly. Charlie continues to progress and is trying to make new sounds, almost daily now, so I'm very proud of him. We're now still trying to work on /d/s and /n/s as he still hasn't taken to them, but he is trying /k/s, /r/s and /s/s. I've been trying to get him to add the /s/ to words he ordinarily leaves them out of -- mouse, house.

We are in Week 1 of potty training -- hoping to get him trained by the end of August so he can start his new Auditory/Oral school like a big boy! So far so good. As with everything else, he wants to be in control. Like most men, if you make him think it's his idea, everything is perfect.:)

Had a great 4th of July. Charlie spent nearly 3 hours in the pool. I need to do that more often because he really enjoys it and i think would learn readily with more swim-time. We also made it to our first theater movie, Cars, which he loved and is saying now with pretty good accuracy -- he says it breathy --kind of antonio banderas style, sounds kind of like /hars/. Made it an hour 1/2 and had to leave because he wanted to climb/sit on the steps.

He's also at a new mainstream preschool/daycare at our local Episcopal Church. They have been wonderful so far -- so patient and interested. First week was a little up and down, but we're in week three now and he is a happy clam when Richard picks him up every day, so that is great with me. We're already noticing better social skills since he started there. He's greeting people better and seems to more readily play with other kids and follow directions when told.

Well i've rambled on enough. Take care!
OX michele

Monday, May 8, 2006 8:42 PM CDT

We are so excited and elated and relieved...in the past 6 weeks Charlie has gone from about 25-30 words to more than 100. He's now imitating words fairly regularly and is confusing words that sound similar. So when he's confusing mouth and mouse, I'm the happiest mom ever! The new word list is, and if I bore you, sorry, I'll keep doing this until we've rewritten the dictionary.

thank you mmm mmm
shoes shooce
juice chooce
open mmmpeh
please eece
bubble uhuhl
boohbAH booo bah
purple er ul
boat boht
cat at
alldone ah uhn
black bwac
yellow yeyoh
water wawa
cupcake uheight
yes yeeees
more more
o (letter) oh
green yeen
blue bwu
red reh
orange oin
wallace oohwah
tree ree
table mmmble
play yay
more water mowahwa
hat at
fish ish
ball ball
book book
milk muhk
juice jss
eat eeet
i love you iiihh uhhv you
charlie arhleee
help ehp
open oh eh
please eeeze
blanket yahnyet
baseball
remote e moh
play ay
playground ay ou
Trashmore ahhmor
bird ur
moose oos
mouth mow
blocks ocks
lamp aaaahhmm
eyes ice
nose ohs
ear ear
golf oofff
robot mmmmbaht
watch atch
itch iss
squash ahsh
chocoalte ahhhleh
cheese eeese
Brittany ih-eh neee
backpack ack ack
tools oools
bus bssss
pizza eees ahh

That's the end of april list, there are many more words now, I think we're around a hundred now.I will update the list soon. I'm so excited about every day when he says anything.
I am proud, relieved and more determined than ever that my boy will be able to have the best of what he wants.

He's sooo super smart, there are concerns that he is showing signs of early adahd, lack of attentiveness, whatever....i'm praying that his language delay si the majoyr source of frustration for him. I pray every day that that is the case and that it's not some behavioral or other delay.

Keep you posted,
Love Michele

Love,
Michele

Wednesday, March 29, 2006 5:33 PM CST

Well am I tardy enough? We've been watching and waiting and coaching and praying and talking talking talking. And finally, dare I say it? A SPURT!! An honest to goodness growth spurt in language. He's been vocalizing more and more since his second activation in December -- more spontaneous imitation, more everything. Then this past weekend he started saying words -- it might not seem like so many but to me it's a dictionary. Here's the list:
cow is ow
all done is ah uh
black is bwack
yellow is yehyo
water is wahuh or wawa
cupcake is uh eight
bubbles are ubbles
yes is yes (especially when I'm saying no :)
more is now more :)
thank you is still mm-mm but he's got the right inflection
o is o
green is yeen
purple is er ul
blue is bwu
red is reh
wallace is ooh wah or wawa
cheese is eeeez
strawberry is ah yeh yi (first 3 syllable today! :))
cat is at
tree is ree

You have no idea how excited and proud I am. It's like someone turned a light on in my heart. All the fear and the worry and anxiousness... well of course it's still there -- it's me, remember? haha. No, but I feel such a rush of hope and pride and a renewed sense of knowing that we can work toward the goal of my baby boy having the best chance in life by being able to communicate with all of us. Okay, I could start crying now so i'll go into some lighter stories.

Charlie's all about some Napoleon Dynamite. He reenacts scenes when it's on, and has been caught substituting a handful of hot dog pieces for "tots" while searching for a pocket on the side of his pants leg. He does a pretty good version of the dance sequence as well. He really likes the intro the most, I think he has an eye for retro design.

He's trying to sing now also and of course there's very little articulation but his pitch is pretty good. I catch him humming songs from circcle time at his school. I am so grateful to his teachers Miss Jessica and Miss Marybeth for making us a tape of all the songs they sing.

I have a lot to update on, but don't want to bore you all to tears so I'll continue soon. Lots of school stuff going on right now -- I think they may put a soundfield system in charlie's classroom. VERY excited about that. I think that would benefit all the kids, as it has a microphone that the teacher wears that elevates her voice above the ambient noise of the classroom, which can prohibit good sound input for cochlear implant kids, or any kids for that matter.

Thanks for listening. I'll post more soon need new pics too!
Love, Michele

Wednesday, January 4, 2006 4:38 PM CST

We now have a binaural little guy! His activation was on December 16th, so he's had about three weeks of stereo sound. He has taken to his new implant like a champ and is already replacing it himself when he knocks it off. We're noticing that he's really enjoying music and seems to be trying to imitate songs with more confidence and ease. I'm not sure how much he's getting with the new one alone yet because with just the new one on, he's really not turning to his name. But I realize it can take several months for the sound from the new one to make any sense to him. I'm just sooo glad he likes it. He's really just now starting to pitch a fit when he doesn't have his "ears" on. Sorry I'm so late with the report, we had a super crazy holiday and so much fun. Charlie was totally amazed with Christmas this year and ran around saying his new favorite word of the month "Frosty", which in Charlie speak is "ahhhteee." The good news...we're getting a little t and some slight d sounds usually only in the middle of words and not so strong yet, but they're a'coming! We have another MAPping coming up next week, so I'm excited for that! More sound! More sound! :)

Hope everyone had a beautiful holiday, and Happy New Year!
Love, Michele

Sunday, November 27, 2005 9:22 AM CST

We are doing just fabulous, counting down the days to activation 2. Charlie got his stitches taken out on Wednesday so that made him a little cranky but he's becoming quite the resilient little one and stopped crying as soon as Dr. Strasnick was done. Of course Dr. S. also got one of charlie's dismissive BYEEEss right after aka "that's enough, i'm outta here."

We'll go back again this Wed just to be sure everything's looking good. I think he's doing just great. Finished off his oral antibiotics on Friday and is letting me touch his head in that area again so i think he's good to go!

I've been working with Charlie with some flash cards and have added mini-m&ms as a reward for speech and he seems to be open to it. He's attempted a few new words and we've been hearing more random things we're not expecting and thinking, okay...did anyone hear that? can I get a witness? Richard swore he said "bubbles" and with the flash cards I got "ow" for flower, "muh-ee" for monkey, "buh" for bug, "ih ah" for tick tock clock and his standard meow, wack wack for duck.

Of course coming off of two hectic work weeks and charlie's surgery, i think i finally just caved in and got a monster cold that put me out most of this week. I'm finally feeling better, but still tired.

We had a lovely thanksgiving and got to spend some good q-time with our family. I hope you all enjoyed yours! Now on to Christmas!!!

Love, Michele

Sunday, November 20, 2005 4:05 AM CST

So far so good! We had absolutely no idea that Charlie would bounce back so quickly. We were sure he would take the better part of a week to recover from his second CI surgery, but by Tuesday night he was climbing, and by Wednesday, he was back to leaning on his forehead doing mule kicks in the air. I limited those however out of my own fear.

The only discomfort he seems to have expressed was me putting bacitracin on his incision, but even with that, yesterday he calmly climbed in my lap and let me put it on gently without wincing or pulling away.

It was so sweet, right after I did that and changed a stinky diaper, he kind of stood up and looked at me thoughtfully then came up and put his head on my shoulder, then reached up and patted me gently on the back. He might have been mimicking BoPeep cozying up to Woody on Toy Story 2, but I prefer to think it was a genuine moment of tenderness.

Well, we'll have stitches out in 10 days, and then activation on the 16th. Much excitement awaits. Better go now, I'll go ahead and upload some new pics.

Love Michele

Thursday, November 17, 2005 5:20 AM CST

Hey there,

Well we made it through the surgery and recovery. Now I thought he'd be pretty much down for the count for the week, but I swear by late afternoon tuesday, he was good as new. Didn't even have to give him the tylenol yesterday, but we did at nap- and bedtime just to make sure he wasn't thrashing around in bed without his bandage. He was a little groggy when we came home Tuesday morning but walked in the house on his own and straight to the computer to whine for some noggin adn playhouse disney. He pretty much knew I was a sucker that day and had me changing DVDs every twenty minutes. I took his dressing off after his nap on Tuesday adn let him run around without it, but was scared that first night so I redressed it loosely for bedtime Tues PM, then took it off again Wed AM and bacitracined him up. He's been eating light, but seemed pretty much back to normal by dinnertime. I'm just so amazed. His incision looks so nice and clean. I thought we were going to have dissolvable stitches but Stras's resident said he used the regular ones. Maybe he needed the extra strength to hold in Charlie's rather large brain (he gets that from me ;) haha.

So we're looking forward to a month from now when he'll go live and in stereo. Can't wait to see if there's a big difference but I know it will take time for the two to work together in his little head. Thanks again for all the prayers and support! And thank you for checking in on him.

Love,
Michele

oh i'll post some pictures soon!

Monday, November 14, 2005 2:25 PM CST

Yipee!!

The baby boy now has 2 "ears." The surgery went very well. We got to CHKD at 6am for our 745 surgery. At about that time they gave Charlie some versed (sp) to zone him out a little so he wouldn't be so frightened, and boy did that stuff make him a little loopy. I wish I could post one of the videos, it was really funny.

Dr. Strasnick and the anaesthesiologists were ready for him at around 840 and we got hourly reports until he was finished at 100. Charlie's nurse was super sweet and said he was talking and flirting with her and the anaesthetist until he went under. No crying and he was a total trooper. We got to the recovery room at about 145 and now he's comfy and on the "dope" in his big boy bed. He has opened his eyes a couple of times and waved to Richard with no crying, then he's back out again.

We ordered pizza from Orapax for lunch and I made the entire day surgery waiting room reek of fried calimari.
My dad, his wife and my aunt hung out with us all day I've started knitting a purse and once again clipped coupons to pass the time. Dootsie and my dad played cards and as I suspected the FLARP Claire gave us came in handy several times and I had to make sure Richard and my dad took turns releasing the sweet sweet sounds. :)

Thanks so much to everyone rooting for Charlie and for holding me up when I'm being freakish, weird, upset or all of the above. Everyone has helped us soooooo much and I'm so excited to see what happens when #2 is activated on Dec. 16th.

Well better get back to the pooh before he wakes up. I'll post more about how he's doing when we get home tomorrow morning. We've got a nice private room on the rehabilitative care wing, which is awesome and has all of these cool murals and lego displays donated and crafted by graphic designers from NASA.

Love and hugs and thanks for the prayers and thoughts!
Michele

Friday, November 11, 2005 2:18 PM CST

YAY!!! We've made it to the weekend before Charlie's bilateral surgery with no phone calls from insurance so we are excited and so very nervous. This go round I think I'm less nervous about the procedure, but have more stress because he's older and will be more aware and scared before and after surgery. I will try to post as soon as we get home so everyone will know how it goes. I just bought him a new Wiggles sticker book and a coloring book for the stay on Monday.

Friday, October 21, 2005 8:17 AM CDT

Hooray! We've got all of our dates lined up for the next couple of months leading up to December 16 when Charlie will be our little Bilateral Boy! Here's a rundown of the appointments (I may need to refer back to this list to remember them all :) We just found out that his CT scans look good and that implant # 1 looks to be in proper placement so nothing physiologically looks as though there�s something going on with it.

10/27 Pre-op appt. for #2 with Dr. Strasnick
They'll check and make sure all his little ear parts are in good shape and tell us if his CT scans show that his temporal bone and cochlea look good to go.

10/31 Mapping of implant #1 with Jenny
We'll put him in the sound booth and test out how he's done with this past map and decide whether to up his levels again and check his impedance levels.

11/14 The Big Day #2!

12/16 Hearing Birthday #2!

He�s been doing really great lately. Totally loving school and making new sounds a lot now. Trying out his /s/, sh and chs this week, trying to say his name ahhee, obsessed with It�s the Great Pumpkin Charlie Brown, and really taking an interest in his ABCs.

I�m kind of bummed because today is picture day and he�s had a bout of impetigo, so I�ve been picking and cleaning him and laying down the ointment like there�s no tomorrow. When I�m doing it he�s gotten so he�ll just lay there and let me groom him, so I feel like a great mama ape. Oh, he�s also got a little cradle cap working � poor thing is his own Itchy and Scratchy show. But it is clearing up, thank goodness.

Well, I better get to work now! 3 weeks 3 days and counting!!
ox Michele

Thursday, September 22, 2005 9:01 AM CDT

Well, we're almost finished with week three of school. Everything is going really well so far. Charlie's vocalizations have increased and he seems to be getting some more conceptual things since starting school. It was the cutest thing last week when I took him to class after his AVT session at CHKD. His class was on the playground so I took him outside and he RAN to the other kids waving and shouting Hi over and over. When he got to the playground, one of the boys, Matthew, was waiting for Charlie and greeted him with a big hug. So sweet. Then when I left I gave Charlie a hug and kiss, then looked up to see the other two boys in his class waiting for their hugs too. Priceless.

In the past few weeks, we're getting some more words and approximations. I think that last MAP plus school is definitely having an effect on him...

c'mon mama moh mama
night night daddy niii ah ee
up up
bye bye bye with really hesitant b
apple ah uh
yay yay (new favorite word)
more mahr
birdy er eee
meow eee oww

OH! How could I forget!? We've got a tentative surgery date of November 14th for his bilateral implant. We are very excited and of course nervous. They offered us a date on Halloween, but I was a little spooked about doing a Halloween surgery! Take care everyone and thanks for reading!
Love, Michele

Friday, September 9, 2005 7:53 AM CDT

Well, today Charlie finishes up his first week of school. He seems to love it and spends time every night looking at his daily language journal. The only one crying when he got on the bus the first day was yours truly. So, we're very excited to see if the structure and language in the classroom will help boost his progress. I sure hope so! Everyone at his new school has been really eager to learn about his implant and I've met with his teachers, speech therapist and the school nurse as well. So this week we ate snack nicely, mastered the glue stick, colored a school bus and began learning that the school bus takes you from home to school.

We've had kind of a whirlwind lately, worrying about his slow progress and trying to determine what to do next. We have been considering a bilateral implantation for some time now and saw Dr. Strasnick at CHKD last week and will tentatively be put on the surgery schedule, so we're very excited about that. My feeling is that if he gets the second one and makes a marked jump in progress expressively, then we'll know better to investigate the first one. Plus I hate the thought of him just starting school and then potentially losing his hearing again while waiting for activation. I have talked to everyone I love, trust and know and everyone has been so supportive. We are so lucky to have so many people that are working hard to make Charlie's life better in every way.

All this aside, Charlie continues to progress slowly but surely -- he's recently returned to producing b sounds and is saying bye again, ball and is playing with other sounds -- s and th. He is handing us the phone when it rings and is imitating Laurie Berkner songs. He's also moved into the wanting to wear it during his nap phase -- all signs to me that he continues to bond with his ear, even 16 months post-activation. I just finished reading Michael Chorost's book "Rebuilt -- How Becoming Part Computer Made Me More Human." And even being a speaking adult who lost his residual hearing and received an implant, his hearing continued to improve three years after implantation. So I'll keep the faith and try to work harder with my pooh bear!

Take care and hugs to the peeps.
Michele

Tuesday, August 2, 2005 11:58 AM CDT

Wow -- I've really slacked this time -- 2 months. We have been unusually busy but I won't make excuses :).

Charlie is growing like a weed. We've managed to leave his hair alone for over three months now, so he has some beautiful red curls coming in. His dad is just itching to get at it with the scissors, but so far I am holding him off!

His progress with his implant at times seems to be at a snail's pace, but continues nonetheless. It's definitely been a lot slower than I anticipated, but I am confident in his ability to hear as he follows simple instructions quite well now. Verbally, he's still only using about 5 or 6 words regularly, but he's definitely making more structured vocalizations, more consonant sounds -- /p/, /y/, /d/, /b/, an occasional /t/ and /c/. I try to remember that even hearing kids have speech delays (thank you Susan :)), so I really need to not torture over it so much. But you all know it's hard. The odd thing is that he's trying to sing more often than trying to talk. He responds to music with great excitement. It's beautiful to watch, so I often start wondering about the whole right-brain left-brain thing and if there's any possibility that that could affect his speech? Hmm...only time will tell.

The language delay is obviously linked to him not being age-appropriate cognitively, so we have undergone testing at the school board and so we will be sending him to a public preschool program for kids with varying types of delays. Of course I feel a little sick that we don't have an auditory/oral option for him, but honestly I don't think he's ready for a mainstreamed pre-school either. I feel the noise levels would be problematic for him and the individual attention he needs wouldn't be there. So we've opted to participate in this program for a year to see how he does. I think going from a home daycare to a more structured environment will do him good. The student to teacher ratio is max 8:2, he'll receive speech therapy as a group 2x per week and individually, minimum 2x per week. Our mega AVT has been sooooo helpful in helping us make sure that we get specific listening goals written into his IEP. I visited the classroom that he will be attending and was really impressed with the teacher and how language-intense the classroom time was. I think the hardest part for Mom will be putting him on the BUS....Yikes...I can see it now, me tethered to the side of the bus on a skateboard -- If they won't let me on I'll hitch a ride. :)

More good news. We see Dr. Strasnick on 9/1 to discuss bilateral implantation. I'm sooo looking forward to that appointment and hoping we'll be able to go with # 2 this fall sometime! Keep your fingers crossed! Well, better get back to work. Thanks for being patient. I'll try not to take so long next time, or write so much. Haha.

Hugs to all -- Michele

Tuesday, May 24, 2005 5:51 AM CDT

Wow, it's been another month. I seem to do a photo update one month, then a journal the next. Charlie is definitely keeping us busy! He has a seemingly limitless amount of energy and will run, climb and explore until he tires himself out, at which point he retires to resting his head on the floor and still pushing his trains back and forth.

His hearing birthday was on the 5th, so we've been through another round of various follow-up appointments -- a new bumped up map which he seems to enjoy. I love the week after mapping, the "wait...I hear something new" face is the best. Kate, our audiologist, gave us the go-ahead to make an appointment with Dr. Strasnick to discuss bilateral. So we'll meet with him in August. We also made an appt. to have the scar of his incision looked at. He has a big nickel sized "bump" right above his ear that looks like the incision line in that spot has continued to stretch over the past year and it's continued to get a little bigger, so I thought it should be looked at. I hope it's just scar tissue. Being a rambunctious boy I just worry that he'll take a ball to that spot or do exactly what he did the other day and clip himself on that side of his head with an open door. I know, I'm probably just hovering a bit, but I'd rather be sure.

We've also had our evaluation with the school board. The battery of tests and such put him at a developmental age of about 19 months. And surprisingly, his speech and language scores were actually higher than his cognitive, based on the cognitive skills being dependent on acquisition of speech and language. So he's still 6 months behind, but 18 months of progress in a year is great by me. Receptively he's much stronger, but he's definitely making progress expressively -- and I think will be one of the boys who holds on and then will show a huge growth spurt. He's now saying addy regularly, is vocalizing regularly for eat, milk, movie, hat, up,c'mon, quack and is trying to say juice. Newer sounds/words are meow, trying to say Brittany, his sister's name, which right now is i/i(n)/i -- sometimes we get the n sometimes not. He's trying to sing Wiggles songs all the time and that has helped motivate him to learn his sh sh sh sound. I know if he can hear those and try to imitate, I'm sure he'll progress in his own good time. He is quite independent and stubborn.

Well I need to get ready for work now! Take care and I'll try to update a little more frequently.
Love to all, Michele

Tuesday, May 24, 2005 5:51 AM CDT

Wednesday, April 20, 2005 9:35 PM CDT

Wow! Over a month. Seems as our little ones hit toddler-ville, we don't have as much time to report, vent or worry. We are doing great, and Charlie is progressing well. He's no speed racer mind you, but he's now saying his own versions of many different things -- newer approximations are eat, daddy, i love you, from the wiggles he's moved on from quack quack quack quack and onto cockadoodledoo. Everything is pretty much vowel sounds unless we get continued repetition, in which case he'll throw out some consonants that really keep me happy until he's ready to put it all together. He's even trying to say his name....aah eee as opposed to daddy which is aa ee, I don't know why this makes sense to me but it really does. we've heard a couple of aah leee, which is why I really feel like he's trying to say his name. Fortunately I recently talked to my cousin with a boy 6 months younger, and she proudly says that he's saying bulldozer, which of course is ooh-oh-uh. Must be a mom thing. hehe.

He had his eval with the school system last week so I guess we'll hear in the next 30 days whether or not he'll qualify for services. I'm trying to explore all options before we make a decision -- that's a new and tortuous decision for me. Well I'm about to fall over, so I'll stop for now and try to update more often -- if I haven't scared everyone off with that kind of goth picture of charlie. haha.

take care all,
love michele

Wednesday, April 20, 2005 9:35 PM CDT

Wednesday, March 16, 2005 3:55 PM CST

Hello all,

Just a quick update. Charlie's doing great. Susan, his AVT was concerned because he seemed to hit a plateau and wasn't really vocalizing much during his weekly session, but I really feel like he's progressing, not very quickly, but that he's doing new and different things all the time. Mama's are getting clearer and he's starting to use it to actually call me from other rooms. Ups are still uhs. Starting to say Yummy which is kind of cute Yowmeh. His biggest jumps are in his imitation of song and dance. He's starting to sing some of his favorite songs. Quack Quack Wiggles song has him trying the w sound, Hushabye Your Bear has him trying to do sh sh which really sounds like a raspy version of the guttural sound he used to make. And his favorite show Hi-5 -- he's trying to say hi five and the word five now has about 10 syllables. He sits there with his mouth open making sounds like he's really trying to phonically figure it out. He'll be two next week and is so big now. We're having all the lovely follow-up appointments this month and next to make sure everything checks out okay. Horseshoe Kidney looks fine -- he had a renal ultrasound yesterday. I'm getting excited about the possibility of bilateral and we'll begin to pursue that in another month or two. Take care and I'll try to post some new pics soon.
Love and peace,
Michele

Tuesday, March 1, 2005 7:57 AM CST

Yikes another month? Toddlers are time bandits, I'm telling you! Still progressing little by little. Babbling continues to get more complex and the words he is saying are getting better, although I'd really love to hear a new one. He seems pretty content with Mama, more, up, hi and bye, oh and Yum now. That would be another new one. The past few weeks however he has been a little more quiet and going through a "taking it all in" phase. He has started watching my mouth very consciously when talking and doing ABCs and he has started singing some of the songs on his favorite tv shows -- he's doing it quietly, like he's trying to figure it out, but he was definitely in time with the theme music for Hi-5 this morning. Richard caught him mimicking a song the other day but he wasn't vocalizing he was just practicing moving his mouth. Hopefully he's putting it all together that mouth + voice = speech. He has also learned the little ma-ma-ma song I was doing with him with the guitar and sings that as a cue for me to get it before bedtime, so I've switched it up to da-da-da so we'll see how long it takes to make the connection.

Oh, we also took him to the circus over the weekend. Think he's still a little young for it. He wanted to climb more than anything and I think it may have been a bit too loud for him, so I adjusted his sensitivity and he did better but still just wanted to run around. I think he had a better time chasing dad in the parking garage on our way out -- we made it a whopping 45 minutes, which is about 30 minutes longer than I thought we would, so I was pleased.

i'll try to update more often as things progress.

Oh -- one more thing -- he said a g sound the other day -- that was a new one.

Take care! Love, Michele

Tuesday, February 1, 2005 4:48 AM CST

Hi there!

Hope everyone's doing well. What happened to January?
Charlie's doing great. Still pretty much stuck on Mama, Up, Hi but is starting to say night night and on occasion attempts banana and milk.

He had his 9 month assessment and receptively tested at 13-15 months and expressively right at a year. We are very proud of what he's done so far and can't wait for the next few months, as his vocalizations seem to get more and more complex every day. I get so anxious for him to put it all together sometimes, but I have to remember to enjoy every minute and let him progress at his own pace because he's growing so fast and will soon be bugging me for car keys and what not.

He's taken quite a liking to my guitar in the past week and we have incorporated playing it into his bedtime Learning to listen session. His imitation of me singing is kind of funny, but I don't care if he shatters glass!

Receptively he's made huge progress. He seems to understand so much now, and on verbal cue pulled the baby and the horse out of a bucket of toys for me the other night. I was very excited about that.

I can't believe he's this old, but I've made an appointment with Virginia Beach Schools for his initial screening to see what programs are available to him. Apparently there are three options for him at 2, although he'll have to start, if he does, in September with the new school year, so he'll be 2 1/2 by then. Not sure how appropriate their programs will be, but I do want to see what's out there before too long.

Well time to get ready. Take care!
Michele

Thursday, January 6, 2005 8:08 PM CST

Happy New Year!

Okay, every time I read my last entry I think..."he's not doing that"...it's really very cyclical. He gets very vocal then clams up for a few days leading me to believe that I'm committing forgery sometimes.

But then, like tonight, I hear something new... was that a nnn nnn for night night? or was that an ah ah ah for I love you? I take them all with great pride! I have noticed that he seems to experiment the most when he's a bit tired, feeling safe and ready to go to bed. I'll have to ask the circle to see if that's the norm. He did give me the double-syllable shout out of Mo-om the other night after he finished his dinner, as in come get me. Not ma ma, but Ma-om. That's progress, right?

Hope everyone is well!
Love, Michele

Tuesday, December 28, 2004 8:20 AM CST

Happy Holidays Everyone!

I hope you all had as much fun as we did. Charlie truly enjoyed spending time with all of our family and was spoiled rotten by all! I don't think he's completely aware of everything going on but he was overwhelmed by all the lights, gifts and the tree has been a constant source of learning the word no. Needless to say, the top half of our tree looked pretty good, and the bottom...well now it's a bit on the Charlie Brown side.

As you can see, he was totally unafraid of Santa and acted like Santa was one of his buds.

Charlie has been continually progressing, perfecting his "mamas," throwing out some "mom"s, a few das and I think he said book the other day, you know, /buh/ no k. He's starting to take an interest in the telephone and has begun to explore the microphone on his little keyboard. Receptively he's doing amazingly well and will walk to the baby gate when we say it's bathtime or bedtime. He'll walk to the kitchen for a banana, and will go to the front door when I say it's time to go. I think he's starting to bond with his implant a little more now too. When it falls off, he's started bringing it to us as opposed to letting it dangle or putting it in his mouth, and in the morning he's started to reach back looking for it.

Sorry it's been so long and I hope you are all having a wonderful season.

Love, Michele and the Crew!

Friday, November 26, 2004 1:14 PM CST

Hi all,

Hope everyone had a nice Thanksgiving. We just returned from vacation in Florida, where we visited my mom. Charlie had the best time riding on my stepdad's pontoon boat, and keeping daily watch over his American flags. He has this strange fascination with flags. He was still a bit young for Disney and conked out after just three hours there. His favorite part of the day was greeting the characters and grabbing at the big bad wolf's tongue. hee hee.

He's been making progress slowly but surely. He's saying mom fairly regularly now, and has just started saying Da, so Richard is elated now too! He said it last night with a mouthful of cookie and it came out perfectly as daddy. Surely a fluke, but I'd like to think not. I'll let you know if we get a repeat.

He seems to have a more keen awareness of sound now and consciously looks for its source. He's also watching my mouth more closely when I'm singing to him or repeating parts of his favorite shows. So hopefully another leap is just around the corner.

I'll post some new pics soon. He's getting very large!
ox michele

Friday, November 26, 2004 1:14 PM CST

Wednesday, November 17, 2004 0:11 AM CST

Goodness! So much time passes now and i have to barter for the time to write and update. I've been packing and now it's 113AM. YIKes. Charlie is mr. steady pants. no obvious words, but a little moer like something every day.

I love him soooooooooooooooooooooo much. write more later!

oxoxoxmichele

Friday, October 29, 2004 8:28 PM CDT

Hello all,

Hope everyone's gearing up for a spooky weekend! We're all exhausted and have been working very hard, Charlie included. He's busy at all times, climbing, dancing and hitting mama in the head! He's been doing a lot of babbling! No really strong "mom"s like the first one, but he has given me some very nice mmmmmms. His vocalizations are getting more complex and he's mimicking us with more accuracy every day. 2 days ago we got an "eow" for meow, ah uh for thank you and aaaooo for i love you, a few oh eees for oatmeal and uh uh uh mmmmmm for up up up wheeeeee. He's still obsessed with the dvds. I can't figure out why he's not as entranced with the same TV shows he watches as he is with his videos. We've been trying to limit his viewing time, but I'll tell you, it's hard not to put it in when the alternative is meltdown. Guess it's time to see what dr. Brazelton says. I think i need another good parenting book. Any suggestions feel free to email me.

Well, mama is very sleepy. We just got home from my aunt's house where Charlie played famously with his little cousins from California. Seeing them play together and how happy he was made me want three more! But seeing them play together also made me happy with my single boy child too!

Happy Halloween everyone!
Love, Michele

Sunday, October 10, 2004 10:13 PM CDT

Wow! I think it's been over a month. Blurriest month of my life. Things at work have been non-stop and between that and trying to make sure Charlie's well taken care of, sometimes I feel so inept. I do my best but when it's really crazy at work, you have to work late, and then you come home and get an hour 1/2 tops to spend with your baby and you think, is it enough? but you know, my mom worked full-time, all the time and I turned out okay (depending on who you talk to) so I probably shouldn't worry so much. But that's my nature.

The good folks at MedEl sent an Engineer/Clinician and another Representative to do a full telemetry on Charlie's internal equipment -- to make sure that his "screaming incidents" weren't anything too serious. We have kind of collectively determined that it's a moisture issue and his coil snacking is working into the coil and/or circuitry inside and either shorting out or causing pops of sound that may be alarming to him. No outbursts in over two weeks, and Claire bumped up his map and he's getting crazy amounts of sound now. He's mimicking songs down to the rhythm and the note -- I just want one little word....it's just around the corner. He's still doing up, this past week with a "p" for progress! this weekend I got an /o/ /ee/ for oatmeal and I got half a mama in the car. It was the best ma I ever heard!

We've had a week of DVD obsession -- Baby Neptune, Baby Mozart, Sesame Street -- Kids Favorite Songs 2 and What's the Name of that Song. non stop.

I'll write more later. He's getting so big and I'm so proud of him, not for anything he's accomplished just for the fact that he's his own little place in the universe. I keep thinking it's still the pregnancy hormones, but there is no greater wonder to me than his smallest gesture, hearing or not!

Wednesday, September 22, 2004 8:55 PM CDT

Wouldn't you know it? The day we go see Susan (our AVT) and tell her I think that Charlie's vocalizations are decreasing over the past two weeks...he talks more than he has in any other session. Makes me crazy! : ) Every week I go in bragging about what he's been saying and singing, and up until today he's like the frog from those classic cartoons. So I often feel I know nothing and should speak when spoken to.

He had another screaming incident. We think we've narrowed it down to what we're assuming is moisture. I'm still hoping for a report from the techs as to what they thought, other than that I must be crazy. Moisture makes sense, as he does constantly chew on the cable/coil connection, pull it apart and floss with the cable and pretend the coil is his very own thin mint. But we had one coil that lasted 3 months and was a mess but worked fine, also with the double magnet.

The best thing EVER... after the incident Monday, I came home and replaced the coil and put it back on. Then he gave me his first initiated and unstolen kiss. I really felt like it was a thank you. Now he's becoming quite the little smoocher. He's also becoming aware of what his implant does, because he's had a lot of fun pulling off the coil, then putting it back on, then clapping. Hopefully this will be the beginning of the end of the snacking.

I was concerned because we've switched out 2 coils in the last 2 wks. and the one before the last two had a double magnet. Well since then we've been using the single-magnet coil and to me it felt like his articulation was down and he wasn't talking as much, although receptively he's seemed okay, maybe a little less alarmed and more aware that he's hearing. Perhaps I'm hovering too much and should just let him be for a month. I keep thinking that and the moment there's a slight problem, I become like a transformer and I go into hyper-analytical mode. I got my virtual hand slapped for telling our rep at MedEl that I had taken the cover off the coil...couldn't help myself. And I wonder why Charlie's so curious about electrical outlets. Sheesh.

Anyhow, he did great today in therapy, he imitated
up up up uh uh uh
quack quack a a a
wheee eeeeeeee
bus bu bu bu bu
car bbbbbbbbbasic raspberry
airplane

receptively he gets better and better each day. he knows mom, dad, no, eat, milk, kiss, ball, shoes, juice, more, bye bye, hi and he knows the sound of his vitamins, the microwave, his leap pad alphabet magnets, the phone, and is still trying itsy bitsy, wheeels on the bus and i was exceptionally proud when he was trying to sing a N.E.R.D. song with me on the way to daycare. Holy canoli, long entry. Thank you for hanging in!

ox michele

Sunday, September 5, 2004 8:27 PM CDT

Wow, Three weeks, this time...I'm such a slacker! : ) I'm not sure if we've been busy with the excitement of everything Charlie is learning or if it's more due to his ever-increasing need to climb, jump and make that "mom, I heard you but I'm not listening" face. Pure mischief. And I love every minute of it. Especially the sleeping minutes. haha just kidding

Charlie is doing really well. I think I'd be happier if he was making more of the learning to listen sounds, but he's making so many other wonderful sound discoveries daily now that I have to check myself and remember that he's only been hearing for 4 months! He's got "up" down (the p is a random gift), he's trying to sing "itsy bitsy spider" for which the lyrics are "ih, ih, ih", he's saying "mmmmm" for mom, "aaa-eee" every once in a while for daddy and a few others -- ow, uh-oh, and the new additions this week:

"ayyyyy" for Yay with clapping, and "nnnnnnnnnnnnnnn" when I put the phone to his mic with the dial-tone. Seems to be developing pretty good pitch (gets that from me ;) We have daily look and listen for the birds outings, and he's starting to respond to when I say "listen" and point to my ear -- which I think is a HUGE step because I feel like it's our first verbal way of getting him to attend to something.

That's it for now! Hope everyone's enjoying the holiday weekend. I keep forgetting I don't have to work tomorrow! WEEEE!!!! OX Michele the mom

Thursday, August 19, 2004 2:55 PM CDT

Woah! Almost two weeks and no entry. We've got Charlie on video making his airplane sound. He's also matching the duration and pitch of my best operatic "la la la la laaaaahs" and will attempt to say "hop hop hop" to the little kangaroo song I made up. And I swear he said "ham" the other night, although I know that sounds too complicated at this stage in the game. I'm noticing that he has a pattern of vocalizing better when there's an accompanying activity or action going on. I wonder if that goes along with the AVT philosophy. Daddy stepped up for this weeks therapy because I had to work, so I'll have to remember to ask Susan that next week. Well, i'll write as things progress. C-ya!

Saturday, August 7, 2004 7:05 AM CDT

I'm getting a little slack with my postings. I guess because progress seems a little slow at times so I wait to get some great things to add to Charlie's hearing account. We have had a great couple of weeks though. He seems to be responding faster and more frequently, as though he's discriminating more meaningful sounds amid the chaos. He turns to his name now, from across the room and when speaking in a normal tone. He's awfully interested in laughing right now and turns to see what's going on everytime someone does it.

At AV Therapy this week he identified and attempted to make the airplane sound, and he tried to say up several times, trying to get me to pick him up. Susan was pleased. Terror of terrors he can climb on the furniture now and reach the doorknobs, so we're discovering a whole new level of babyproofing.

Oh another great one-- last night we were outside and he heard the fighter jets from Oceana flying over and bolted around to find the source of the sound. I picked him up and showed him the lights as they were flying by, and I of course made the airplane sound. I think he really got it. I felt like Patty Duke in that Helen Keller movie for a second. Well I better go before he rips the house to shreds!

Saturday, July 24, 2004 7:15 AM CDT

Hi there,

We're midway through the summer and Charlie continues to progress. He seems to be recognizing more and more on the receptive end. He knows elmo, bottle, no, eat, bye bye and kisses.

Expressively, I'm forcing myself to be patient and remember that he's got a year's worth of catching up to do. But he's trying to say mama. This past week at his auditory verbal therapy, he tried to say moo. REally it was just mmmmmm but thats a start. He babbles more now and we'll hear a random D or B and get all excited because he never even made those sounds by accident before his surgery.

Patience is key. Which we'll need because he's starting to go through a hitting phase too. Scary times.

We also gave him his first haircut this morning, which prompted an emergency visit from Grandma to make sure we hadn't scalped the poor child. I have mixed feelings about it. I wanted to let it get girlishly long, but he was starting to look like a Rockabilly Combover boy. I'll post a new pic as soon as I can. He gets mad when I take his pic now.

Well better get to the laundering. Thanks for reading and take care!

Monday, July 19, 2004 8:05 AM CDT

Hi all,

Not much to report. Charlie's still trying to mimic some of our sounds, but nothing definitive yet. We get a few "uh-ohs," some almost "mama"s and yesterday he copied his dad's evil laugh when I realized that golf had been on tv for over 12 hours! He's definitely recognizing his name now and knows "bye bye" "no" and "kisses".

He's been more of a motor skills boy the past two weeks, he's climbing on and off the couch with confidence and is becoming quite independent on the stairs.

He also pulled his coil off for the first time in a while this morning when I was singing to him on the way to daycare. Guess he's trying to tell me something.

Take care!

Thursday, July 8, 2004 7:42 AM CDT

Hey there everyone!

Just wanted to take a minute to say that we officially got a "frameable" audiogram today. Claire put Charlie and me in the soundbooth yesterday and he was hearing across the board at 20 decibels, except at the highest frequency, which I think he heard at about 25. Richard even took a turn at doing his best monkey sound in the microphone but was taken by stagefright. No Karaoke for him. So we're extremely excited and amazed that our little man is hearing within the normal ranges of speech.

He continues to try to mimic some simple sounds, although it seems to come and go sporadically. The past few days, he seems to be playing with his volume. Screaming and such. He's gone through 2 more cables, and this was interesting... he was a little cranky on Monday, and after he was playing with the volume on the DVD player and on the computer speakers, I checked him and he wasn't getting a signal. No way he could be trying to let us know. Or could he???? Anyway, Claire didn't want to mess with the MAP too much since he's shown such progress, so we're good to go for a couple of months. I'll try to post as things continue to change. Charlie's taken lately to climbing any and everything and is becoming fond of using his fork and is trying to use a cup, although all he does is dump the water on me. Oi!

Friday, June 25, 2004 2:44 PM CDT

Another week flies by and I continue to be amazed and so grateful for Charlie and the way he learns something new everyday. And I'm not just talking about his hearing, I barely have time to write because I'm afraid I might miss some of those faces of exploration.

This week he tried to mimic an ssssssss sound, although his version was all in his throat, but hey, I'm just thinking he heard it! He also did the hand motions for wheels on the bus and has been painting the town red doing the hokey pokey with elmo.

He also had his early intervention assessment and aside from obvious hearing goals, he's at or a few months ahead with cognitive and motor skills.

We're excited to go to Emma's birthday party tomorrow. I see the pictures of when we first met them and I just can't believe it's here and I can't believe it was that long ago! Such is the duality of man. Hee hee. I better go before I break into a poem.

Friday, June 18, 2004 5:12 AM CDT

Happy Friday Everybody!

We've had an awesome two weeks and are very excited about all the baby steps we see every day. They seem really small but when you add them up and look back to a month ago, it's amazing how fast he's progressing. In the past two weeks, he's started imitating us by repeating suprasegmentals, which are pretty much the rhythms and pitch of what we are saying. He doesn't know what it means yet, but it's so nice to know that he's trying already. It really kicked into gear last Saturday while I was changing him and repeating ah ah ah ooh ooh ooh, almost like a monkey sound. I wasn't even paying attention when Richard pointed out that he almost made exactly the same sound.

He's also really taking to music and dancing with his Hokey Pokey Elmo and to the show Hi 5 on TLC. Very cool stuff! And it's really fun because we run into other CI families at CHKD all the time. Well better get back to getting ready for work! Take care.

Thursday, June 3, 2004 4:44 AM CDT

What an amazing week we are having! Tuesday at Charlie's AVT he repeated the car and airplane learning to listen sounds while he and Susan were playing with the matching toys!! I never thought I'd be so excited to hear a raspberry (car sound)! Our luck ran out though, because Charlie soon after fell apart, screaming and sending me to work with boogers all over my shoulder from crying. I think he had a tooth coming in! Poor thing. Then yesterday Claire did another soundbooth test and did an "almost an audiogram" and charted him hearing sounds at 25-30 decibels. That puts him hearing within the normal range of speech! So we left his 3 MAPS the way they were to give him some more time to see what they can do. Claire says that if one of us had that same audiogram, we'd probably be diagnosed with mild hearing loss. It's amazing how far we've come in just a month! I'm very happy for my boy and excited about the prospect of all the wonderful things he'll be hearing soon, except my singing of course, that could send him back to Strasnick asking for a refund! ha.
Take Care!!

Monday, May 31, 2004 12:02 AM CDT

I probably should knock on wood, but we've gone nearly a week with no coil corrosion or outages. We've started separating the coil and cable before putting it in the dry pack and that seems to help. The rubber band trick seems to have cured the pulling the wire from the processor too... so I can only wonder what next little adventure we'll be having! He is responding more every day and it took us a little longer to push him up to 3 this time, but he's there and seems to be pretty comfortable. The interesting thing this weekend was that he seems to be really interested in how our mouths are moving when we talk in front of the mirror. He mimicked richard's repetition of DADADADADA, but without any sound behind it. He's also starting to turn when someone comes in the front door and he's in the other room. So lots of little treats. Looking forward to more and more! Take care and I'll write more soon. Still need to switch out some pics!
oxmichele

Wednesday, May 26, 2004 5:17 AM CDT

Charlie continues to progress. The days seem to be kind of quiet and non-eventful, then one day, he'll seem to make a jump and turn to more sounds and be more aware. We've been working with him a little each day on his learning to listen sounds. He seems to respond most so far to the airplane sound, the bus and the bubbles of course.

We've experienced some corrosion on our coil and the cable leading to it, not sure if that's normal, but we got a replacement to be safe. Then the following day, one of his cables just stopped working, or rather was working intermittently. He would scream when it stopped. I'm wondering if there's some unpleasant sound that he's hearing when it's on the blink. I've tried a rubber band technique to ease some of the tension on the connection between the cable and the processor. Seems to be helping, because we haven't had to troubleshoot that in two days. Vacation! haha

Time to start the day! Take care!

Monday, May 24, 2004 7:59 AM CDT

Another week has passed and i think this week was official learn the equipment week. Charlie was eating the coil, the wire, pulling it from the processor. We had corrosion buildup in both the coil and the wire too. So it was a week full of random outages and Charlie screaming. I found a way to help with the wire pulling (rubber band)...now if only I could figure out a way to keep the coil connected to the wire. I actually tried using one of the latex hearing aid covers, but I was concerned that it would interfere with his reception in some way. That would be a little golden gem of information!

He's starting to mimic a couple of sounds I've been repeating and he continues to turn to different sounds as well, i.e. the door when one of us comes in and closes it, etc. He's also started dancing to High Five, one of his favorite shows on TLC. Better get to work now! Take care everyone!

Sunday, May 16, 2004 9:29 PM CDT

Cool stuff this weekend. Charlie walked up to Richard fussing and about 10 minutes later he noticed that his battery light was blinking! He also made an "eeeeee" sound, that's new, as well as the multi-pitched raspberries. And twice this weekend he pulled his coil off his cord and came to find us, his hand outstretched to give it to us. I really think he's starting to understand what it does. So happy!

Our first AVT appt is in the AM, shoot, need to go find a video tape! I'll post more tomorrow.TTFN

Wednesday, May 12, 2004 8:01 PM CDT

How exciting to make progress. Charlie reinforced his status as the ladies man, attracting the attention of visiting Operation Smile doctors from Portugal. We put him in the sound booth where Claire thought she did get some genuine reactions to tones at 35dB, which is within the range of normal speech (I think? I need to get my little piano chart to see what picture he's hearing : ) )

He reacted very patiently and seemed to almost anticipate the sound and then the reward of the jammin' Buddy Rich Bear on the right and the Ringo Starr Elephant on the left. I sensed that it's still a little early for definitive reactions and results, but we were both ecstatic to see him turning at all.

So, Claire put his number 3 setting as his number 1 setting and gave him 2 stronger maps to work up to over the next 3 weeks. We did however drive all the way home and make it to bedtime on setting #3. Don't want to get too greedy though, to make sure he has enough time to adjust and appreciate all the new things that must be going on in his gorgeous noggin!

We decided on going with the Loss, Theft, Accidental Damage Warranty/Insurance, beings he is of the male persuasion and could eat, flush or destroy any of his components at any time. Better safe than sorry!

Well better go, Richard is hogging the electronic Yahtzee! Another battle to endure! Love, Michele

Tuesday, May 11, 2004 9:11 AM CDT

Hey there,

Hope everyone had a great mother�s day! We took Charlie out to Henley�s Farm in Pungo and went strawberry pickin�. Came home with 15 pounds of strawberries and one red and sticky-faced boy. He walked up and down the rows like a pro, eating sticks and berries all the way. Fiber is good right? Of course I forgot the camera (probably the first time)!

Everything seems to be pointing in the direction of progress. I�m very excited because every day Charlie seems to be responding to something differently or making a new sound or inflection. Sometimes I think I�m imagining it, but as long as it�s even something slightly different I see that as a positive. He�s also pulling off his coil in the car sometimes, and sometimes when he�s eating, but hey, he�s a boy with a built in cord. And cord=toy right? The other day I caught him lightly lifting the coil off his head and putting it back, then kind of rubbing it on his head. I wonder if he�s figuring out what it does? It�s fun to watch him though. His raspberries are getting louder, and he�s turning to our voices and even looked around the corner when the doorbell rang. So we�re very excited and happy. The other day I was doing a little 2 syllable sing song version of the word �more� and after doing it four or so times I swear I think he tried to imitate my inflection, but Richard thinks that one�s a stretch. I don�t know though�sounded good to me!

We go see Claire tomorrow, so I�ll try to post again tomorrow. I hope she does a sound booth test. Might be too soon though. We�ll see. Take care!

Tuesday, May 4, 2004 3:55 PM CDT

It was a very large day for Charlie Jerome! It's just after five and he's napping heavily -- not his normal naptime but we kept him going two hours past his bedtime so he gets a little 'Hearing Birthday' siesta treat today.

Richard, Grandma Barbara, Sissy Brittany and I got to CHKD just before 1:00 and managed to make it in time for a CI Posse Reunion. Madalyn, Miss Emma and Pierce all happened to be there seeing Susan and Claire at the same time. I think I've mentioned Claire, Audiologista Fabulosa (new business card pending hee hee). Susan Adam is our Auditory Verbal Therapist. Also amazing. She has called me on several occasions just to check on Charlie. There's a level of warmth and involvement that emanates from everyone there that makes me feel that Charlie is truly blessed. Seeing them all there right before his hookup had me fighting kleenex mode. I took some pics of all of them (at least tried to, I don't know how olan mills does it).

Once we got hooked up, smooth sailing....I was holding Charlie so I didn't really get to see his face, but I just watched the video and to me it looks like Claire did exactly what she said she would, start out with a really low level, (so low we didn't see anything), but she would turn it back off and he'd make a motion back to look at her. Seemed to me that he knew something was going on because he knew she was the ringleader!! We went back and forth several times until she hit one setting where he seemed to respond to our voices.

I was doing a 'buh buh buh' and he started blinking in response. This is the section of the video that will make it to press. I'll skip the boring parts, although I could sit and watch the whole thing over and over as long as we can get Spielberg to Dreamworks me out of the video. Perhaps there is enough cash in the world for you all to think, wow...Charlie's mom looks just like Charlize Theron, uncanny resemblance, maybe he was named after her. Sorry...unnecessary wandering.

Some really sweet flirting went on between Charlie and his sister and grandmother. This is why people move from still photography to video I suppose. I'm very happy. Charlie was totally cool almost all the way home in his carseat and seems to be stirring now so I should probably close. I'll post and/or change pics soon. And I thank everyone again, for everything. And my boy thanks you. Can't wait to see what's next!

OX

Wednesday, April 28, 2004 8:51 AM CDT

The anticipation is building as we move into the final week before Charlie's hearing birthday. We had an appointment yesterday to learn how to assemble all of the equipment. Our friend and audiologist Claire likes to go over all of the operational information the week before so that we're not overwhelmed on the day of activation. The briefcase of Medel components was quite impressive. I like to think that my boy Charlie is a g-man now, as he's one of only a select few 13-month olds with an attache case.

Seriously, the kit came complete with two processors so that he'll never be without one should the other malfunction. There is also an array of accesories for different wearing options, cords for portable radios and cd players and different battery setups that he can grow into if he so desires. It even came with a set of adapters that will fit plugs anywhere in the world. So when we're ready for our world cruise on the QM2 we'll be set! haha That would be after he makes the PGA Tour of course and can send us!

We also ran into one of Charlie's CI friends, Pierce, who was implanted in January. It is going to be so much fun to see the kids grow up together. We have been so lucky to live in an area where the CI families have networked in such a way that I really have not felt alone at all, like I did when we first found out about his hearing loss. The support is amazing. Between the families we've met and the people I've met online, I feel like I have an extended family.

He's doing very well. His incision continues to heal, although he has these little loopy white stitches peeking out that we have to trim back. I told Claire I just thought he was growing eyes like a potato. They don't seem to bother him, they just look a little odd.

I have been accumulating my notes from the past year and hope to post a timeline of sorts so that will serve as a reference journal entry for parents who are just starting out on the path that we have chosen for the Charles. Sometimes I think the path chose us.

Take care!

Thursday, April 15, 2004 5:54 AM CDT

Ten days out now. Today we take Charlie to get his stitches taken out. He's completely back to his old self now, his appetite is back and he's running all over the place. I'm greatly looking forward to his activation on May 4. His incision is starting to look great! Most of the swelling is gone and his dumbo ear is already going away.

Grandpa Charlie came over for dinner the other night and brought him a cute little golf outfit that he got while in Myrtle Beach. I've been instructed by my brother that he needs some black and white saddle oxfords/golf shoes to wear with it. Richard was very excited yesterday that he stood and held the golf club. Preparing for retirement, you know... : )

Monday, April 12, 2004 4:08 PM CDT

The medication yukkies turned into a stomach bug, a fever, two top molars coming in and a double ear infection. Needless to say it was a long, long weekend. We ended up at the pediatrician's office and they gave him a third round of antibiotics.

The good news...his incision looks lovely, his fever broke yesterday afternoon and today he's back to howling at Elmo and a new activity, flirting for grown-up food. He's losing interest in baby food fast. It was painful to see him hurting over the weekend. I guess I really took it for granted how happy and healthy he generally is. I didn't so much mind the cuddling though.

He doesn't really mess with the incision too much which surprised me. I think he's diverted by his ongoing battle with cradle cap. haha. I was bummed because we had to miss an Easter Egg Hunt at his CI friend Ryan's house. But we had a lovely Easter dinner and the Easter Bunny brought Charlie a basket with the Dr. Seuss book,"Mr. Brown Can Moo, Can You?" It's about making different sounds. I thought the Bunny did a good job picking that one. Can't wait to read it with him!!! 3 weeks and counting!

Take care and I'm trying to find a page to link more of Charlie's post surgery pics to this page. Thanks!

Friday, April 9, 2004 8:53 PM CDT

We've taken a few days to recoup and go through the medication yukkies. He hasn't had much of an appetite, so I'm hoping it's from an anaesthesia/medication overload, poor little guy. Or maybe it's because he hasn't been very hungry and has only really been drinking his bottle.

Despite him changing clothes today more times than Cher, he's doing very well, playing as usual and taking his usual stances at the front door and the dining room table. He lost his confidence a little with his walking but that seems to be coming back, and weakens when he gets a little tired. Actually today was the first time he "danced" with his sister and me.

The swelling around his incision seems to be going down a bit now and his ear is sticking out a little, but I've been assured that this resolves itself. I kind of like the seven dwarves look myself. : )

Retrospectively, I view Charlie's surgery day as one of the most profoundly moving days of my life. I never once doubted our decision. But all the confidence in the world can never compete with the natural fear that comes with motherhood. But more powerful than the fear is the desire to give your child every opportunity.

Thanks again for all the prayers and thoughts and good wishes.

OX Michele

Tuesday, April 6, 2004 1:37 PM CDT

What an amazingly full 36 hours the baby boo has had!! We've been home since about 830 A.M. and he's now taking one of the longest naps ever. I keep going upstairs every fifteen minutes to make sure he's okay. His surgery went beautifully! I think the hardest part of it was that it got started a little late and he was a hungry hungry boy, but he showed great patience and took his morning nap and played a bit between hunger fits and at 12:30 yesterday they took him back to begin.

We got phonecalls in the waiting room on the hour to keep us updated. We had an entire corner of the waiting area full of family, I felt amazingly blessed to have everyone give up the day to spend with us. I clipped my coupons and got more and more restless as the hours passed. At 545 pm, the audiologist Kate came out and told us that Dr. Strasnick was in the final stage of a successful surgery, that he got a full insertion and would be out when he was finished. Charlied did beautifully. That's when I broke down and felt a year's worth of planning, phonecalls, appointments, the love of my family and friends and all the people who helped get us to this day. I don't mean to make it sound like an academy awards speech but I felt it all in a rush that was unlike any other. Very overwhelming!

The only difficulty during surgery was that Charlie's facial nerve was in an atypical position and located right over the place where Dr. Strasnick needed to drill for the insertion. He said that made it hard work to get in there but it was a good case. I can't even begin to imagine the patience and precision of skill to do what these amazing surgeons do. I am again, grateful and overwhelmed.

He woke up in recovery, chugged 2 bottles of pedialyte in a matter of minutes, and was ready for a bottle by the time we got up to his room. He woke pretty much every hour, hour and a half, finally getting his longest stretch of sleep from 3 to 6:30 am, when we both got up and he was ready to sit up, have a bottle and a delicious wagon wheel breakfast! I knew he was feeling better when I saw this tired little swollen-faced smile when I gave him his al-igator.

They changed his dressings and soon after we were home bound, 24 hours after we entered the building. Amazing stuff. Charlie is waking up now so I better close for now! Thanks to everyone who sent prayers and phone calls! They worked and we have so much yet to look forward to.

Tuesday, April 6, 2004 1:37 PM CDT

Saturday, April 3, 2004 9:33 PM CST

I've been maniacally reorganizing things and trying to "clean" all day. Really I keep moving things around, thinking I'm being productive. I guess it's my coping mechanism. I really shouldn't worry so much, because I have complete and beyond total confidence in everyone we've ever come near at CHKD. And I believe in the opportunity we're giving Charlie, but I guess you still have that mom thing, that connection that makes his skin my skin, his pain my pain, his laughter mine as well.

I used to think it was unusually amazing when my friend Lesa would tell me that when she kissed her daughter's forehead she felt like she was kissing her own skin, but now I completely know that feeling and feel that it's a mother's blessing. I always wonder if I'm less than a mom because for me, when I kiss Charlie's forehead that it feels like I'm kissing my leg when it's asleep, which I have done on occasion.

I ended up giving him his hospital gift. Good thing too. It was a remote control Brum and made much more noise than any hospital would allow.

Enough of my rambling.

Charlie was born on March 24, 2003 with no complications other than he was throwing poker parties with his buddies and did not want to come out. I was due March 10 and was induced three times before he arrived. I guess good things do come in threes, because he popped out doing cartwheels and with a head full of not blonde, but red, red hair.

I tried my best to believe that the newborn infant hearing screening was inaccurate due to user error, but an ABR (Auditory Brainstem Response) performed at 5 wks old proved he was hearing impaired. Bilateral Profound Sensorineural Hearing Loss. I exhausted myself looking for a natural self-correction for this combination of words, but the truth soon set in, and all I could think of, over and over and over, was that he wouldn't be able to hear birds. I'm no great birdlover, but aside from I love you this was what kept running through my mind.

Friday, April 2, 2004 1:54 PM CST

Just the weekend stands between us and our adventure!! Today I found out that his surgery will be at 9:45 a.m. on mOnday, just in case you want to set that prayer alarm clock. All will be most appreciated.

At lunch today I found a little (well not so little) age-inappropriate toy to give him in the hospital. I have the feeling Richard will like it more than Charlie! Well, better get back to work. Hope you don't get bored reading these. I'll try to fill in his history soon. I've recently discovered some interesting family history of hearing loss that I need to research a little more. Okay. Bye for now! Happy Friday!

Wednesday, March 31, 2004 12:25 AM CST

Hi everybody. Just having a little lunch, getting this page set up. Charlie's implant surgery is just four days away now and I'm anxious, excited and full of nervous energy. Charlie will receive his implant on Monday, April 5th. I'll fill in details as we go along.

Click here to go back to the main page.

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