Thursday, November 27, 2008

Aiden Hears His Daddy

I remember when teaching Aiden's older siblings to talk, wave bye-bye, dance, etc., we would show them time and time again and before you knew it, they were saying "da-da" or "ba-ba" or bopping their head like we did to the music. All of this happened before they were a year old, or shortly after, and as all parents, it melted our hearts. We expected this to happen and it did.

With a deaf or hard of hearing baby it takes much, much, much more work and consistent repetition of EVERYTHING you do. Consistent repetition just hoping, praying, waiting for the day that they imitate you and associate the sound you make over and over and over again with the experience. EVERY moment becomes a teachable one and repetition is key.

For example, everytime I pick Aiden up, I say to him, "Up, up, up" pitching my voice a little higher with each "up". Everytime I feed Aiden, I use the sounds mmmmm, and ahhhhh, and yum, yum, yum. When I hear daddy call "Aaaaiden", I point to my ear and say, "I hear daddy." and when I am about to talk to Aiden about a sound or event, I point to my ear and say, "Aiden, listen".

We have to teach him to listen. We have to teach him what sound is, what each sound means. With his hearing aids and a lot of hard work, Aiden has done an amazing job at learning to listen. This does not mean his hearing is getting "better", it means he is becoming aware of sound and starting to develop sound-object awareness. He is still a cochlear implant candidate and we are still working hard to get there. This shows us though, that as I've said over and over again, Aiden loves to listen.

A part of our day that is consistent, and that Aiden's daddy and I have turned into a teachable moment, is when Aiden's daddy comes home for lunch and home from work. We do the same thing, everyday. So as I hear his daddy unlocking the door, I prepare Aiden to listen.

And here is Aiden hearing his daddy. (Make sure you turn off the music on the right first).

Forever Thankful

I have been thinking of all I am thankful for, for quite some time. And I am thankful for SO much. But I can't help but think of this time last year. I look back and I was 6 months pregnant, taking care of my father, who at the young age of 55, had severe dementia, neither of us having any clue of what was to come. All I knew and cared about at that time was that my daddy was dying. It was hard to even fathom a new little life growing inside of me.

My daddy passed away that January. Just two months shy of when his third grandbaby was born. My dad and I put up a good fight. We fought hard for his health, for his care, for who he was. After he died, it was still so hard to enjoy any pregnancy I had left. I wanted him to know this baby inside me, I wanted him to hold his grandbaby, and love him as much as he did my other two. I wanted this baby to know the awesome grandpa that he was and it tore me up to think he never would.

I'm struggling this holiday, HARD, but I know deep inside that I am most thankful for what I learned from my dad throughout my life as well as on my dad's journey and how it has helped me tremendously with my journey in raising a deaf baby.

I am thankful my dad taught me to never give up. To always give it 100 percent no matter if I was managing a whole corporation or scrubbing a bathroom floor. If it was something that needed to get done, it better be done damn well!

I am thankful for my dad telling me he loved me EVERY SINGLE DAY. EVERY TIME HE SAW ME. ALWAYS. In fact, I found this on my cell phone just a few months AFTER he passed away, and the DAY AFTER having this horrible, good for nothing bad day that every mom of a deaf baby should and can have. We deserve it. and guess what ... IT'S OKAY TO HAVE THESE!

I am thankful for the perseverance and endurance and hard headedness that my dad instilled in me (well, my mom actually had a lot to do with this too *smile*). If it wasn't for him, I would've believed it when they told me my baby wouldn't benefit from hearing aids, but "to wear them anyway". But I didn't ... because I knew we would overcome. AND WE DID ... here, and here, and here and HERE.

I am thankful for the fact that my father taught me that doing good, wasn't "good" enough. He taught me to go above and beyond. To not only be good, but to be GREAT. And because of this, I found this person, and this person, and this person to become part of our "A" team for Aiden, a team I knew had the gumption I had. They are the main reason we are where we are today (I am still in the process of writing up a HUGE thank you to our Texas team ... they are and will always be the ONES I will never forget!). AND to this day, I continue to research EVERYTHING and ANYTHING to do with deafness, and this TEAM continues to feed me!

I am thankful for my dad's laughter and sense of humor. As a kid, I remember my dad being gone a lot because of the military, but one thing I remember even more, is my dad's smile and always making people laugh. He was always the comedian ... people loved my father. Up until his last days, he would still give us all a funny look, just to make us laugh. It is so important to smile and keep faith and happiness in your heart through any hard time, it just makes it that much easier.

So thank you dad, for all you have taught me, throughout my life, but even more so, in our last year together. You trusted me and continued to love me when I hated myself for what I had to do to take care of you. You didn't give up ... just as you always taught me. You continued to have faith in me when I had no faith in myself to take the necessary steps to take care of you. You smiled at me every time I came to see you when all I wanted to do was crawl in your lap and cry ... and no matter what, you always told me you loved me and to take care of your grand babies. I am dad ... I am, and because of all you have taught me, I am thankful!

Wednesday, November 19, 2008

So we Hear, He is "The Man"

When I was a child my dad would chase us kids around, as we laughed hysterically, doing all we could for him not to catch us, for when he did, he'd tickle us until we answered his question, "Who's the Man? Who's the Man?" and inevetibly, we'd scream out in pure laughter, "YOU ARE DAD! YOU ARE!"

He continued this with his grandkids, who absolutely L-O-V-E-D this game. In fact, my oldest son Ryan, wrote on the card for the flowers at his grandpa's funeral ... "Dear Grandpa, You will always be "The Man". I Love you." Your Partner, Ryan.

Move over dad ... because after the last couple of weeks in Maryland ... I keep hearing about "The Man" who just so happens to be the doctor & surgeon on Aiden's new CI team.

Every appointment we go to, people comment about how we are in such great hands at Johns Hopkins. How great of a team we will have and how we've come to the right place. They comment how the whole cochlear implant team is just phenomenal. Then they ask, "Who is your surgeon?" When we tell whom ever it may be asking, every response is very similar ... "Well not only are you in good hands, but you have "THE MAN!"

We met with "THE MAN" this past Monday. I'm lucky to say he is part of our team. He told me what every mom of a deaf/hoh baby constantly wonders, constantly questions, day in and day out,

"What caused my baby's hearing loss? Why is MY baby deaf?"

He told me, after looking at my baby's MRI, why our binky boy has a hearing loss. He told me the answer I've been searching for, all within 10 minutes of meeting him. He is "The Man". And although now I have more questions and even more to look into, at least I am now aware of why my baby boy cannot hear.

Aiden has Enlarged Vestibular Aqueduct Syndrome OR EVAS/LVAS. Go here to read more about it.

We're still looking into what all this means and I will blog more about it later. We still have a lot of questions. What we do know though is that our goals for Aiden are still the same. He will still greatly benefit from a cochlear implant and we will continue to work our butts off to make sure he is successful, before and after implantation.

And although we are SO excited to have "The Man" as Aiden's surgeon, we know and will never forget, who is truely "THE MAN" ... my daddy a.k.a. Grandpa Bob.

Tuesday, November 18, 2008

Merry Christmas to ME!

Check out this great item I just bought myself on (ask my husband or girlfriends .... I RARELY do this!) I know ... this sounds selfish so close to Christmas, but I've been wanting one of these and I finally broke down and hit "Purchase Now" (you'll never guess how many times I was at that point and hit cancel). Both of our AVT's from Texas have one that they love and they're just perfect for on the go recording! I record and record and record Aiden on our camcorder, but can never figure out how to download it! This one you just plug and load! I can't wait to get it and post my first Aiden videos! YIPPEEE!

Thursday, November 13, 2008

Better Results in the Soundbooth ... AGAIN

I know this should be so exciting to me, and believe me, it is. We had a full day at Johns Hopkins today, starting with our psychological and ending with what I thought was just going to be a choose your implant device discussion. Well, they started with another sound booth ... which I'm always glad to walk into, but then threw our decision for "simultaneous bilateral implants before 12 months" off a bit.

Here is his audiogram and then next to that the speech banana, which I explained when Aiden got his first soundbooth test. At this time he was just over three months old and showed responses with his hearing aids at 75db and I was like my daughter in a candy store. I couldn't contain myself that my baby heard something! That was 5 months ago. So to think now that he is hearing sounds at 45 to 50 db and definitely hears some of what his mommy says to him is just UNBELIEVABLE! From 75db at 3 months to 45 db at 7 months. Actually, from being told he "probably wouldn't get any benefit from hearing aids" to learning to listen like no other!



Okay ... to explain his audiogram for family & friends ... the left side shows decibels (how loud something is ... a whisper is at around 20 db and normal conversation levels around 45 to 50 db). The bottom axis shows the frequency level ... the more energy it takes to make a sound, the higher the frequency ... with deaf/hard-of-hearing people it is typically harder to hear high frequency sounds than lower).

Okay ... so look at Aiden's audiogram, the "S"s show his "Binaural" responses - that is with both hearing aids on - he was hearing between 45db and 50 db from frequencies between 500 to 4,000. This includes normal conversational levels.

Then, the O's and X's show his responses without hearing aids ... O's show his right ear responses and the X's show his left ear responses ... which, as you can see, both ears are pretty much the same from 65-70 db at lower frequencies and then drops to 75 to 80db at the higher frequencies. So without his aids, he could possible hear a dog barking or lawn mover.

All of these responses are to sounds though that he would probably hear only about 50 percent of the time. Think about it, as normal hearing people, we can make out what we don't hear based on everything we do hear ... for hard of hearing/deaf people it is so much harder to do this ... it's harder to "fill in those blanks".

Now look at the speech banana next to his audiogram. This shows what a person can hear at different db's and frequencies. So you can see that even with Aiden hearing with aids at 45 to 50db, he's still missing out on hearing (and therefore speaking and responding to) the important sounds of speech, such as the /p/, /k/, /h/, /g/, /th/, /s/, /f/, /z/, /b/, /d/, etc.

So, is he hearing somethings? Definitely. Is he hearing all he needs to acquire ALL sounds of speech? NO. Is he hearing enough to only need one implant or maybe, just possibly maybe, only hearing aids ... still checking this out. My gut still wants at least one cochlear implant. My big question now truly is will he be just as successful with one than he would be with two?

Honestly, truly, I wish he was just deaf OR could hear enough to know he just needed hearing aids. Seriously, wouldn't it just make it all that much easier?!? Don't get me wrong, I'm on cloud nine that my binky boy is hearing as well as he is. He's moved up to the "moderate to severe" hearing loss category and is on his way to being successful. He wants to listen. He loves to hear. He continues to use new sounds every week (we were so excited to hear /r/, /m/, and /b/ from his loud mouth this week!) He will succeed. He already shows it.

Tuesday, November 11, 2008

Another Day, Another Appointment

All these appointments we have the next couple of weeks are definitely good, actually they're great ... they drive me crazy, but I know there's a means to an end and it brings us that much closer to Aiden hearing!

So here's what is going on this week:

  • Monday - Yesterday, ECI came out, except here they are called ITP (Infant-Toddler Program) up to the age of 3, and are then called ECI (Early Childhood Intervention) from 3 on. Anyway, Aiden's new TOD (Teacher of Deaf) is amazing! We clicked right away and she's right on path with our goals for Aiden! She talked to me about all the possibilities for Aiden in the state, what our expectations are for him, what this program will provide him, and how she will advocate with me for anything I believe as his parent, that he needs! We met and talked and laughed for two hours. We're going to have fun together!

  • Tuesday - Today was a lax day, Aiden's dad had his first government holiday so we took Aiden shopping at BabiesRUs to look for a new stroller. Are the MacLaren's really THAT GREAT?? Seriously?!?
  • Wednesday - Tomorrow Aiden and I get to venture out on a new trail to the Columbia area where we will meet with and interview an Auditory Verbal Therapist. Now, we left THE BEST in Texas, so it's going to be VERY HARD to measure up to what we've come from. BUT, not only was this person recommended by one of my AVT's in Texas, but is also known and recommended by our new audiologist AND our new TOD! BONUS!

  • Thursday is a full day of appointments up at Johns Hopkins. First we have to go in for a (get this) TWO HOUR psychological eval ... don't ask 'cause I have no clue. I think it's to make sure Aiden's daddy and I don't have these crazy expectations or feelings. We know our son is deaf, we know he is going to do AMAZING with CI's because we know WE are going to get the help needed and work VERY HARD with him to make him succeed! See, that only took all of 15 seconds! : ) After our psych eval, we meet with Aiden's audiologist for D-day ... to select THE DEVICE! This is a whole other blog I can't even get into right now.

  • Oh yeah ... and then Thursday night we have a CI support group meeting that takes place in the county we live in! Our TOD told me about it (along with providing me at least 3 names and numbers of people in my immediate area whose kids have recently gotten CI's or whose mommy's use the AVT we're talking to tomorrow!).

  • Friday ... Aiden and mommy chill and have fun day. PERIOD!
Then, next Monday we meet Aiden's surgeon. At this meeting we're going to talk to him about simultaneous implants and getting the implants before he is 12 months. Hell, my chunky monkey is already over 20 lbs at 7 1/2 months, so he's ready! I cannot believe we're to this point! Where has the time gone?!? My eyes tear up just thinking about it!

Other than that, we're all still having fun (minus the fact that I'm dying to get out for dinner & wine with girlfriends)! Ryan told me last night, that although he misses his friends, he really loves it here. Kailyn had a field trip today to the Baltimore Aquarium which she said was "pretty neat". This past weekend we went and checked out the Baltimore Harbor and took a walk through some beautiful nature trails. (And NO mom, I promise, I don't walk these paths alone!)

To close, here are some pics from our weekend ... my kids have NEVER stomped through fall leaves like this before (I think I was more excited than they were)!

Friday, November 7, 2008

Great Change of Scenery

Yesterday, Aiden and I took our first neighborhood walk here in Maryland.

This was our scenery ...

I'm in heaven.

Last weekend we explored the Annapolis area. Navy was playing Temple. The city was so alive. Naval Academy cadets walked proudly in their uniforms. History all around - with the cobblestone roads, buildings from the 1700's, sailboats all docked at the bay, people riding bikes, eating ice cream, drinking cold beers on the patios of old world taverns ... it was beautiful. I walked with that "proud to be an American" feeling. I can tell this will be a place we visit frequently. (forgot my camera ... these are cell phone pics).

We're all adjusting pretty well. I was very emotional at first, watching over half of our belongings put into storage as we moved the rest into a two bedroom apt. Big adjustment from nearly 2,800 sq. ft of living space to just over 1,000 (less to clean right?!). The living arrangement is, let's just say, "comfy & cozy" (and temporary)! The cost of living here is crazy too. With me not working right now (to take care of Aiden's needs), we're really learning how to cut back.

Ryan and Kailyn haven't complained once about being "roomies"; in fact they haven't complained once about anything they're experiencing. They're such troopers! Their first week of school was a success and they're both loving their classes. As a mom, I was more nervous than they were, but they're both very outgoing, and everything went fine. Ryan's only complaint is that they don't start athletics here until high school and that the classes are "too easy" ... I told my brain child to give it time.

It feels great to be back up north. I can't express this enough!

It feels great knowing we can jump in the car with the kids and ALWAYS have something to do.

It feels great knowing we'll have four seasons again ... a.k.a. TREMENDOUS LANGUAGE OPPORTUNITIES!

It feels great breathing in this fresh, crisp, fall air and listening to the leaves fall from trees and crumble under my feet.

It feels great telling my children about all the history of the area and seeing their excitement to learn all about it (well, Ryan's excited anyway ... you know, he WILL run for president one day ... remember his name!)

It feels great knowing we're only 4 to 6 hours from family vs. the 24 plus hours!

It feels great knowing we're well on our way to getting our binky boy's cochlear implants at one of the best hospitals in our nation!

It feels great knowing of all the wonderful resources available in the area for Aiden ... in fact I'm looking into a parent-infant class at a school that has a phenomenal oral/deaf program and that was recommended by many mommies AND Miss Helen & Miss Becky, both of which I have a lot of respect (and Aiden's Texas AVTs).

It feels great not feeling so STRESSED. I see it gone from my husband's face and my whole body feels relief.

Us girl's miss our time with our girlfriends (oh how I do miss my Thursday night girlfriend's night out!), the boys miss their pig hunting (yes, I said pig hunting - it was Texas), we're cutting coupons, eating at home instead of out, playing board games, exploring and finding things to do that don't cost much; but the excitement of starting a new adventure, in a completely different part of the country with so much to offer, has been just amazing!