Thursday, November 27, 2008
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).
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
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
Thursday, November 13, 2008
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).
Tuesday, November 11, 2008
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!
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
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!