Sunday, December 28, 2008
Saturday, December 27, 2008
What seemed like would never, ever get here, is right around the corner. We have worked so hard this past year in learning, teaching, practicing, researching, doing all we can to teach Aiden to learn to listen. Since finding out about Aiden's deafness, I have done so much to educate family and friends about Aiden's world. I have prepared them for what is to come, by sharing all I have learned, stories from other families with a deaf/hoh child(ren), what the surgery will entail, activation, having to teach Aiden to listen etc. etc. etc. But somewhere in between all this, I don't know if I've prepared myself; because now that it's almost here, I go from completely ecstatic to terrified all in one breath.
It seems so surreal. It feels like just yesterday they told me, "It's probably just fluid." It seems like just yesterday that everytime I looked at my baby, I'd cry, thinking how he couldn't hear his mommy's voice. I don't think too much about Aiden "being deaf" anymore. I talk to him all day like he can hear me. I work with him all day teaching him to listen. I try very hard not to let his deafness define him. We work very hard with his learning to listen and I commend my little guy for how far he's come. With his hearing aids, he turns to noises, he turns his head to 5 out of the 6 Ling Sounds (ahh, mmm, ooo, eee, shhh), he turns to his name (sometimes), he responds to some words (in combination with some sign) such as dada, eat, up, milk, light, bye-bye, peek-a-boo. He's getting it ... some of it ... but he doesn't have the whole package. And even after all these months, I still hate it for him.
I have been catching up on all of my blogs tonight, and as always am amazed at what our deaf/hoh children accomplish! We were very fortunate to find out about Aiden's loss as soon as we did and to get him into therapy right away. Because of this though, our path to cochlear implants has seemed like an eternity. Through it all, it has been great therapy for me to watch Drew sing, and Toes have conversations with her friends, and Christian tell his mommy he loves her! Please click on these links and watch the videos and read the stories. Each of these parents were at a point I am today. Each of them wondered if their baby would hear and speak. These stories have been so inspirational for me, since at one time I totally wondered if my child would ever HEAR, would ever TALK. Stories like these are the reason I do not think about Aiden's deafness day in and day out. Stories like these have provided me the wisdom, faith, and hope that one day I will hear Aiden sing, Aiden tell me he loves me, and Aiden have an all out conversation with whomever. It won't be easy, but it will happen.
It has also been a blessing to walk hand in hand with Lucas' mom, Ben's mom, and Danny's mom. To think two of these precious babies have had their surgery and soon it will be OUR turn. I am so excited and so ecstatic and so anxious and SO SCARED! I have been having a lot of dreams. In one, I couldn't tell if the implant was working, because Aiden was too young to tell me whether or not he could truly hear. In the other, I was getting the implants, and I was terrified, yet in the end, I walked out of the hospital just fine.
We still have about 1 month, 2 weeks, and 1 day until Aiden's surgery ... but who's counting! What keeps me going is the thought of my baby actually hearing us sing Happy Birthday to him when he turns one on Saint Patty's Day. How amazing is that!?!
Monday, December 15, 2008
Let me preface this post with the fact too, that the reason I chose this clinic was because of its association with the hospital we bring Aiden to for his ears. It is a clinic though with a lot of family doctors, pediatricians etc., and when you call in, you can ask for your doctor, or take who is available. I'm new here, know no one, and I'm still trying to find the pediatrician I like best for my kids. This particular instance was with doctor number 2, a family doctor.
At this appointment last week, I asked if there was any fluid in Aiden's ears, and the doctor told me "not really".
"Not really? Does that mean you see a little or none at all?" I asked and proceeded to tell him about Aiden's situation.
"Nope, not really any fluid. Let the cold run its course and use the lotion for his eczema. You can get it over the counter."
Decision made. Period. Moving on to try doctor number 3. I was already planning how next time I would specify I wanted just a pediatrician, not a family doctor.
Well, today we had that chance ... doctor number 3. I had to take Aiden back this afternoon as he started wheezing and having very raspy breathing. On top of this, his eczema has spread, and from this morning to this afternoon made it to his face. The over the counter "lotion" wasn't working by itself. He needed more.
So we headed back in. As the nurse weighed him she commented how bad his breathing sounded and checked his oxygen levels. They weren't where they needed to be. Doctor #3 came in, looked at his eczema, and said we definitely needed a prescription to get it under control. Then she listened to Aiden's chest ... for like 5 minutes ... and tells me after all is said and done, that "Aiden is just a heavy breather. Bring him back in if it gets worse."
I think I was in such shock that she truly said that, I didn't know what else to say. I took a deep breath, wondered why I was even back to this place for a third try, and said very calmly, "although my baby IS a nasal breather, THIS breathing NOW, is wheezing. He needs a breathing treatment. Did you see his oxygen level?"
At which time, (get this), she checked his, thought the machine wasn't working, so checked her own, saw that hers was fine, and then ordered him a treatment. Then after the treatment, she listened to his chest and said, "Oh this is weird, now I hear him wheezing. We need to get him some medicine and continuous breathing treatments!"
If it wasn't after 5pm and I would've known another office to bring Aiden to, I would have picked up my things and walked out. But he needed medicine now, and we got it. We came home with a nebulizer machine, Albuterol to use in the nebulizer, steroid creme for his eczema (to put under the "lotion"), and Prednisolone which will help both the eczema and his breathing (which by the way, can both be onset from a virus and go hand in hand ... hmmm, imagine that).
Oh, and on top of this all, Aiden has "some fluid" in his ears (at least she didn't say "not really" when I asked), but nothing red or pussy, no infection. I told her, "some fluid" is not allowed in a cochlear implant candidate, especially one so close to surgery. She asked me when the surgery was and then commented, "Oh, how nice, ear surgery right in the middle of winter!" AHHHHH!
Hmmmm .... three doctors ... three strikes .... and this clinic is outta here! Oh, I need a good pediatrician for my baby!
A mom from the parent-infant program we attend, gave me the name of this pediatrician out of Georgetown University Hospital, who provides pediatric services for families with deafness. How wonderful is that! A pediatrician who truly understands! Problem is though, it's over an hour away on a good day of traffic! Of course I'd love for Aiden to be one of her patients, but reality is, when your child is running fever and feels like crap, the last thing a mom wants to do is put them in the car and drive for over an hour!
I'm calling Aiden's surgeon tomorrow to give him an update on all of this. He is also in the process of getting us an appointment with a top ENT there at Hopkins, because of Aiden's EVAS/LVAS and his branchial cleft sinus on his neck. Maybe I can get in and see this ENT sooner than later. I'm interested to see what the surgeon says about all of this. Will they need to put in tubes to get rid of this fluid if it doesn't go away? Even though his ears aren't infected? My last ENT put him on antibiotics immediately (when our pedi. refused to) when Aiden had just "some fluid" back in Texas. I pray none of this affects his surgery in any way. We only have a little over six weeks to get our boy healthy for his big day!
Sunday, December 14, 2008
I used to look at Aiden and cry about the fact that he was deaf, I don't too much anymore, I haven't in awhile. I have my days, but they truly are very far and few in between. I have tried very hard to not let his deafness define him or how we treat him. To an extent anyway. It's so hard to explain. I understand why parents are sad about their children not hearing the beautiful sounds of the holidays. I get it. I understand it. Yet, it doesn't upset me that Aiden can't hear these wonderful sounds. I have faith that next year he will. I'm not downplaying anybodies feelings what-so-ever, and in fact, I feel guilty for not feeling the same and wonder why I am not upset about it. When Aiden's smiling though, I'm smiling. Which truly is almost all the time.
The thing that has gotten me though is Christmas shopping for him. It seems like all toys today make some sort of noise and perform some sort of light show. I always show Aiden the different toys when we're shopping, to see how he reacts ... to try the toy out. His favorite - Elmo. He loves Elmo. I was in Target a few weeks ago and saw Elmo. Aiden's oldest brother LOVED Elmo, so the first thing I did was run over and press Elmo's foot to see what Elmo did and hear the red little monster laugh. I didn't think twice that Aiden couldn't "hear" Elmo say to him "BIG KISS, Elmo loves you!"
As Aiden watched Elmo, his laughter rang through my ears and melted my heart. I didn't think twice at THAT moment, that Aiden didn't hear a dang thing. So I kept pressing Elmo's foot, over and over and over again, to hear Elmo talk and move, but really, just to see the look of amazement on my baby's face. Hearing Aiden laugh was all that mattered. I didn't even think of him NOT hearing Elmo until later as I was telling a friend the story ...
"You should've seen Aiden when I played Elmo for him at Target!"
".... ummm ... well, oh yeah, well, he was probably just excited about the way Elmo moved."
Since then, I find myself looking at every toy I pick up for Aiden and asking:
"What language opportunity will this provide for my baby?"
"How can I use this toy at home to provide Aiden a good listening environment?"
"Will he truly hear this toy, or will the lights just entice him?"
All the toys I have been picking out, turn out to be "therapy toys". Everything I look at, I think of how it will benefit his "learning to listen". I find myself defining his deafness through his Christmas list. I have been looking for toys that don't light up, but just make sound, because I want to know his reaction is from the sounds and not the lights or movement. I find myself picking out only toys that have some connection with the "learning to listen" sounds. I find myself picking out toys not for my baby, but my "deaf baby's therapy program" and for me and how I can use the toy to help him. I find myself not enjoying what I think need to be on his Christmas list.
And I have to stop.
Aiden is 8 months old ... 9 months at Christmas. Aiden has a very strong personality, whose smile lights up the room. Aiden is VERY social, loves all kinds of interaction, loves to eat, loves babbling, and loves all kinds of toys among every other thing that isn't a toy, yet he feels should be in his toy box. Aiden is full of life. Yes, he is deaf. Yes we are working VERY hard with him to hear and speak and we take every opportunity to teach him to listen.
My boy, at 8 months, has made his mommy take a step back, once again, and realize, he is so much more than just his ears. He is Aiden, my precious baby boy. He turns everything into a learning opportunity, i.e. the computer cable cords:
"no-no, don't PULL it OUT", "smooth", "let's plug it back INTO the computer"
ANY present we give him at Christmas, will become not only a learning to listen opportunity, but even more importantly, a fun time of smiles and laughter and memories as we watch him explore and enjoy every moment of his wonderful world!
Wednesday, December 10, 2008
Sunday, December 7, 2008
We started the week at therapy with our new AVT. This was our third visit and are both feeling very comfortable with our new AVT. The first thing we do in therapy is practice the Ling 6 Sounds. So far, at each appt., Aiden has consistently looked at Miss Margaret and then at me, each time a Ling sound is said (all except the /s/ sound)! This past week, he also demonstrated some sound-object association. As Miss M. stacked blocks she would say, "Up, up, up." The same thing I say each time I pick Aiden up. So, lo and behold, after about three times of her saying this, my boy looked right at me and raised his hands for me to pick him "up, up, up!"
In the middle of the week Aiden and I ventured to downtown DC to this school to check out the parent-infant program, which meets once a week for an hour. This school is just that - absolutely amazing! Not only does it have a top notch language program (for both hearing and hearing impaired children, all within the same environment), they also provide speech therapy, OT, and have an on site audiologist! The staff there is out of this world and I felt so welcomed! Everyone already knew Aiden and were so excited to meet him! And come to find out, one of the SLP's I've been talking with all this time, studied at TCU under Aiden's first AVT, Miss Helen! What a small world!
Then to wrap up the week, Aiden and I ventured out once again to meet this beautiful mom and her amazing son Christian! What a way to end the week! When I first found out Aiden was deaf, I did what every mom does - research, research, research. Upon my research, I found a few families that truly touched my heart that I reached out to, desperate, looking for comfort, hope, and to hear "it's going to be okay". This was one of the first families I found and I instantly felt a connection ... I don't know why, I just did. I've followed their journey and have watched in awe how this little man has blossomed. He is simply amazing and has provided me so much hope. Unfortunately, we didn't get to spend a lot of time with him, since I was running late getting there, and it was time for his nap soon after. But, I have to say, he was very social, asking "baby Aiden" about what he was eating, telling us what he was eating for lunch, and then saying "good night" as he was off to nap. Sweet, sweet baby! And his mother ... astounding!
So here's some of what I've learned:
- The vestibular aqueduct is a narrow bony canal that runs through the skull, connecting the inner ear (by the cochlea) to inside the skull. In short, the tube within this canal is filled with fluid which typically flows away from the organs of the inner ear. With LVAS, the fluid flows back into the hearing and balance organs, causing balance and hearing problems.
- This is a syndrome ... it is genetic, it is hereditary. They have traced the gene to be responsible for LVAS, but still have a lot of questions about the syndrome.
- LVAS occurs sometime after birth and is the result of abnormal postnatal or early childhood development (this is why I question why Aiden failed his newborn hearing screen? Could he truly fail it that fast? Most kids with LVAS are not diagnosed until after 12 months.)
- People who have LVAS are predisposed to the development of hearing loss (wouldn't this mean it's congenital then that at some point in their life they would have hearing loss??)
- It can be associated with Mondini (where the cochlea only develops 1 1/2 turns instead of the normal 2 1/2 turns - Aiden has a full 2 1/2 turns). They do say too though that hearing loss is greater if you have LVAS and do not have any other cochlear deformity.
- It can also be associated with Pendred syndrome - (We will need to get him tested for this although he shows no other signs of this syndrome).
- If you have LVAS without any other cochlear deformities, the hearing loss can be subject to sudden drops in hearing ... which may explain why Aiden failed his ABRs - was this a point where his hearing was at a sudden drop?
- The hearing loss can be fluctuating. It can be sudden by the bump of a head, it can continue to fluctuate over time, or continue to be progressive over time.
So where are we at? Aiden is still a candidate for cochlear implants. Our surgeon tells us that LVAS kids are typically prime candidates for cochlear implants depending on the severity of their hearing loss. Aiden's testing seems to just get better and better, with his last aided testing at 45 to 50 db, across all frequencies. THIS IS AMAZING, BUT ...
... is this his highest he will go?
...will his hearing fluctuate more and to a point he reaches even higher db's or continue to decline?
... is this the best we're going to get?
We know we can't turn up his hearing aids any more because there's a point that sounds become distorted. Without his aids Aiden is hearing about 80 db. So his aids work very well for him. If we turned them up any more though, he'd actually lose the "good" sounds. He's at his peak.
So, we're in a holding pen right now. We're playing the waiting game. We have everything done as far as CI candidacy goes and it's all a go. Except the most important part ... the audiogram. With his most recent audiogram, 5 years ago, he wouldn't be a CI candidate. We're on the borderline. Will it get better? Will it stay the same? Will it get worse? Do we just take the next one and run with it? Do we wait even longer for more consistent results? WHAT DO WE DO NEXT?!?
Aiden's daddy and I still feel very strongly about implanting Aiden, on at least one side (although we've been prepared for bilaterals for some time now), and before he is 12 months old. Even if his aided tests went up 5 to 10 db, we're still dealing with a fluctuating hearing loss, we're still dealing with the constant wondering of whether Aiden is receiving all sounds of speech, and we're still dealing with the fact that he could completely lose all of his hearing at any given moment. We want him to have access to ALL speech sounds and learn these sounds when they are easiest accessible to him ... in his prime learning years ... NOW.
So ... next steps include:
- Continue to work daily with the Ling 6 Sounds (ahhhh, oooo, mmm, eeeee, shhh, ssss), which by the way, he responds to all of them in therapy except the "ssss" sound.
- We hope that by working with the Ling 6 sounds on a daily basis will truly condition him to listening for these sounds and prepare him for the next soundbooth, which is on January 12th. I'll post a video soon of us practicing these sounds.
- After the soundbooth, we will meet with the surgeon again to verify candidacy and decide on a surgery date, which, if all goes well, will be in February (Aiden will be 11 months)
That's where we're at with cochlear implants. It's the waiting that's the hardest part. Before the whole LVAS diagnosis (and his last soundbooth), we were looking at bilateral implants by January. Now we're trying to figure out what's going to happen next. I have faith though and I feel a peace about me that everything is going to work out the way it is supposed to. I still anxiously await my baby's hearing birthday, but I know, it's right around the corner. Until then we continue with what we have to do to help our baby hear.
I found an AVT (auditory-verbal therapist) that I really like, so we continue to see her once a week. She used to work for Johns Hopkins (plus, trained under one of my AVTs from Texas!)then started her own AVT business, yet still works closely with our whole team.
Maryland ECI comes out one time per week. A couple weeks ago they came out and evaluated Aiden for his motor skills and language skills. I am happy to announce that Aiden was at 7 to 8 months for both receptive and expressive language!!! This is phenomenal! He's on track with fine motor skills, but behind with gross motor skills (which he tested at 5 months). He is still not sitting completely by himself. He is on his way, yet still has that whole balance issue. It will come though. He definitely gets around - by rolling. ECI will come out at least once a week for both speech and PT.
So, we're underway, trying not to watch the clock (or calendar) and just enjoying this holiday season.
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!
Wednesday, October 29, 2008
Before we left Texas, they turned up his aids ... he's getting bigger and therefore can take on more. He responded ... he definitely responded. He's been responding and today in the sound booth he proved it ... he loves to hear. He didn't only respond to spoken language, but to what I call the boring "static/monotone" sounds. He responded to the "mmmm's", to the "ahhhhh's", and even to the "shhhh's". He showed responses not only through the infamous "binky" tests, but TURNED HIS HEAD TO ALL THE SOUNDS! Continuous responses at 50 to 60 db. Flat line ... all the way across all frequencies. His audiogram shows pretty much a flat line between 50-60db. My baby is definitely hearing something and all I could do was smile and cry.
All the countless hours of ...
...him pulling his hearing aids out and us putting them back in,
All the countless hours we just want to STOP talking, but keep on going ... he is responding ... and every minute of our time has been worth it. The soundbooth confirms what we see at home, but always question, was that a response?!? Aiden wants to hear ... his auditory nerve has such integrity, and we are doing something right!
Aiden loves to hear ... his brain is getting ready for listening, and he loves it.
It was very emotional saying good-byes. We lived there together for over 11 years, me, since I was in 8th grade, excluding my college years in Michigan. My kids knew nothing but the neighborhood they grew up in, they're born Texans. I've always wanted to get the hell out of Texas and back up north, but I didn't think it'd be that hard leaving; good-byes were hard, very hard ... but it does feel great being back to four seasons, back to the crisp, fresh, fall air, back to to the seasons.
We have had so much going on in less than one year. So many changes. My dad's sickness and death, Aiden's birth and diagnosis of being deaf, all the shit my husband had to put up with at his old job for doing the morally right thing and then getting a new job ... all of this within a matter of 5 months. We were meant to be here, we prayed to start anew. My mom says we're starting a new chapter, I say we're starting a whole new book. We're on to a sequel, bringing all the good with us, leaving all the bad behind. CHEERS to a new beginning ... CHEERS to what is yet to come.
Tuesday, October 14, 2008
UNTIL LAST NIGHT.
He just would not stop crying and nothing I did consoled my baby. He seemed to want a bottle, but would cry as he drank it, and when he wanted NOTHING to do with his binky, I knew he truly felt like crap. This went on from 7pm until 4am. No fever (in fact I was worried he felt "too cool"), no pulling at the ears, no stuffiness cold like symptoms ... I think it was a combo between teeth & gas.
As I walked with him, rocked him, massaged him, wiped his face down, I couldn't help but think, if he could only hear his mommy's voice sing to him, MAYBE, JUST MAYBE it would help that much more. I know he knows no difference, but I do. It worked with my other two ... it just did.
So I put my lips on his head and hummed, I laid him on my chest and sang ... and for awhile it would work, and I'd get him to sleep. Then he'd wake up and we'd start all over again. He finally crashed around 4am and he slept, his head laying on my chest, my lips pressed gently on his head, humming sweet nothings.
Thursday, October 9, 2008
Lawn mowers and trimmers
Cars driving by
Moms & dad yelling for their kids
Birds screeching out
Leaves rustling as the wind blows
I paid extra close attention to the sounds I heard, so I could point each and every one of them out to Aiden. We'd stop and I'd show him, pulling him out of his stroller just to see. One dog wouldn't quit barking by the fence, but I wasn't about to move on until my boy saw what was making all this noise (the dog had those doggy windows, so we could see him).
Whether Aiden actually heard it or not, I don't know, but just in case, just by chance that he did, he was going to see what was making that noise!
"Aiden, listen. Dog. It's a dog barking. RRRrrufff, rrrufff. Dog Aiden. That dog is barking at Aiden and mommy."
He did look. He seemed more interested though in his nutso mom, but he'd stop, and he'd look. At the cars, at the dog, at the cat walking down the street (which of course I had to make the sounds for too).
Half way through the walk I had one of those damn reality checks (hate these) ... my baby is deaf. That "B" in my mind reminding me of what I already know,
"Yep Tam ... he's deaf and there's a good chance he's not hearing any of these sounds you're pointing out."
As I yelled back at that "B" to get out of my head, I reminded myself,
"BUT DON'T STOP pointing them out! They mean something. They have to."
As I continued on our walk, I thought about all of the hard work we do with Aiden now, to stimulate that auditory brain, and how we'll have to somewhat start over once he gets his CIs , because even if he's getting any bit of sound now, it will sound different once he's implanted.
I've had many people make the comment about Aiden getting his CIs and how he'll be hearing just like "all of us with no problem what so ever before you know it!". You'd think ... I thought the same thing at first. But it's just not that simple. We will have to train Aiden about
EVERY SOUND HE HEARS AND
WHAT IT IS AND
WHAT IT DOES AND
WHAT IT LOOKS LIKE,
WITH GREAT DETAIL, AND
HOW IT TASTES AND
HOW IT FEELS AND
HOW IT SOUNDS ETC. ETC.
It won't be easy. It won't be just a dog, or just a flower, or just a car. Every adjective, every verb, every adverb, every grammatical way I can to describe what he hears and what he sees, will be well worth it. Every moment will become a teachable one.
I know one day soon enough, I'll take a walk with my son and he'll be saying to me, "Mommy, look dog, rrrufff ruff. I want a dog mommy, ppplllleeease?!?"
I can't wait for this day!
Tuesday, October 7, 2008
I'll never forget the day we told them about Aiden being deaf. We ordered pizza. After dinner, we asked them if they knew what it meant to be deaf. Ryan, at age 11, knew it meant you couldn't hear, but didn't realize how hard it was to learn to speak as well. Kailyn, at age 7, had no clue. So we explained it, as simple as we could.
And the conversations, at different times, went on into teaching them how a deaf child can learn to hear and speak, cochlear implants, hearing aids, therapy, etc. We have always been very open with our kids about their brother. In fact, as soon as we started therapy, we got them involved, we wanted them to feel a part of it all, as if they were helping him just as much as we were. Yet, at the same time, we did not want to overwhelm them with Aiden, Aiden, Aiden.
I noticed, when Aiden was about 3 months old, that I was working with him and not spending as much time with my other two. I noticed, I was CONSTANTLY researching and reading everything I could about being deaf. I had to know it all NOW. I had to take a step back though and remember, my two older "hearing" kids needed me too. This was just as new to them as it was to me. We were all living in a new kinda world.
Soon after this defining moment, Ryan asked us some questions about Aiden.
"How much will Aiden's hearing aids cost?"
"How much are ALL OF THESE APPOINTMENTS Aiden has to go to?"
"How much are Aiden's CIs going to cost?"
All of these questions about money, and when he asked, he acted like it was a "no big deal, just a little curious" type of thing. But, I'm his mom. I knew better.
ONE, I did not want my oldest son to have any remorse towards his younger brother; and TWO, I learned when my dad was dying, that preteens often worry whether or not they are going to be taken care; especially when there is a big change in their life. Which, this was. To us all. We constantly reassure both of our kids that they will be taken care of, that we will never let anything happen to them, that we will do everything in our power to make sure they will be okay!
Then there's Kailyn. She's recently turned 8 and is just in love with her brother. What I found with her is to get her involved as much as possible! During the summer I brought her to therapy with me (I'd try to get Ryan to go, to no avail, but did not want to "make" him). Kailyn loves learning how to work with Aiden - it makes her feel important - and she does a wonderful job with him!
At one point, Mike was doing a (non-learning to listen) airplane sound, and Kailyn stopped and scolded him, "Dad, that is not the sound for the airplane! The airplane sound is ahhhhhh, ahhhhh."
IT MAKES SUCH A DIFFERENCE!
Jodi, an absolutely amazing mom, is helping Hands & Voices complete a study on siblings of deaf/hoh kids. I asked Ryan & Kailyn these questions she's asking of you, and here are their responses:
Question 1 - What do you tell your friends about Aiden's deafness?
Ryan - "I don't. I don't think it's a big deal to announce it because it's just who he is."
Kailyn - "This is my baby brother, his name is Aiden and he has "earing" aids so he can hear. He keeps getting new ear molds and he has two hats so he can't grab his "earing" aids out."
Question 2 - What's the weirdest question you've ever been asked about Aiden being deaf?
Ryan - "My friends will ask if he's deaf, I tell them yep and that he's getting cochlear implants, which will help him hear, and they don't really say anything else."
Kailyn - "Friends ask me if he can hear with those things in his ears."
Question 3 - If you could change one think about your brother, or his deafness, what would it be?
Ryan - "His chubbiness." (I told him babies are supposed to be chubby) "Not like that fat little man." (I asked him if he'd change him being deaf) - "Yeah, I guess. I wish he could hear, but I know he will with cochlear implants. It doesn't bother me he's deaf."
Kailyn - "I like him the way he is, but not getting "earing" aids. They bug me with all that noise and I just don't want him to have them anymore. I wish he could hear without his "earing" aids."
I also asked them if there is anything about his deafness that bothers them:
Ryan - "It's just an inconvenience" (I got a little worried at this point and asked why) "because it's harder to mess with him and tell him I love him." (not so worried anymore) ; )
Kailyn was done at this point ...
If you'd like to help Jodi out with this survey, visit her here to learn details, or respond to these question in my comments, and I'll get them to her. Again, balance between hearing siblings and a deaf/hoh sibling is SO IMPORTANT!
Oh, and the last thing I wanted to mention was the recent seminar we went to. A local parent support group, along with the Dallas Callier Center, supported a seminar for hearing kids and their deaf/hoh siblings. Our kids got to meet other kids who had cochlear implants, simulate deafness, simulate different tests their deaf/hoh sibling experience, and most importantly, realize their deaf/hoh brother/sister was going to do GREAT!!
A 6 year old girl who had bilateral CI's came up to my husband (as he was holding Aiden) and asked him if Aiden was deaf. Mike said yes, and the little girl asked, "Well, where are his ears then?" which Mike explained since Aiden was sleeping, he didn't have them on. She proceeded to talk to him and we were both AMAZED! My kids were AMAZED! This was all of our first day, of many yet to come, around many kids with CI's, and their siblings. I'm still taken aback!
My kids ABSOLUTELY LOVED this experience! If you have any questions about this simulation, let me know!
Wednesday, October 1, 2008
Here is a video I put together to look back at the last six months and where we've come. Remembering back, I felt so lost, so scared, so angry. That's changed. A little anyway. I've definitely come to terms with my binky boy's hearing loss and have taken an active stance in finding out all I can about it. I know now that I want to help other people. I know I don't want other moms feeling as lost and helpless as I did. I know there are a lot of families out there who need to be educated how important follow up tests really are. I know I want to make a difference. I know I will do everything in my power to provide Aiden a hearing world. I'm still scared, scared for the days when he cries to me, when he's sad about being "different", when he's scared. But I know too, at that time, I will be strong for my boy, just like I am today. And although I may be shattering with grief inside at these times, he will never know it. He is my strength, and I can only hope I will be his.
(STOP THE MUSIC AT THE SIDE TO VIEW VIDEO)
Tuesday, September 30, 2008
- One of the first steps to learning to listen is sound awareness (detection) and responding to the presence or absence of sound. Aiden definitely detects sound, we see this at home. We can tell a huge difference when he has his hearing aids in vs. when they are out. He is VERY quiet when they are out, doesn't babble or play with his voice too much at all. When they are in, he is always making noises. He doesn't get very loud like I've read about other babies who are deaf/hoh, but is definitely a lot more vocal.
- Part of the detection stage also includes localizing sound. Aiden is just now starting to "look" for where a noise is coming from ... SOMETIMES. Miss Helen noticed in therapy last week that when I talk, Aiden's face lights up and he turns right to me and smiles. I think he's starting to "know" his mommy's voice vs. other voices! This melts my heart.
- He is playing with his voice making short noises (eh, eh, eh, eh, eh) and long noises (ahhhhhhh). Helen noticed this in the video too. I knew he was playing with different sounds, but didn't realize the long vs. short. So my constant aaahhhhh's and mooooooo's, and mmmmmm's versus the ee-ee-ee's and bop-bop-bop's and bu-bu-bu-bu's, are paying off! My nonstop narrating in long vs. short sounds (up-up-up the stairs vs. doooowwwwn the stairs) is working! It is all working.
- Aiden has been making many different letter sounds - g (as in goat), d, b, ah, long a - I know these come and go and he may lose them, but to just hear him make them means so much! It tells me he's playing with his tongue/voice, it tells me he's getting something, it tells me my baby wants to vocalize, it tells me WE ARE DOING SOMETHING RIGHT.
We also started basic signs. In the beginning, we were not going to. In the last couple of months, we decided to start incorporating them into our everyday lives. Signs such as mom, dad, milk, I love you, good night, good morning, bath, cat ... simple things that are a part of our days. We have a sign for Ryan, Kailyn, and Aiden too. When we do sign, we create a "listening sandwich" (which I learned about in the recent Play it by Ear! seminar I attended). We always provide auditory input before signing the word and then auditory input again after we sign. So the first and last thing Aiden gets is auditory input. We, 100%, want our son to be auditory-verbal. Yet, we know there will be times he may be without his CIs and may need sign to communicate; plus we see it as a good bridge to verbal communication. We have an awesome parent-infant advisor that is helping us with all of this. She is an advocate of sign, but NEVER pushed it on us; she waited for us to tell her if and when we were ready. This is a whole other topic which I'll save for another post. BUT, I have to proudly say, Aiden is signing MILK! Once I figure out my new video camera, I'll post it.WOW ... all this progress/happenings in six months. Plus, we're still set to head to Maryland in a few weeks, still on track with getting cochlear implants, still just living day by day and step by step. That's about all I can handle.