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.