Sound

Have you ever stopped to think about all the sounds you hear in a day? We take for granted this very special sense. Your alarm wakes you up, then you hear the water in the shower, brushing your teeth, shutting the door, hearing the cat meow, starting the car, the music on the car radio, the birds outside, the siren on an ambulance, even the air conditioning. My only annoyance with the window air conditioner in ours and Lucas' room, is that I can no longer hear him breathing over the monitor. I used to be able to wake up and listen, but now I have to get up and check on him. He doesn't know my voice, nor his Daddy's voice, and he can't hear his cousin scream at the the top of her lungs. Today that was a good thing, because he was sleeping. But how excited I would have been, had he woken up startled and crying.

I try to picture a complete absence of sound, and it's so hard to do. The other night, I forgot to turn the sound on our tv back from the DVD player, so I had to watch the tv in silence (I couldn't get up at the time). It was so annoying! I was watching "So You Think You Can Dance." I tried to read lips, and I did a little bit, but it was just not the same watching them dance without the music. That's Lucas' reality. We watch the Baby Einstein DVDs, and he can't hear the music. At least it's visually stimulating though, and the puppets and caterpillar make him laugh out loud.

Lucas really hears nothing. Even after turning up his hearing aids, and wearing an FM system, he will not react to anything. Maybe it's a function of age, but he's had the hearing aids for 3 months now, and nothing. I try to elicit a reaction. I find loud things in the house and stand so that he can't see me. Nothing. I work on the ling sounds (ah, ee, oo, m, sh, s) that he needs to access language. I thought last week sometime that I was getting a reaction to "ah", but not any more. I just can't easily reproduce 90 db at home. And even if I could, it might sound like a whisper to him.

I seriously ask myself on a daily basis why God would have done this to Lucas. I really wish I knew, but I know that I will never, ever know. I hope that the pain will some day go away, but right now it's still very, very real. I haven't quite made it to Holland where I can at least understand some of the language, since there are many similarities to German. I'm currently stuck in French-speaking Belgium. I guess there's at least amazing chocolate and awesome beer there though. I'm still on my way. We will make it to Italy someday, I'm certain of it (or at least Italian-speaking Switzerland, where I think I like it better anyway).

CHOP visit 6/25

Nate's home from Costa Rica! He had a great time, with quite a few interesting stories to tell. Although I wish I could have been there, I'm glad I made the decision to stay home with Lucas. I'm DEFINITELY not ready to leave him overnight yet, let alone for 9 days.

We returned from CHOP this evening. It was a relatively uneventful day. It wasn't particulary bad, and it wasn't particulary good. I just feel like we're kind of at a stand still. We only had one appointment today (compared to our usual 2 or 3) and it was with our audiologist, Erin, who we like very much, by the way. The main purpose today was to get fitted with new hearing aid molds, as we need to do that every few weeks because he outgrows the old ones so quickly. She also turned the volume up to around 100 db on the hearing aids, since we're seeing no benefit yet. We put him in a sound-proof booth to see what he would do (he sat on my lap during the test). We think that we got reactions from him at 105 db, the highest the test goes (I was wrong, before I said the test went to 120 db). That doesn't necessarily mean that he can only hear at 105, but we at least got some kind of reaction there. So I guess we can say that his hearing is between 90 and 105 (in both ears), which makes him quite profoundly deaf.

I did schedule 5 more appointments for August though - our CI info meeting, another hearing aid check (and ear mold fitting), an evaluation with speech and language pathology, an appointment to see the ENT and another with genetics. I'm trying to get as much in as possible before I return to school on August 21 - it will be much easier that way.

Our next excitement is a sedated MRI on July 3, 1 week from tomorrow. That will be lots of fun. (Some days I'm more cynical than others... today just happens to be one of those days.) I'm really just not looking forward to having him sedated. That test will probably determine his CI candidacy though, so it's quite important and also stressful at the same time, to say the least.

Welcome to Holland

The following story was given to give me by a friend, and really reflects exactly what Nate and I have been through the past 6 months. Nate and I are strong, but we've definitely had our ups and downs, and felt a whole array of emotions, from devastation to anger to sadness to guilt. It started when Lucas arrived 4 1/2 weeks early with no warning. What did I do wrong, I thought constantly for months. Is he deaf because he came early? Prematurity is certainly a risk factor for hearing loss, he just misses all the criteria though. So that's probably not the cause, but it hasn't been completely ruled out. February was a tough month. It got to the point where Nate would do ANYTHING to make me smile. Nate took it hard too, he just dealt with it differently.

Please don't misunderstand me, I would not trade Lucas in for the whole, wide world! He means everything to us! We would love him just the same, hearing or not. His hearing loss has just thrown us for a loop. We had always dreamed of raising bilingual, or maybe even trilingual children, always wondering why people who had the ability to do so never took advantage of it. Lucas may still some day learn Spanish and/or German, but it's no longer a priority. We even gave him an international name so that we could travel to German and Spanish speaking countries and have them pronounce it with ease! That's how much we thought about it. That's how important it was to us.

We truly rejoice in his life! He is such a joyful little boy and we can't imagine life without him! God obviously has a special plan for us, and a special plan for him, even if I have a lot of trouble remembering that on a daily basis. He will be okay, and he will live a fulfilling life. The next few years will be trying though. We're doing the very best that we can possibly do for him, and nothing less.

Next time you meet someone with a special needs child, no matter what the circumstance is, don't tell them that it could always be worse. It's just not your place to make that determination, even if it is true. You stand there with your perfect child, who has reached all of his or her milestones on time, has never spent a day at the doctor other than for a well-baby visit, nor a minute in the hospital other than at birth, and you don't even know what a specialist is. You try to make that person feel better by telling them their situation is not that bad, but you really have NO clue what it's like. Welcome to Holland.



WELCOME TO HOLLAND
c1987 by Emily Perl Kingsley. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Colosseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Cochlear Implant Journey, part 1

It's official. I've sent in all the paperwork to CHOP to get us started on the CI (Cochlear Implant) candidacy process. It's taken a few weeks, because I just wasn't ready. I also had to gather lots of information to send. They want copies of all reports: audiology, IFSP, physical reports pertaining to his hearing loss, etc. Now we just wait for them to call and schedule an initial information session.

It's funny, when we first heard the buzz word "cochlear implant" when he was diagnosed with the hearing loss in February, we knew so little about it. Even when we met the audiologist at CHOP at the end of March, we reacted to her like "why wouldn't everyone want a cochlear implant for their child?" She looked at us astoundedly. That's when we learned about the deaf and the Deaf community. We realized that we had a lot to learn (and still do, of course!). It's still a very positive thing in our eyes though. The fact of the matter is that Lucas lives in a hearing world and we want to provide him with every chance we can to live as an integral part of it. It will, however, never change the fact that he is deaf. I must keep reminding myself of that.

As of now, it appears as if Lucas is not getting a lot of benefit from his hearing aids. We have yet to see him react to us or to sound. That's pretty frustrating, let me tell you. I'm not losing hope that it will happen one of these days. We still wear them every day though. At the very least, he will get used to having something on his ear, because if he does get a cochlear implant, something similar will be there.

Ok, so the next big step in the candidacy process is the MRI, which is scheduled for July 3. Thank goodness he can have that done here in Lancaster. He has to be sedated for this though, because he can't move at all, so we're waiting until he is 6 months old to reduce any risk associated with sedation. The purpose of the MRI is to see the structure of the ear. If he is missing the cochlea or the auditory nerve, he will not be a candidate. The fact that they found some hearing in his right ear at 90 db at a middle frequency indicates to me that those things are at least present in the right ear, so that's good news. This link provides a list of other factors for candidacy. As far as I'm concerned, he meets all the other basic requirements. We're just waiting to hear about the MRI now, and to see if we meet CHOP's requirements.

If you're interested, Nate and I just watched a documentary on the history of the deaf community called Through Deaf Eyes (PBS, 2007). It was very informative!

Father's Day

Well, Nate's first Father's Day came and went without him. I guess it was kind of bad timing, taking 40 kids to Costa Rica on Father's Day, but what are you gonna do? There will be many more to come. I just want to make it public what a wonderful father Nate is. I feel so blessed that he is the father of my son. He's so good with him and from the day he was born, Nate has played a very active role in his life, changing diapers, feeding him, bathing him, playing with him, and attending all of his doctor's appointments that he possibly can. I appreciate his support beyond measure. He didn't sign up for this "special baby" thing, but he surely has embraced it. Nate can get Lucas to laugh like no one else can. Lucas adores his daddy, and so do I. I miss him to pieces right now, and I don't know what I'd do without him.

Communication Methods

Oh, the decision on which communication method is best for Lucas!

Before we even learned that there are various theories on communication methods in the deaf community, such as cued speech, sign language, auditory-verbal, auditory-oral, total communication, etc., Nate and I naturally gravitated toward total communication. We chose Total Communication as our communication option for Lucas because it uses multiple and reinforcing methods of communication to support both receptive and expressive language development (sign, voice, speech reading, gestures, cued speech, facial expression, …).

It seems to make the most sense to us to provide him with lots of options! As language teachers ourselves, it seemed like a natural fit to teach him ASL. What's another language when you already speak 3? Don't get me wrong, we want Lucas to hear and speak in the worst way, but we also want him to have options. I almost feel as if we would be doing him a disservice if we didn't teach him sign language. When he's older, he can then choose for himself.

Here are definitions for the various communication methods in the deaf community.

Introduction and Welcome!

Greetings family and friends!

Welcome to Lucas' blog. We hope that we can more easily keep you updated on his progress through the use of this blog. Lucas is now 5 1/2 months old and growing like a pretty weed! He's all smiles and giggles, and he's working on learning how to sit. He loves to stand too. He's a strong little bug! He's also very vocal, which is good, as he could easily lose that because he hears nothing. His hearing loss is categorized as severe-profound sensorineural hearing loss. There is still no known cause.

Lucas was born on December 23, 2007, 4 1/2 weeks ahead of schedule. He was 5 lb. 7 oz. and 18.5 inches. He spent 8 days in the NICU: a few days on a CPAP, and a few days under the bilirubin lights. He did not pass his newborn hearing screening in the hospital. I found out later that the screening only tests up to 35 decibels. We were refered to an audiologist at the end of January for further testing. At the first ABR (Auditory Brainstem Response) test (January 22, 2008), we were told that the results were inconclusive because his ears were still so small (his adjusted age at the time was 0). Looking back on that, what occurred is that they got no response up to 90 decibels, and were hoping to blame it on his age.

We returned on February 12, 2008 for another ABR, and on that day, we received the news that Lucas' hearing loss was severe-profound, and that they had, in fact, gotten no response at the highest end of the test (90 decibels). We were referred to the Children's Hospital of Philadelphia for further testing. On March 19, 2008 we headed down to Philadelphia to meet with a pediatric ENT and a pediatric audiologist. The results were the same, but the ENT found amber fluid on his ears, which could have been affecting the level of his hearing loss. He was fitted with hearing aids, and we returned on March 28 to pick them up. I had no idea what we were in for with the hearing aids! They're very sensitive and give off feedback like a microphone if they're not in perfectly. Thank goodness they fit better now! He also doesn't mind them that much yet.

Most recently, we went back down for a hearing aid check and his 4th ABR. At that time, the ENT said that his ears were clear of fluid, so we would be able to get an accurate ABR reading. That's when they found hearing in his right at 90 decibels at a middle frequency. The test only tests up to 90 decibels, so we don't yet know where his other ear fits on the audiogram. It's not exactly hearing as we know it, but it's not a total absence of hearing either, so that's good news. Check out this speech banana to understand better what 90 decibels sounds like.

Our next visit to CHOP is June 25. At that time, we will test Lucas' hearing in a sound-proof booth. That test goes up to 120 decibels, so hopefully we'll have a better idea. He will still be young though, so we may not know that information for a while. They will chart his hearing based on his reactions, but he may not react a lot because of his age. We've been told not to get our hopes up.

For now, Lucas has hearing aids. We don't know the exact benefit of the hearing aids, because we can't exactly ask him if he hears us. Based on his audiogram, he should be able to hear some very loud sounds. However, he cannot understand spoken language because of the severity of his hearing loss, even with the hearing aids. We still wear them as much as possible though, because we just don't know.

Your prayers are always appreciated.