Friday, January 30, 2009

That too?!?

Yes, that too. I was explaining to a tacky acquaintance once about Lucas's heart condition, and she responded, "he has that wrong with him too?" She meant no real harm, but her words hurt me and I have not forgotten that conversation.

When Lucas was in the NICU after birth, the doctors detected a heart murmur. They did a heart echo and discovered that Lucas has a bicuspid aortic valve, which results in aortic insufficiency (AI). The aortic valve is supposed to have 3 leaves, but Lucas's valve has 2 fused together, making it bicuspid instead of tricuspid. Because the valve cannot fully close, it allows some blood to flow in the reverse direction, causing the detectable murmur. Lucas also has a small Patent Foramen Ovale (PFO), a small hole between the ventricles, which is common in babies (and actually all fetuses have), but it's supposed to close at birth, or shortly thereafter. Lucas's has not closed yet, but is very small. The cardiologist says it's not a problem as long as blood continues to flow from the left to the right ventricle. Yesterday, we were told that the left ventricle is slightly larger (1 mm) than average, so they will continue to watch that.

The cardiologist continues to stress that Lucas's heart condition is MILD. Every time we go, they always ask us if he ever turns blue (!!??!!) or sweats excessively. No, none of the above. At this point, they just want to monitor him every 6 months. The doctor always tells us to continue to treat him like a normal child, with no limitations. But, it is not recommended that he play football, wrestle or do power lifting when he's older. Oh shucks (please sense the sarcasm). In the future, he MAY require medication, and eventually (a few decades?) he MAY need to have his valve replaced, but he also may not. WE'RE NO WHERE NEAR THAT POINT. Nate's maternal grandfather had the same condition, didn't know about it until he was in his 60s, and lived into his 80s, so that gives us hope. But sitting in the cardiologist's office yesterday, with his CI processor on, I know people were thinking, "that too?" Yeah, that too. It hurts me very badly to think about it. I often want to cry when I meet new kids who are perfectly healthy. Even though I know it's ridiculous, I continue to wonder what I did wrong.

Hearing loss is not life threatening, but rather "lifestyle" threatening. The heart is a different story. But his hearing loss is a much bigger deal right now. It threatens communication, which is at the very center of human existence. We visit the audiologist at the "Center for Childhood Communication," not the "Center for Childhood Hearing." Our goal is to provide him with multiple ways to communicate, so that he doesn't miss out. That's why he has a cochlear implant. That's why we're learning to sign. That's why I'm home right now, teaching him to listen.

Progress with the CI is slow, but expected. Because of his age (13 months), I can't expect him to belt out words, considering he probably wouldn't be speaking even if he could hear! He continues to turn to loud sounds, and I constantly point to my ear and ask "Do you hear that?" I also try to talk constantly to him, to expose him to the spoken language he's missed for the past year of life, plus 8 months in the womb (he didn't spend 9 months there). I sandwich signs with words - say the word, say the word and sign it, say the word again. And, we're still meowing at the meow meows all the time (my favorite... it will never get old!). His speech therapist and teacher of the deaf are great. I look forward to speech therapy today for some new ideas.

I'm anxiously waiting for him to make more sounds though. He used to be so chatty, but it stopped around Christmas, and now (other than his crying/fussing sounds) he makes this one strange sound that's indescribable. It's a guttural sound, that sounds like he's clearing his throat, or sick, or choking or something. It's awful, and kind of embarrassing. My sister thought he was going to throw up, my grandmother thought he was choking, and others just don't know what he's doing. I can't wait until he gets rid of it.

I don't want Lucas to grow up too fast, but sometimes I wish I could see 10 years ahead, and know that everything will be alright... that he can talk, that he can walk (not quite there yet), that his CI is successful, that his heart is still on "monitor-only" status. But I know I can't, so I continue to cling to hope and lots of CI success stories to help me through.

Friday, January 23, 2009

2 weeks post-activation

Lucas has been "hearing" for 2 weeks now. He's not doing so badly with his processor either! He will even let it alone for up to an hour. It's most challenging when he's in his high chair or car seat, because it gets knocked off when his head brushes against the back of the seat. I'm SOOOO glad that he's not constantly yanking at it! He's doing pretty well with the babyworn option right now too. So far so good.

I haven't posted in a while, because I really haven't had anything spectacular to report. We do get him to turn his head when he hears loud sounds (drum, clapping, etc.). We're also working with "meow" right now, as we have 3 meows to meow at in the house. I swear the other day I meowed and he looked up and pointed to one of our cats. I'm a really big skeptic too, but it really looked like he did! He's learning about the presence and absence of sound. Don't forget that he's like a newborn again in terms of his hearing.

Today we had another mapping at CHOP. He's tolerating the volume really well, so we came home with 4 new programs to work through until our next mapping in 2 more weeks. He now has more volume, which gives him more access to sound, so I'm really looking forward to seeing what he will do in the next 2 weeks. Today at the appointment, his audi was again really impressed by his reactions (especially for having only been activated for 2 weeks, and only being 13 months old), so we did some booth testing. He gave us the impression that he typically doesn't do booth testing so soon, but thought Lucas might do well. Now, although Lucas wasn't responding perfectly (partly because he was really into his toys probably), he still was responding at 50 dB!!!!!!!!!! I mean, that's not really something to write home about, except for the fact that we couldn't even get him to react at 120 dB previously!!! His audi expects that next time we test him in the booth, he will react between 15 & 20 dB. Keep in mind that Lucas is hearing beeps and buzzes right now, and that's it, but it's still more than 15 days ago! His audi pointed out to us that it will soon be much less about what he does in terms of the mapping and much more about what Lucas's brain will do to interpret the beeps and buzzes. That's why therapy and constant reinforcement of the therapy is SOOO important. He still has a long way to go. But we're definitely on the way, no doubt about it!!!!!

Today marks the first day of my 8 month stint as a stay-at-home mom/full time therapist :), and I am thrilled. It doesn't feel like it yet, because of being at CHOP today, followed by my nephew's birthday party tomorrow, and a crazy week of appointments next week... another CHOP follow-up (too bad we couldn't do that today too, but I did try), a dentist appointment for me, a consult with a physical therapist (we are discontinuing occupational therapy, because when Lucas was assessed at 12 months he scored at 15m for fine motor skills, 14m for adaptive skills and 10m for gross motor skills... so we're going to see whether it would be beneficial for him to work with a PT to bring his gross motor up to par... mostly walking and balance issues), therapy with TOD, therapy with SLP and his bi-annual cardiology visit. We're praying that his heart condition will have improved a bit, and that he will continue to not need medication or surgery. It has taken a back-seat to Lucas's hearing loss, and we pray that it can continue to do so. It still worries me though, of course.

It snowed a little bit last Monday... enough to get out Lucas's sled and walk around the block. Here's a picture of him all bundled up in the cute outfit that Laurie sent him from California for Christmas!!! (Thanks Lou!!!).

Sunday, January 11, 2009


Thanks to all of my blog friends for your advice on keeping the processor on! We're still trying out all of your ideas... every time I think we've found the solution, something doesn't work right. I know it will come though, I'm sure of it! And I'm being very patient! I definitely think it's easier than his hearing aids, that's for sure!

Every time that I put his processor on, I think of the video below. Nate and I first saw this a few months ago, and it has stuck in my mind. Luckily, Lucas just kind of stops what he's doing for a moment, and then smiles. Maybe that's because he's still on his first program, I don't know. Nonetheless, this is a very interesting take on what it's like to attach the coil, something I will never experience, and Lucas will not be able to describe for quite a few years.

Friday, January 9, 2009

Happy Hearing Birthday!

Woowwww, what a day! Thanks to everyone for their encouragement, prayers and well wishes! The day could not have been more exciting for Lucas!

Activation was great, fantastic, beyond expectations, amazing and (enter any other positive exclamation here). He did really, really well. The audiologist was thrilled by his reactions, even a little bit surprised. He conditioned to the sound right away and turned consistently to the little animal in the box almost every time. He did not cry, but rather stopped what he was doing, turned his head quick, opened his eyes up wide and smiled. Unfortunately, I was kind of behind him to the side, so I couldn't see it all that well, but Nate could, and we got it recorded. I remember waiting for the same moment when he got his hearing aids (yeah, waiting for about 9 months) and it never came. We never got a reaction from him, even once. Today more than made up for that.

We got A LOT of information today, including a briefcase sized box full of lots of accessories, and instructions. Because we had equipment orientation AND activation, the information load was even heavier. I still don't feel as overwhelmed as I did when he got his first pair of hearing aids though. Maybe the HAs prepared us for today...

I would say that even in the half day that Lucas has had his processor (and he didn't even wear it during the 1 1/2 hour drive home), we have re-adjusted it probably 30 times. The behind the ear part will not stay on at all, so it just dangles behind him half the time. But every time he shakes his head or brushes up against something, the coil (which is attached to his scalp by a magnet) falls off too. Oh yeah, and he pulls it off too. So, needless to say, we already used the pilot cap on day 1. I had been warned, so I was not terribly surprised. I know that it will get better, and that we will soon find our solution for keeping it on his head. But for a while, it will be quite challenging. In fact, the audiologist left us by telling us that our biggest job in the next 2 weeks will be keeping it on. Almost every time that I would replace the magnet today though, he would stop what he was doing, look at me, and smile. That made it all worth it.

Yay, Lucas has "hearing". Or does he? Don't forget that he will never hear like you and I do. He is still deaf and he will always be deaf. His hearing has not been fixed. Only time and A LOT of work will teach his brain to make sense of the noise he's hearing. It's not as if he heard Mommy & Daddy's voices today. But, when we spoke to him, he heard buzzing and beeping, which is more than he's ever heard before. He's probably only hearing something like this - beeps, buzzes, but nothing intelligible. In a few weeks, he might hear more like this, and hopefully eventually it will sound like this. Only time will tell.

Thanks again for all the support from everyone: our families, friends, co-workers, and blog friends. You have all reached out to us with encouragment and have shared in our excitement today. Lucas is officially "hearing" on this brilliant day. Now the journey really begins. Enjoy the video that Lucas's Daddy edited for the blog!

Sunday, January 4, 2009

Preparing for CI Activation

We're in the final countdown... 5 days. Here's what I'm doing in preparation. Mostly I'm doing some reading, lots of reading. The following list should serve a few purposes, least of which is to toot my horn. First, if there are parents of newly diagnosed children, it can serve as a great place to start. Second, for those experienced parents out there, if you have other ideas besides what I'm already doing, I would love more suggestions! Third, for all of my friends and family who read this blog, and to whom much of this may sound foreign, I hope you gain some insight into what we are doing for Lucas to prepare him for the rest of his life.

1. I'm taking the John Tracy Clinic correspondence course. I'm on baby lesson 3, which is perfect for his age and soon to be activation. Up until this point, I've been unable to use many of the suggestions because of Lucas's lack of access to any sound. That will soon change. I HIGHLY recommend this course for parents of deaf/HOH children.

2. I'm also reading A Father's Love, a book by a father of a 6-year old girl, bilaterally implanted with perfect oral language. The book describes the process he went through, step-by-step, to teach her how to listen and speak perfectly. I'm also corresponding with him regularly, and he's helping me to make some really important decisions about Lucas's deaf education.

3. I continue to read some PHENOMENAL blogs about children with successful cochlear implants: Drew, Gage and Brook, Christian, Gavin, Landry, and others. I regularly read Deaf Village, which showcases blogs about deafness (and on which Lucas's blog is highlighted when I post). And I read 2 blogs of kids that are at pretty much at the same point that we are with Lucas, Aiden and Mikaela. These mothers have been a great support to me over the past few months.

4. I read lots of lots and posts on the following listservs: cicircle, Listen-Up, LVAS, and learn2hear. Cicircle also has a website, that has a lot of great information. These listservs provide me with a lot of information that I wouldn't even think to ask about yet, but that I file in the back of my head. I don't comment much, because I don't have much to add, but I read and learn a lot!

5. NEW: I'm educating myself specifically on oral deaf education, and what needs to be done to mainstream Lucas.

When Lucas was first diagnosed, we were like "great, let's learn sign language." We've learned since then that there are SO MANY more options to being deaf than sign language. One of my first posts on this blog was about our choice of Total Communication (TC) as our communication method with Lucas. That was a great choice for him 6 months ago, but not anymore. What was right for Lucas 6 months ago, today and 6 months from now can all be very different. It's good to be flexible (and realistic). I feel like TC may give him both mediocre speech and mediocre sign language (not even ASL). Our only goal for him right now is to have excellent, if not perfect speech. If for some reason he does not receive a lot of benefit from his CI, then we will re-evaluate. For now, we're taking an Auditory-Verbal approach, but we're still going to use some signs with him (in the same word order as English) unless we feel that it's getting in the way.

Since it is our goal to mainstream Lucas by first grade (if not sooner), then we need to learn as much as possible about the subject. That's one of the main reasons that I will be taking a leave of absence from my teaching job. We're not going to sit around and wait and see what happens. We must be proactive. This is when he must begin to develop the oral language and hearing that will guide him through the rest of his life. There is a window when this acquisition must occur, and we're not going to miss it! I'm also preparing for Lucas's upcoming IFSP review in February. I need to have very specific ideas about the goals and services that he needs to meet our goal of a mainstreamed oral education. I plan to visit the HOH preschool program in our area, another reverse mainstream preschool in our area that would provide ample speech support (as another preschool option), the HOH kindergarten class in our area, the Pennsylvania School for the Deaf, the Clarke School for the Deaf, and others. Even if that's 2+ years away, we need to have an idea what we're working toward.

I know that Lucas will not hear me speak on Friday, but he will hear something for the very first time! I'm so excited, thrilled and scared to death at the same time! One thing is for sure, it will be a very, very exciting day. Any suggestions for my continued preparation and future reading are highly appreciated!