Thursday, March 19, 2009

Receptive Spoken Language

I think I've been so intent lately on getting Lucas to produce sounds, that I haven't been noticing his receptive spoken language - until today. I decided I wanted to see what he would do if I said "milk" while he was eating, and waited for a response. Check out what I got:

Can you believe it? I almost fell over. I'm surprised I sound so unsurprised on the video. He did the same thing for cracker (which at the moment is his most favorite food - Ritz crackers, specifically). He knows I keep them behind where he's sitting in the video, and when I said it, he completely turned around and pointed. How exciting!

Here's another video that shows two different things. First, how he "dances" when he hears music (he does it much better than that, but it at least illustrates the point), and how he "signs" uh-oh. I don't know if it's REALLY how you sign uh-oh, but that's at least his *home sign* for it. It was suggested by his speech therapist (who signs also, incidentally). I think she's amazing, by the way.

So, the turn taking we've been practicing for the past year paid off today. I waited for a response, and I got one. I need to learn to be more patient more often.

Wednesday, March 18, 2009

Presenting: "mamamama"

Oh happy day! I reported yesterday that Lucas was babbling "mama" on Monday. Well, yesterday he did it some too, and today he did it A LOT - enough to get it on video too! I didn't think this day would come for a long time, if ever. The clip is very short, so you might have to watch it a second time. Don't forget to turn off the music to the right. Enjoy!

Tuesday, March 17, 2009

2 months post-activation

Blog or take a relaxing bath? I'm hoping to be able to do both before my little man wakes up from his nap...

Yesterday was Lucas's 2-month post-activation mapping and speech evaluation. It was a long day for all of us. (Oma, aka my mom, went along to help keep Lucas entertained in the car, etc.)

We first met with audiology, and he immediately took Lucas into the booth to see what he is hearing. He was responding to speech at 20-25 decibels! I don't know if it will ever cease to bring tears to my eyes when he tells me that! I promptly asked for an audiogram. They were always blank before the CI. Not anymore! I'm so proud, I want to hang it on the fridge! (hahahahaha) Then Lucas got a few new programs with a bit more volume. We come back to see him in a month.

Here's a brief video of Lucas in the booth, if you're wondering what it's like. Babies, toddlers, and young children obviously can not be relied on to signal if they hear a sound, so they are taught to turn to a sound. They are then "rewarded" with the sight of a toy lighting up or moving. This is called Visual Reinforcement Audiometry. CHOP just got some much needed new toys for their sound booths. The toy he turning to is a frog playing the drums.

Then we met with speech. Lucas did not "perform" that well for her, although she wasn't too concerned. He just was not interested in using his voice! She gave me a hand-out on auditory and speech guidelines for children who have been implanted under 2 years of age. So far, Lucas is performing in the "expected" ranges, and has not hit any "red flag" categories. My goal for him for this month is to imitate 2 different vocal lengths. For example: ahhhhhhhhhhhhh and ah ah ah ah ah ah. According to her hand-out, he should be doing that by 3 months post-activation. She said she still wouldn't be that worried next time because of his age, but it's still my goal.

Here are some things that Lucas IS doing!

1. He "dances" to music! He wiggles and moves his head back and forth. I'm still trying to get that one on video! It's adorable!

2. Yesterday, he started babbling: "mamamamamama"! He said it probably 5 or 6 times in the car! I'm not certain that he's saying it with meaning, but it doesn't matter! It was wonderful.

3. He doesn't indicate to us that his coil has fallen off when it has, but he has begun to sit very still for us to put it back on. I think that's a good sign...

I also began the paperwork for bilateral implantation. The first step in that process at CHOP is to get insurance approval, so we'll see what happens with that. We go back to see ENT on April 10, and he's a BIG deciding factor also. More about that later, but I'm excited to get the paperwork rolling!

Friday, March 13, 2009

March for Babies

As with so many other babies in the blogging world, Lucas was born too soon. He was due on my birthday (January 23), and born right before Christmas on December 23, without warning or any other indications. He was borderline, being born at 35 weeks, weighing 5 lb 7 oz - they didn't rush him off to the NICU, but waited to see how he would transition on his own. He was admitted about an hour after birth due to respiratory distress, and spent 8 days there.

Lucas in the NICU at Women and Babies Hospital

I remember saying to my mom: "I really hope this doesn't happen to Kristin (my sister, who was due at the beginning of April), because it's living hell." I had no control over my baby, and there were visiting hours! You mean I couldn't be there 24/7? I could only touch him/hold him if the nurse said it was okay. I understood why, but it was really tough as a new mother, who wanted so badly to take her baby home and be left alone. 8 days was a VERY short stay there, compared to many babies.

Lucas on the day we brought him home from the hospital

So, Lucas came home on New Year's Eve, with a bunch of follow-up appointments, but otherwise healthy. January went by, and Lucas reached his due date. Then my mom called me on Saturday, January 26, with some very urgent news: my sister had delivered 10 weeks early, again without any warning whatsoever. I was devastated for her, and couldn't stop crying, because I knew the pain, the guilt, the emptiness of not carrying a baby to full term and the long NICU stay he had ahead of him.

Ryan in the NICU at HUP

Ryan was born weighing 3 lb 9 oz, and spent 35 days in the NICU at The Hospital of the University of Pennsylvania. Today he is a 13 month, happy, healthy little boy, with NO lingering complications associated with premature birth. But still, he was born too early.

Lucas and Ryan in May 2008

2008 was a tough, yet very joyous year for our entire family. Lucas and Ryan were soooo lucky, insofar as they survived premature birth without the many complications associated with it. Lucas came home with a list of health concerns, none of which were caused by premature birth. Not all babies are so lucky. Many never leave the NICU. Others come home with respiratory issues, visual impairment, among other things.

Lucas and Ryan on Mother's Day 2008

Where am I going with this? The March of Dimes is the leading nonprofit organization dedicated to improving the health of babies by preventing birth defects, premature birth and infant mortality. My sister and her husband are participating in the March for Babies in honor of Ryan and are asking for your support. They will be walking in the Philadelphia area on April 26, 2009. If you are interested in sponsoring them, or making a donation to the March of Dimes, you can click here or click on the March of Dimes widget on the sidebar of my blog. One day, all babies will be born healthy. Together we can make a difference. Thanks for your support.

This is the most recent picture I have of the boys, taken in February 2009

Tuesday, March 10, 2009

Hearing Loss a la Flintstones

So.... I borrowed this great little video from Heather, who graciously shared it with me, so I could also post it on my blog. (check out the great picture on her blog - I love it!!!)

The video doesn't even get into the profound levels - where Lucas's residual hearing lies. With his cochlear implant, he has a "mild" loss, because he is testing at about 30 dB in the booth. He's not necessarily hearing with that amount of clarity right now, but that's eventually approximately how he'll hear, although probably more mechanic sounding, because it's an electronic signal. It's hard to describe, because only those who were born hearing, lost their hearing, and were then implanted can really describe the sound.

The cochlear implant is AMAZING technology. Without it, Lucas would have a very different future ahead of him. I give thanks every day for this opportunity.

Monday, March 9, 2009

Water Baby!

I'm trying to do activities with Lucas that I couldn't do if I were working right now. So... today we started swim lessons at the Lititz Rec Center! He's in the "Minnows" class, along with 5 other boys. We were supposed to start last week, but classes were canceled because of the snow. Here's a little video of my little man having fun in the water (I was enjoying myself too). My mom came along to take pictures and offer an extra pair of hands!

I thought the instructor did a great job... there were rubber duckies and watering cans to play with, some structured time, and some unstructured time. We did lots of singing too, *sigh*. I tried to sign some of the words, but I'm just not that good, and it's also tough to sign to your baby so that he can see the signs, while you're trying to keep him afloat. I couldn't help but cry a bit when we started singing and I knew that he had no idea. I know this is one of those times without sound, and I definitely want him to have the experience, but it's bittersweet, I guess.

The singing was fun though, and really drove many of our activities. We sang: Ring around the Rosie, The Wheels on the Bus, the ABC song (that was easy to sign with one hand!), Twinkle, Twinkle Little Star, and we chanted Motorboat and Humpty Dumpty. Each song/chant had little motions to go with it. We're going to take swim lessons until June, and then he'll be ready to move outside! Next on our activities list: lapsits at the local library... stay tuned!

Monday, March 2, 2009

Happy Faces Cards

We know Lucas is "hearing." He has been consistently responding to a variety of sounds, including all the ling sounds and some very soft sounds too. Two of the most amazing sounds he has responded to lately are a kissing noise from the book Bunny Kisses, and the noise that the bumble ball makes when turned on. He also continues to respond consistently to his name. My two biggest Lucas indulgences right now: calling his name and having him turn his head, and singing him to sleep (however awful I might sound...). Step one achieved: Lucas has sound.

Next, Lucas needs to make sense of this sound. He's working on it... he responds, although not consistently, to words/sounds like meow, light, various animal sounds, and, of course, his name. I have to keep reminding myself that he had NO visible access to sound before January 9, so he has been hearing for less than 2 months. It will take time for him to process these sounds. *SIGH*

Then he needs to learn to create the sounds. He is saying "mmmm" and "ahhhhh" and has started to make this lip-smacking noise, and say "rarararara" with that awful American "r" sound. That's the dorky linguist in me. Say it to yourself: not "are" but the sound for /r/. It's ugly, isn't it? The Spanish "r" is much nicer. At least he's adding to his repertoire of sounds...

So, in addition to presenting sounds for Lucas to hear, so that we can say "wow, good job turning to the sound!" (that's the easy part) we are trying to get him to recognize and produce other sounds. I'm always looking for fun toys to use with him, and I found these great "Happy Faces Cards" at Ollie's Bargain Outlet for $3. I stick my mouth and nose through the hole in the card and make the various corresponding animal sounds. Since the bunny doesn't make a sound, I repeatedly crinkle up my nose (Lucas thinks that's pretty hilarious). I'm still trying to figure out what a ladybug does or says, and I wish the dinosaur were a pterodactyl, because I can make a mean pterodactyl noise. One of these days, he will make the sound back to me when I hold it up to him... but at least for now, he looks really stinkin' cute!