Tuesday, April 28, 2009

A sunny day in Philadelphia

I really wasn't looking forward to our visit to CHOP yesterday. I mean, the stress certainly isn't what it was last year at this time, but I just didn't want to go to Lucas's speech evaluation. He's making good progress, but I was afraid it wouldn't be up to par. But, it was "a sunny day in Philadelphia" like the post title reads. Not only was it 90 degrees and sunny, but it was a good visit.

He performed pretty well for the speech therapist, surprisingly. If there's one thing Lucas doesn't do well, it's perform on command, especially with vocalizing. At last month's eval, I came home with the goal for him to imitate 2 different vocal lengths. He doesn't really do that for me. I mean, he produces different vocal lengths, but not when prompted. Anyway, he did for her! So that was exciting! She sees it at least as an emerging skill, so we'll take that! She was also excited that we were able to make a list of 14 spoken words that he responds to receptively. Receptive language must come before spoken language, and we're definitely on our way there!!! It was quite clear to all of us (my mom came along too!), that he's made a lot of progress in the last month.

Here are some other things that he did for her:

1. He waved bye-bye when she said "wave bye-bye" (without waving herself)
2. He turned and looked at me two separate times, when she asked him to give an object to "mommy"
3. He began to pick up on the difference between "brush, brush, brush" and "mmmmm" when she used a toothbrush and a cookie with a Mickey Mouse doll
4. He responded quickly and consistently to all the Ling sounds

Then we met with audiology. He gave Lucas a new program, to see if we can increase his access to more soft sounds. He was responding in the booth again to spoken language at 25 dB. I also asked him to test Lucas's non-implanted ear for a hearing aid re-evaluation. It was very interesting that Lucas responded at 85 dB at 500 Hz (a lower frequency) and at 110 dB at the higher frequencies. He never did that before, ever. His responses were still consistent with severe-profound SNHL, but a bit better than previously noted. So... we're going to really try going bimodal (one CI, one HA). Nothing to lose! Just waiting to hear back about how to go about getting the HA through medical assistance. Lucas's other pair of HAs were loaners.

And... I requested copies of all of his records, so that we can actively seek that second opinion. I'm not giving up on the second implant yet!

Yes, it was a sunny day in Philadelphia!

Thursday, April 23, 2009

D/HOH preschool visit

Now that it's finally feeling like spring outside, I've begun to make my educational rounds. First stop: local deaf/hard of hearing preschool visit.

I would probably consider this to be Lucas's "default" placement. If we don't push for other options (regular preschool, reverse mainstream preschool, oral deaf school 70 miles away), this is where he will likely be placed. This classroom is run by our local Intermediate Unit, which takes care of the educational placement of all special needs children across our county until they turn 5 and transition to school. Because our area is relatively small, this classroom takes a Total Communication approach, to meet the needs of all of its students.

I want to first say that I really enjoyed my visit. The classroom is well organized, with a great student-teacher ratio, structured routines, and a generally happy atmosphere. The kids were very comfortable, and you could tell that they loved being there. That's important. I love the teacher there too, I think she's really great. It was also interesting to see older hearing impaired children, since my only norm is 16-month old Lucas.

I referred to the Preschool/Kindergarten Placement Checklist for Children who are Deaf and Hard of Hearing to conduct my evaluation, and I found the program to have some deficiencies in areas I and III. I wish not to go into too much detail, so as not to offend anyone involved reading this blog, but I was a bit disappointed in the physical environment of the classroom.

The children were really encouraged to use their voices as much as possible, but I still felt that sign was the overriding means of communication. And maybe that's what those children need. I found it not to be a particularly language rich environment for spoken language, and therefore not completely appropriate for an oral deaf child. For some children, I'm sure it's perfect though.

We'll see what it's like in another year, but at this point, I would venture to say that it will not be an appropriate placement for Lucas. Only time will tell.

Next week, I'm visiting the K-1 D/HOH classroom at a local elementary school, to see what the school-age environment is like.

Wednesday, April 22, 2009

"Ears to Hear" Club

When Lucas was first diagnosed, there were few, if any, local resources for me to tap. So, I started my own parent support group / playgroup for families with hearing impaired children. I started it about 2 months ago, by creating a flyer for our local teachers of the deaf to distribute and inviting all families to my home. No one came. So, I created another flyer, just advertising the group in general, and I got two responses!! The one mom and I met about 2 weeks ago for coffee, and she and I are meeting another mom tonight for drinks!

The mom I met 2 weeks ago has a little boy who is 2, and was just recently aided, after 6 months of difficulties. I'm really proud to say that I've helped her a bunch with getting him services, etc. I recommended CHOP to her, and within 3 weeks she had loaner hearing aids for him. When she told me that her son was not yet receiving speech (oh the horror! hehehe), I recommended our amazing speech therapist and told her the right channels to go through. They met for the first time on Monday! I'm happy to have helped someone else on the same journey, when so many have helped me so far.

The new mom we're meeting tonight has a little boy who is 4 with one CI. He's in a reverse mainstream preschool setting. She's EXACTLY the person I want to meet!!! I can't wait to learn so much from her!!

This is truly an answer to my prayers. My world was opened when I found this blog community, and the listservs, but I still yearn for one-on-one parent contact... and I finally have it!

We're going to try to get our boys together sometime soon! And, hopefully other parents will join us!

Tuesday, April 21, 2009

Do you hear that?

This is an exciting milestone... Lucas has begun to point to his ear when he hears something new, or when I ask: "do you hear that?" It has taken a little over 3 months, but it's here, and I'm thrilled!

Monday, April 20, 2009

talking on the phone...

Lucas's irresistibly yummy tootsies...

On the Pediatric Cochlear Implant Circle listserv (the MOST amazing CI parent community), my blog friend, Julia, wrote: "All the milestones that other parents take for granted -- for us, they bring such profound joy!" in response to the joy of CI activation and another child hearing sound for the very first time. Profound joy, indeed, that makes me think of the following story...

On Friday night, on my way home from a quick shopping trip, I called Nate to tell him I was on my way. He put me on speaker phone and instructed me to start talking to Lucas. He said that Lucas started getting really excited and looked everywhere for me. He then realized my voice was coming from the phone and examined it more closely. We certainly didn't have a conversation or anything, but my DEAF baby HEARD my VOICE, recognized it, and started looking for me.

It's definitely the little things that bring profound joy right now... things like that, that I will never take for granted with him. It also gives me hope that he WILL talk on the phone someday, just like Drew.

Sunday, April 19, 2009

new use for "happy faces cards"

I swear... it wasn't my idea! But, I was an accomplice...
They're almost as cute as Lucas, but not quite!

Sofia as a lamb...

Sebastian as a black cat! (hehehehe)

Sammy as a lion!

Thursday, April 16, 2009

Good day, sunshine!!

The sun finally started to shine today, after a few days of rain and many days of cool weather! It's amazing what sunshine and warm weather can do for one's spirit! Lucas and I spent the afternoon outside after his nap.

His favorite mode of transportation these days is his buggy (that I bought off of Craigslist for $10, btw). After we went for a ride today, he really didn't want to get out of his buggy. Watch and see:

He has really begun to express himself in this way when he is unhappy. Sometimes I think he throws a temper tantrum because he is 15 months old. Other times I think he throws a temper tantrum because he is still unable to properly communicate with me, although I'm trying my darnedest to give him ways to do so. And then other times, I think it's a combination of both. It will pass, and luckily the times are few and far between.

Then we played in the grass. Lucas has never really done this before, because he was still a little young last year, and couldn't sit by himself during the entire warm weather season. Anyway... he didn't mind sitting in it (in pants, of course), but he didn't want to put his hands in it at first. It was as if he was touching something yucky and sticky. But eventually, he gave in, and even let me lay him down in it. I look forward to more beautiful, spring days!!!

not quite sure...

ooooh... I can play with this stuff!

ummm... how does it taste?

this is kinda weird...

The sky is so beautiful... it even matches my eyes!

Wednesday, April 15, 2009

bottle-less baby with a new bad habit...

It's been exactly 1 week since Lucas has had a bottle. It sorta marks the end of infanthood. Last Wednesday I had dinner with some teacher friends who have a little girl who was born last St. Patty's Day. We got talking and Lisa mentioned that she took bottles away when Lindsey turned 1, because she decided if she didn't do it then, it would only get harder. So, I guess she inspired me to take away Lucas's nighttime bottle. It actually went pretty well too, and he didn't seem to miss it too much. I will certainly miss gazing into his eyes as he intently drinks and gazes back into mine though. Now, if he would just start to toddle, I could officially call him a toddler...

Now for the "bad habit" Lucas picked up today. He learned a new sign, that's not really a sign. *SIGH* I'm honestly getting a little tired of waiting for Lucas to say a real word. His sound repertoire has expanded to: mmmm, aaaah, mamama, bababa, dadada, and some guttural sounds. That's great and all, but I want a word. So, today I was trying to get him to expand upon "mmmmm" and say "milk" (for which he already knows the sign). So, I was pointing to my mouth to draw attention to my lips and how I was forming the word. Instead of attempting to say "milk" he pointed to his mouth (of course). Go figure. He won't sign any of the other 50 some odd signs I present to him in a day, like all done, down, ball, and numerous animal signs. Instead he picked up a gesture that was not intended as a sign. AAAAAAHH!

Here are some Lucas updates:

Lucas's (confirmed) receptive spoken language has expanded to: Lucas, meow, milk, cracker, no, Mommy, light, grape, book, and knock, knock, knock. I'm sure he understands more that that, but those are the words that he points to or shows excitement for when I say them. He has also been doing this really cute sign for "what?" that we got a great picture of! He signs it several times a day when he's confused or wants to express that he doesn't know something. It's great... I love it!

Lucas is still not walking, but continues to make strides all the time. He's cruising more easily, can sometimes walk with a one-handed assist, and stood for about 3 seconds on his own the other day. I'd really like for him to be walking by summer, and if he's not walking by the end of August when I return to work, I will be very, very upset. We'll just leave it at that for now.

I just love to watch Lucas play. He likes to play knock, knock. If he wants a box open, and I say "knock, knock, knock" he'll pound three times for me to open it. He has also begun to reverse into your lap with a toy or a book in his hand. Sometimes he will drag a big toy the whole way across the room. Too cute for words!

Lastly, I read this post from Jazzie and Tahlia's mom tonight and was inspired to do a little picture creating myself. Click here to create your own masterpieces!

Sunday, April 12, 2009

Happy Easter!

We had a great day full of fun, food, and family. Hope yours was great too!

Friday, April 10, 2009

Bilateral Implantation for Lucas?

No, not right now.

We headed to CHOP again today. I'm so glad that our visits are thinning out a bit in comparison with his first year of life. It's 85 miles each way, and the trip is often anti-climactic, like today. I also dislike visiting the ENT - I'd much rather go to audiology, because they actually run on time! We drove an hour and a half, then waited for an hour in the waiting room, then another half an hour in the exam room, only to visit with the doctor for a total of 10 minutes, and drive another hour and a half home. Very anti-climactic.

The one thing I look forward to though is eating at Baja Fresh. It's not exactly on the way home, but we make it part of the way home. It's fresh, fast, Mexican heaven, if you ask me. In our po-dunk town, we don't have such luxuries, but rather Pennsylvania Dutch home cookin' everywhere you look. Okay - let's be fair - there's SOME good food - it's not all dutchy, but I still wish we had a Baja Fresh.

Let's move on to the topic at hand. I would like for Lucas to go bilateral. I mean, I would REALLY, REALLY, REALLY, REAAALLLYY like for Lucas to go bilateral. Audiologically, he's a textbook candidate. He gets NO benefit from hearing aids. I mean NO RESPONSES in the booth, even with hearing aids. I'm talking CI activation day was the FIRST time he reacted to any kind of sound, ever. Get my drift? It's kind of a no-brainer from that standpoint.

But, medically it's another story. Because of the cochlear abnormality caused by his Enlarged Vestibular Aqueducts, Lucas was at risk for a CSF (Cerebral Spinal Fluid) gusher in the first surgery. Bingo - leak occurred. Thank goodness Dr. K was able to stop it and pack it. Apparently it was more severe than he let on, because he was really happy to see Lucas well on activation day. About 10 minutes before Lucas was activated, he told us that he probably would never make Lucas bilateral because of the gusher (there should have been more time between appointments, but of course, ENT was running late). Let's just say that I was a bit upset at the beginning of activation (Nate will tell you that is an understatement). I was not prepared to hear that. I was expecting "let's schedule bilateral implantation in a few months", and I got "probably never."

I just won't take no for an answer though. So, today we discussed it again. He wasn't quite as adamant about never implanting, but he doesn't want to do it just yet. He wants to see how Lucas does with the first implant. Okay, fair... better than never! So, we're going to have to wait and see how he does with one, to make a better decision about how he would do with two. And although I'm not interested in just playing "wait and see", I'm also not about to risk his life for a second implant, and that's exactly what we would be doing.

So, we are going to try the bimodal thing (one CI, one HA), even if hearing aids were not previously beneficial . In my opinion, we have nothing to lose. Maybe the sound was simply too quiet before, and now that he KNOWS what sound is, maybe he'll think "ooohh, that's what that was....!" We want to continue to stimulate the auditory nerve, in case going bilateral does become an option in the future.

I'm prepared to get a second opinion, in fact I know exactly from whom I would seek that second opinion. Hint, hint: Aiden. But, Dr. K is the one I'd want performing the surgery since he knows exactly what he's up against. I believe that two implants are certainly better than one, but right now I need to be thankful for one. And thankful we truly are. Lucas is doing fantastic, having jumped 100+ decibels, babbling, and responding to spoken language. Hearing loss is not life threatening, but getting Lucas a second implant could be.

So, one implant it is. We don't really have a choice. *SIGH*

Sunday, April 5, 2009

First Haircut

Lucas's hair was becoming a little unruly in some spots, so we decided to trim it yesterday. It's still pretty short on top, but long in the back. The right side, where his implant is, is still pretty short from surgery. But, the left side just hung wispy over his ears. And, it looked like he was getting a mullet in the back, and I wanted nothing to do with that! Let's just say I know why I'm not a hair stylist, and next time we'll leave it up to the professionals!

before the haircut

first snip

Oma helped keep his head still

distraction worked best!

no more mullet!

Wednesday, April 1, 2009

ahhhh airplane

I guess it's been awhile. It's not that exciting things aren't happening all the time either! Lucas continues to amaze us everyday with his receptive spoken language. He's also starting to associate objects with vocal sounds. He has begun to say "ahhhhhh" with his airplane, which is one of the learn to listen sounds, and one of the sounds I say to him constantly. Here's a short video illustrating that (he gets a little excited at the end!):

He also seems to make a "mi mi mi" sound when he wants his milk. The last few days we've been hearing an emergence of /d/ - not quite dadadada, but I think it will be there soon.

Lastly - Nate and I decided last night that it will NEVER get old to watch our deaf son dance to music every time he hears it. It's always unprompted too. He dances because he HEARS the music! Amazing... I never thought I'd see that day. It makes me cry just thinking about it. Enjoy this fun little video too! (it's not captioned, because there's no talking, just music and "dancing!")