Wednesday, July 29, 2009

Why a hearing aid and a CI?


I've been asked a few times why we're getting Lucas a hearing aid for his unimplanted ear. Today I got the hearing aid evaluation summary from CHOP, with a perfect explanation, so I thought I would share...

His left ear is not currently a candidate for sequential bilateral cochlear implantation due to surgical concerns. While a left ear hearing aid is not expected to match the benefit Lucas receives from his CI, current research demonstrates children with CIs can benefit from amplification in their contralateral ear. Benefits include potential for improved localization abilities, access to natural sound, greater ease of listening, improved performance in background noise, better music appreciation, as well as stimulation of his left auditory pathway.

Wow... SOOO well said. Love it.

When I think of bimodal kiddos, three very successful ones come to mind right away: Christian, Ben and Alexander.

I would still rather Lucas become bilateral instead of bimodal, but if he receives even one of the benefits above, it will be worth it.

Monday, July 27, 2009

stirring up some bad memories

Lucas at about this time last year


Today's local audiologist appointment went well. The reason why I'm referring to it as the local audi, is because it's not the same audi that we see for Lucas's regular audiological and CI needs. We travel 80 miles to CHOP to see him. We haven't been back to this local audiologist since we got Lucas's initial diagnosis on that fateful February day.

I felt pretty sick as soon as we entered the parking lot. Luckily, they've hired a new audi to work specifically with kids, so that was something different. But, she took us to the same room where Lucas had his first 2 ABRs. It really made me sick to my stomach to sit in that room.

I took advantage of the situation, and told her about our new support group and listserv, and asked whether she'd be willing to share the information with her pediatric families. She seemed excited about it. I also told her about the brochure we're working on, and she's also willing to provide that to new families.

I thought about it for awhile, then I did it. I told her about the most frustrating part of the whole initial diagnosis process - the fact that we didn't really understand that severe-profound hearing loss meant that he was deaf. I told her that even if it is hard, from her perspective, to share that with parents of newly diagnosed kids, I find it to be important and valuable. Of course, I think it's important for her to choose her words wisely, and be as sensitive as possible, but I feel that after using the term, severe-profound hearing loss, that it's appropriate and necessary to explain that it's the same thing as what's commonly known as being deaf. She told me that they tend not to use the word "deaf" at all, and thanked me for the feedback. It felt good to get it off my chest. And maybe she'll at least think about it next time before she hands over that heavy diagnosis.

On a lighter note, Lucas got fitted for 2 earmolds, and that was it. Easy appointment. We're going to try a skeleton earmold with his CI, to help keep it on his ear. If we don't like it, oh well. We also ordered the Phonak Naida in gray, to match his silver CI. Soon after the appointment, I got a call from Lucas's insurance company, stating that he'd been approved for the hearing aid. That was quick. Now we just wait until the earmolds return, which should be in about 2 weeks. Then, we'll see what kind of reactions we get!

Sunday, July 26, 2009

100th post


Wow! 100 posts!

Yesterday we drove to the CHOP CI picnic. So fun! There were so many CI kids running around. Unbelievable! All 3 companies were represented, with goodies from all. I finally got to meet Morgan and her Mommy and Jim from CiCircle. Altogether, it was just a great day. We've had quite an awesome month of meeting other CI kids. I'm so thankful to have had that opportunity!

Now, to finish up our rounds, we just have to head up to New York state to meet Nolan and Ben, up to Toronto to meet Ava, then over to Wisconsin to meet Peas and AJ, down to St. Louis to meet Danny, and way over to Northern California to meet little m and Landry. Oh yeah, and on our way back, we'll stop in Texas, to meet Baby K, Alabama to meet Gage and Brook, and Georgia to meet Shiloh. Is anyone up for another road trip? Is there anywhere else we should stop? :)

Tomorrow we head to the local audiologist about the hearing aid. I hope that goes well.

Thursday, July 23, 2009

9 months from now...


And no, I'm not pregnant! But, today's cardiology appointment went so well that we don't have to return for another 9 months. Yay!

We start each appointment with a heart echo. The last 3 times, Lucas has laid there nicely, while the technician does an ultrasound of his heart. Not today. Thankfully, she was still able to get the readings that she needed, but he was not a happy boy. From another room, you might have thought she was cutting open his heart, but really, she was just rubbing ultrasound jelly on his chest. It's such a tough age, because he's old enough to have fear, but not old to understand what's going on, even with an explanation. Hopefully it will go better next time.

Anyway, his heart is really the same, which is great news. The size of the left ventricle has not increased anymore, and since Lucas has grown, the proportions are just barely above the normal range. The doctor didn't even bother to get out a new heart diagram and draw what Lucas's heart looks like compared to a normal heart, because it's the same as last time.

We were done in under an hour, which is record time. And we don't go back until April. Can't beat that.

Wednesday, July 22, 2009

6 months post activation evaluations


Today was a pretty easy day, thankfully, except for the crazy mother who threatened to punch her child in the face and throw her shoe at him, if he didn't behave while she was scheduling another appointment. Oh my!

Lucas tested well in the booth today, responding to speech at 20-25 dB. Our audiologist tweaked his program a little bit, but mostly left it as it is. Unfortunately, he had to turn off 2 of Lucas's 22 electrodes, because they were misfiring. I'm very disappointed to hear that. However, with them turned off, he can probably hear better now, than with the electrodes misfiring. Our audi didn't seem concerned, although I was. He said sometimes they come back, so we'll wait and see.

We are officially getting a hearing aid for Lucas's left ear. Because CHOP is not a durable medical goods provider, they can't order and process a hearing aid for him, so we will be doing that closer to home. We will probably go with Phonak's Naida, a very high powered digital hearing aid. Although it will not give Lucas access to spoken language, it may help him with localization, and loud sounds. Again, I would rather be getting him a 2nd implant, but since that's not an option right now, we're doing the next best thing.

Phew. Lucas did pretty well in speech. And she appreciated my list, so I'm glad I made it to bring along. He was a little antsy, and didn't sit the whole time for her, but I guess that happens sometimes. We got some new ideas from her, so that's good! Instead of asking Lucas to "knock, knock, knock" to open a box, she suggested we mix it up, and have him outline a circle with his finger as we say "open." She also suggested a book from Cochlear called Speech Sounds, for more ideas. I'm always looking for new ideas!

She agrees that Lucas is progressing well. She reiterated that he needs to understand spoken language before he produces it. And, he's making strides with that every day. By this time, they're looking for about 10 spoken words or approximations, and he has 11. So, she really wants and expects him to make more progress in the next 3-6 months. The pressure's on.

Tuesday, July 21, 2009

the week of appointments


Today was Lucas's 18 month well baby visit (at 19 months). Because of his CI surgery, his 12 months immunizations were pushed back a month, also pushing back his 18 month immunizations. So, it was a pretty easy appointment. For once, I didn't have a long list of questions for our pediatrician. It felt kind of nice. Lucas is in the 5% for height and weight, so he's a little guy! But, he continues to gain weight and grow, so we're not worried. And, I think Lucas is done with shots for a little while, woo hoo!

Tomorrow, we head to CHOP. Despite the long drive, it will be an easy day, with just audiology and a speech evaluation. It makes me think back to last year, and all of the days when we had 3, 4 and even 5 appointments in one day. Tomorrow will be nothing like that. I'm actually looking forward to seeing where Lucas tests in the booth. I know that he is hearing more than he tested last time.

But, I'm worried about speech. There, I said it. Lucas is doing wonderfully, but how will he really measure up? In terms of speech, he's doing very little. So, I guess we'll wait and see what she has to say.

But, I decided to make a list of what he IS doing to bring along and share, to especially emphasize his receptive spoken language, since that seems to be his strength right now. At 19 months of age, and 6.5 months post activation...

* Lucas responds to a variety of sounds, from birds chirping to airplanes flying overhead, to dogs barking from afar.

* Lucas makes a variety of sounds, although mostly the same ones he was making at 16 months: mama, dada, baba, nana.

* Lucas will blow kisses, if he is either asked to blow a kiss, or hears a kissing sound.

* Lucas will cover his eyes with his hands if you say “peek-a-boo.”

* Lucas will throw his arms up in the air if you ask him “How big is Lucas? So big!”

* Lucas will identify the following body parts on himself and on a book, and sometimes on other people: eyes, nose, belly button.

* Lucas will gesture along to “the wheels on the bus” with the horn and wipers.

* Lucas will tap the horn on his car when prompted by “beep, beep.”

* Lucas will clap when prompted by "yay!"

* Lucas’s expressive words or approximations: mama, ahhhh – airplane, dada, bye bye, bown – down, hi, muh muh – milk, buhbuh – bubbles, ba – ball, uh – up, ow - meow

* Lucas’s expressive signs: milk, eat, more, light, mommy, cat/kitty/meow, uh-oh, please, cheese, what, bye-bye, dog, all done, hi, down, book, bed, hat, bath, rain, daddy, brush teeth, fish, bird, airplane, hot, ball, monkey, mouse [He will do all of these signs with verbal cues only.]

* Lucas understands and responds to the following spoken words by a show of excitement, pointing, etc., in addition to all of the words that he knows signs for: cracker, water, up, upstairs, downstairs, outside, hungry, point to the…, diaper, animal sounds, car/ride, walk, Oma [This list is not comprehensive.]

Our week of appointments ends on Thursday with a visit to the cardiologist, for his 6 month follow-up visit. Hopefully he will remain on monitor only status, and we will return in another 6 months. Expect some updates.

Monday, July 20, 2009

BTE experiment

Interestingly, all of the families we met this weekend chose Cochlear Corp. for their implant brand. And they all use the babyworn cord option in a variety of processor colors. And all but 2 of the kids were boys between 15 & 19 months. There were lots of little boys running (I mean crawling) around!

Anyway... Lucas has had a pretty nasty diaper rash this week, so I was giving his hiney some nudey time to give the rash some air. Because I had nowhere to attach his babyworn cord, I decided to try out the BTE and see how it worked. I kind of like it! And his ears seem to be sturdy enough. The only thing I don't like, is that when he does pull it off, or it falls off, it's not attached to him anywhere. But, I can get a critter clip too. I also decided it was time to change the mic cover, so we went a little *crazy* (ha!) and chose green, instead of silver.


He also enjoyed being able to wear it with his swimming trunks while we were playing outside at Oma's house. He even went through the sprinkler with it on!


But, we took it off to splash in the pool with his cousin. We were taking no chances!

Part of the secret is wig tape. Landry has been doing this since the beginning! We'll see how long it lasts though. We may be back to the babyworn soon. It works well for us too. I just wanted to try something different!

Sunday, July 19, 2009

BW picnic and more

Yesterday was such a great day! We packed up the house (haha) and traveled to the Baltimore Washington area to meet some fellow cochlear implant families that we've met through this blog, and the cicircle listserv. We actually don't live in the area, but close enough to drive to meet other CI kids. It only took us about an hour and a half. Not too bad.

We got to meet Jodi and Jordan, Tammy and Aiden, Marny, Jen and George, and a few other great families! Jodi is definitely as cool in person as she is on her blog, and so are her kids! She had a special connection, and all of the kids got to meet Batman, Robin and even the batmobile! Lucas wasn't too sure about Batman though.... Thanks for that, Jodi!



After the picnic, we spent the rest of the day with Tammy and her family. I swear I felt like I've known her for a long time, and we just had the best time together. We've been in touch since last June, when we found each other's blogs through blog networks. Aiden is just a few months younger than Lucas, and we've been going through this whole process together. Our little men finally got to meet, and boy did they have a blast! Our hubbies got to meet too. What a great guy Tammy is married to! We thoroughly enjoyed both of their company.




They're so much alike. They have the same hair color, same eye color, they're about the same age and height/weight. Aiden's sister did a double take at one point, because she thought Lucas was Aiden for a second! They also are both into everything, and climbing everywhere. And they're both so outgoing and full of personality.


Isn't Aiden such a cutie?

Tammy & Lucas


Last summer, Tammy and I talked about how one day we would have a toast to our boys, with a great tasting Dutch beer (in honor of the poem, Welcome to Holland, which helped us get through the beginning stages of our journey). We settled for Belgian beer... close enough.

Thanks for a great day, Tammy! I hope we can get together again soon!

Tuesday, July 14, 2009

And he walks, almost...

Take a look at this! At 18.5 months, Lucas is kind of walking. He still prefers to crawl, but if we stand him up and help him get his balance, he's off for 10 steps or so!!! I can really only minimally express through mere words on this blog how absolutely, positively ecstatic this makes me. Really.

blog friends in the park

Wow, how exciting today was! During our trip to Columbus, we met up with some blog friends who live in the area! We met Lily (and her mom) and Allison (and her mom, dad, and 2 brothers). We almost met Drew too, but we missed them by a day!

Our meeting at the park was really fun. All 3 kids are at different stages of the journey. Allison is 6, Lucas has been activated for 6 months, and Lily will be implanted in just a few weeks. We shared our experiences of diagnosis, and the milestones and challenges we've encountered so far. Lily's mom and I got to see a real live, very successful older CI child, and it was really amazing.

Ultimately, we met for the same reason that we read each other's blogs and offer support. We just get each other, and there's no explanation needed. As Nate said when we left the park... "You guys really acted like you already knew each other." Our experiences bring us together as if we've known each other for years.

Thanks for a great day. So glad we could meet you all!

Monday, July 13, 2009

Zoos of North America Tour (hehehe)

It's funny... I posted on facebook today about how much I loved our visit to today's zoo. My friend, Laurie, commented "Are you on the Zoos of North America Tour?" It gave me a good chuckle, and hence the name of the post. Our latest stop on our "zoos of North America Tour" was at Jack Hanna's amazing zoo in Columbus, OH... the Columbus Zoo. It is by far the best of the 4 zoos we've been to in the past 3 months. I think we're done for awhile though, so don't get too excited.

Lucas got to see even more different animals today! We also caught the new Adventure Safari show, which kept Lucas's attention for 20 minutes! I loved the fact that they adopted over 100 cats & dogs from local shelters to include in this show.

We got to meet the baby animals of the zoo too...


the 3 months old baby elephant, Beca


a week old baby silver langur, born orange

Lucas posed with a few animal statues...




He rode the carousel...

And went on a boat ride like a big boy.



Then he zonked out and we headed back to my Aunt Ruey's house, who we're visiting in Columbus.


What a day!! I highly recommend this zoo!!

Thursday, July 9, 2009

Baja Zoo


Our trip to Baja Fresh... I mean, the Philadelphia Zoo... was really fun yesterday! So glad we took advantage of our free teacher passes. What a neat zoo! It's apparently the first zoo in the US, and the shade from the beautiful old trees was much appreciated! Lucas got to spend time with Cousin Ryan, Aunt Kristin and Oma too! Baja Fresh on the way home was a nice treat!!!

We got to see a few different animals from Lake Tobias too: giraffes, gorillas, orangutans, polar bears, penguins and rhinos, among others. Lucas gets really excited when he sees the animals. It's so cute!

Lucas practiced his walking too. He's almost there, by the way. Yay! Finally! He's taking steps, even up to about 10 on his own. I'm pretty certain he will be really walking on his own by the end of the summer. It will be a very exciting day for me! This morning he was even trying to stand up from the floor without anything to hold on to. You can tell he really wants to walk, at the very least. Go Lucas!


The Children's Zoo is especially fun there! It's more than just a petting zoo! Lucas got to sit on a tractor with Aunt Kristin... oooooh!

And lastly, no trip in southeastern Pennsylvania would be complete without some plain people. The Amish like to visit the zoo too!


Tuesday, July 7, 2009

Lions & Tigers & Bears, Oh My!

lions &

tigers &

bears, oh my!

Yesterday we visited Lake Tobias Wildlife Park, located in Halifax, PA, just north of Harrisburg. What a hidden gem! Seriously, if you live anywhere close to Central PA, or are traveling through the area, make this a stop on your list. It's inexpensive when it comes to zoos, and the variety of animals is impressive. You can see lions, tigers, bears, kangaroos, alligators, monkeys, llamas, camels, ostriches, among many others. Maybe I'm just easily amused.

The highlight of the park is definitely the safari tour. They take old school buses, chop the tops off, and paint them to create safari buses. Tour guides take you on a 45 minute ride across 150 acres of rolling land where you see herds of wild and exotic animals from around the world. Lucas was dressed for the safari, with khakis, and a bucket hat. We also had the best seats in the house, right up front, thanks to our friends, Aaron & Megan, who invited us! Megan's grandfather actually started the park, and her grandmother still lives on the premises.
Lucas is on the lookout...

This longhorn got up close and personal with Lucas on the bus!

There's a petting zoo and a reptile show to see too. Check out the cool signs hung up around the park...


Lucas learned the sign for monkey while we were there, yay! Tomorrow we're off to the Philadelphia Zoo. We got free teacher passes for the summer, so we're taking advantage of it!

Friday, July 3, 2009

Cheerios to the rescue!

As I was putting Lucas to bed last night, I heard it pounding like mad against the window. The rain, that is. Perfect timing too, when Nate wasn't home, and I couldn't save our porch from the torrential downpour. It made it 6 feet horizontally, the whole way into the toy box. Needless to say, everything was soaked, and we didn't play on the porch this morning.

play porch paradise, when dry


So, we played inside instead. Lucas quickly found his sand toys (thank goodness Aunt Kristin cleaned them before we left the beach). As soon as he picked up the orange shovel, he crawled over to the cat food. Then he came back, got the gray shovel and went back. "Hmmm," I thought, "what could he be doing?" And this is what I discovered.


Yep, he was digging with his sand shovels in the cat food. Lovely. We really need to get this boy a sandbox.

I decided that I needed to find something else for him to dig in, so I got out a big plastic storage container and some cheerios.


You can tell by his cat-food-eating-grin, that he's pretty excited by this. But, with only one container, he wanted to transfer the cheerios with his shovels into the cat food dishes. So, I got out a second container.


Much better. So, we spent a good 1/2 hour shoveling cheerios back and forth between 2 plastic containers. It was a great language opportunity too... shovel, scoop, pour. The cheerios make great sounds in the container too. Lucas got sick of the shovel after awhile, and...


he decided to just use his hands. one.cheerio.at.a.time. That was amusing to watch. But, he still wanted to help feed the cats, even with two bowls and "cat food" of his own.



So I let him use his sand shovel to scoop real cat food into their dish. Here's what SofĂ­a (named after the queen of Spain) had to say about the whole thing...


What a curiously creative little boy that Lucas is! I just love him to pieces!