Wednesday, July 29, 2009
Monday, July 27, 2009
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
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? :)
Thursday, July 23, 2009
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
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.
Tuesday, July 21, 2009
Monday, July 20, 2009
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
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?
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
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
the 3 months old baby elephant, Beca
a week old baby silver langur, born orange
Lucas posed with a few animal statues...
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
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
bears, oh my!
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
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...