Sunday, April 25, 2010

the talk

I guess it's more like an ongoing conversation of sorts, than "the talk". And no, I'm not talking about the birds and the bees. I'm referring to his ear. With every passing day, Lucas enters further and further into toddlerhood and heightened awareness of his surroundings. It's the right time to begin talking to him, however simply, about his cochlear implant.

It's no longer that Lucas wakes up and I put it on his head, like when he was first implanted. I ask him if he wants it first, and usually he asks for it first anyway. He gets that he can't access his world without it. He understands the difference between when he is and isn't wearing his CI. Whether he understands that as "hearing" or not, I'm not sure.

I want him to develop language to talk about his CI, and a basic understanding of what it is. When I'm wearing my glasses, I will often say "Mommy needs her glasses to see, just like you need your CI to hear." He understands his CI receptively as his "ear". When we're at the playground, we ask for him to hand us "his ear" right before he goes down the slide. He always willingly obliges. Recently though, I've taught him to say "CI". He hasn't used it spontaneously yet, but it will come. I decided "cochlear implant" is too long and technical right now (and he won't be able to pronounce it well anyway). I also decided that "ear", while cute and appropriate within our family, is not the right expressive word for him either. "CI" it will be, until he chooses another way of describing it for himself.

Speaking of spontaneous, Nate and I heard Lucas say "thank you" today, UNPROMPTED. I realize this is just a natural toddler milestone, but we're always extra excited when he reaches them. It made me think of this blogpost over at Hopeful Parents (great website, by the way). Not that I have any common experiences with this mother, but more that she got me thinking about how we constantly prompt as parents, and then they finally get it on their own. Saying "thank you" hasn't been a point of frustration for us or anything, but it's exciting that he produced it on his own.

How do you talk to your young toddler about his/her cochlear implant/hearing loss? What kinds of words do you use to describe it? I dread the day when Lucas asks me why no one else around him has a CI, or starts a conversation like this. Those are the days that I'm thankful that we do know a few kids locally around Lucas's age who have cochlear implants. I hope that his friend, Jack, and he will grow up to be good buddies. The first time that Jack had his cochlear implant and saw that Lucas has one too, he got really excited and signed "same". It made me cry.

Until then... his "CI" it will be. And I will continue to affirm that he is my special little boy with a special ear to help him hear. Oh yeah, and I'm still meeting that 500-a-day kiss quota.

Wednesday, April 21, 2010

Do you know the colors of our rainbow?

Every time I talk to Lucas about his colors, this song comes to mind: Colors of the Rainbow from Signing Time. I love it. I think it has a nice tune, and I think it's fun to sign the colors. Rachel Coleman (of Signing Time) is an amazing inspiration, and she writes a really great blog here.

Anyway, back to Lucas. He knows most of his colors now (except some of the more obscure ones). He likes to name the colors of objects. Sometimes he'll even say "not green, not blue, not white, not pink, it's purple." But, recently he has taken to naming the colors for objects one step further. The other morning when I woke him up before school (7 AM) to take him to Nate's mom's house for the day, he started listing car colors for several people in our family: me, Nate, Oma, Opa, Nanny, Granddad. And I was really blown away. I just had no idea that he stored that kind of information! He would probably list more, but two of his aunts' cars are silver, so I think he just ignores them, haha.

So, here it is. I had to prompt him a little, but you can definitely see the wheels turning! "Haha", by the way, is "grandma." That's one word that he can not say yet, so that is his approximation for it. Please excuse the nudy boy. It was one of those exceptionally warm spring days, and I was letting him enjoy it!! (*turn off the music player first*)

Thursday, April 8, 2010

Easter Egg fun

We celebrated a beautiful Easter weekend with family and great weather. Lucas was a good age this year to do Easter egg hunts. He has finally officially learned all of his colors, so it was an opportune time to work with colorful, plastic Easter eggs. We spent time with both sides of the family on Easter. Lucas had Easter egg hunts with my nephew, Ryan, and Nate's niece, Lydia. Lucas and Lydia matched too... how cute (thanks Aunt Sarah)! We also got to celebrate Oma's birthday!

He finally got to enjoy the candy after all that hunting!

The video is of Lucas on an Easter egg hunt with Ryan. Lucas had 12 yellow eggs to find and Ryan had 12 blue eggs to find. They were filled with M&M's, and Lucas liked them a little too much. :)

Saturday, April 3, 2010

not quite as expected...

Lucas woke up Tuesday morning with pink eye. Yes, my healthy boy, who has been illness-free since before Christmas, woke up the day before his long-scheduled thumb surgery with pink eye. Bringing bacteria & infection into the OR is not a great idea. Surgery was canceled, and the perfect timing that I had planned for was thrown away with it. Had it been a few days beforehand, we would have been good to go. What crappy luck. Can you tell I'm a little upset? Understatement. I don't know yet when surgery will be rescheduled. His surgeon only operates on Wednesday afternoons, and that's terribly inconvenient with a full-time work schedule. We might just wait until June now.

Yesterday we headed to CHOP for Lucas's 1-year post-CI evaluation. Yes, 15 months after activation. Why you might ask? Because we had to cancel because of snowmageddon, and this is the first we could reschedule. Thank goodness we didn't have to reschedule again because of pink eye (the pediatrician cleared us). Everything went well, and we even ran into Mikaela and her family! It was a little stressful, because Lucas had his own agenda all day, but he performed decently well for his speech eval, and we were able to get some booth test results. His audi changed his map a tad, and reported that electrodes 11 & 13 still need to stay deactivated, although no more need to be turned off (knock on wood). We head back in 3 months (right before we leave for LA) for an audio check.

On the bright side, during our doctor visit this week, we were able to get some tests/paperwork completed for our trip to JTC this summer! Lucas got his TB test, and I got copies of his immunization records. Now, Nate just has to get his TB test (because I already I have mine), and we'll be ready to spend July in sunny southern California. So excited! We're looking forward to meeting Nolan & family too, in addition to the program!!

We're enjoying the beautiful spring weather this Easter weekend. Monday we are headed back to CHOP for cardiology. This is our 9-month follow-up visit. We had to switch providers, because Penn State Hershey no longer accepts our public insurance. So, we are now going to see a cardiologist at CHOP. I've been wanting to migrate all of his specialists there anyway, so it kind of worked out. It will make future surgeries much easier for getting cardiac anesthesia clearance too, since for each of his surgeries so far, we had to get Hershey to fax his info to the surgeon, who then sent it to cardiac anesthesia for clearance. Now, they can just make a phone call. Luckily, we only have to go to the King of Prussia office, which is about 2/3 of the way to the main hospital. It cuts out an hour of round-trip travel time. Please pray for continued status quo with his heart condition. Maybe they won't want to see him back for a year!

So, although the week turned out to be not quite as expected, we're making the best of it! We look forward to spending time with family tomorrow! Happy Easter!