Monday, August 29, 2011

When You Find Out Who Your Friends Are

I've mentioned lots of times about the fact that CJ has always struggled with making friends his own age.  He does great with adults, probably because they speak slowly and clearly for him and are patient when he needs them to repeat what they say. Adults also tend to accept his quirkiness better than peers his own age.

Given the fact that he has to work so hard to make friends, it was a really big deal when he was invited to a birthday party for a little girl at church.  Regan is just a few months older than him, and your typical happy-go-lucky always smiling little girl.  She's about as cute as any kiddo could ever be, and she treats CJ like a regular kid.

CJ put a LOT of thought into what he wanted to get her for her birthday.  First he wanted to get her a talking parrot to sit on her shoulder, and then he wanted to get her some fish.  With a little encouragement in another direction, he finally settled on some lovely hairbands and a necklace with five rings in it. He was SO PROUD of his gift!  Byron and I were out of town on the day of the party, so we didn't get to hear how it went. He just told us he had a good day and didn't go too far into details.

On Saturday, I learned that CJ truly has a great friend in Regan.  We were at a mutual pool party to sort of bid the summer farewell, and she came running up to me and we had the following conversation:
Regan: Sister SuperMom, my mom said if it's okay with you, I can learn.
Me: Learn what?
Regan: Well, at my party CJ couldn't hear me because he had to take his ears off. I tried to tell him it was time for cake and presents, but I guess he didn't understand what I said.  Then,  he came over later and said, "What? You started without me?".  I think he was sad because he missed it.  Does he always have to take off his ears to swim?
Me: Well, he'll be able to get his new implant a little bit wet, but he'll usually have to take it all off for swimming.
Regan: Well, that's why I need to learn.
Me: Learn what?
R: Sign language! If I learn sign language, CJ will be able to understand me when we're at the pool and we can play together.
Me: Regan, if you want to learn sign language, I will teach you ANYTHING you want to know!
Regan: Yay! THANK YOU, Sister SuperMom!!!

This may seem like a simple conversation to some, but it was a really important conversation in terms of CJ's life.  He has a real friend. She noticed a need, and didn't just make fun of him for it.  Instead, she took it upon herself to do something to make it better.

It is truly a blessing when you find out who your friends are!

Friday, August 19, 2011

Our Big Announcement

So, Byron and I have been back and forth on this for a while. Sometimes we were fence sitting and other times we were both on the same page with one decision or another.  We thought it was going to happen back in January, but things fell through and the doctor said it was just bad timing and to think about what we wanted to do and get back to him.

We decided to start trying to make it happen again so that we could time it around the kids' (especially Liam and CJ's) school schedules, but we just couldn't ever get it right.  The timing would be off, or someone got hit with a fly ball which put us behind or...well, you get the idea.  And, we weren't putting the effort into it that we probably needed to in order to make it happen.  Finally, shortly before our trip to CT, we decided to really work hard on it every single day.  I kept track of dates and times and recorded all conversations and everything and just really even put a lot of prayer into it asking Heavenly Father to please let it happen if it was His plan for our family.

Finally I got the most amazing phone call from the doctor today. The test results were in and all the documentation was double checked, and it seems that there is going to be a new set of ears born into our family!!!  We don't know the exact date yet, but BOTH Liam and CJ have been approved for cochlear implants!!! This will be CJ's second, making him bilaterally implanted and it will be Liam's first. It's possible that we'll do both of Liam's ears at the same time.  The dr. needs to look at the MRI and CT scans from his hospital stay back in June.

Anyway, there you go. That's my little announcement. It's kind of a big deal. My boys are going to hear!!!!

Saturday, August 6, 2011

The Ultimate Boy Scout

Two sometimes humorous things about having Deaf children are that they are are often loud and that they can be very literal.  Sometimes this leads to frustration and confusion in conversations, but now and then, it leads to a really good laugh.  Yesterday, it was a pretty good least on my end of the conversation.

I took the kids with me to look for a backpack with wheels for CJ's to take to school.  He always drags his backpacks, which then leads to big holes in the bottom and the need to purchase a new one.  One of the stores we looked into was Target.  Due to the fact that it's tax free weekend for shopping for school supplies, the school was crowded as expected.

We managed to survive the whole shopping trip and made it to the check out line with no scars or battle wounds, which was a pretty impressive feat in itself.  Just as we were leaving, CJ noticed an elderly woman which must have led to a rapid series of thought processes that, in turn, led him to loudly blurt out "Mom, when I become a boy scout, I can help old ladies like her cross the street!".  I probably should have been embarrassed and corrected him by suggesting that we not call people old in public and loudly, but the seriousness on his face just made me smile with a little giggle inside and say simply  "Yep. You sure can."  His response to that: "I'm going to be a GREAT boy scout, Mom!"  Actually, I think he's right. He will be an amazing boy scout.

Friday, August 5, 2011

Liam's Exciting Pulmonology Update

Liam went to a routine pulmonology appointment yesterday, and I'll admit that I had high hopes going into it.   Can I just say that every single thing I'd hoped for AND MORE was met at this appointment?!?  It was amazing.  Brief, but wonderful all the same.

First of all, the biggest news. Liam has been declared free of his NEHI symptoms!!!!  He may develop asthma later on down the line as is common with NEHI kids, but I can deal with that. I'm a pro at asthma by now.  He also still has a little trouble coming out of anesthesia, but he goes inpatient for surgeries, so that will be fine as well.  The doctor and I had fully expected him to make many, many visits to doctors and hospitals throughout the winter, but he only went three times all year. One of those times was a follow-up to his sleep study.  I can totally handle that.  We are now down to just once a year to say hello unless something happens and he gets really sick.

I decided to take a risk and talk to the pulmonologist about Liam's cochlear implant surgery. It's been a royal pain getting it all set up, but it looks like we're finally almost there.  The ENT wanted to do one ear now and go back in later for the other ear because each surgery is three hours and he was afraid to have him under for a full six. The recovery is easier with just doing both at once, and it's what I really wanted so I asked the pulmonologist what he thought. He said that the ENT gets the final say because he has to feel comfortable doing it. BUT, he also said he'd call the ENT and recommend doing both ears at once.  This means Liam gets to be free of O2, free of constant doctor appointments, AND has a fighting chance at finding his voice and succeeding in the hearing world.