Sunday, January 27, 2013

Even Snowmen Can Be Super Heroes!

One of Liam's favorite things to do at school is artwork. He comes home with piles and piles of masterpieces. I wish I could keep them all, but they don't make storage units big enough for that.  I did make sure I kept this one, though.  I'm pretty sure the batman was created by a rubber stamp, but I'm still giggling that it occurred to Liam to put it on his snowman. It's particularly funny because he has no idea who or what Batman even is.

Saturday, January 26, 2013

This Kid Can Party!

A couple of weeks ago, Liam got a birthday party invitation from a little boy in his Sunday school class. This is all new territory for us because Liam has never been invited anywhere with a friend before.  It's never even occurred to me to think that he could handle going to a birthday party.  As he handed me the invitation, the little boy's father asked if I thought Liam would like to go. Without thinking, I blurted out, "Sure! He'd really love that. We'll be there!!" 

I was pretty nervous about it, but had decided that I would go ahead and just stay with Liam at the party. I knew all the other kids' parents would be just dropping them off and leaving, but none of the other kids are Liam.  Liam has been doing so well and really enjoyed the two-week unit they did at school all about birthday parties.  I decided that it wasn't okay to let my worries about him limit his opportunity to go to the party.

I went and chose the little boy a gift that I knew Liam would have chosen if he'd had the chance to go with me and hoped it was a good choice.  Liam found the gift and immediately tried to bust into the packaging. Luckily I caught that in time and was able to put the package away until this afternoon.

I talked to him a little bit before the party and reminded him that it was Jack's birthday, not Liam's.  We talked about singing the song and playing games and he was pretty sure it was going to be so much fun.

We were the last to arrive, which I think was good because Liam was able to take cues from the other kids and sort of follow their lead.  He was more interested in the treasure trove of books on the bookshelf than the games, but I was able to keep him redirected most of the time.

Lunch was chicken nuggets, curly fries, and grapes. It's like the other mom read Liam's mind and put all his favorite treats on one plate for him.  He sat so well at the table, ate his little lunch, didn't spill his chocolate milk, and waited his turn to be served.  I was stunned. He didn't leave the table until he was invited to, which was a HUGE thing for him. 

After lunch, the kids all went downstairs where a few structured games were planned.  Liam was a little bit confused about the concept of the game, but managed to follow the others' lead and caught on.  He wasn't sure what the point was, but stayed on in his seat and did his best.  Even though he was a little bit confused, he did so well respecting the rules.  This was a giant accomplish for him. 

After a few games, it was time for cupcakes.  Liam is not a cupcake eater, which I was prepared for. He politely said thank you for his cupcake and carefully removed the coveted Batman ring from it before licking the icing and slipping it onto his finger. Then he handed me the cupcake. I couldn't let that sucker go to waste, so I made sure it was consumed. 

Then it was time for presents. The other mom told the kids to sit on the couch and that they could hand the birthday boy the gift they'd brought him when their name was called. Liam asked me to let him sit on my lap. Perfect!! That way I figured I could keep him from getting up and running for the gifts. The surprise was that I didn't have to hold him down. He sat happily on my lap and smiled as Jack opened each gift. He was the last one to give his gift, and I was nervous that he'd try to open it himself.  When his name was called, I reminded him which package was his and he ran over to hand it to Jack with a huge grin on his face before leaping back into my lap. Perfect!!! 

Finally it was time to go, and Liam willingly came to the door with me to get his shoes on and tell Jack's mom thank you for having him.  He happily got into the car and had a delightful rest of the day.

I know lots of kids go to birthday parties all the time.  For Liam, though, this is a milestone. This is something I never thought I'd see. From the simple fact that he was invited to his behavior and willingness to make good choices to the sheer joy on his face the whole time, this was a day I hope we don't soon forget.  And the best part?  Next time he gets a party invite, I can say "Yes! This kid CAN party!!".

Thursday, January 24, 2013

Liam's Left Ear

Liam on his October field trip to the pumpkin patch with his class

I think I blogged about Liam's right ear when we implanted it last year. He has little or no bony structure around his cochlea, so the implant floated out into the internal auditory canal where it ended up on his vestibular nerve. When that was activated, he lost all control over his body. That meant he needed to be explanted and then re-implanted to try and get the device to stay put. Because he doesn't have full cochleas and there was scarring from the first surgery, Liam only has eight out of twenty-four functioning electrodes in his right ear.  Clear as mud and up to speed with me now?  Okay.  Oh! And for the parent who is considering implanting their own child and is now reading this brief synopsis in complete horror, please note that Liam's anatomy is incredibly rare. I mean, like, freakishly rare.  This is not something that will likely happen to your child. Really.  And, in all honesty, I'd do it all again even knowing what I know. That's how much of a difference the cochlear implant has made in Liam's life. 

Even with only 8 working electrodes, Liam is making progress by leaps and bounds.  He has found his voice and his language and he is using it.  He is still difficult to understand out of context and struggles to be part of conversations that typical children his age can hold, but he is trying. His light bulb is on and he is working toward finding his way.

Because of his success with even a not-so-great implantation, his audiology team has been eager to implant the right ear for at least the last nine months.  We've been holding off for financial reasons and to look at our options.  Our ENT has found a specialist at NYU who has successfully implanted at least 6 other kids with rare anatomy similar (but not quite the same) to Liam's.  This doctor has created a method that will allow him to get all the electrodes in AND hold them in place.  There has also been some speculation that he might be able to explant the currently implanted right ear and redo the implantation to get even more electrodes in there.  The catch? We'd have to go to NYU to do it.

Liam's audiologist has been gently nudging me to just send off his scans and reports to this doctor just to see what he says. Who knows? Maybe he'll look at them and say that our ENT here did about as good a job as can be expected for Liam and tell us to stay put and just do the best we can to implant the left ear. We just don't know.  Well, we say that. The audiologist is pretty confident that this particular specialist will be able to do wonders for our little dude.

I finally relented and had the scan sent.  They tell me the doctor received them last week, and should be calling us to let us know what he's found.  It's a little nerve wracking. I know I want the best for him, but my heart just has all those "what if" questions in there.  Thank goodness for faith that things work out according to a higher plan!

And so we wait. And save our pennies. We're going to need a lot of them to get it done, but the plan is to have this little guy with hearing in both ears well before the end of this year. 

Wednesday, January 23, 2013

It's Time

I had sort of given up on my blogging after Raelyn's fund raiser (she has had her surgery, by the way, and it was VERY successful!!!!) because...well...I can't think of a reason other than I was lazy. I figured everyone who could possibly get anything out of my blog was my facebook friend already. I realized recently that facebook just isn't enough.  I will never be done Mommying these boys and their siblings. I will never be done on the journey of parenting deaf children.  I will always be on this path with them, always be learning with them, always be advocating for them, always be on the sidelines cheering them on, and always be learning from them. So, I'm back.  It's time really.  CJ and Liam are making progress at record pace, and I need to keep track of it for them and for me.  Sometimes when I feel like we're just not getting anywhere, I look back at old posts and realize just how far we've come. It's not a sprint. It's a marathon, and one I'm proud to be a part of.