Wednesday, January 6, 2010

It's been a long December...

...and there's reason to believe that maybe this year will be better than the last.

Someone reminded me of that song recently and boy, does it fit.

2009 was rough--and so far 2010 isn't looking so hot, either. Another person suggested that we're just getting all the bad parts out of the way now so we can enjoy the rest of the year. I'm not holding my breath on that one, though.

Kale's surgery last month really took a toll on us. A week after having his last set of expanders put in, his left eye started to do some real funky stuff. A large crusty scab-like thing covered his entire eye and we had no clue why. We went back and forth with his doctor via telephone and e-mail, sending pictures and trying to figure out what the hell was going on. She had him on antibiotics in case it was an infection (although she didn't think that's what it was) and we just kind of had to sit and wait it out until his next appointment which was this past Monday (this wasn't because his doctor wasn't concerned, but because she was due to go on vacation and it was Christmas time). But the wait was awful. We couldn't let him "cry it out" in his crib like we had been doing because every time he cried, more of his eye would scab. Parts of it would start to fall off, but then once he cried for whatever reason, it would start to form that nastiness again. It was just no fun at all for any of us and Mike and I have been sleep deprived and grumpy (more so than usual, anyway).

Anyway. This Monday finally came and went and his doctor wanted to go ahead and schedule him for surgery the following morning. So yesterday morning, she cleaned all the funkiness from his eye and discovered that the expander was basically spitting itself out! It was pushing through his skin rather than through the incision! How awful, huh? My poor little guy has gone through so much crap and this was just the worst. So, Dr. Sruggs removed the implant and luckily his eye wasn't infected at all. There was a bit of skin from his "lid" that wasn't viable but it wasn't enough to require a skin graft (which was a concern). Whew! Instead, she put in a tiny conformer and sewed his eye back up and he looks like his old self again.

The part that sucks though is that it looks like we're going to have to start all over with his left eye and the expanders. All this time that the expander was rejecting itself, all the tissue that had been expanded over the last six months moved back into place and so all that space and progress that was made is pretty much gone. His right eye is fine, so I guess that's something. He should be able to start with a conformer in that eye soon.

Despite all of this, we did manage to have a good Christmas. Maile was sick during the entire Christmas break, but that didn't keep her from enjoying all of her gifts from family and from Santa. Kale has been loving all his toys--lots of noisy ones, haha. But it's all good. We're a super strong family and we can pretty much take on anything. It may not be easy, but it's possible.

I've got more to share, but I'll cut it here for now.

Here's hoping 2010 will get better...


Stella said...

Oh gosh, how tough. Poor little guy. I'm glad things are a bit better now. We are just now considering surgery to have expanders put in Stella's sockets - she is 18 months. Your story scares me a bit though. What kind of expanders are you using? We are thinking of silicone balls with Dr. Nunnery here in Indianapolis. Where do you live? Good luck with everything! Sounds like you are enjoying the good moments too. That's what I try to hold on to.

Monika said...

oh my goodness, December really has been rough :( (((hugs))) to all of you, and I hope 2010 is better for you guys!

kimishoe said...


I don't think you'll have the issues we had with the expanders. Kale also has something called isolated incomplete cryptophthalmos (I'm gonna blog about that in a little bit) which kept his eyelids from forming properly. He couldn't wear conformers to begin with b/c of it. So that's why we went the expander route. His left socket gave us problems after his very first surgery (with a conformer). It has nothing to do with the expanders themselves, just the fact that his left side has so many other issues. I have no doubt you all will be just fine. He's been using the hydrogel expanders that come in three sizes. This was the last set--never any problems until now. But again, not the fault of the expander. Just Kale's uncooperative left socket!

Stella said...

Aha. Thank you for providing a bit more information about Kale's situation and the expanders you are using.

- Pauline

sprinkles said...

OMG, poor Kale!

I'm not sure how I linked to your blog - maybe from CDAN? Anyways, I've been reading your blog ever since and keeping up on all the happenings. I gave you an award once too which you never posted. It was awhile ago, last year some time.

I truly hope everything from this point forward will be better for poor Kale. It sounds like that expander trying to push through his skin was probably quite painful. No one should ever have to deal with something like that, let alone a baby!

kimishoe said...

I never knew about the award, Sprinkles! I'm so sorry!

Yeah--I'm a daily reader of CDAN--have been for a few years, though I rarely ever comment. But, I love it!

Thanks for checking in--I'm going to try my hardest this year to pay more attention to everyone around me--blogosphere, included! I need to catch up on so many people, including you! Thanks, again!

Linda said...

I just want to give Kale a big hug! Poor baby has been through so much. But you know what? This just makes him stronger. Ya'll are such a great family. I wish only the best for ya'll. Hugs!