Friday, June 26, 2009

Crossing fingers

Yesterday was Kale's 2nd surgery and so far, so good! They took him around 7:30 and they were done around 9:30. The nurses brought him back to us between 10:45-11:00 and we left about an hour and a half later. A very long morning, but somehow we all survived! Maile stayed with Mike's parents which was a lifesaver--she would have been bored and miserable had she gone with us. Big thanks to them!!!

Kale looks so good right now! Dr. Scruggs came and talked to us for a good fifteen minutes after the surgery while Kale was still in recovery and answered any questions we had and did her best to explain things to us. She is very optimistic about everything and hopefully there won't be many problems with the expanders.

We got a couple of pics of us with Kale before they took him to the OR. Please excuse my hot mess self--I was going on only 4 hours of sleep from the night before (just couldn't sleep).

And here is our tough baby boy after surgery:

He was super fussy for a while--of course. And he fussed and cried a bit the first hour of us driving back home. He eventually fell asleep for a good 2.5 hours and then woke up smiling and laughing, so yay! He has always had a bad habit of rubbing and pressing on his eyes so he's learning that doing that right now isn't such a great idea. The skin around his eyelids is starting to bruise a bit, but we were already warned that would happen. Eventually it'll go away and so will the puffiness. He has an appointment in 3 weeks and we'll know then when he needs to go back to have these expanders taken out and the next size up put in (there are only 3 sizes).

We're just gonna cross our fingers these expanders will stay put and do their job in expanding his eye socket space and lids.

Friday, June 19, 2009


You wanna know how you can tell when Kale is about to have surgery? A week before whatever surgery (this is his 3rd--2nd dealing with his eyes) I become an emotional wreck who is obsessed with Googling everything I can think of regarding his condition and the surgery taking place.

I've mentioned before how he's going to have surgery to reopen his left eye and how they are going to take out the conformer that is in his right eye. Then they are going to put these things called hydrogel expanders in. All I can remember the doctor saying about them is that there's a bit of "sewing" involved and that afterward his eyes will look "very angry". They'll look "very angry" for a while. Take that however you want.

Anyway, so I just want to know exactly what we're dealing with here. What do these hydrogel expanders look like? What will they look like when they're in? How is the procedure done? What's the recovery time like?

Luckily, I think my questions have been somewhat answered. If you go to that link, there is a brief but simple (enough) explanation of how they work and if you click the little red arrow under the picture you can see a few more pictures--if you can't handle looking at surgery of any kind, don't look at the rest of the pictures!!! It's really not that bad, but I don't know what anyone can and cannot handle. The last two pictures are the ones I like the best--a before and after of a child who has bilateral anophthalmia (no eyes) who had expanders put in. In the before picture his eyelids are tiny and narrow just like Kale's (although Kale's are a bit more severe) but in the after they look a lot wider.

I have read a lot of other parent's comments regarding having these expanders in and I am worried that Kale will rip them out. He's so mobile now and all over the place. He's always doing the hand pressing thing with his left eye, too which has me worried that we'll be making a trip back to UAB sooner than we're supposed to. I guess we'll just deal with that when/if that time comes.

Anyway. I'm just getting nervous. I know that's perfectly normal but he's my baby boy and I just want him to be okay.
Yesterday was a super busy water filled day. First I took Maile and Kale over to a friend's pool to cool off in this ridiculous heat. Maile just started swimming lessons this week and was eager to show me what she's learned so far (Daddy's the one who takes her). I really wasn't expecting to have Kale in the water--I just didn't think he'd be into it. I was soooo wrong! I sat on the steps of the pool with him on my lap and he splashed and splashed--he was in heaven! I cannot wait to take him again. The only downfall is that I can't get too much farther in the water with him because of the tubes in his ears--doc said we had to be very careful not to get water in his ears (bath time is always a challenge).

Later on that evening, I took Maile downtown to the Sunsets at Plaza de Luna (a.k.a down by Palafox Pier) to meet Barbie and play in the fountain with my same friend from earlier and her twin daughters. I'm happy to report that Barbie was very clean unlike a certain yellow sponge in square pants. She was super sweet, too and one hell of a sport. She stuck around for a loooong time and you could tell she was practically melting in that dress. But she never let on how miserable she really was! Go, Barbie!

I really expected Maile to crash and burn on the way home after such a busy day, but homegirl was in it to win it. Wish I could have said the same, I was exhausted! But she eventually went to bed right after telling me how much fun she had!

Braille mail

A couple of months ago, I submitted Kale's name in the 2009 Book Angel Program for Visually Impaired Children through the Seedling's website. The program donates two free books of your choice (you actually get to pick out four titles and they ship whichever two they have in stock at that time). Their online catalog is so overwhelming and I spent a lot of time browsing through titles. I eventually found four titles and figured it would be a while before we ever received anything. Well, a few weeks ago we got a package in the mail--with Kale's first two braille books! And they were the first two titles we wanted--Butterfly Kisses and Birthday Monsters.

I had no idea what to expect--I had never seen a book in braille before. And I don't exactly know how to read it, either (but I plan to learn!). But I was pleasantly surprised to find that they are just like any other books you would find in your local bookstore, but they print out the braille on this clear tape and put over the actual written out words. It's really cool!

Another great thing about Seedling's is that their titles are super affordable and are available for all ages. I'm sure we'll be using them again as Kale gets older. I have no clue where else I would go to find so many books in braille!