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.

Soon

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!

Summa, summa, summatime....

Okay, well. I don't know when the first day of summer officially starts but who cares? It's summertime!!!

Today was the last day of school for our area and I am so excited! Maile has been out of VPK for a bit now but now that everyone else's school age kids are out, we won't be so bored!

It is already so hot around here, though. Today we went to the park for a birthday party and everyone practically melted. But Maile had a blast playing with all of her little friends so that's all that matters. And I got to hang out with some pretty amazing mamas so I guess everyone wins. Yay!



I put Kale in a baby swing for the first time at the park. He loved it just like I thought he would. He wasn't even the slightest bit frightened--just acted like it was something he did everyday! He was too cute. He didn't get to swing for too long, though because of the rodent sized bumble bees and wasps buzzing around my head--I decided it was time to stop swinging. Try, if you can, to ignore the moldy swing. It looks so much worse seeing it now! Jeez! Maybe I'll be taking my shopping cart cover with me next time...





There are so many things to do now that summer is here. Yesterday evening I took Maile down to Plaza de Luna for some sunset thingie they have going on every Thursday. Different characters visit each week--yesterday it was a very dirty Spongebob. Seriously. Have these people never heard of spot cleaning? Dry cleaning? Cleaning in general? I mean, I guess the kids were impressed but all I wanted was to break out the anti-bacterial hand sanitizer and throw it on poor Spongebob. Ick. Anyway, it was cool other than that. There was a live band playing, the breeze was blowing and the kids were playing in the water fountain. I can't wait to go again.

There are a few other things I want to check out like Bands on the Beach--I have never gone to that but really want to this year now that Maile is so much bigger and I really think she'd enjoy it. I took her to the beach a couple of weeks ago with a friend of mine and her twin daughters while my parents watched Kale for me--we had such a great time. As for Kale going to the beach, I'm not ready for him to go for a long period of time yet. The boy is white, has super sensitive skin and I'm so afraid of sand getting sand in his eyes or something. Just not something I want to deal with yet. He did get his first taste of a swimming pool this past Monday--but wasn't really digging it. It was too cold for him and he started to cry as soon as his feet touched the water! Poor little guy.

A couple of days ago my mother-in-law took the kids and I out for a day of shopping at the Foley outlet. The place has been renovated and now has a great little playground for the kids complete with a carousel--which Maile just had to ride.




Not really sure what else the summer has in store for us. Maile has been super busy drawing, coloring and painting a lot.
That is supposed to be me and Mike--so in love. See the hearts? That's how you know.




I love that she's so into that kind of stuff; I used to be the same way. Hopefully she'll stick with it, though.
I can't believe in just three months she'll be starting kindergarten! Hmmmm....maybe I should register her, huh? That would probably be a good idea.

Until then...I'm gonna do my best to make this an amazing summer. The last one before my baby officially becomes a big girl...

Okay. I'm gonna go cry myself to sleep now.

Surgery #2 scheduled

Yesterday we met with Kale's ocularists again and also with his doctor/surgeon, Dr. Scruggs. Elise, one of the ocularists, tried once again to see if anything would fit into Kale's left eye--the one where the conformer had fallen out--and it was just not happening. Everything has retracted in size and now his eyelid looks like it did before he had surgery. Elise's father, Dr. Cox, decided to go ahead and just leave his right conformer in (it's been in since he had surgery a month ago) since it doesn't seem to be giving him any problems and doesn't look like it's going to come out like the other one did. Our meeting with them was very short and sweet and so we went to see Dr. Scruggs.

She took a look at his eye and told us what we already knew: he needs surgery again. Only this time, instead of putting in the conformers like before, our only option right now is to try hydrogel expanders. They'll be sewn in and their purpose is to expand his eyelids in size. They'll expand by water, but I'm not really sure yet how the water comes into play. That's one of the things I didn't think to ask while we were there, but did think to ask as we were already on our way back home. Figures. Anyway, the expanders will stay in for a couple of months (assuming they don't come out, which is always a possibility) and then he'll have to have surgery again to take them out and replace them with bigger ones. And then again...not sure how many times it'll have to take place, just depends on how well they work I guess.
Not too excited about more surgeries...but again. Necessity. We knew he'd have to have surgery again, just not for this. If this wasn't something that had to be done--if it was all just about him "looking normal"--I don't think I'd put Kale through all of this. No, wait. I know I wouldn't.

So that's it for now. I'm sooooo glad that Kale didn't have a rough time like his last visit. He only got upset for a minute yesterday when Elise tried to mess with his left eye, but that's it. Whew!

His surgery has a tentative date of June 25th--so a little over a month to go until then. Woo.Hoo.

Please, week. Be over soon.

We had to take a trip to UAB today. Yesterday we went to see a local ocularist (Kale's ocularist referred us) who tried unsuccessfully to put Kale's conformer back in. He even made a smaller one for him and that wouldn't go in. So our only choice was to go see Kale's ocularist today. We left early this morning and made it back earlier this evening. Talk about tired.

Anyway, today's visit was pretty unsuccessful, too. Kale's ocularist tried around ten different conformers, all shapes and sizes and nothing would go in. Apparently the inside of his eye retracted in size. One tiny conformer went in, but wouldn't stay put because his upper eyelid isn't formed very well (he's supposed to have surgery to fix that). We were there about an hour and Kale screamed and screamed. And I cried and cried. By the fifth conformer I was just silently begging for them to give up already because Kale was so upset (and so was I).

After they finally decided to stop trying they called up Dr. Scruggs--Kale's surgeon--to see what she wanted to do next. She had come by earlier in between surgeries to see how his eye looked and to check on us. I really, really like her. She called me twice yesterday to check on things and see what we could do before making the trip up there. Anyway, she's going to call us in a week and let us know the next step. For now, Kale won't be wearing a conformer on that side, but we have to do everything we can to make sure his eyelids stay clean and open. It was mentioned that surgery might have to take place again on his left eye to get a conformer back in. We'll know more in a week I guess.

Okay. I'm gonna go attempt to study a little more for a final I have in the morning.