Ack!

Goodness, I'm slacking on the posts aren't I? I'm gonna chalk it up to being extremely self-involved. Is that okay?

Nah. Seriously--things have been busy as usual. I've got Kale meeting with his ITDS one day a week, and then he meets with his TVI twice a week. And starting in a week or so he'll be meeting with his OT (occupational therapist) on another day of the week. Right now, I'm just juggling the three days a week thing, but soon it'll be four and even though it's only in the morning--it takes up most of the first half of our day when I factor in getting Maile to school, getting Kale up and fed, and out the door (if it's one of those days). By the time it's over, he's down for a nap and once he wakes up it's time to go get Maile from school. The days will go by faster, that's for sure. And I'll actually have to get out of my pajamas!

Kale is having surgery this coming Tuesday. I am at the point now where I can't even keep track of what number this is. Thankfully it will only be on his right eye. His tiny conformer in his left eye (that was even stitched shut!) spit itself out a couple of weeks ago. After that, Mike and I decided to ask the doctor if we can just give that side a break. For some reason nothing is working out on that side and instead of once again putting something in there, whether it's another conformer or starting over with expanders again, we just want to leave it alone for now. Give it some time to heal. I did talk to Dr. Scruggs about it and she is completely on board with that idea. So that's a bit of a relief.

Kale's right side is okay--the skin seems to be thinning out a bit and we talked to Dr. Scruggs a few weeks ago about that when we met with her. She agreed that it looked like the expander underneath was pushing out a bit--but nothing like the nightmare that happened back in December. So the surgery on Tuesday is to remove the expander and put in a conformer with a very wide stem. The wide stem is to keep the skin of his "eyelids" from fusing back together. We'll see how that goes. I'm not trying to be pessimistic, but I honestly don't expect miracles anymore. Not that I ever really did. I just feel it's easier to expect the worst in these situations so we're not continuously let down.

Kale is doing great, though. He's crawling everywhere now! He is so freakin' funny, too. He makes silly faces or does silly things on purpose because he knows we'll laugh.

He is still singing all the time, he claps his hands and taps his feet to the rhythm and beats of songs. He talks all the time and can say a handful of things like "eat", "sissy", "uh-oh", "papa" (for my dad), "lolo/lola" (for my inlaws). He now knows where his hair and his nose are (we're working on the rest!). And Maile helps him "walk" everywhere around the house.

Speaking of Maile--my mini me turns six next month! So of course I had to take her to Target to pick out things she wants for her birthday.

I'm so excited. And sad. She's growing up so fast--but she has the sweetest, kindest heart of any little girl I have ever come across. Today she was telling Mike that when she grows up she's going to take care of Kale. How sweet is that? Hopefully one day when she's older she'll realize that we're doing everything that we can so that one day he can take care of himself. But I'm sure he'll appreciate the help and the love that we all have to give!

She is always doing something for somebody else. She brings home cards and pictures from school that she makes. She makes things for her teacher and for her friends. She's just a super crafty and talented little artist.

We had some "snow" here a week or two ago. I'd post pics of that, but you can't really tell from the photos I took with my phone that anything is going on. That's how heavy the "snowfall" was, haha. Actually, it was pretty cool to see it fall during the day. It's not something that actually happens much around here. But Maile and I got to see it and drive in it for the five minutes that it lasted. And that was good enough for us.

Mardi Gras here is a big deal. And Maile and I were able to take part in the parade once again thanks to the PNJ. We rode on the Moms Like Me float (we walked in the parade two years ago for the same group). It really was a lot of fun and while I expected the worst (See?--it's just what I do) it turned out to be a pretty awesome experience--even if it felt like the longest day ever! We both got to hang out with our friends and make a lot of people happy with beads and moon pies. Seriously...people go crazy for this stuff!

 

  

 

Once I have more time, I'll post some video. I've finally got a decent video application on my iPhone that will let me upload them to Facebook and send them to e-mail addresses so I'm slowly but surely getting them onto the computer. Of course, it'll probably take a good three hours to upload a 30 second video, so I gotta factor in that kind of time, so....

Yeah. Who knows when those videos will be up.

I'll try to update on Kale's surgery as soon as I can. In the meantime, try to enjoy the rest of February!