Busy Bees

We've been pretty busy lately. From appointments, birthday parties, festivals, to just random spring-like days--we've been keeping ourselves occupied.

Kale started visiting his OT (occupational therapist) about a month or so ago. So far, things are going well. It was taking him a good ten minutes or so to warm up to her, but now it's taking less and less time so that's good. He gets thirty minutes one day a week with her which doesn't seem like much but the time is utilized well. We go to her office for the sessions which is cool. She has this swing she sits on with Kale in her lap--it really calms him down when he's having one of his "Get me outta here" moments. She tries to get him to do other things while in the swing--in the pic below he's playing a little piano with self-made textured keys (we have one at home, too).

She is trying to get him used to touching different textures. The main focus right now is getting him to feed himself with his hands and with a spoon. Last week, out of nowhere he started picking up his little snack foods and eating them. I honestly don't know if I can credit his OT for that because we really haven't done much yet with her but she was very, very happy when I told her about it yesterday.

Twice a week, his TVI comes over. She sings and plays with him and talks with me about all kinds of interesting things related to the blind and visually impaired.

A few days ago she had us go up to the middle school nearby where she has a visually impaired student, Deesha, who wanted to give something to Kale. Becky (his TVI) and Deesha had made Kale some little texture shaped books. So we spent about two hours over there and Kale had a great time! So did Deesha who is such a smart young lady--with some amazing manners! She could teach us all a few things!

It really was great meeting another child who is visually impaired and getting to watch her use her cane walking through the school hallways. It definitely makes me feel a bit more at ease when I think about Kale's future in public school.

Spring is somewhat in the air. I'd say at least one or two days a week we can get around without wearing a long-sleeved shirt.

We did get to go to an awesome Yo! Gabba Gabba birthday party for a friend's daughter. My friend did it all--and did such a kick-butt job. Here's a pick of Maile posing with Plex--which my friend made herself! How talented, huh?

All of the other Gabba characters were there--it really was such a cool party to attend (thanks, Diedra!).

Another cool thing we did this year, which I'm hoping is turning into an annual thing, was go to the Renaissance Fair. We went last year and had a blast. So we went again this year--and had a good time once again! I think my favorite part is watching Maile get her face painted and seeing the end result. Definitely better than anything I've ever done!

Oh! I almost forgot! Maile got her ears pierced! She did it on the 12th--the day before her birthday party. She had been going back and forth on whether she wanted to do it. It's been something I have always told her could be her decision. We have gone to the mall a few times after her telling me she wanted to do it, but then she'd get scared and decide not to do it. Which is fine--I didn't mind. But she finally did it! Here she is showing them off later that evening.

Yes, there were tears--but there was also a lollipop from the girls who did it (and she knew this from watching another little girl get her ears done before her) so I think that's what made her finally decide to do it. I was and always am very proud of her!

And finally--Maile is going back and forth on something else. Tennis. My 14 y.o. niece (who happens to have the same birthday as Maile) just started tennis so Maile wanted to, too. Until she tried it the other day. And decided she doesn't like to get sweaty. I tried to explain to her that she gets sweaty when she plays outside or goes to the park or the beach....I think she was just super grumpy and tired because she had just finished running in PE before getting out of school. So we'll see. Luckily, the sessions are pay as you go! Here are some pics my mother-in-law took (I was home with Kale).

Okay. Well, that should wrap things up for another week or so. We have Maile's spring break next week and Mike is off so we're going to try and get some quality family time in. I'm thinking the zoo, for sure. I wonder how Kale will do with that? He does have an appointment next week at UAB. Not really too sure what is going to happen with that. I'm gonna just avoid thinking about it for now.

Later, all!

Baby gurrl

Maile turned six on the 16th!!! My itty bitty is getting to be, well...not so itty bitty. Make it stop!!!


Her birthday party was a success, despite the fact that I had a mini freakout about an hour before it started. Mike ended up having to work that day so I had my hands full. My mother-in-law came over three hours early to help out but Kale was so fussy from teething, most of the time we took turns taking care of him! But it turned out great and Maile says that it was the best birthday ever!

I had gone to Target and raided their dollar bins and bought all the Easter hats, purses and gloves I could to give to the girls. I stuffed the purses with candy jewelery and other sugary treats. I made tiny cucumber sandwiches, peanut butter and marshmallow sandwiches and served pink lemonade and sherbert punch. Outside we had set up tables for the girls to sit and eat at, we had a friends jumpy house set up and we also put up a long piece of that brown painter's paper along the fence for the girls to draw and write on.









We played a couple of games, too. I had the girls race with books on their head and I also had them play a game I saw once at a baby shower that involved a blindfold, lots of cotton balls and a large spoon. They loved it! The same friend who let us borrow the bounce house let us borrow her two tubs of dress-up clothes and I put those together with what Maile already had and the girls were dressed up the entire time in one outfit or another.





My mom had bought a large bead kit and was helping the girls outside make necklaces and bracelets.





Can't forget a picture of the cake--from The Cake Shop. They did an awesome job--Maile picked it out and it was delicious.

I did feel a bit bad for making it a girls only type of party, but you could totally tell the difference from her party this year and the ones before. I did keep Maile's bedroom off limits (and locked, haha) but the girls were great! I know as she gets older she is going to be more and more picky about who she wants to invite so I guess I just wanted to control as much as I could with this party. Totally guilty, but it did turn out great and she never complained about a thing once.

Back to the beginning?

Ugh.

Well, Kale's surgery last month went okay. His left eye was left alone and his right one was fitted with a conformer with a large stem sticking out. I was gonna give it two weeks before it came out--which turned out to be one week too many. In the midst of a tantrum, the thing just popped out. I just knew it would! Maaaaan. I'd be lying if I told you it didn't bother me. I actually ended up in tears. Why? Because now we're right back where we started one year ago.

I called his doctor the next day, she was busy so I talked to her nurse (or tech--I can never remember what it is she calls herself...her name is Stacey--that much I do know). Anyway, Stacey said that Dr. S would be out the next week but suggested we try and meet with the ocularist to see if they could fit something back in there. Yeah, totally not gonna happen is pretty much what I told her. The night that the conformer fell out, his "lids" were separated. By morning, they were sealed shut again. It probably didn't help that he was sick, either. Anyway, so we won't be meeting with anyone until the end of the month.

I'm trying not to think about it. It makes my whole body ache when I do--thinking about "what now?"--what the next move is. Because we really honestly just don't know what to do. It's so frustrating. I do know that Kale is much happier now that he's free of anything being in his eyes. For the past year it's been conformer and expanders. And now he has nothing and he looks great! I know it shouldn't matter how he looks, but if you know Kale, you know he's always got some sort of funkiness going on. Crustiness and things like that always around his eye. Now? None of that.

Spring Break is coming up for Maile in a week and Mike is hoping to be off during that time. I suggested to Mike today that we should go and have our first professional family picture done. We have never had one done of all of us and the one time we were going to take cute ones of Kale and Maile together at Christmas, we couldn't because he had that scary looking thing going on on his left eye. So I think we're going to take advantage of the time we have with him not having to have any surgeries and having no type of conformer or expander and just do it.

We have been going back and forth on whether or not to get a second opinion. As for where we'd get that from? Hell if we know. Kale's condition is so freakin' rare we don't know that anyone will even know where to begin. It sucks. Ugh....the body aches are coming just by thinking about it. I think we'll just see how his next appointment goes, see what his doc says and decide from there what to do. It would just be so nice to have someone else in our shoes--or someone who has been there to give us advice.

Aiight. That's it for now. I'll be back in a couple of days to post about Maile's 6th birthday party! She turned six this past Tuesday--I cannot believe it.

Until then.