Two and a half months since my last post. Man. I've been slacking yet again.

But I have good reasons! Maile started first grade, Kale started walking. I started working again (just a part-time gig slinging coffee). Mike is still working hard like he always does.

We've all been pretty busy. The summer flew by and I feel kind of crappy that we didn't get to do all the things I wanted us to do. But it was so freakin' hot! Hell, it still is.

Next week is Kale's 2nd birthday. Kind of a big deal to us all since last year he couldn't even enjoy his cake for his first birthday. This year there should be no problems. I've been trying to get in some practice with feeding him cupcakes (Okay, fine. We share.) He's not really into getting his hands sticky and dirty, but he can eat them no problem which is more than he could do last year.

He did start walking a couple of months ago and now he's all over the house. I've gotten better at letting him explore on his own without freaking out every second. As long as I have all the doors closed, I'll let him roam around while I try to get some things done around the house. It is so cool to watch him, though. He knows where everything is, it's like he has this map in his head. He just puts his arms and hands out for the wall/chair/couch/cabinet  that he knows is right there. Sure, he's off a little bit and bumps his head on occasion, but he's doing great.

His TVI (teacher of visual impairments), Ms. Becky, started back visiting about a week or so ago. She was off for the summer so she came back to him walking and talking more and was so excited to see him. He even gave her (and me) a little treat by playing recognizable songs on the giant keyboard we keep on the floor. He played "Joyful, Joyful" and Ms. Becky almost had a heart attack. He can also play "Twinkle, Twinkle" and "Mary Had a Little Lamb". I'm not joking. The boy isn't yet two and is already playing things by ear. My little musical genius.

Maile is enjoying first grade. I am finally understanding why my parents (or any parent) would get onto me about the importance of good grades. As a kid/teenager I guess I just didn't get it. But here I am, every day studying with her and trying to make it fun and enjoyable, wanting her to get A's but letting her know that I will be happy with whatever grades she comes home with as long as she tries her best. (But I still want her to have all A's, damnit!) She's coming home with vocabulary words I don't think I learned until third or fourth grade. And algebra! Good lord. It's just crazy to me how much more is expected of a first grader than when I was a kid. Now that I'm working three or four nights a week  and I'm not here to help her all the time, I can't help but feel guilty. So far, she's doing great. I know she's a smart kid, I guess I'm just terrified of failing her.

We have a trip planned next month to Disney World. Not a long trip, just a long weekend but we're looking forward to it. It's been three years since we took Maile and I think she'll enjoy it a lot more this time around. And it will be interesting to see how Kale does. I'm hoping it won't be too much for him. Crossing fingers!

I know there are probably some things I'm leaving out, but I'm tired and have a long day ahead tomorrow. Kale has a first appointment with a local ophthalmologist--he has to have one in the state of Florida in order to continue receiving services for the school district and things like that. In the past there's only been one pediatric ophthalmologist and we were not fans of his (he saw Kale in the NICU after he was born), but now there is another one who a friend referred us to. So hopefully it'll go well.
  

Aiight. I'm out.

Until next time.

Ack!

It's been a couple of months since my last post, huh?

Well, we decided to stop any future surgery for Kale. And so far things have been great with him! He's doing so well with everything. He even started walking a little bit last week--which is just such a big deal. His second birthday is coming up in September and I was hoping he'd be walking by then. Every day he gets braver and takes just a few more steps. He's getting better and better with eating, too. Still working on the bottle issue, though. It'll happen eventually.

Maile is out of school for the summer which means I will be the mother of a FIRST GRADER come August. Holy crap! Last year I was freaking out about her going into kindergarten. Now I gotta get a handle on her being in an actual numeric grade level? Yaaaaay...

Not a whole lot going on over here. Just trying to stay cool in this insane heat. Since the beach is pretty out of the question due to massive amounts of oil in the water and on the sand, we've been hanging out in our sad little inflatable pool in the backyard and at a friend's house. Yay for friends with pools! And double yay for those who invite us over! Kale loooooves the pool, by the way. He is such a water baby, I love it!

Speaking of our oily beaches, check this post out that I wrote--was featured on Lemondrop.com today.

Aiight. I'm out for now until I have more time and more stuff to post about.

A difficult decision

Since Kale's appointment last week, Mike and I have been going over and over in our heads what to do next in terms of Kale and future surgery. His doc said what we thought she would--to start all over again with expanders. She also told us once again to do what we feel is best, even if that means to get a second opinion. Granted, finding one from someone who has experience with Kale's condition is going to be damn near impossible.

We know there is one doctor in Texas who has treated someone with cryptophthalmos (she actually has something called Fraser Syndrome) but we're thinking that no matter who we go to, or who we ask the recommendation will be the same: surgery and expanders.

But then I can't help but think of other parents stories of their kids (with microphthalmia and anophthalmia) and how they've managed to do without any type of prosthetics and they have no deformities. No caved in heads. Nothing is wrong with them at all. Which goes against everything doctors warn us about.

So.

I think we're leaning towards no more surgeries---unless we start to notice any type of irregularities in Kale's growth in his facial area. Then we'll get back in touch with his doctor and go from there. We've been talking and talking about it and while we haven't made the definite decision, it does seem like that's where we're going. Otherwise, we're just going back to where we started from a year ago, and it just doesn't seem likely that anything is going to change. While we're being told it's a medical necessity, we can't help but think/feel it's not. It's all just for him to be able to wear prosthetics at some point. But I have no doubt that ten or fifteen years from now, if Kale tells us he want to go the route of wearing conformers or things of that nature, we will find someone who will make it happen for him. But for now, I think we're just going to try and let him enjoy growing into a toddler. Learning how to walk. Learning how to finally feed himself. Learning how to just be.

He's so handsome and such a happy boy (most of the time, anyway)--and it's obvious how much more comfortable he's been this last month or so without anything in his eyes. There's no redness, no irritation, no crustiness that just won't go away. And his eyelashes are finally growing back!

I just hope whatever decision we make, it's the right one and that we're not taking a huge risk...

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.

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!

Good stuff

Maile got her report card yesterday---and came home with the kindergarten version of Honor Roll! How cool is that? We had some issues the first nine weeks of school due to all of us slacking when it came to learning her sight words. But we busted those out this time around and we are all so proud of her. She got a ribbon, a certificate, a pencil and a free meal from Sonic. I'm so glad she loves school and learning--I really hope it sticks!

Her sixth birthday is about a month and a half away and I'm already trying to figure out what to do. I've talked to her about it and I think we're going to attempt to put together a small dress-up tea party--girls only. I have some good (and thrifty!) ideas, I just hope I have the time and energy to put them into effect. I'm excited, though. It's important for me to make sure she feels special all the time and to do as much as I can for her. I'm so terrified of her one day looking back with resentment for whatever reason. I never want her to feel like we never did enough for her or thinking that we were not there for her enough. Is that crazy?

Anyway. 

Kale had his occupational therapy evaluation today and it went really well. The OT he will have is super nice and he warmed up to her pretty quick. She agreed that he has a few things we need to work on and promised that by his second birthday, he'll be diving into his cake (he wanted nothing to do with his first birthday cake)! She's going to help us with all of his feeding issues, help him to feed himself, help him with "messy play" (he does not like to get anything on his hands), help him to transition to a sippy cup and help us with figuring out how to get him cooperating during bathtime (which is a complete nightmare, oh my god...he is STRONG!). Basically any daily activity that is difficult because of his visual impairment or because of setbacks due to surgery, she is going to help us with. I don't know yet when we'll start meeting with her or how often, but I'm looking forward to it. Even though it means he'll have to meet with someone different at least four days a week (he already sees his TVI twice a week and his ITDS once a week), it's okay because he's finally going to be getting the help he needs. And so are we.

When will it end?

Kale had a follow up appointment yesterday in Birmingham. It's looking like the skin on his right eye is starting to wear thin--which has Dr. Scruggs concerned that the expander is pushing through like it did on the left side. Awesome. So she said she'll be in touch with us in a week or so and will probably have Kale back in a few weeks to remove the expander and put in a conformer. As for his left eye, it's okay. For now.

So many things are bothering me right now. His left eye looks good--to us--but to others, it apparently looks awful. I won't go into that right now, but it bothers me. I'm doing what I can to take care of it, but nothing seems to work. I'll leave it at that.

All we've been told since Kale was born that without the help of conformers/expanders his eye sockets won't grow correctly which in turn could cause the rest of his facial structures to grow incorrectly. But then I read from actual parents of children with bilateral anophthalmia/microphthalmia who say they chose to not have their kids undergo surgery or wear any type of prosthetic and they never had issues with any of that happening. The thing is, I don't know necessarily how this works with Kale since we've just found out his actual diagnosis is cryptophthalmos--the microphthalmia being a result of it.

But I can't help it. I just wish I could hear someone tell me that Kale doesn't need to go through all these damn surgeries. I just want someone to tell me that he's going to be fine and that all of this is pointless. Because that's how it effing feels right now. If this right expander of his is in fact doing what the left one did, then we have to start almost all the way over. And I just don't think I can allow that. He is 16 months old now. And all this crap he's had to go through has hindered some of his development. He might actually be feeding himself right now if it weren't for these surgeries. He might actually sleep normally. He might be walking already. But all of these things are not happening and I blame it on the surgeries. Tomorrow he has an occupational therapy evaluation--hopefully some of this can be addressed. But I'm sure it'll all come back to the fact that if it weren't for him going through all of this, he'd be right where he needs to be.

We ask his doctor questions and she tells us as much as she can, but she's new to this whole cryptophthalmos herself. She tells us that she consults with other doctors near and far to get second opinions and we greatly appreciate it. But I don't want Kale to be anyone's guinea pig. I don't necessarily feel that way...yet. But I'm worried that I will eventually.

I don't know. I guess I'm just having a hard time right now. It's pretty lonely right now because there really isn't anyone who can give us any real advice, there's really nobody for us to relate to. It's a pretty awful feeling. I hope it passes.

Crypto--what?

A month or so ago, Kale's doctor at UAB had mentioned to us that Kale's diagnosis included something called Cryptophthalmos (hidden eye)--a rare congenital anomaly in which the skin is continuous over the eyeball with absence of eyelids (simplest definition I could find courtesy of Wikipedia). Dr. Scruggs briefly went over it but I'm pretty sure she was telling us this after one of his surgeries so some of the information kind of went in one ear and out the other.

Since then I have done all the research I could to find out more. Unfortunately, there isn't much out there that isn't associated with something called Fraser Syndrome (which I was pretty sure Kale didn't have). So I had e-mailed Dr. Scruggs a week or so ago with a bunch of questions that I have been meaning to ask (but somehow always forget to ask). She had contacted me and let me know that she received the e-mail and was doing some research and would respond once she had all the correct information--cryptophthalmos is apparently exceedingly rare (supposedly only a little over 100 reported cases, around 30 of them isolated--crazy, huh?) and certainly not anything she has ever dealt with.

Well, today I finally got her e-mail. Kale has what is called isolated complete bilateral cryptophthalmos, which is, (quoting from an article Dr. Scruggs quoted from) "Failure of formation of the lid folds and globe results in skin extending from the brow to the cheek without identifiable adnexal [eyelid] structures.  Ultrasound may identify a vestigial ocular structure or cyst within the socket." 

Because his is not associated with any syndrome (that we know of--at least not with Fraser Syndrome), his crypto is isolated. 

There are 3 different types of cryptophthalmos: complete, incomplete or partial, or abortive. Dr. Scruggs sent me info on all types and his is the complete type (which I described a bit ago). 

One of my questions was whether his microphthalmia was a result of the cryptophthalmos or the other way around. She said that if an eyelid is not properly formed, then the globe (eyeball) will be abnormal as well. So, the microphthalmia is a result of the cryptophthalmos.

How does cryptophthalmos happen? Here's what Dr. Scruggs said: 

"From what I have read, cryptophthalmos results b/c of an early embryologic failure of development of the eyelid folds.  Development of the eye is totally dependent on having a normal eyelid, so if lid development fails in the embryo, the globe cannot develop normally.  I do not know why Kale has a small (microphthalmic) eye on one side and a full-sized (but still abnormal) eye on the other (for which I do not have a term--there was no cornea, only sclera)."

So. There you have it. Kale's diagnosis is actually Isolated Complete Bilateral Cryptophthalmos (with Microphthalmia). I don't know if he's still considered as having bilateral microphthalmia--she's saying his left eye is full-sized (but abnormal), but we've been told that while it appears to be normal in size, it is still microphthalmic. 

It is nice to finally know everything. I always just thought Kale's microphthalmia was more severe than others--and we've certainly had issue after issue with his lack of eyelids. Turns out it's just a more difficult situation with him because of something else entirely. Not that it's a good thing, but it makes it a little easier to understand. For me, anyway.

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...