(M & K)²

Just a brief update...

2011-01-25T21:15:00.000-08:00

Who am I kidding? So much has gone on in the past four months. All good, thankfully!

Kale turned two in September. We had a pool party with lots of food to share with family and friends. Kale absolutely loved it. Sure you can say "He's two--he won't remember. What's the point?" Even if he doesn't remember, we know he had a blast. He loves the water (just like his daddy) and was pretty much in heaven the entire time.

In October we took the kids to Disney World. It wasn't a long trip--just a long weekend, but that ended up being a good thing since on the morning of our last day there, Maile came down with an awful stomach bug that had her sick the whole trip home. Poor thing was on fire and unable to keep anything down. We ended up having to keep her home from school an extra day but it all worked out. We had a good time but I think we're going to wait on another Disney trip with them until they're both much older.

Speaking of school--Maile came home today with her report card. And once again she made the A Honor Roll! We're so proud of her. Seriously--the stuff first graders are learning now is so much more advanced than what I was learning when I was that age. It's crazy! But she never falters--she enjoys learning and just really loves school.

She's turning seven in less than two months. She's been planning her next birthday party since December. Thankfully this time around it's just a small little slumber party. I don't think I went to my first sleepover until I was in third grade! How does this happen? Where does the time go? Is there any way for me to stop this? She lost her first two teeth within a week of each other and is about to lose her third. Did I mention that she's only thirteen inches shorter than me? I'm so not ready for her to not be a little girl anymore.

As for Kale, he has come a long way in the past six months. As I had mentioned in previous posts, he finally started to walk on his own over the summer which was such a big milestone. We're hoping that towards the end of the school year (if not sooner) he'll be working with an O&M teacher (orientation and mobility specialist) to start learning how to use a cane or just get used to one. He's also finally taken to eating pretty much anything without choking--thanks to his amazing OT. She had started coming over to the house in addition to us going to see her at PNC. During her home visits, she comes during lunch time to help figure out ways for Kale to eat. She's been such a miracle worker having him accept new textures, to holding a spoon or fork by himself and as of last week he finally started to drink from a straw unassisted! Huge step! He still has some things to work on but he really has come so far.

He still has his random freak outs during bath time but he's gotten much better about allowing me to cut his hair while he's awake. I've learned that as long as there are cookies around, I can pretty much get my way with him. Just like his mama!

It looks like he'll be starting preschool in the fall. Not sure if we have to wait until September (when he turns 3), I'll know more towards the end of the year. But basically there are two elementary schools nearby that have preschool programs for kids with special needs and one of them has had a blind student before. His TVI (teacher of visually impaired) recommends he go to that one but it really is up to me. She and other teachers (and other specialists if he still needs them) will be there to help him. Hmmm. Will someone be here to help me? I don't think I'm ready for him to be off and in the care of others. I had a hard time with Maile going off to VPK when she was four. I eventually got over it but I'm thinking I'm going to have a harder time with Kale being gone. I know it's for the best and he'll be learning so much more than I can teach him here. But still...

As for what I'll be doing to use up all that extra time--I have an idea but I won't go into that until it's set in stone.

As for the Mike and me, we're good. Just working and trying to keep our heads straight.

We had a great holiday season with our friends and family. We aren't too big on taking the kids to see Santa because 1) Maile has been kind of creeped out by him the past couple of years and 2) Kale probably would be creeped out by him. So instead I took Maile downtown one night to some Christmas in Seville thing they tried out this year and we had a lot of fun. And she actually sat with Santa--all on her own, no problem!

Christmas really was great. Kale got a miniature piano (he's still blowing us away on a daily basis with the things he can play) and Maile got pretty much everything she asked for.

I remember posting at the beginning of 2010 that the year wasn't looking too good which was disappointing after such a rough 2009. Well, somehow it did get better. And at the end of it, Mike and I were able to look at each other and say that 2010 was definitely a lot better than 2009. (Good god. Any year is better than that one!) We entered into 2011 with an even more positive outlook and while nothing spectacular has happened just yet, nothing horrible has either (knock on wood). It was a relief coming into this new year without worrying about future surgeries for Kale. That's all we dealt with it seemed for the first year and a half of his life, so it's nice to finally be without any of that emotional stress.

We're finally just enjoying being a happy little family of four and that's all we ever really wanted.

2010-09-14T21:05:00.000-07:00

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!

2010-06-29T15:19:00.000-07:00

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

2010-04-06T21:02:00.000-07:00

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

2010-03-25T07:35:00.000-07:00

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 (with cake or something on her bottom lip--gotta love it!).

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

2010-03-24T13:27:00.000-07:00

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?

2010-03-18T19:47:00.000-07:00

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!

2010-02-21T20:53:00.000-08:00

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

2010-01-27T20:45:00.000-08:00

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?

2010-01-26T20:41:00.000-08:00

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?

2010-01-21T17:47:00.000-08:00

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...

2010-01-06T17:45:00.001-08:00

...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...

Recap

2009-12-08T20:59:00.000-08:00

Tomorrow we leave for Birmingham--Kale is having his last set of hydrogel expanders put in. Woohoo! After this last pair come out, he'll hopefully be fitted with conformers that will actually stay put and keep his eyelids from healing back together.

So, just in case anyone is coming in on this with no clue what I'm even talking about, here's a recap:

Kale was born with bilateral microphthalmia (a.k.a. "small eyes"), which means his eyes didn't fully develop while he was in the womb. His is a severe case and he is blind, with some light perception in his left eye. Every case is different and Kale is (knock on wood) so far "Okay"--nothing else seems to be going on with him.

The reason for surgery? His eyelids were fused shut and had to be surgically opened (surgery #1) when he was six months old. The doctors discovered that his left eye (a.k.a. "globe") is actually a decent size but is all sclera (the white part of the eyeball) and mostly covered with tissue. His right globe is very tiny and very far back in the socket. In order for his face to grow proportionately and to avoid any potential future ENT issues, Kale was fitted with these little plastic things called conformers. These are put in place to promote eye socket growth. Well, his left one didn't last more than a week before coming out (and refusing to go back in at any size) because his lids aren't formed very well. The only other option that we felt necessary was to surgically implant expanders (surgeries #2 and 3). There are three different sizes and they expand by the natural fluids in the eye. Once in, his lids are sewn shut. Which means that once he is wearing the conformers, they will have a very large and wide stem sticking out to keep the lids separated so they can heal. Eventually, the conformers with be stemless and actually be painted to look like an actual eyeball.

It's been a long year going through all of this, but Kale is a champ. We're hoping that he only has two more surgeries left (this one on Thursday and one after to take them out and put in conformers) but it is kind of hard to tell right now. It all depends on how his lids hold up through everything.

Anyway. That's it in a nutshell in terms of his condition and what his surgeries are all about. He has handled everything so well and we just hope he continues to. Keep him in your thoughts and keep your fingers crossed that there will not be too many surgeries in 2010 for our little man.

Happy Fat Pants Day

2009-11-26T16:38:00.000-08:00

I'm finally not so uncomfortable right now so I figured I'd get on here, give some shout-outs and then have some inner dialog with myself on whether I should attempt to eat anything else today.

What am I thankful for? I don't have enough time in the day to go over everything. But I will say that I'm thankful for my family (duh). But not just the obvious members. All of them. Whether they're a part of my life or not. Because without them, I would never have learned a thing. Whether it is how to be stronger, how to move on or how to forgive. I may not be all the way there on that last part, but I'm getting there. And for that, I'm thankful.

I love my life. I love my friends. I may not have the best relationships with everyone whether it's my fault, theirs or both. But I love them all. Whether we're close or just friends who hang out occasionally but don't quite know enough about each other. I wouldn't have you in my life if I didn't think you were worth it, and I hope the feeling is mutual. Some people I have reconnected with this year. And while I do tread lightly and I do keep some walls up out of fear, I'm thankful for second chances.

I have been trying my best over the past couple of months to be a better person. To not be so negative. It's a hard thing to do when I've spent the last 32 years being nothing but. People who once drove me nuts with their "glass is half full" mentality are now people I look forward to being around. I'm not saying I am now going to be annoyingly chipper, I'm just saying that my glass won't always be half empty.

So, thank you to everyone in my life. Good, bad and in between.

Now, if you don't mind--I have an awesome little family to get back to.

Gobble, gobble, yo.

Where to start

2009-11-24T20:05:00.000-08:00

Ugh.

I know I've been slacking on the postings--it just seems like every time I sit down to type something up, I have to stop to do something else. And by the time I can get back to it, days have gone by and there's so much more to cover.

So instead of going into waaay too much detail that no one cares about anyway, I'll make it short and sweet.

Kale's TVI (teacher of visual impairment, or VIT--visual impairment teacher) started visiting a couple of weeks ago. She's great, she's teaching me braille and thinks Kale is the bees knees. Yesterday an O&M (orientation and mobility) teacher came by to meet Kale and to see how he is "traveling-wise". She was very impressed with him and how he moves around, but it probably won't be another six months or so before she starts to actually work with him. She's the one who will introduce him to mobility devices including a cane. Ms. Powers (Kale's TVI) said she will keep the O&M teacher updated on his crawling and walking and maybe he'll get to work with her sooner. He's pulling up on everything now--the couch, the recliner, the table. And he loves it. If he falls, he gets right back up and does it all over again. He'll walk around everything he pulls up on, too. He even prefers to stand (assisted, of course) in the tub now--which is just oh, so fun for me. Not difficult at all (That's not drenched in sarcasm at all, is it?).

Kale started crawling a lot the other day. He did it around six different times. Yesterday he did it twice, once while the teachers were here! That made my day because it seems like I'm the only one who ever sees Kale do it--finally someone else saw it and I don't have to worry that people think I'm making things up (not like I really think they think that...).

Formula is finally a thing of the past! Kale is finally drinking milk. Whew! Now if only I could get him to drink from a sippy cup instead of a bottle. And to drink water and juice. He is eating chunkier foods and I can give him these little yogurt bites and puff snacks. Before I was having to break them up into little pieces but today he took them all in one bite (thanks to my mom). I'm hoping he'll eventually learn to take them in his own fingers and feed them to himself. We'll see. So many things to do, don't want to overwhelm him.

Right now our biggest issue/problem is getting Kale to sleep on his own. In his crib. There was a time before he started having surgery back in April when he slept through the night and it was pure bliss. But since that first surgery, it's been a battle. Most of the time him and daddy are on the couch and that's just no way for either of them to get any rest. We've been attempting the whole crying-it-out and that didn't last too long. But there are safety issues that have us trying to suck it up and get it done. Right this very moment, Kale is in his crib screaming his head off and has been for about 45 minutes. Tonight we're trying out the Ferber Method. So far? It sucks. We find ourselves asking if it's worth it right now. He's going to be having surgery again in a couple of weeks and we'll just have to start all over again.

I know some people think it's horrible and we should just hold him and give in or whatever. But we have our reasons for needing to do this. Every family is different and ours is no exception.

Maile is doing phenomenal. She's learning to read which is such an awesome thing to watch. Reading has always been my "thing" so to see her do it and enjoy it brings me so much joy! She's always loved books but now she goes through and points out all the words she knows and tries to sound out the ones she doesn't. Today she showed me a list of words she was trying to spell just for the heck of it and one of the words she was trying to spell was "dolphin". She spelled it "dofin". How awesome is that? A few weeks ago, the movie "Akeelah and the Bee" was on and we recorded it (I personally love the movie and I wanted Mike to see it--he ended up loving it, too). I swear for the next two days, that's all she wanted to watch! And she kept pretending to be in her own spelling bee, which was the cutest thing.

She's also quite the artist and I'm hoping she sticks with it. She really blows us away with some of the stuff she draws. I was big into drawing (and quite good at it) when I was a kid but stopped for whatever reason. I just hope she doesn't!

Aiight.

I think I covered most of everything. I'm sure I'll remember something else and come back and edit it in. But right now I have to go check on Kale.

So much for short and sweet, huh?

Hope you all have a wonderful, safe and Happy Thanksgiving. I'm sure I'll be back sometime around Thursday to bore everyone with all that I am thankful for.

Until then...

Happy Halloween!

2009-10-31T13:23:00.001-07:00

Hope everyone has a safe and Happy Halloween!

Finally

2009-10-27T17:33:00.000-07:00

Kale has a Visual Impairment Teacher (VIT)!!!

Today was the staffing meeting for Kale and it went very well. It was a bit overwhelming--there were eight other people there along with Kale and me. But the end result was all I've been waiting for since January.

I don't know yet when his VIT visits will start, but I'm hoping soon. She will come here to the house for thirty minutes twice a week. I've met her before and she seems to know her stuff. She should--she's been doing this for 35 years!

Anyway, I'm looking forward to learning some new things from someone who is somewhat of an expert when it comes to the visually impaired, rather than just trying to figure it out myself (sometimes unsuccessfully).

So, yay! The ball is rolling...

Breakthrough (sorta)!

2009-10-25T20:25:00.000-07:00

Yesterday my mom and dad watched Kale for me for a few hours and I gave my mom the "go ahead" on trying to get him to eat more than just baby food. I think I've just been too scared. The few times I've tried to give him stage 3 foods (the really chunky kinds), he would gag over and over again and I would freak out.

When I got back to my parents house, my mom told me she was able to get him to eat. And eat he did! Homeboy had a feast! She put some macaroni and a sweet potato in a small food processor but still left chunks all in it. She said he gagged a couple of times, but eventually stopped and was able to just eat it all. And the pudding. And the yogurt melt thingies (although we have to break them up into smaller pieces, but still).

So today I broke out the stage 3 Chicken Noodle jar that I've had stored away for when I felt Kale was finally ready for it...and he ate it! No problem! Well, except for the part where he refused to swallow any of the carrot bits in it. He would just keep them in the front of his mouth and I would have to take them out with my finger. I think it's safe to say he's about as fond of carrots as I am.

I'm sooo glad I had my mom do my dirty work for me! It never fails--if ever I have something I'm too scared to do, I just call on her. When Kale had his first surgery and had his eyes all covered in gauze and tape that wouldn't come off for anything, I called on her to be the one to get it off of him. And she did.

Anyway.

Today we took the kids to the pumpkin patch. We were going to do it sooner but then everyone got sick. But today was a beautiful day and we went to the one we always go to. Thankfully, they weren't completely out of pumpkins. Maile picked one out for her and picked a tiny one out for Kale. And Mike and I picked one out for us. Tomorrow we're going to carve ours and let Maile decide what she wants to do with hers. We have these pumpkin face things you can stick in it--kinda like the Mr. Potato Head stuff. But they're Halloweeny and Maile also has a princess set...so we'll just have to wait and see what she wants to do I guess. I'll post pictures of our pumpkins once we're done with them. Until then, here are the ones from today--Enjoy!

Time to start baby-proofing--for real!

2009-10-21T15:55:00.001-07:00

Kale crawled the other day!

Of course, he won't do it anymore now that I know he can and want him, too. But at least I know that he can. Also, he's been doing everything he can to stand up on his own and with some help initiating it, he'll pull up on the chair and couch. It's so friggin' funny to watch him, too. As soon as he's pulled himself up, he holds on with one hand and then starts to laugh or has this big goofy grin on his face. Sometimes he falls, but he'll pull himself back up again. Sometimes he'll just turn himself around and then lean on whatever it is he pulled himself up on--but he'll still be standing. He's just so damn cute.

You may be asking yourself why is this such a big deal to us. I mean, aside from the fact that it's exciting for any parent to watch this happen with their baby. Well, visually impaired babies tend to be delayed when it comes to things like crawling and walking. I have worked and worked with Kale to do these things and finally just kind of stopped pushing it so much. I figured he'll do it when he's ready. And sure enough--he proved he knew what to do all along! And he's figuring out the whole standing thing on his own--because he wants to. Not because I'm drilling it in his head every minute of the every day.

Now if only I could get him off the bottle and on to a sippy cup. And drinking milk. And eating something other than baby food...(And believe me, I've tried every trick).

All I know is help from a visual impairment teacher cannot come quick enough. We have a staffing meeting next week with a bunch of people and a VI teacher and I'm crossing my fingers we won't have to wait much longer after that to get the ball rolling. Kale will be thirteen months old tomorrow--I wish we'd had all of this taken care of at least six months ago. Maybe some of these road bumps we're hitting could have been avoided. It's not their fault though. Because there was the question regarding whether he had hearing loss or not, we had to wait until all of that was taken care of. We didn't finally get our answer until the end of March. And I think it was April or May before I ever was able to get back in touch with the people I needed to regarding this situation. And then it was June and VI teachers were out for the summer. Luckily, we were able to get back on track once school started back up and it's just been a meeting here, a meeting there. And finally this meeting next week.

Cross your fingers that it won't be much longer!

And this little piggy....

2009-10-18T21:42:00.000-07:00

Okay, okay. Lame title, I know. Especially considering that the swine flu is no longer being called the swine flu, but N1H1 (are you happy now, Christie???).

So the past seven days have been fun. Last Sunday, Maile started running a fever and coughing. Monday I kept her home from school and I started coughing and feeling a little under the weather. I called her and Kale's pediatrician's office and spoke to the nurse (who knows me well now) and she said it sounded like Maile had the flu and for me to just keep an eye on her fever and continue doing what I was already doing. Of course, if Kale started to run a fever or show any other symptoms, I needed to call and have him seen (their pediatrician is just trying to be super cautious with him, I guess). Monday night? I'm in the ER with Maile whose fever spiked to 104. We spent almost four hours in the waiting area along with about fifty other people. And I swear, we were all there for the same thing. I eventually just took Maile home (her fever had gone down while we were there) and took care of her myself.

Tuesday I was still feeling bad and my mom came over to help out with the kids. Maile was home again and Kale was starting to cough a little bit. I talked to Mike on the phone while he was at work and he was starting to feel sick with a cough and sniffles.

By Wednesday, Kale was running a fever, Maile was still home from school with the fever that refused to go away and still had that nasty cough. I called the doctor and had to take Kale in. Kathy (my mother-in-law) went with me (which proved to be a gift from Heaven later on as I endured a Walmart trip from Hell). Kale had his nose swabbed and about fifteen minutes later his doctor came in and said Kale had the swine flu. And that Maile probably had it, too but if it's not treated within the first 48 hours then it has to just run its course (which was totally not my fault--I had called the doctor around three times during the week out of concern for her!!!). I called Mike to let him know because his work is super crazy about anyone getting this virus.

So Thursday--His work had him take the day off to get checked and sure enough---after two doctor visits (one questionable regular doctor and a surprisingly speedy ER visit for him and Maile) he tested positive for it, Maile with bronchitis. So Maile missed an entire week of school and now Mike has to miss an entire week of work.

Luckily, Kale was treated early and he's been doing great. Maile's doing better and looking forward to going back to school and doing all the things I wouldn't let her do all week for fear of getting even more sick or getting someone else sick. And Mike is feeling much better today than he has been the past four days (I think got the worst of it). Everyone is getting and feeling better and tomorrow is a new day.

And me? I'm looking forward to catching up on all of last weeks shows that are stored on my DVR ;)

One!

2009-09-22T07:07:00.000-07:00

My little man is one today!

I cannot believe the year has flown by as fast as it did. A few months ago, I got a message on Facebook from an old Gtmo friend of mine. She was telling me that her hairdresser was telling her about a friend of hers who was pregnant with a baby girl and that they already knew their baby girl has bilateral microphthalmia. So my friend got us in touch with each other and we've been in contact ever since via Facebook. Her daughter was born a week and a half ago and she is just precious. When she started to post pictures of her beautiful baby girl on FB--all the old feelings crept back up from when Kale was born. It's been a year, but all of the feelings from then are still fresh. And I still think back to that day and that week and wonder how any of us got through it all.

But here we are. One year later. Numerous tests, countless doctor's appointments and four surgeries later. A year's worth of tears--from frustration and from joy. One year of so many amazing moments from watching a big sister love her baby brother so much it brings her to tears. A year of watching our son explore everything around him, not wanting to miss out on anything. A year of watching a father show so much love and pride for his son and for his daughter.

It hasn't been an easy year, but I wouldn't change a thing when I look back on it all. It is true--that whole "whatever doesn't kill you only makes you stronger" saying. With our family and friends by our sides, we've gotten through some really tough times. And I know we'll be able to get through whatever else is thrown our way.

I am blessed. We are blessed. Somebody is watching over us--I don't know who. But I thank them.

Happy 1st Birthday, my beautiful Kale Michael.

3

2009-09-02T09:05:00.000-07:00

We're leaving in a little bit for Birmingham--Kale is having his third surgery tomorrow morning. It never gets easier, but I do seem to freak out a little less each time. Even if that means I have to avoid feeling any actual feelings. Way to be optimistic, huh? Eh.

Not much else to say. Just hoping that in the long run, this isn't all for naught.

2009-08-26T19:45:00.000-07:00

Well, I'm officially a mother of a school aged child.

Maile started kindergarten on Monday and surprisingly no tears were shed by any of us. I'm convinced that I'm just numb from everything going on right now. I'll probably have a very late break down by the time she starts first grade.

I think the only thing that really bothers me is that I don't know what she's doing for seven hours straight. I'm so used to her being around all day, asking me for yet another snack or asking me to play with her in her room. Or being all up in Kale's business. Or asking me to snuggle and cuddle with her. And now? She's somewhere else. Giving someone else all of her attention. It kind of sucks, man! And it's gonna be like this for the next twelve years???

Anyway--She really likes it so far. I mean, it's only been three days, but she hasn't begged me to stay home or anything. So that's good, right? Today she had to walk into the building and to her classroom by herself. Tomorrow she's gonna have to walk a little more by herself. It seems so much scarier to me than it is to her. I keep thinking something is going to go wrong. Like she'll lose her lunch money or forget where she put it. Or she'll get lost. Or she won't make any friends. But then I have to remind myself that she's a smart girl. And she's going to be just fine. And that she's still going to ask me for yet another snack when she comes home, she's still going to ask me to play with her in her room, she's still going to be all up in Kale's business and she's still going to ask me to snuggle and cuddle with her. I'm just now going to look forward to those moments a little more than I did before.

Last days of summer

2009-08-18T16:58:00.000-07:00

I have no clue where the time went, but somehow the summer flew right by me! I feel like I was just writing about all the cool things I wanted to do this summer and now I'm preparing for Maile to start kindergarten next week! How did this happen???

I think I'm more excited than Maile is, but I guess that's to be expected. She has that initial fear of the unknown, but I'm hoping she comes home from her first day eager to go back the next day rather than begging to never have to go again.

We didn't get to do all the things I had planned for the summer, but we did do a lot. Maile even got to have her very first sleepover (thank you again, Mike!). I'm pretty pleased with how our summer went and I hope Maile is, too.

Kale has been doing so much better with everything since my last post. I'm just gonna assume we were both having a really bad week. And that he was teething hardcore, for real this time .He even has his first bottom tooth to prove it. He's eating great again, sitting up and playing all the time--pretty much everything he was doing before my last post. He's also become quite the master at mimicking. He'll say "up", "uh-oh", "dad-dy", and he'll whisper when one of us does. When we sing Pat-a-cake he claps his hands--he'll also do that if you say "Yay!" It's hard to believe we are going to be celebrating his first birthday next month!

This past weekend we went to visit some family and we had such a great time. Kale got to go "swimming" and Maile just had a blast all around hanging with her cousins (as did I).

Times have been kind of rough around here with certain family members not doing so well and whatnot, but in the end it's family that keeps us all together. We may not all get along as well as we'd like to. We may all lead completely different lives. And most of us don't agree on much. But we're family and need to be there for each other as much as possible. If not in person, than in thought or prayer (if that's your thing). We just need to always be thankful for what we have and who we have in our lives. I know I am.

Not always coming up roses

2009-07-23T20:06:00.000-07:00

Looking back at a lot of (or most of) my posts, I notice that I'm always writing about how awesome things are. Which isn't really like me (if you know me, you know what I mean). I don't want to come off as fake or like life is oh so perfect. It's not. It's hard work. I just don't think it's fair to only go on and on about how great things are. Because while things are great for the most part, there are some not so great things going on around here as well. I want to be honest with this blog and also help others out who may be in a similar situation. And if I am not being 100% honest in how our life is dealing with our sons condition then how is that helping anyone?

I have my days where things are pretty great and things run smoothly. And then--there are days where balling myself up into the fetal position and rocking back and forth in the nearest corner of the room sounds like heaven.

This morning was a rough one. I think Kale is finally really teething. As in, teeth should actually be coming in. He's 10 months old and I feel like the two front bottom teeth have been just sitting there teasing us--but now? They mean business. And Kale isn't having it.

Not only is the teething an issue right now, but so is feeding Kale solids. I have little cues I give him to let him know when I have the spoon ready for him--I rub his cheek with the pinky finger that's on the hand that is holding the spoon. If that makes sense. I also give him verbal cues. And sometimes it's a messy affair, but babies are messy anyway, so no biggie. Well now Kale puts his fingers and hands into his mouth as soon as I move the spoon away. Then he rubs them all around and on his eyelids--which are still stitched closed. Which in turn sucks. Because the last thing I need is for him to get some sort of infection in his eye. So the entire time I'm feeding him, I'm busy moving his hands away, he's busy fighting me, I'm busy wiping his hands and his eyes which just makes him mad, he starts to fuss and cry and then he refuses to eat anymore.

Needless to say, I'm really starting to dread breakfast, lunch and dinner time with him.

This morning because he was so fussy due to what I'm assuming was the teething, I couldn't even feed him breakfast until almost eleven o'clock! He usually eats at eight. I was so stressed, he was so stressed and soon we were both in tears. Ugh. I'm such a wimp.

A couple of weeks ago, a physical therapist came by with Kale's Early Steps Intervention teacher to check on how things are going with him. The last time she saw him was December 1st so she had a lot to catch up on with him. She showed me a few transitional steps for him to work on--from crawling position to sitting, sitting to crawling position--that sort of thing. The visit was good, though. She said he looked good and she thought that he had made a lot of progress over the past six months and she just wanted us to make sure we keep encouraging him to crawl, stand and walk and to be able to move from each position on his own.

He's been sitting up so great for long periods of time, too. Until recently. I am so scared he's regressing or is going to. Usually it was no big deal for him to let you sit him down on the floor. He'd be content playing with whatever you gave him and just sit there. Now if I try to sit him down, he'll refuse to bend his knees or go straight to lying on his back. It's kind of frustrating. But I keep messing with him until he does it. Sometimes he gets really mad, but I know he needs to do it and so I work with him until he does it. Other times, he's fine.

I just get so scared that all this progress he's made will all of a sudden come to a stop. I doubt that will happen, but I still have that fear. I'm the one who is home with him all the time so it's up to me to make sure that all of these goals are being met with him. And yet, he's still not crawling. And while I know that it's very common among blind babies and blind children to crawl and walk late, there are still people in my life who tend to make me feel like it's my fault. Like I'm not doing enough for him. Or I'm not doing my job. And no matter what information I give those people to back it up, it just doesn't matter. I'm still the one at fault.

Anyway, I guess I just wanted to share how some things we're dealing with in our everyday life are kind of stressful. It's not all fluffy clouds and butterflies. Sometimes it's rain clouds and mosquitoes and not an umbrella or citronella candle in sight.

A heart bigger than this world

2009-07-20T21:47:00.000-07:00

I heard Maile in her room doing a combination of crying and talking when she was supposed to be going to sleep. I walked in there to see her sitting on the edge of her bed hugging her knees and tears streaming down her face. I asked her what was wrong, expecting her to tell me something silly like she does sometimes when she's not ready for bed just yet.

Instead? This is what she said:

"I was praying to God for Kale to be okay. I just love him so much."

I, of course, started bawling right along with her.

I told her that he's just fine and will continue to be fine. Mike and I try to explain to her as often as possible that just because he cannot see anything that he's not missing out on anything. It's so hard when they're that young--they just cannot comprehend why things are the way they are. She still asks from time to time if Kale will see when he's older, when he's a grown-up. And then other times she'll say matter-of-factly that he is blind and always will be. I don't know that she fully understand what that means though. She's asked me a few times why God made Kale blind--and I honestly never know what to say. I have so many issues with religion and faith--the last person in the world that should be explaining these kinds of things is me. But I did my best as I will always try to do and told her that we're very lucky to have been chosen to be Kale's family. That out of all the other families in the world, someone/God picked us. We are the perfect family for him.

She seemed to like that.

I kinda do, too.

4th of July, 2009

2009-07-05T13:04:00.001-07:00

What an awesome day yesterday was!

First we took a trip to Johnson Beach which is only about ten minutes away from us. Some friends of ours invited us out there to cookout and just enjoy the day--so that's what we did. It was crowded, but not as bad as I expected it to be. Mike and Maile went out to the water with their boogie boards and Kale and I sat under an umbrella soaking up the shade and light breezes that came our way.

Mike and Maile eventually made their way back and it was evident that Maile wasn't happy. The waves in the water scared her a bit and she was D-O-N-E. And super grumpy. I think the heat was just getting to her. She usually loves the beach and never wants to leave but after coming out of the water all she wanted to do was go home.

Check out Miss Grumpy Pants! She didn't even want to look at the camera which is not like her at all!

Oh, wait! I was wrong. Grumpy or not--she is such a beautiful girl.

So Mike and I packed the kids up and he dropped us off at home and Mike went back to the beach to hang out with his friends a little bit longer. Which was fine--It gave me time to make some buffalo chicken dip and some Angel Lush Cake. Seriously--if you haven't had this or made it--you need to. Assuming you like pineapple. Oh.My.God. It's so good! And sooo easy to make!

Our late afternoon/evening plans included hanging out at the in-laws house (my parents were out of town doing their own thing). I invited my friend and her twin daughters and we all just had a great time! Maile had her friends to play with--

I had mine (ha!)--

and Mike's friends and family were all there, too. Lots of yummy food and lots of laughs! What more of a good time does one need?

Once the sun started to set, we went outside and lit fireworks. Maile held her first sparkler and then immediately (and fearfully) dropped it to the ground.

After a little while of watching the twins hold theirs with no problems, she tried it again: Success!

And of course, Kale had a great time, too!

Hope every one of you enjoyed your 4th of July--either with friends, family or just doing whatever makes you happy!

Floatie free! Sorta

2009-07-01T19:13:00.001-07:00

Today was Maile's last day of swimming lessons! She started three weeks ago, cried the entire time during the first class. But by the end of the first week she was claiming she wished she could live at the pool. Mike had been taking her to the classes while I stayed here at home with Kale. Apparently the parents are not allowed to hang out by the pool, but instead are on some upper level and have a tiny window to look through--assuming other parents give you some room to do so. But today was the last day and all the parents were allowed to be by the pool and take pictures.

Kale and I went today so we could see all that Maile had learned. Her big thing to do is to go under water. She's so proud of herself and how she's able to hold her breath. Before the class was let out, the teachers put the kids in life jackets and floated them around in an inflatable boat--Maile seemed to like that a lot.

I'm super proud of her but scared at the same time. We will probably put her into another swimming class the next level up sometime in the near future, though. She's still a little nervous about swimming, and still needed some assistance from the teacher. Anyway, I'm super proud of her and how she got over her initial fear of swimming without floaties. She seems to want to continue to learn more and I'm all about supporting whatever she wants to do.

Interesting little thing happened today while waiting for Maile's class to begin. There was this other mother there with her kid who was in Maile's class who looked a little familiar. I thought I knew who she was for sure, but then decided she wasn't who I thought she was. As we were going into Maile's class she was behind me and said to me "You look familiar" and then said she wasn't sure if it was just from the swimming class (it wasn't--I hadn't been there before) or from somewhere else. Then she said she works at Baptist Hospital---and then I knew I was right about who she was. I then asked "Audiology?" and she said yes. She was the audiologist who I wanted to strangle!!! She was the one who was bound and determined to send us all the way to Shands Hospital in Gainesville for some test that they may or may not have even done on Kale! She was the one who was trying to convince us that Kale had hearing loss--the one who after I went to a different ENT doctor than the one she recommended, she still tried to intervene and was telling the new audiologist we were using that Kale needed to go to Shands! She caused us so much unnecessary stress for three loooong months before we sought out anyone else and then was still butting in. She's the one who wasn't confident in her testing and was trying to pass us off onto someone else--but once we got a second opinion locally she wasn't having it. Thankfully Dr. Chicola and his audiologist, Kina, listened to us and discovered that Kale didn't have hearing loss at all but just needed tubes in his ears.

Anyway. I was good and didn't scream at her or anything, but I was very cold with her and just pointed to Kale who I was holding at that moment and said, "Yeah, Kale." She knew right away who we were and said, "Oh, how is he? You used Kina and Dr. Chicola, didn't you?" and I told her yes, and that everything was great--that all he needed was tubes in his ears and he's been fine ever since. He actually has a follow up with Dr. Chicola this coming Monday--kinda funny how we ran into her of all people. I'm very proud of myself for not giving her a piece of my mind, but I do think she got the message that I am not her biggest fan.

Crossing fingers

2009-06-26T11:21:00.000-07:00

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

2009-06-19T20:02:00.000-07:00

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.

2009-06-19T19:44:00.000-07:00

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

2009-06-19T19:25:00.000-07:00

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....

2009-05-29T21:09:00.000-07:00

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

2009-05-19T05:39:00.000-07:00

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.

2009-05-05T19:48:00.000-07:00

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.

No title is worthy of the day I've had

2009-05-02T14:05:00.000-07:00

I spent most of the morning trying to get stuff together for Maile and Kale so we could go to two birthday parties today. One was at one o'clock and the other was at two o'clock. We were going to leave the first one around two or so and then go the next one a little late. I dropped Kale off at my mom's house for the first party so he wouldn't be completely pooped out by the time we went to the second. We had only been at the party for ten minutes before my mom called to tell me that Kale's left eye conformer came out. Holy crap. He likes to rub his face on people's shoulders when they're holding him, maybe to scratch an itch or something. He also does it before he's about to fall asleep. My mom said he did it like he was tired and then he lifted his head up and "looked" at her and that's when she noticed the conformer wasn't there!

So she tried to put it back in herself before calling me, but Kale wasn't having it. So Maile and I got in the car and I rushed to get there as fast as I could. But not before a bird decided to fly into my windshield as I was talking to Mike on the phone telling him what was going on. So he got to hear me shout a loud "Eeeeeeek!" as the bird came flying towards the window and as feathers just kinda flew around. Awesome.

I finally got to my parents house and Kale was fast asleep on my mom. When he woke up I finally got to see what he looks like without the conformer. Kinda cool, I must say! It looks more natural than it ever has, that's for sure. Anyway, so after a little while my mom, my dad and I decided to try together to get the conformer back in.

It didn't work. At all. And Kale fought us the entire time. So I went into my parents' foyer by the stairwell to call and try to leave messages with Kale's ocularist to find out what to do. Next thing I know I'm being attacked by my mom's automatic Air Wick spray thing that's on the stairs. I had no clue what it was, so I had no idea that standing directly in front of it would land me in a situation where I felt as if I was getting maced. At least I smell good.

So now we're home. Mike called a bunch of other numbers we had here at the house and left messages with anyone and everyone we could think of at UAB and hopefully someone will call us back. We're just concerned his eye may get infected or it may close up. It's really red and swollen right now, but it doesn't seem to be bothering him so I guess that's good.

Anyway. It's been a long day and I'm pretty much ready for it to be over.

2009-04-27T16:12:00.000-07:00

My lovely friend/neighbor, Liz, came over a couple of weeks ago to take photographs of Maile and Kale together. I mentioned a few posts ago that I wanted pics taken before Kale started to have surgery. A week after I posted that, she came over and took some beautiful photos. She gave me a cd with the pics in color and in sepia. They are just so great! I don't think I can post them all (there are a lot!) but I'll try and post my favorites.
Also, be sure to check out her online gallery here where she has some amazing photographs for sale!

2009-04-27T14:29:00.000-07:00

I've been asked a lot how Kale has been doing since his surgery. I keep telling everyone that the surgery itself was the easy part. Everything following the surgery is the hard part.

Taking care of his eyes is a lot of work! Every morning I have to clean around his eyelids, around the conformers and he doesn't like it one bit. Then I have to put this medicated ointment on his eyes and he hates that, too. Then I have to cover his eyes up so he doesn't touch his eyes and get the ointment on him. Or so he doesn't mess with his left eye--he still waves his hand in front of it all the time!
We have tried every kind of bandage for his eyes and they all suck. They all claim to be "ouch free" but that's a bunch of crap! And they all leave red marks from the adhesive--latex free or not.

Today was his post op appointment at UAB. I wasn't able to go because of school--end of semester project due and couldn't turn it in late. So Mike left yesterday with the kids and my mom. They stayed overnight at my cousin's house in Montgomery and then drove to B'ham today for the appointment.

Mike just called a little bit ago to tell me how everything went. He said they took out the left conformer (the big one) and put another one in...and Kale screamed and screamed. God, that breaks my heart. We have another appointment on May 18th, and it looks like he'll have new conformers put in then, too.

Ugh. I'm so not digging this whole conformer thing! I know it's necessary, I just hope it gets easier.

2009-04-19T20:05:00.000-07:00

Let me first just say, "Whew!"-- I am so glad that's over! I am also so grateful for my parents and Mike's parents for being there for/with us and for my amazing cousin who has been letting us stay at her place each time we have to go see Kale's doctors. Having family there to help is an amazing thing. It should never be taken for granted. The same goes for friends--who in a sense are my family.

Okay.

So Kale's surgery went very well. It took about five hours but the doctors came out every hour or so to fill us in. Basically they opened up his eyes, took a look around and found that his left eye (the one that's always been in question) is very unorganized in terms of structure, it is all white--no color, no vision and had a lot of tissue attached to it. They separated all the tissue and then had an ocularist come in and fit both eyes with conformers. Actually, the conformers they had were too small so she had to run back to her office a few blocks away, make some new ones and then come back and put them in.

Right now, Kale is still bandaged up a bit so we haven't been able to get a real look at everything, just a tiny peek at weird angles. We can see the "stem" of the conformers sticking out. The ocularist let us know that the stems are a lot wider than normal because they want to keep his eyelids from fusing themselves back together. Dr. Scruggs is the one who performed the surgery and will perform any future ones and I absolutely love her. She is everything one could want in a doctor. She specializes in Ophthalmic Plastic and Reconstructive Surgery and did let us know that Kale will have to undergo some eyelid reconstructive surgery in the future in order for his conformers to fit properly and also any other prosthetics when he is older.

Anyway, I don't know if I'm leaving anything out or not. Like I mentioned earlier, Kale's eyes are still covered up but we were told that after 2-3 days if the bandaging and stuff hasn't come off on its own, we can take it off. We tried soaking the tape to get it off, but it's stuck on his skin pretty good. Not sure how I'm going to get it off. If I weren't so terrified of hurting him or tearing his skin, I'd just take it off quickly but just the thought of it makes me cringe in pain. We were given some ointment to rub on his eyelids so I know the stuff has to come off soon...

As for a follow-up appointment, that is on the 27th. I think they're going to replace the conformers, too. We'll see.

Kale is doing great, though. He is so tough! The surgery took place Friday and by Saturday morning he was back to his happy self. Playing, laughing and trying to jump everywhere.

Thanks to everyone for your thoughts, prayers, good vibes. Mike and I both appreciate everything and are so lucky to have so much support through all of this!

2009-04-03T12:15:00.000-07:00

With Kale's first eye surgery coming up in just two weeks, my stomach is in knots and all I want to do is take picture after picture of him. I know the surgery needs to be done, but I guess I'm just not ready for him to look different. I'm so used to the way he looks now (adorable!) and I feel so terrible that he'll have to undergo any type of surgery that is going to change the way he looks. Again--I know it's necessary. I'm just starting to feel what I'm assuming are the normal feelings that are to come along going through something like this.

Anyway. Yesterday was a super rainy day (among many) and so I decided to try and get some pics of Kale and Maile. Kale is able to sit up assisted just fine, and unassisted for very short periods so I wanted to get what I could of him doing that. What I really want to do within the next two weeks that will probably never happen because I suck at time management is get some really nice shots of the two of them together. A friend of mine (you know who you are) offered to take some baby pics of Kale when he was just a newborn, but with so much going on, it just never happened on my end. She did tell me she would take the photos of both Kale and Maile...I'm wondering if she's still up for the task??? (Let me know, girl!)

Aiight. Well, here a few pics I took yesterday. Nothing special, just wanted to show off how big my boy has gotten! He doesn't even look like a baby anymore! Maile was only down for a pic or two (couldn't get the two of them sitting up together...oh, well!).

Finally

2009-03-23T14:57:00.000-07:00

Well, Kale had his tubes put in his ears this morning. We had to be at the hospital by 6:30 and he wasn't seen until a little after 8:00--which was when the surgery was actually scheduled--they weren't done with him until a little after 11:00.

Apparently Mondays are very busy in the Surgical Center part of Sacred Heart. We sat in the waiting room with a lot of other people coming and going. An hour after waiting we got a phone call after Dr. Chicola did his thing (cleaning out Kale's ears and then putting the tubes in) to let us know that they were going to start the ABR test (auditory brainstem response). The test ran around two hours but would finally let us know, once and for all, if Kale has any hearing loss.

After it was all done Dr. Chicola came out to talk to us and to let us know that Kale's right ear is perfectly fine and his left ear has only very mild hearing loss. But it's not enough to require any type of hearing aid!!! So---Wooohooo!!!!

Six months and we finally have an answer! We knew he could hear us, but there was always that "what if?" looming over our heads thanks to the idiots over at Baptist Speech and Hearing.

I think back to how the audiologist at Baptist was so ready to send us to Shands Hospital and it infuriates me...even after we had already started seeing Dr. Chicola and his own audiologist. She obviously couldn't do her job (after three visits and three tests) at that point and was ready to pawn us off to somewhere else where they may or may have not even helped us. I'm so grateful that I didn't go with the ENT doctor she suggested and sought out Dr. Chicola. I'm so grateful that my friend's mother worked for him and I was able to just go through her instead of waiting an even longer time to get an appointment. And I'm so grateful that Dr. Chicola was on our side from the beginning and that he actually cares. You can just tell.

Anyway--it's been a long six months, but the wondering can finally end today...

Maile Rose

2009-03-15T17:59:00.000-07:00

Tomorrow my baby girl turns five! Tomorrow is actually going to be a super busy day and I doubt I'll be able to do any type of blog posting, so I figured I'd do it today.

Today we had what originally was to be a small birthday party. It was also originally scheduled to be at a nearby park, but the weather wasn't cooperating so we had to move it to the house. Ugh. It ended up being a big turnout but surprisingly, the house isn't even that messy. Maile's room is pretty scary right now, but it's not as bad as I was expecting.

We had a balloon guy come to the house and he performed some pretty cheesy magic tricks, but the kids loved it so that's all that mattered. He then made some really cool balloons: flowers, airplanes, hats, elephants, cats, ballerinas. He could make pretty much anything. At first Maile was a little shy and scared and not too down with wearing a cape and hat as she assisted Mr. Balloon Man with his magic tricks. But eventually she warmed up and really enjoyed herself. It was pretty cool and I'm glad that I remembered him from two years ago when a bunch of my friends and I went to Friday's for my friend Jill's birthday. The balloon guy was there and he came over to our table and made Jill a silly balloon hat. The majority of us being mothers, we asked him if he had a card--he did. I have had it in my wallet all this time and thought recently how cool it would be to have him come to Maile's party. It all turned out well and the kids were super stoked about it all. Big thanks to my mother-in-law for calling him, setting it up and paying for him to come out.

After the little "show" we went ahead with the cake and ice cream. No cakewreck worthy cake here, thankfully! Although there was a moment where Maile's hat she was wearing fell off and onto a lit candle. Luckily, Mike caught it before it had a chance to burst into flames.

Later after everyone left, Maile decided to try on her new DJ Lance Rock hat and glasses.

So did Daddy.

Here is Maile holding our awesome balloon flowers.

Anyway. It was a very long, but very good day. The weather sucked but not enough to ruin Maile's fifth birthday party. Tomorrow will be much more low key in terms of celebrating. She and I both have school tomorrow. Except she gets to enjoy cupcakes with classmates she actually likes. After school we have to take Kale in for his pre-op appointment with Dr. Chicola. Then we'll probably do a quick dinner of Maile's choice (I'm betting McDonald's is in our very near future). We only gave her one present this morning which was the dress she was wearing all day and another little outfit. Tomorrow we'll give her her other little gifts since it's her actual birthday. I actually need to go wrap those before I pass out...

On that note, enjoy a little video below of Maile singing a crazy version of "I'm a Pretty, Pretty Princess" while we were waiting in the car for Mike to get out of a store.

Happy Birthday, Maile. We love you more than you will ever know. You are the most amazing daughter and sister anyone could have ever hoped for. We truly are the luckiest parents to have the amazing kids that we have!

UAB

2009-03-10T17:07:00.000-07:00

Aiight.
So yesterday was Kale's big appointment. We arrived at the Callahan Eye Foundation Hospital about an hour and a half earlier than our appointment was scheduled, but we were fine with waiting. We just wanted to get there early enough to fill out any paperwork we needed to and to hand over all the films, reports and records we brought with us so Dr. Cogen would have enough time to look over everything (assuming he would). Surprisingly, we actually were seen right away.
My parents went with us and stayed with Maile in the waiting area while Mike and I took Kale into the exam room with Dr. Cogen. After looking at the films from Kale's MRI he had shortly after he was born, he explained to us that even though Kale's left eye appeared to be normal in size, it was in fact misshapen and not the size it should have been at birth (the right eye is definitely severely microphthalmic and there is no vision there whatsoever, but we already knew that). He pointed out to us in the films where it was rigid and underdeveloped and said that if there was any vision, then it should have been looked at between two and three months of age. After three months of age with no type of visual therapies or whatever (I can't remember exactly what he said, and I'm trying my hardest to explain it) it's pretty much a lost cause. He used the term "use it or lose it" a lot, but not in a negative way. I think what he was meaning to say was if Kale had any type of vision in his left eye, it needed to be dealt with during that time frame. But since it wasn't, that window of opportunity is pretty much long gone.

Yeah. So I was pissed and started to cry. All I kept thinking was that Dr. Redmond here in Pensacola never explained any of this to us. He saw us for five minutes in the NICU just to tell us that he had bilateral microphthalmia and no hope for functional vision. And that he may not even have an eye on the left side, it could just be tissue. And he'll see Kale again in April when he's seven months old for a follow up. What the hell.

Dr. Cogen explained to us that the chances of Kale having any type of vision aside from light perception were slim. I get that. But even if it was just one tiny percent possible, I think we should have been given that option to find out. To do what we could for Kale. Despite our being hopeful, we have prepared ourselves from the beginning with the idea that Kale will never see. But you can do that all day long and still be crushed when you're told that there was the option to know for sure and now you'll never know at all. I hate that Dr. Redmond has taken that away from Kale. I know one day I'll be able to shake it off, but right now it just frustrates me to no end. It's all still so new to us and there is nothing worse than feeling helpless when it comes to your children.

Ok. On with the appointment. Dr. Cogen brought in Dr. Scruggs who works in Ophthalmic Plastic and Reconstructive Surgery. She and Dr. Cogen are going to perform what they called an "exploratory surgery" on Kale next month. They are going to surgically open his eyes and check things out and see what's going on under his lids. Dr. Cogen tried to open his eyes himself and look but couldn't see much. Kale did not like that one bit. They then had an ultrasound done on his eyes. The u/s was just like any other u/s you'd have, just done on the eyes. Kale didn't like that either. Dr. Cogen did say though that the u/s pic on Kale's left eye looks a lot better than the MRI. He said the u/s showed that his eye is better shaped and more rounded than the film he saw earlier. But he also said that just because the outer shell of an eye looks good, the inside could still be a different story. But they'll know more once they do the surgery.

They then sent us down to another floor to see Dr. Cox who is an ocularist-a health professional who specializes in prosthetic devices for the eye. He wanted to see if he could fit Kale with conformers (which help to support the growth of the eye socket and the bones of the face. They are used to expand the orbit and the opening of the eyelid). I knew this wasn't gonna work, but let him try anyway. I was right. It didn't work. It just had Kale screaming for the third time in about an hour. Nice.

So now it seems that Dr. Cox will be present at the surgery so that he can go ahead and fit Kale's conformers in after they open his eyes up. After that we'll have to go back every six weeks for adjustments as he grows. I hate to say it, but I don't really know much more right now about the surgery. I don't know if it's outpatient or inpatient or how long his recovery time will be. I'm nervous about it, though. That much I do know. I know he needs it, but it's still scary to think that my baby boy is going to have to go through this. And from what Dr. Scruggs mentioned, it may not be the last time. Anyway, we should be getting more info in the next couple of weeks and then I'll update on that.

So.
I guess it's good that the ball is finally rolling but I'm still upset that we had to wait this long. Everything that I have read these past five months has said that it's important for a baby with anophthalmia/microphthalmia to be seen on a regular basis by an ophthalmologist and ocularist. But Dr. Redmond didn't want to see him until after he was six months of age. And when I called UAB back in October to set up an appointment, the lady I spoke to told me that they wouldn't see him until he was about six months of age. The reason why doesn't seem to coincide with anything Dr. Cogen said to us. I'm kind of confused, but of course I didn't think about any of this while we were there with him. Isn't that how it always goes, though?

Blah.

I'm done for now.

2009-03-05T20:17:00.001-08:00

I called UAB the other day to see what I will need to bring with me for Kale's appointment on Monday. I was told that I should have received something in the mail to fill out and mail back in. When I told the person that we had never received anything like that, she put me through to the lady who was in charge of mailing the paperwork out. Of course, I got her voice mail. And of course, she never called me back. So the next day (yesterday), I called that lady again and finally got her on the phone. Turns out she never sent it out. Something about being busy and out sick. Hmmmm. For the past five months? Whatever. Anyway, she said the paperwork was just stuff to fill out to save time and suggested that we just come to the appointment early to fill it all out. The paperwork that should have been sent to us included forms for us to authorize the release of Kale's medical records. So basically, without them having those forms beforehand, I will have to fill them out when I get there. And they won't even have any of his records or information on hand and the appointment will just be a big waste of time for everyone involved.

So today, I called Kale's pediatrician and also Sacred Heart Hospital's medical records department. I was able to get Kale's MRI report from his ped. along with a bunch of other important papers. Tomorrow I have to go to the hospital and request the records I need. I was told that I would be able to get everything that same day. I am going to try my hardest to get them to put the actual MRI onto a disc (my mom said they can do this). Here's why.

The MRI report that I got today? Says Kale has right microphthalmia. Not bilateral. It says that his left eye (which we've already deemed his "good eye") appears to be normal. And that is stated a number of times on that report and on some other diagnosis report. Then there's Dr. Redmond's diagnosis, which says Kale has severe bilateral microphthalmia. I think I've mentioned before that I found similar information on some paperwork that we have. What the hell???

We've always questioned Dr. Redmond's diagnosis and prognosis (which was that Kale is completely blind) because as Kale's parents, we witness every single day how our son reacts to everything. Any of you who have ever been around Kale, especially recently know what we mean when we say Kale "sees something" through that left eye, even if it is fused shut right now. You see the way he seems to be "looking for something". We definitely know he has light perception (big time) but it honestly seems like he sees more than that. Shadows, maybe? We don't know and won't know until he can tell us himself.

We hate to get our hopes up with this appointment coming up because it seems every time we do, we get bad news. Or we get no news. But hopefully this Dr. Cogen we're going to go see on Monday will take a look at the MRI and wonder what the hell Dr. Redmond was talking about. Or he'll schedule to have another one done. Or he'll see that Kale "sees". There has to be something good that will come of this appointment. Just the possibility that Kale might one day see his family that loves him so much...I can't even contain myself with that thought.

Ugh! Monday, just hurry up and get here already!

What Busy Bees We Be

2009-03-01T19:12:00.000-08:00

First I need to give a very public shout out to my parents. They took on three children and one baby for an entire weekend. Last weekend they took Maile and Kale to Alabama to visit my grandfather for his 83rd birthday (he had never met Kale and hadn't seen Maile in maybe two years) and picked up my cousin's kids, Wyatt and Lela on the way. During the entire weekend, my parents took care of all of them! So, seriously. Mad props to them. I probably would have jumped into the lake with a few bricks tied to my ankle, but they managed to make it back, sanity and kids still in tact.

Aiight.

So I'm sure I've mentioned a few hundred times or so about how busy the month of March is going to be for us. And, holy crap! Today is March 1st! A week from tomorrow, we will be at UAB for Kale's first appointment with a supposedly awesome pediatric ophthalmologist. I was telling Mike today that we really need to get a list of questions started for our visit. I'd hate to be on our way back and realize I forgot to inquire about something important to us. If anyone dealing with microphthalmia or anophthalmia is reading this, please feel free to offer up any questions to ask!

Two weeks from tomorrow, we have Kale's pre-op appointment for his tubes and he'll also have a tympanometry test done. At least, that's what we were told. The way our lucks goes, they'll have forgotten they told us about doing that test and it won't be done. But I will surely bring it up.

What is a tympanometry test, you ask? Good question. Here's something I just copied and pasted from the wonderful world of Google:
Tympanometry tests how the eardrum and middle ear are working. This test is important because fluid or other problems in the middle ear can affect hearing. During a tympanogram test, a small earphone is placed in the ear canal and air pressure is gently changed. This test is helpful in showing if there is an ear infection or fluid in the middle ear.

So, yeah. That's what that's about.

Also, two weeks from tomorrow is Maile's fifth birthday! I still cannot believe it. I will definitely be dedicating an entire blog to her on that day. What a goofball she is. She really is an amazing girl, though. And she loves her little brother so much. It's already evident how protective of Kale she is (I'll have to share that story soon, I have to have a little talk with some people first).

Three weeks from tomorrow, Kale will have tubes put in his ears. He's supposed to be tested again for hearing loss after the tubes are put in, but I don't know if that's something they will do immediately or something we'll have to schedule another appointment for. I will have to try and remember to ask about that at the pre-op appointment.

Well, that's the month of March for us. That's not including other things we've committed to (baby showers, other birthday parties), and who knows what else.

Don't be surprised if I disappear for a bit once the month is over...

2009-02-15T17:52:00.000-08:00

I can't believe I forgot to post this video of Kale in his Jumperoo! I put him in it about a week or so ago just to see if he even fit in it (of course, he fit in it) and he loved it!

One day in Ponyville...

2009-02-10T21:09:00.000-08:00

Fun times with Maile and Daddy!

Another good day

2009-02-10T15:22:00.000-08:00

The nurse, Teresa, from Kale's pediatrician's office called today to schedule Kale's next Synagis shot. As we were picking out a time, she said, "I see you guys were approved for the financial assistance for the shot." Yay!!! I had actually called that company this past Friday or so to ask about the status of our application and was told that they were just waiting to verify information with our insurance company. The lady had told me that if we were denied she'd call us, if we were approved then we'd get a letter in the mail. Looks like we have a letter coming our way. From what Teresa read to me over the phone, it qualifies us for up to $1500.00 in coverage and is good through next February. I think we have to reapply every year. No biggie. I'm just glad we don't have to worry about finding a way to pay for the Synagis shot! Whew!

Anyway.
So Maile and I were hanging out and playing with Kale earlier. I had him lying on the floor on his back and Maile started to sing some song she had learned from school. As soon as she started to sing, he started laughing. Hard. So I ran to get the camera and was able to record it.

After that I decided to put him on his belly for some tummy time and record that, too. And guess what? Kale rolled from his belly to his back for the first time ever, and I got it on video!!!! I was so shocked! I was just talking to his teacher yesterday about how he hasn't even attempted to do that and then today he does it out of nowhere. Pretty awesome, if you ask me. Let me warn you,though. There is a lot of squealing and/or shrieking going on after Kale does his thing. Uhh...and it's not coming from him...

Small world?

2009-02-09T14:07:00.000-08:00

Every Monday Kale's Early Steps Intervention teacher, Mrs. Courtney comes over. Today Kale had just fallen asleep when she came over so instead we just talked about some things to do with him and stuff like that. Sometimes Mrs. Courtney talks about the other blind student she works with and has mentioned that the little girl also has light perception, but only when she walks up to a window.

Anyway, today she was talking about the little girl and I asked her how old she was, and she said she is almost three. Then I asked her what her diagnosis is, if she could even tell me. She said she couldn't remember the full diagnosis but she said the little girl doesn't have her optic nerves but her eyeballs/globes are present. And then she said that the eyeballs are very small. I immediately said, "That's Microphthalmia!" I'm not too clear on why she never made the connection before, but whatever. I think there is a separate diagnosis for the absence of optic nerves, too. Anyway. She's good at what she does, so I'm not complaining.

Also, she said the little girl is currently wearing conformers/expanders but is getting prosthetics soon.

I asked her if there was any way we could meet the family or communicate with them somehow, even if just by e-mail. She said she would check with her boss but she didn't think it would be a problem.

How cool would that be? We'd actually have someone who knows what we're dealing with. We could learn so much from them. Hopefully it'll work out, because I don't know how else we'd meet anyone in person who has the same visual impairment as Kale.

1 in 10,000 babies, you guys. Seriously. Cross your fingers we can meet them!

Grammatical and/or spelling errors? I'm too tired to care.

2009-01-28T18:18:00.000-08:00

Kale had his ct scan of his temporal bone done today and we finally feel like some progress was made. He had to be sedated and that had us a bit worried, but it really wasn't that bad. He was given some liquid to drink and about fifteen minutes later he was in dreamland. The nurse took him away and about ten minutes after that we had him back with us.

After the scan we had to head over to see Dr. Chicola so he could go over the results with us. Let me just start out by giving you an example of what doctors should never say in the presence of the patient's parents when looking at a ct scan on a monitor:

"Oh, that's not good. See that there? (pointing to an area on the screen while talking to some other medical professional) That's not good at all."

An immediate silent freak out inside of my head ensued. I looked over at Mike for fear he'd go into panic attack mode. We were able to keep it together and soon everything was explained to us.

What Dr. Chicola was pointing out were large amounts of fluid in both of Kale's ears. He asked us if Kale has been sick at all, and I told him he'd had a bad cough about a month ago, but then it went away. Nothing other than that. He mentioned that it wasn't infected fluid so it's not something that needs attention right away, but it does need to be taken care of in the very near future. He then talked to his audiologist, Keena (remember her? from an earlier post?) and she had mentioned once again how she thinks we should go to Shands for some ASSR test, but she knew that we had all decided against it for now. Then the awesome Dr. Chicola totally backed me up and said to her and to me that he remembers everything I've told him on the phone and in person regarding certain things with the audiologist at Baptist and because of the discrepancies between what she stated and what I have stated, he doesn't want to send us anywhere just yet. Instead he wants to do everything he can to help Kale before he just sends us somewhere else. Which I think is awesome.

After that we went into another room to talk some more about what needs to be done for Kale. Basically they're going to put tubes in his ears and then perform an ABR test and see if it's the fluid that has had him "failing" all those other hearing tests he had at Baptist. And if he passes, then we'll pretty much be done with all the tests. And if he fails, then we'll just go from there.

March is going to be one busy month! We have Kale's appointment at UAB on the 9th, a pre-op appt on the 16th (which just so happens to be Maile's 5th birthday) and then the actual procedure for him on the 23rd.

Anyway. Dr. Chicola is actually turning out to be a pretty awesome doctor. He talked to us a little bit on a personal level just about how we're doing and how we're handling everything. He asked about Kale's microphthalmia and said he's purposely scheduling Kale's appointments after our UAB appointment because he wants to know how everything goes. Which I think is pretty cool. He seems to genuinely care and that means so much to us.

Now we just have to hope that once the tubes are in, he passes that ABR test...

2009-01-17T18:02:00.000-08:00

I finally have pictures of Kale smiling! My problem was that because he has light perception in his left eye, he flinched from the flash. So I took the flash off the camera, but then there was this orange light that still bothered him. I didn't realize how awful the orange light was until I closed my eyes and the took a picture of myself. Holy hell that light was bright! It was like some sort of laser beam hitting right in the eye! It took me a while to figure out how to turn that off, but I did. Apparently that light serves a purpose because every picture I took ended up super blurry. Eventually I got it all worked out and now I have happy pictures and even a little video of him "talking"! Enjoy!

2009-01-13T20:58:00.000-08:00

I got a call this morning from Sophia, Dr. Chicola's nurse. She wanted to let me know that their audiologist and the audiologist from Baptist both made the decision to have Kale sent to Shands Hospital in Gainesville for a more extensive hearing test. First, let me say how tired I am of hearing the phrase "more extensive". Sweet lord, I hear this from them all the damn time. Enough already.

Okay.

So I started to cry. I was so pissed off. I told her about how upset we were at the last appointment that what was supposed to get done, didn't. I also let her know that we are just so damn frustrated because we have been going back and forth with this whole hearing issue since he was 3 weeks old. Kale is already 16 weeks old, people! I just couldn't contain myself and I let her know how low we've been feeling about all of this and how all we want are some answers. She assured me that she would talk to Dr. Chicola when he came in and call me later.

Well, she called me around five o'clock or so and said that Dr. Chicola said that if I wanted to talk to him either in person or on the phone it would be no problem or I could just wait until he has the CT scan done at the end of the month. I told her I'd prefer to talk to him before so I can understand better where the decision to go to Shands came from. Not a minute later and I was talking to him on the phone.

So here's how it goes.

Apparently, the audiologist from Baptist who we saw three different times? She's the one pushing for us to go to Shands. The third visit we had with her, she told me on the phone that she was not confident in her testing results with Kale and that she wanted us to go to Shands to have further testing done that cannot be done around here. She also told me to find a local ENT. Which I did. That's where Dr. Chicola came in. Well, Dr. Chicola has his own audiologist and after hearing how we got nowhere with Baptist's audiologist (her name is Heather...thought I'd throw this out there since this may get a little confusing in a minute), he wanted to have his audiologist, Keena do her own testing. Which was supposed to take place last week. Well, apparently Keena and Heather know each other and when Keena called over and talked to Heather to go over Kale's testing, Heather basically somehow convinced Keena to do things her way.

Dr. Chicola told me on the phone (and had told us before, but I forgot) how he had sent a baby over to Shands last year to have this testing done only to have that family get all the way there and the doctors over there wouldn't do it. So they made a trip for nothing. He told me he was really leery of sending Kale over there for that same reason.

I explained to him how disappointed we were last week when we went to the appointment thinking we were gonna have testing done only to be told instead that Kale will be scheduled for a CT scan. He told me that's when Heather got to Keena and convinced her to not do any more testing. I'm not really sure what this Heather's problem is, but I'm so tempted to call over there and ask her to butt the hell out. Mike, of course is telling me not to. But damnit. I'm not sure if she's just pissed b/c another audiologist (who she knows, apparently they used to work together) was going to retest Kale. But that was never my plan. I just did what she told me and found an ENT doctor who just happened to have his own audiologist who he felt should test Kale herself.

He also explained to me about the CT scan. He said that he's doing it to see if there's fluid in Kale's ear and to make sure the anatomy of his ear is normal. If everything is fine, then he said we can go ahead with the testing we had planned on with his audiologist. If not, then maybe we'll see what our other options are. He said that we don't have to do anything Heather says (duh) and the decision is ultimately ours and his to make together.

He also said that his gut feeling tells him that Kale isn't severely deaf, if deaf at all.

So there. I feel so much more at ease about all of this now. It's still a waiting game, but at least it's a little less stressful than it was just a day ago.

Good things

2009-01-09T07:24:00.000-08:00

I cannot wait to find out what for sure Kale can and cannot see.

About a week ago, Mike had Kale on the floor in his bedroom. He would put his hand over Kale's left eye (the "good one") to block out the light and then move it away after a few seconds. Every time he'd move it away, Kale would move his own hand back over it. Pretty cool, huh? We know he has light perception in that eye, even though it's still closed. But what if he can see more? What if he can actually see shadows? What if he can actually see? Even just a little?

Since then, I have noticed that when we're in the living room and light is shining in through the windows even just a little, he will move the back of his hand over his left eye. He does this a lot.

It may just be a sensitivity to light and nothing more. And I'm okay with that. The sunlight gets to him, too but he eventually gets used to it (I really need to get him a pair of sunglasses!). But gosh, what if it's more than that?

Another thing that Kale hates? The ice machine on the refrigerator door. I was holding him the other day while I was getting some ice water and as soon as he heard it, he went nuts! So, I know he can hear something.

He's doing so good with his neck control and prefers to "sit up" as opposed to being cradled. I can actually put him in his little bumbo chair for short periods (while I'm right there with him, of course). When he's on his stomach, he hold his head up high for long periods, too.

We're currently trying to get him to roll to his sides from his back, but that seems a little slow going. This is one of the milestones we're supposed to be working on according to his teacher. But we'll get there. He's already doing so well as it is and for that I am grateful.

Angels watching over?

2009-01-09T07:11:00.000-08:00

A positive post! Yay!

I remember someone telling me or reading something about when you have a baby and out of nowhere they look off into the distance and start to smile and laugh that it means an angel is there. Everyone pretty much knows that I have never been big on religion and if ever there was a time for me to be confused about all of that, that time is now. But I did like to believe that was true. I remember when Maile was a baby and this would happen, I liked that whole angel idea.

Kale smiles and laughs a lot these days. It doesn't take much for Mike, Maile or myself to get him to do it. Kisses on his cheek, his nose or rubbing his big belly or his roly poly thighs. All of these things work. Even talking to him, he gives us the biggest toothless smile.

Well, a few minutes ago I had Kale in his little vibrating chair while I was in another room and when I came back (I was still far enough away for him to think I wasn't around) he was just smiling so big. And he had his arms reached out like he was grabbing for something. This went on for a good thirty seconds or so. Could it be possible, that even though he can't see, he has his own little angel around him? If he can't see him/her, he still knows they are there? It was just the cutest thing and I couldn't help but just stand there and watch him. And smile.

2009-01-08T14:26:00.001-08:00

Today I started back at school after taking a semester off. I honestly didn't think I'd have any problems getting back into it. I mean, I don't, but things are so different. Since I started back a year and a half ago, I have taken either night or online classes. It just always worked out that way. Mike would come home from work and I'd leave for a class. Or I'd log into a class as time allowed.

This time? I don't have those options. My last three classes and they're all on campus (the one far away from me) and in the morning. It's so weird. The halls are filled with very young people. The classroom is filled with very young people. And I? I was not one of them.

Anyway, I started to silently panic today during class when the instructor went on and on about how he won't allow students to keep their cells on vibrate. If he catches anyone in that situation he will raise hell and blah, blah, blah. This sucks for me b/c I had planned on doing just that because while I'm in school in the morning, so is Maile. And if the school calls me to get her for whatever reason (getting sick, getting hurt, etc.) then I'm kinda screwed. And what if something happens with Kale while I'm not there? I won't know until later. And that makes me like such a crappy parent. I don't like not being able to "be there" for my babies. Today I was almost late to pick up Maile (my class ends 45 minutes before Maile's school lets out and it takes me that long just to drive there from the campus). Luckily, a friend also has her kids there so I was able to call her and ask her to stay with Maile in case I'm too late. I hate that feeling in the pit of my stomach...what is it? Oh, yeah. I know. Guilt.

Anyway, I talked to one of my awesome friends today and she assured me that she would help me out and pick Maile up from school for me if I ever need her to. She lives close enough to Maile's school so it works out. I just need to put her name and number down on the emergency contact list. And her and another friend have both offered to help watch Kale in the mornings if I need them to.

So, yay.

I will be so glad when this semester is over. Not just because I'll finally have finished but because then I won't feel so guilty for even going at all.

Crossing fingers and toes

2009-01-07T13:22:00.000-08:00

Well I did find out that that bill we received was for Kale's Synagis shot. It was for the first two months. So we still have another one coming for December. I called my insurance company first and they said that they cover 90% of the cost. Which leaves us with 10%. Which normally wouldn't be an issue except that ten percent of a couple of thousand dollars a month kind of adds up.

So I called Kale's pediatrician's office last week and left a message with his doctor (who of course was on vacation) to call me back. I wanted to know if this is something he absolutely needs. I got a call today from her nurse and she said that it is something they would prefer him to continue to get and she gave me a number to call for some place called Patient Access Network Foundation who are apparently "dedicated to improving access to needed health services for insured patients who cannot afford out-of-pocket costs associated with their treatment". I'm pretty sure that would mean us.

When the nurse gave me the number, I asked her if this is something that would be based on our income. She said that she had a family who used this program last year and they were pretty wealthy so she didn't think we'd have any problems. We'll see.
I went ahead and did what I had to do online (I hate having to do things over the phone) and now I have to print the application out and then have Kale's doctor fill it out and then mail it in. I have no clue how long this is going to take! I guess I should just go ahead and call and see if I can just get it done over the phone.

I think it's pretty clear by now how much I dislike even the idea of having to wait...

2009-01-05T16:04:00.001-08:00

I'm so tired of getting my hopes up for anything. Today should have been a good day. Today was not.

The appointments that we had today that should have given us some answers? Gave us zilch. Except another appointment sometime in the near future. Within the next four weeks. He wasn't given any test. Dr. Chicola and his audiologist (her name is Keena or something like that) came in to talk to us and said that Keena knows and worked with Heather (the audiologist from Baptist) and based on her results they would rather just do a CT scan on Kale. Dr. Chicola tried again to look into Kale's ears, but said he couldn't see his eardrum and so he cannot tell if it is "normal". And the only way he can do that is to do the scan and get a look at the actual anatomy of it. So, no testing as of yet. He said he'd rather just hold off on that right now. Although I don't really understand why.

Courtney Sasse, Kale's teacher was with us during the whole appointment and even she was confused.

So once again, we wait. And I'm tired of waiting. I'm tired of going back and forth. I don't understand why they couldn't have just called us and let us know that they wouldn't be doing what they had said they would be doing and save us more heartbreak. I know he can hear us. But because there is this "but how much?" looming over our heads, we have to keep up with all of this...this crap. I couldn't help but cry after the appointment. If I hadn't gone in there expecting answers, I wouldn't have been so upset.

Another crappy thing that happened today? Maile went back to school today after a two week break. She was so excited to get back and see everyone. Mike took her this morning while I stayed home with Kale. When Mike came back, he said that Maile has a new teacher. Again. This is her FOURTH teacher! Since August. For some reason they cannot keep a teacher for her class (and no, it doesn't have anything to do with her class). The first one got a better teaching job elsewhere. The second (Maile and I both loved her) was offered a better job outside of teaching and couldn't pass it up. This third one? Apparently had some family emergency over the break that made her move to Georgia. After the second teacher, Maile seemed kind of sad. When this third teacher came, Maile asked me if she was going to leave, too. It was so sad. So today...when I picked her up from school I asked one of the other teachers, "Another teacher, huh?" and she said yes, but she really thinks this one will stay. We'll see.

I just hate that this feels like daycare where it's never consistent when it comes to the people who work there. But this is a school! Not a daycare! I just hate having my daughter feel like teachers will always be coming and going. She loves to learn. But I don't even know if she's learned anything since the first month of school because of all of the switches. I mean, she knows her letters and numbers and things of that nature, but she knew those before she started this preschool. Her first teacher was teaching them French and sign language. Of course, that ended once she left.

So, yeah. Today? Should have been a good day. Today was not.

2009-01-04T18:05:00.003-08:00

Tomorrow should be interesting. Kale has a couple of appointments at Nemours. The first appointment he'll be sedated and they'll clean his ears out and then perform an ABR (auditory brainstem response) on him. He had this done before at Baptist Speech and Hearing but the audiologist there didn't seem to be comfortable with her results (he wasn't sedated for it). I think he may have an OAE (otoacoustic emission) test done, too but I'm not sure. He had that done three times at Baptist but with iffy results. The first time he failed in his left ear, the second time he failed both ears, and then the third time he failed his left again.

Anyway. Tomorrow after that he has another appointment with Dr. Chicola (ENT doctor) and he will go over the results of the tests with us. Hopefully we'll have some good news. I know that Kale can hear us, I just don't know to what extent. The last time we met with Dr. Chicola he told us that Kale could have failed the OAE tests simply due to "debris" in his ear. So who knows. That is why they're gonna sedate him, clean the ears out and then test him. And Dr. Chicola also told us that if Kale does have some hearing loss, it isn't severe.

I'm thinking everything is going to be okay, though. I'm relieved we're finally gonna have some answers. In that department anyway.

Bring it, '09.

2008-12-31T08:21:00.001-08:00

I am so in love with my kids. Honestly. How could I not be?

The year flew by, didn't it?

I hate to say this, but I am so glad the holidays are pretty much over. I really dislike being busy. I'm very eager to get back to things being laid back and plan free.

This is not to say that we didn't have a great Christmas! We absolutely did!

On Christmas Eve eve, my mom and mother-in-law came over and we baked cookies from dough my mom made. And on Christmas Eve, we put them out for Santa.

Our Christmas was nice. Our parents came over and we had a big Christmas breakfast. I think we may have started a new family tradition. Everyone opened up their gifts and then we ate until we could eat no more.

Santa brought Maile all kinds of stuff including a life size Barbie. And check out Kale's first piano!

2008 had its ups and downs but I couldn't have survived them without my family. And of course, our friends who are like family as well!

I am nervous, scared and excited to see what 2009 will bring. But--it's gotta be good, right?

Happy New Year, everyone. I wish you all the best in health and happiness!

Infusion services?

2008-12-27T14:11:00.001-08:00

I just got a bill in the mail for a few hundred dollars and I was confused as to what it was for. Under description all it says is "Infusion Services" and then the balance amount. It's from some place called Crescent Healthcare, Inc. based out of Anaheim, CA. There's nothing showing what insurance has paid, which is kind of odd. All of our bills always say what has been paid by them. Or so I though. Maybe I'm wrong.

Anyway. So I was going to call my insurance company but they're only available M-Th, regular business hours. I don't want to call the company b/c then they're going to want to make payment arrangements that I can't make right now.

So after thinking and thinking about what this could be for (there is no service date) and after checking out the website, I think I have it figured out. And I'm pissed.

Kale has to have this Synagis shot every month. It's supposed to help prevent RSV vaccine. His pediatrician was really adamant about having him get it. I've blogged about it before, but just to refresh everyone's memory, he's supposed to get it every 28 days, months November through April or May until he's two.

Before I agreed to have this done, I called the insurance company to make sure it was covered. Each shot costs around a thousand bucks. Which obviously we don't have. I was told it was a covered benefit as long as the provider provided a letter that the shot is a medical necessity. And I of course forwarded this information back to Kale's pediatrician. I honestly cannot remember word for word what the insurance people said, but I was under the impression that we weren't really going to have to shell out much if anything for it.

I guess not.

But there is no way in hell we can afford this on a monthly basis! And each month, his dosage is going to increase because it's dependent on his weight.

I guess I'm going to have to make a bunch of calls on Monday. It just ticks me off all over again how Kale cannot be covered by Medicaid or SSI. It makes no sense. He's a baby. How the hell can they deny him what should be rightfully his in terms of his health care? (NOTE: This is in no way an open invitation to bitch about politics. I'll delete any comments like that in a heartbeat.)

Eh. I'm just gonna make myself more upset by worrying about this. I'm done now.

Happy Holidays.
Blech.

And so it begins

2008-12-21T14:17:00.000-08:00

We took the little ones to see Santa at the mall today!

I'm not sure why Maile wouldn't smile. She wasn't scared, she has been super excited about it for a few weeks now. Oh, well. It's a cute picture. This is the one Mike took with our camera. We bought some from the photographer there, too.

In front of us in line was this lady and her daughter who was about Maile's age. While Maile and Kale were having their picture taken, the lady was paying for her pics. And watching Kale. Because everyone likes to watch itty bitty babies sitting on Santa's lap. No biggie. But then I noticed she had this horrible look on her face and I could tell what was going through her head: "What's wrong with him? And it took all I had not to go over there and bum rush her. So I stared at her as she stared at Kale, because I knew she would eventually look over at us. And she saw that I saw her. And then she did this fake smile. Mike saw the whole thing, too. He immediately asked me "What the hell is her problem?" After she "smiled" at me, she then looked back over at my BEAUTIFUL kids and "smiled". I wanted to be all "Look, lady. I already saw what you did. No need to try and play it off like you're not a horrible human being."

I know that people are going to look and people may even stare. But can't they do it without making me want to knock them out?

I never was a fan of Italy anyway

2008-12-18T14:39:00.000-08:00

Somebody from the Bilateral Ano/Micro Yahoo! group posted this in regards to parents of children with special needs. I like it a lot and wanted to share.

WELCOME TO HOLLAND

When you're going to have a baby, it's like you're planning a vacation to Italy. You're all excited. You get a whole bunch of guidebooks, you learn a few phrases so you can get around, and then it comes time to pack your bags and head to the airport.

Only when you land, the stewardess says, "Welcome to Holland".

You look at one another in disbelief and shock, saying, "Holland? What are you talking about? I signed up for Italy!"

But they explain there's been a change of plans, that you've landed in Holland, and there you must stay.

"But I don't know anything about Holland!" you say. "I don't want to stay!"

But stay you do. You go out and buy some new guidebooks, you learn some new phrases and you meet people you never knew existed. You're simply in a different place than you had planned. It's slower paced than Italy, less flashy than Italy, but after you've been there a little while and you have a chance to catch your breath, you begin to discover that Holland has windmills. Holland has tulips. Holland has Rembrandts.

But everyone else you know is busy coming and going from Italy. They're all bragging about what a great time they had there, and for the rest of your life, you'll say, "Yes, that's what I had planned."

The pain of that will never, ever go away.

You have to accept that pain, because the loss of that dream, the loss of that plan is a very, very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you will never be free to enjoy the very special and lovely things you discovered about Holland.

28 days later

2008-12-17T15:19:00.000-08:00

I had to take Kale in for his Synagis shot which is this RSV vaccine type thing he has to have every 28 days, November thru April/May until he's two-years-old. Anyway, it's kind of cool (for me, anyway) because he gets weighed each time. The dosage he gets is dependent on his weight. The last time Kale went in for this shot was on the 19th of November and he weighed 11 lbs., 5 oz. Five days later he had his two month check up and weighed 11 lbs., 10 oz. Yeah. That's right. Five ounces in five days.
And now...he weighs THIRTEEN POUNDS!!!

Can I grow 'em or can I grow 'em?

I just got a call from this lady whose name I cannot remember even though she just called . She is the lactation consultant from Sacred Heart hospital and I think she works with a lot of different programs, including Early Steps. Anyway.

She has called me once or twice before just to "check on things" which I always think is really checking to see if I'm breastfeeding or still pumping. To which I am doing neither. So after asking a bunch of questions about Kale and how he's doing, the dreadful "So are you breastfeeding?" question came up. I told her no, that I had been pumping but I've had to stop and that it just wasn't working for us as a family (I really didn't feel like explaining anything just to have her--or anyone--lecture me on how if I really wanted to stick to it, I could). Surprisingly, she was very understanding. She said she knew we had a lot going on and that things have probably been very difficult for us. I didn't agree or disagree with her, I just told her we were fine and that it just works better for us to formula feed as much as I didn't want to.

One thing she did ask in regards to Kale sticks out for me, though. She asked if he'd been fitted for prosthetics yet. I told her he wasn't even scheduled to see Dr. Redmond (the local PO) until April but that we have him going to see another PO in March over at UAB.

I just can't help but wonder if Kale is missing out on something. I was told by the technician at UAB that they won't see Kale until he's six months old because that's the age that babies who are not vision impaired start to really focus with their eyes. So it would be useless for them to look at his eyes any earlier. But I'm just scared that his face or his eye sockets aren't going to grow correctly. Right now he looks fine, but I can't help but wonder.

I don't know. The closer it gets to March, the more anxious and scared I get.

2008-12-17T07:43:00.001-08:00

So I think Kale is teething!

He's been pretty fussy the past couple of days. The way he's been acting is like when he has terrible gas (hey, we've all been there!). Except he's not having problems in that area, if you know what I mean. He goes all crazy intense with gnawing on his hands and fingers. In the past that has meant "Feed me, now!", but when we go to give him a bottle, he wants nothing to do with it. He'll gnaw on it for a few seconds and then push it away. Same thing with a pacifier. So I put a clean finger of mine his mouth and started to rub his gums and he calmed down.
I found a teething ring but the thing is big enough for him to wear as a belt (and you should know how big that is if you've seen this baby of mine). So last night I went to Walmart and found a pack of three smaller ones and he used one this morning. It was soooo cute! I had to pry his little hands open so he would hold on to one of the rings but once he had it and knew what to do with it after my showing him, he was content.

I don't remember Maile going through any bad teething phase. She just drooled a lot, got a rash on her chin and then one day she had teeth. Weird.

I didn't think babies could teeth this early, but then I read that babies can start to as early as three months (which he's a week shy of) and continue to for about three months or so before any teeth. Sometimes longer.

I'm so crossing my fingers and toes that it doesn't get as bad as I've heard some mothers say with the screaming and constant fussiness...

2008-12-15T21:29:00.000-08:00

Courtney, Kale's teacher from the Early Steps Intervention program came by today. The visit was pretty much just going over paperwork. She came later in the afternoon so she had the pleasure of meeting Maile. It's kind of tough because Maile doesn't really seem to understand yet what the deal is with Kale. And that's kind of a good thing. All she sees is her baby brother who she loves and can't get enough of. But she wanted all the attention on her during the visit and it was kind of hard to get her to just chill out without hurting her feelings. I can tell her all day long that Ms. Courtney is here for Kale and to help Kale and she will still be all up in her space. Ms. Courtney is super nice and was good with handling Maile but I wonder how this is going to work out in the future. We have planned to have her come on Mondays since that's when Mike is off of work. And she'll have to come in the afternoons once I start back at school because all my classes are in the morning. I guess I can just move it to Friday mornings if I need to. That way Maile is in school but I won't be on that day but then Mike will miss out on everything because he'll be at work.
Ugh.
This is making my head hurt.

Edited because public breakdowns are never a good thing.

2008-12-09T15:00:00.000-08:00

Man, I really dislike getting important phone calls when I'm not able to grab something to write everything down with. I end up sounding like a huge moron when I ask "Um, I'm sorry, but who are you again?"

I got one of those calls a little while ago while I was feeding Kale. It was a lady by the name of Marlene McCauley (or something like that) who is the ESE Social Worker for the Escambia County School District (that's us!). She was contacted by the Early Steps Intervention people in regards to Kale. She was super nice and seemed extremely excited about working with him. Like I said, I didn't have anything to write with so I'm sure I missed a few things she said or misheard certain things. But I think she did say that they will work with Kale's vision impairments until he graduates. How awesome is that? I mean, I guess it's no surprise that there would be help like that for Kale when he's in school. But it's still kind of cool to me that they're wanting to get started right away. And that I don't have to go out seeking the help out myself. (I'm very lazy.)

Anyway.
She wants me to call her after we find out the status on Kale's hearing so they can cover all the bases in treating him.

So, yay for Escambia County's ESE program!

Oh, is that what that's for?

2008-12-08T19:16:00.000-08:00

Kale still does not sleep in his crib. Not that he won't, we just haven't put him in it yet. He is 11 weeks old today. I guess maybe we should get on that, huh?

With Maile, she was still colicky at this point, and well into the following month or two. So sleeping in her crib never happened. Hell, sleeping anywhere never happened. The word sleep wasn't even in our vocabulary.

But Kale sleeps fairly well during the night. He doesn't sleep through the night without feedings or anything (I honestly have no clue how other peoples' babies do), but he'll sleep for a good four hours before waking up for a bottle.

Anyway, we've had him sleeping in his pac n play in the living room since Mike and I are usually both up late. And he'll nap in it during the day, so it's more of a convenience than anything. But I know that we have to get him in that crib!

I think we're both just scared, though. Having him in another room and all, even though we have a baby monitor...
I can't help but wonder if I'm more scared because of his condition. Like, if he were just a "normal" baby, would I be okay with having him sleep in a room by himself in his crib? And yes, I hate saying "normal" baby. But you know what I mean. If he didn't have any type of disability, I guess is what I mean. Gah. I really need to start figuring out how to word things correctly.

I don't know that I'll start tonight though. Kale has been fussy since last night with what seems to be gas pains and Mike and I haven't had much in the way of sleep or rest. I swear we've taken him on three different car rides in the past 24 hours just to 'de-fuss' him and get him to sleep. Thank god gas is cheap right now.
Anyway. If I have to hold Kale tonight in order to catch some Zzz's then that's what I'm gonna do.

I guess I'll just try tomorrow. Or the next day.

2008-12-07T21:27:00.001-08:00

Ever since Maile started VPK (voluntary pre-k) at her school, she has been coming home singing all kinds of songs and reciting bible verses (it's a Christian Academy). Last night we got to see her and her entire class perform them at the school's Christmas program. All the girls had to wear Christmas-y church dresses and the boys had to wear dress shirts and pants. The entire thing was just too cute.

What kind of mother would I be if I didn't take way too many pictures? Starting at home by the Christmas tree???

I just adore her dress and am glad that it's kinda big so she can wear it again next year. Target rocks when it comes to their Christmas dress selection.

And of course, Grandma, Lola, Kale and Lolo were there to see our little star shine!

Maile and her class doin' their thang.

After all VPK and upper grades performed, they all came out and sang "Happy Birthday, Jesus" together. I ended up moving to sit on the floor right in front of Maile to get some decent pictures. The little blonde girl next to Maile was cracking me up! She was getting all Mariah Carey on us with her hand movements and facial expressions. I have video of it somewhere but will just keep that to ourselves as I'm sure her mother probably wouldn't appreciate me letting everyone in the world see it.

I teared up a few times, I have to admit. My baby girl is getting so big and it's happening so fast. But I couldn't be more proud of her. She is so amazing and Mike, Kale and I are so lucky to have her in our lives.

2008-12-04T06:47:00.000-08:00

So I am looking at the Kale's discharge papers from when he was in the hospital checking to see what it says under "diagnosis". I recall seeing something listed other than the Bilateral Microphthalmia.
And I found it. It reads "Suspect possible diagnosis maybe blepharomphimosis ptosis epicanthus enversus syndrome or BPED, microdeletion gene on chromosome 3 q".

Yeah. What?

Thanks to the Internet and Google, I just found this site, however that explains it a little better. It actually breaks down each term if you scroll down (assuming you even want to), and it sounds a lot like how Kales eyes look right now.
Ok. So now I just read something in the paperwork saying that according to the MRI done on Kale the day he was born: "Right microphthalmia; Optic nerves are relatively similar in size with the right being slightly diminished when compared with the left; the left globe (meaning eyeball) is normal in appearance".

My issue is we have been told he has bilateral micro, meaning both eyes. But that statement says to me that it's just his right eye. What the hell?

Thank god we are getting a second opinion in March.

I know we have more paperwork somewhere that gives us the actual sizes of his "globes". I'm gonna go do some Googling on what the normal size is and compare it with what his are.

2008-12-02T18:00:00.000-08:00

I decided to start this blog to keep those who know us updated on the going-ons in our life, and to share with those who don't know us, but have similar situations like that of our son, a little about us.

I am a married mother of a 4 1/2 year old version of myself, Maile.

We also just had a baby boy, Kale, on September 22, 2008.

Kale's eyes did not fully develop in the womb and he was born with a condition called Bilateral Microphthalmia (meaning "small eye"). We were told his is a severe case, which is based on the size of his eyes. As of now, he is blind. I say "as of now" because we just don't really know. We believe he has some light perception but we probably won't really know the extent of his visual impairment until he is older. His eyes are still shut, but they seem to be opening up a little more as time goes by.

There are some issues with his hearing, but we've been going back and forth with this for the past eight weeks and still won't know anything until January 5th, when he goes for some more testing which will hopefully give us some answers. We're seeing Dr. Chicola with Nemours and are impressed with him already just after one meeting.

Until then, we are just loving him and all the smiles he brings to our little family. Maile just adores her baby brother and we are just in heaven with them both. Check out how "healthy" our butterball is! He's 10 weeks old and as of last week, he weighed 11 lbs., 10 oz. and is 23 inches long! Doc says he's perfect though, which is no news to us.

The past ten weeks have been jam packed with specialists and doctors visits all over town. Cardiologists, audiologists, pediatrician, ENT...it's kind of nice to have a week where we don't have to go anywhere!!! We don't have to go for another two weeks actually, and that's just for Kale's 3 month check-up. He also has to have the Synagis vaccine (to prevent RSV) every 28 days, November through April until he's two. Fun, fun. Here's hoping he becomes immune to the whole fear of getting shots as he gets older.

Yesterday a few ladies from Early Steps Intervention program came over to do an evaluation on Kale and ask us a bunch of questions regarding his development. They rang a bell around his head to see if he would move towards the sound...he was kinda iffy on that. They also shined a little light back and forth in front of his closed eyes to see if he'd "follow" it. He did! Somewhat. But they totally noticed it and while I know there are some parents of children with Microphthalmia that say light perception is no big deal (I read this on a message board recently), it's still something to us. Maybe in a few years it won't matter but right now it does.

The physical therapist and the ITDS (infant toddler development specialist) both said that Kale's on track development wise and they were amazed at his neck and head control. The PT also mentioned that people who are blind usually do not lift their heads up since there is no real motivation to do so. But Kale is always lifting his head up and "looks" around. His little eyes seem to be searching for something, even though they're closed. It's kind of hard to explain, you'd just have to see it for yourself. I'm glad the ladies noticed. They said that he's got to be able to "see" something, even if just light and shadows. But who knows.

The next couple of months are just gonna be the ignorant bliss kind of months as Kale isn't scheduled to see a PO (pediatric ophthalmologist) until March. We're taking him to UAB to see Dr. Cogen who treats Kale's condition a few times a year. We were originally scheduled to see the only PO here in our area, but have decided to go elsewhere for our own personal reasons.

Oh! I almost forgot! I got Kale to laugh today! I was doing what I could to make him smile and he laughed twice!!! I had to call Mike at work and tell him. I know it doesn't seem like much, but when your baby can't see you it gets frustrating not being able to communicate through sight. So the smiles he's been giving us the past week have been like little pieces of heaven and then today when I got a laugh? I almost cried, I was so happy.

Anyway, there are going to be rough patches, I know this. But I believe that the good times and good things are going to outweigh them significantly.