Wednesday, December 31, 2008

Bring it, '09.

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!

Saturday, December 27, 2008

Infusion services?

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.

Sunday, December 21, 2008

And so it begins

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?

Thursday, December 18, 2008

I never was a fan of Italy anyway

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.


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.

Wednesday, December 17, 2008

28 days later

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.
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...

Monday, December 15, 2008

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.
This is making my head hurt.

Edited because public breakdowns are never a good thing.

Tuesday, December 9, 2008

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 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.)

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!

Monday, December 8, 2008

Oh, is that what that's for?

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.

Sunday, December 7, 2008

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.

Thursday, December 4, 2008

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.

Tuesday, December 2, 2008

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,'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.