Recap

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

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

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!

Hope everyone has a safe and Happy Halloween!

Finally

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)!

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!

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....

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!

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

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.

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

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

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

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

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 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

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

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

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.

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

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....

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

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.

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

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.

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!

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.

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!

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

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

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!