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.
Monday, July 20, 2009
Sunday, July 5, 2009
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!
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!
Wednesday, July 1, 2009
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.
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.
Friday, June 26, 2009
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.
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.
Friday, June 19, 2009
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.
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!
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!
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!
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