Monday, April 27, 2009

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.

Sunday, April 19, 2009

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.


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!

Friday, April 3, 2009

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!).