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!

UAB

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

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

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

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

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

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

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

Blah.

I'm done for now.