Monday, March 23, 2009

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...

Sunday, March 15, 2009

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!






video

Tuesday, March 10, 2009

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.

Thursday, March 5, 2009

I called UAB the other day to see what I will need to bring with me for Kale's appointment on Monday. I was told that I should have received something in the mail to fill out and mail back in. When I told the person that we had never received anything like that, she put me through to the lady who was in charge of mailing the paperwork out. Of course, I got her voice mail. And of course, she never called me back. So the next day (yesterday), I called that lady again and finally got her on the phone. Turns out she never sent it out. Something about being busy and out sick. Hmmmm. For the past five months? Whatever. Anyway, she said the paperwork was just stuff to fill out to save time and suggested that we just come to the appointment early to fill it all out. The paperwork that should have been sent to us included forms for us to authorize the release of Kale's medical records. So basically, without them having those forms beforehand, I will have to fill them out when I get there. And they won't even have any of his records or information on hand and the appointment will just be a big waste of time for everyone involved.

So today, I called Kale's pediatrician and also Sacred Heart Hospital's medical records department. I was able to get Kale's MRI report from his ped. along with a bunch of other important papers. Tomorrow I have to go to the hospital and request the records I need. I was told that I would be able to get everything that same day. I am going to try my hardest to get them to put the actual MRI onto a disc (my mom said they can do this). Here's why.

The MRI report that I got today? Says Kale has right microphthalmia. Not bilateral. It says that his left eye (which we've already deemed his "good eye") appears to be normal. And that is stated a number of times on that report and on some other diagnosis report. Then there's Dr. Redmond's diagnosis, which says Kale has severe bilateral microphthalmia. I think I've mentioned before that I found similar information on some paperwork that we have. What the hell???

We've always questioned Dr. Redmond's diagnosis and prognosis (which was that Kale is completely blind) because as Kale's parents, we witness every single day how our son reacts to everything. Any of you who have ever been around Kale, especially recently know what we mean when we say Kale "sees something" through that left eye, even if it is fused shut right now. You see the way he seems to be "looking for something". We definitely know he has light perception (big time) but it honestly seems like he sees more than that. Shadows, maybe? We don't know and won't know until he can tell us himself.

We hate to get our hopes up with this appointment coming up because it seems every time we do, we get bad news. Or we get no news. But hopefully this Dr. Cogen we're going to go see on Monday will take a look at the MRI and wonder what the hell Dr. Redmond was talking about. Or he'll schedule to have another one done. Or he'll see that Kale "sees". There has to be something good that will come of this appointment. Just the possibility that Kale might one day see his family that loves him so much...I can't even contain myself with that thought.

Ugh! Monday, just hurry up and get here already!

Sunday, March 1, 2009

What Busy Bees We Be

First I need to give a very public shout out to my parents. They took on three children and one baby for an entire weekend. Last weekend they took Maile and Kale to Alabama to visit my grandfather for his 83rd birthday (he had never met Kale and hadn't seen Maile in maybe two years) and picked up my cousin's kids, Wyatt and Lela on the way. During the entire weekend, my parents took care of all of them! So, seriously. Mad props to them. I probably would have jumped into the lake with a few bricks tied to my ankle, but they managed to make it back, sanity and kids still in tact.

Aiight.

So I'm sure I've mentioned a few hundred times or so about how busy the month of March is going to be for us. And, holy crap! Today is March 1st! A week from tomorrow, we will be at UAB for Kale's first appointment with a supposedly awesome pediatric ophthalmologist. I was telling Mike today that we really need to get a list of questions started for our visit. I'd hate to be on our way back and realize I forgot to inquire about something important to us. If anyone dealing with microphthalmia or anophthalmia is reading this, please feel free to offer up any questions to ask!

Two weeks from tomorrow, we have Kale's pre-op appointment for his tubes and he'll also have a tympanometry test done. At least, that's what we were told. The way our lucks goes, they'll have forgotten they told us about doing that test and it won't be done. But I will surely bring it up.

What is a tympanometry test, you ask? Good question. Here's something I just copied and pasted from the wonderful world of Google:
Tympanometry tests how the eardrum and middle ear are working. This test is important because fluid or other problems in the middle ear can affect hearing. During a tympanogram test, a small earphone is placed in the ear canal and air pressure is gently changed. This test is helpful in showing if there is an ear infection or fluid in the middle ear.

So, yeah. That's what that's about.

Also, two weeks from tomorrow is Maile's fifth birthday! I still cannot believe it. I will definitely be dedicating an entire blog to her on that day. What a goofball she is. She really is an amazing girl, though. And she loves her little brother so much. It's already evident how protective of Kale she is (I'll have to share that story soon, I have to have a little talk with some people first).


Three weeks from tomorrow, Kale will have tubes put in his ears. He's supposed to be tested again for hearing loss after the tubes are put in, but I don't know if that's something they will do immediately or something we'll have to schedule another appointment for. I will have to try and remember to ask about that at the pre-op appointment.

Well, that's the month of March for us. That's not including other things we've committed to (baby showers, other birthday parties), and who knows what else.

Don't be surprised if I disappear for a bit once the month is over...