Wednesday, January 28, 2009

Grammatical and/or spelling errors? I'm too tired to care.

Kale had his ct scan of his temporal bone done today and we finally feel like some progress was made. He had to be sedated and that had us a bit worried, but it really wasn't that bad. He was given some liquid to drink and about fifteen minutes later he was in dreamland. The nurse took him away and about ten minutes after that we had him back with us.

After the scan we had to head over to see Dr. Chicola so he could go over the results with us. Let me just start out by giving you an example of what doctors should never say in the presence of the patient's parents when looking at a ct scan on a monitor:

"Oh, that's not good. See that there? (pointing to an area on the screen while talking to some other medical professional) That's not good at all."

An immediate silent freak out inside of my head ensued. I looked over at Mike for fear he'd go into panic attack mode. We were able to keep it together and soon everything was explained to us.

What Dr. Chicola was pointing out were large amounts of fluid in both of Kale's ears. He asked us if Kale has been sick at all, and I told him he'd had a bad cough about a month ago, but then it went away. Nothing other than that. He mentioned that it wasn't infected fluid so it's not something that needs attention right away, but it does need to be taken care of in the very near future. He then talked to his audiologist, Keena (remember her? from an earlier post?) and she had mentioned once again how she thinks we should go to Shands for some ASSR test, but she knew that we had all decided against it for now. Then the awesome Dr. Chicola totally backed me up and said to her and to me that he remembers everything I've told him on the phone and in person regarding certain things with the audiologist at Baptist and because of the discrepancies between what she stated and what I have stated, he doesn't want to send us anywhere just yet. Instead he wants to do everything he can to help Kale before he just sends us somewhere else. Which I think is awesome.

After that we went into another room to talk some more about what needs to be done for Kale. Basically they're going to put tubes in his ears and then perform an ABR test and see if it's the fluid that has had him "failing" all those other hearing tests he had at Baptist. And if he passes, then we'll pretty much be done with all the tests. And if he fails, then we'll just go from there.

March is going to be one busy month! We have Kale's appointment at UAB on the 9th, a pre-op appt on the 16th (which just so happens to be Maile's 5th birthday) and then the actual procedure for him on the 23rd.

Anyway. Dr. Chicola is actually turning out to be a pretty awesome doctor. He talked to us a little bit on a personal level just about how we're doing and how we're handling everything. He asked about Kale's microphthalmia and said he's purposely scheduling Kale's appointments after our UAB appointment because he wants to know how everything goes. Which I think is pretty cool. He seems to genuinely care and that means so much to us.

Now we just have to hope that once the tubes are in, he passes that ABR test...

Saturday, January 17, 2009

I finally have pictures of Kale smiling! My problem was that because he has light perception in his left eye, he flinched from the flash. So I took the flash off the camera, but then there was this orange light that still bothered him. I didn't realize how awful the orange light was until I closed my eyes and the took a picture of myself. Holy hell that light was bright! It was like some sort of laser beam hitting right in the eye! It took me a while to figure out how to turn that off, but I did. Apparently that light serves a purpose because every picture I took ended up super blurry. Eventually I got it all worked out and now I have happy pictures and even a little video of him "talking"! Enjoy!










video

Tuesday, January 13, 2009

I got a call this morning from Sophia, Dr. Chicola's nurse. She wanted to let me know that their audiologist and the audiologist from Baptist both made the decision to have Kale sent to Shands Hospital in Gainesville for a more extensive hearing test. First, let me say how tired I am of hearing the phrase "more extensive". Sweet lord, I hear this from them all the damn time. Enough already.

Okay.

So I started to cry. I was so pissed off. I told her about how upset we were at the last appointment that what was supposed to get done, didn't. I also let her know that we are just so damn frustrated because we have been going back and forth with this whole hearing issue since he was 3 weeks old. Kale is already 16 weeks old, people! I just couldn't contain myself and I let her know how low we've been feeling about all of this and how all we want are some answers. She assured me that she would talk to Dr. Chicola when he came in and call me later.

Well, she called me around five o'clock or so and said that Dr. Chicola said that if I wanted to talk to him either in person or on the phone it would be no problem or I could just wait until he has the CT scan done at the end of the month. I told her I'd prefer to talk to him before so I can understand better where the decision to go to Shands came from. Not a minute later and I was talking to him on the phone.

So here's how it goes.

Apparently, the audiologist from Baptist who we saw three different times? She's the one pushing for us to go to Shands. The third visit we had with her, she told me on the phone that she was not confident in her testing results with Kale and that she wanted us to go to Shands to have further testing done that cannot be done around here. She also told me to find a local ENT. Which I did. That's where Dr. Chicola came in. Well, Dr. Chicola has his own audiologist and after hearing how we got nowhere with Baptist's audiologist (her name is Heather...thought I'd throw this out there since this may get a little confusing in a minute), he wanted to have his audiologist, Keena do her own testing. Which was supposed to take place last week. Well, apparently Keena and Heather know each other and when Keena called over and talked to Heather to go over Kale's testing, Heather basically somehow convinced Keena to do things her way.

Dr. Chicola told me on the phone (and had told us before, but I forgot) how he had sent a baby over to Shands last year to have this testing done only to have that family get all the way there and the doctors over there wouldn't do it. So they made a trip for nothing. He told me he was really leery of sending Kale over there for that same reason.

I explained to him how disappointed we were last week when we went to the appointment thinking we were gonna have testing done only to be told instead that Kale will be scheduled for a CT scan. He told me that's when Heather got to Keena and convinced her to not do any more testing. I'm not really sure what this Heather's problem is, but I'm so tempted to call over there and ask her to butt the hell out. Mike, of course is telling me not to. But damnit. I'm not sure if she's just pissed b/c another audiologist (who she knows, apparently they used to work together) was going to retest Kale. But that was never my plan. I just did what she told me and found an ENT doctor who just happened to have his own audiologist who he felt should test Kale herself.

He also explained to me about the CT scan. He said that he's doing it to see if there's fluid in Kale's ear and to make sure the anatomy of his ear is normal. If everything is fine, then he said we can go ahead with the testing we had planned on with his audiologist. If not, then maybe we'll see what our other options are. He said that we don't have to do anything Heather says (duh) and the decision is ultimately ours and his to make together.

He also said that his gut feeling tells him that Kale isn't severely deaf, if deaf at all.

So there. I feel so much more at ease about all of this now. It's still a waiting game, but at least it's a little less stressful than it was just a day ago.

Friday, January 9, 2009

Good things

I cannot wait to find out what for sure Kale can and cannot see.

About a week ago, Mike had Kale on the floor in his bedroom. He would put his hand over Kale's left eye (the "good one") to block out the light and then move it away after a few seconds. Every time he'd move it away, Kale would move his own hand back over it. Pretty cool, huh? We know he has light perception in that eye, even though it's still closed. But what if he can see more? What if he can actually see shadows? What if he can actually see? Even just a little?

Since then, I have noticed that when we're in the living room and light is shining in through the windows even just a little, he will move the back of his hand over his left eye. He does this a lot.

It may just be a sensitivity to light and nothing more. And I'm okay with that. The sunlight gets to him, too but he eventually gets used to it (I really need to get him a pair of sunglasses!). But gosh, what if it's more than that?

Another thing that Kale hates? The ice machine on the refrigerator door. I was holding him the other day while I was getting some ice water and as soon as he heard it, he went nuts! So, I know he can hear something.

He's doing so good with his neck control and prefers to "sit up" as opposed to being cradled. I can actually put him in his little bumbo chair for short periods (while I'm right there with him, of course). When he's on his stomach, he hold his head up high for long periods, too.

We're currently trying to get him to roll to his sides from his back, but that seems a little slow going. This is one of the milestones we're supposed to be working on according to his teacher. But we'll get there. He's already doing so well as it is and for that I am grateful.

Angels watching over?

A positive post! Yay!

I remember someone telling me or reading something about when you have a baby and out of nowhere they look off into the distance and start to smile and laugh that it means an angel is there. Everyone pretty much knows that I have never been big on religion and if ever there was a time for me to be confused about all of that, that time is now. But I did like to believe that was true. I remember when Maile was a baby and this would happen, I liked that whole angel idea.

Kale smiles and laughs a lot these days. It doesn't take much for Mike, Maile or myself to get him to do it. Kisses on his cheek, his nose or rubbing his big belly or his roly poly thighs. All of these things work. Even talking to him, he gives us the biggest toothless smile.

Well, a few minutes ago I had Kale in his little vibrating chair while I was in another room and when I came back (I was still far enough away for him to think I wasn't around) he was just smiling so big. And he had his arms reached out like he was grabbing for something. This went on for a good thirty seconds or so. Could it be possible, that even though he can't see, he has his own little angel around him? If he can't see him/her, he still knows they are there? It was just the cutest thing and I couldn't help but just stand there and watch him. And smile.

Thursday, January 8, 2009

Today I started back at school after taking a semester off. I honestly didn't think I'd have any problems getting back into it. I mean, I don't, but things are so different. Since I started back a year and a half ago, I have taken either night or online classes. It just always worked out that way. Mike would come home from work and I'd leave for a class. Or I'd log into a class as time allowed.

This time? I don't have those options. My last three classes and they're all on campus (the one far away from me) and in the morning. It's so weird. The halls are filled with very young people. The classroom is filled with very young people. And I? I was not one of them.

Anyway, I started to silently panic today during class when the instructor went on and on about how he won't allow students to keep their cells on vibrate. If he catches anyone in that situation he will raise hell and blah, blah, blah. This sucks for me b/c I had planned on doing just that because while I'm in school in the morning, so is Maile. And if the school calls me to get her for whatever reason (getting sick, getting hurt, etc.) then I'm kinda screwed. And what if something happens with Kale while I'm not there? I won't know until later. And that makes me like such a crappy parent. I don't like not being able to "be there" for my babies. Today I was almost late to pick up Maile (my class ends 45 minutes before Maile's school lets out and it takes me that long just to drive there from the campus). Luckily, a friend also has her kids there so I was able to call her and ask her to stay with Maile in case I'm too late. I hate that feeling in the pit of my stomach...what is it? Oh, yeah. I know. Guilt.

Anyway, I talked to one of my awesome friends today and she assured me that she would help me out and pick Maile up from school for me if I ever need her to. She lives close enough to Maile's school so it works out. I just need to put her name and number down on the emergency contact list. And her and another friend have both offered to help watch Kale in the mornings if I need them to.

So, yay.

I will be so glad when this semester is over. Not just because I'll finally have finished but because then I won't feel so guilty for even going at all.

Wednesday, January 7, 2009

Crossing fingers and toes

Well I did find out that that bill we received was for Kale's Synagis shot. It was for the first two months. So we still have another one coming for December. I called my insurance company first and they said that they cover 90% of the cost. Which leaves us with 10%. Which normally wouldn't be an issue except that ten percent of a couple of thousand dollars a month kind of adds up.

So I called Kale's pediatrician's office last week and left a message with his doctor (who of course was on vacation) to call me back. I wanted to know if this is something he absolutely needs. I got a call today from her nurse and she said that it is something they would prefer him to continue to get and she gave me a number to call for some place called Patient Access Network Foundation who are apparently "dedicated to improving access to needed health services for insured patients who cannot afford out-of-pocket costs associated with their treatment". I'm pretty sure that would mean us.

When the nurse gave me the number, I asked her if this is something that would be based on our income. She said that she had a family who used this program last year and they were pretty wealthy so she didn't think we'd have any problems. We'll see.
I went ahead and did what I had to do online (I hate having to do things over the phone) and now I have to print the application out and then have Kale's doctor fill it out and then mail it in. I have no clue how long this is going to take! I guess I should just go ahead and call and see if I can just get it done over the phone.

I think it's pretty clear by now how much I dislike even the idea of having to wait...

Monday, January 5, 2009

I'm so tired of getting my hopes up for anything. Today should have been a good day. Today was not.

The appointments that we had today that should have given us some answers? Gave us zilch. Except another appointment sometime in the near future. Within the next four weeks. He wasn't given any test. Dr. Chicola and his audiologist (her name is Keena or something like that) came in to talk to us and said that Keena knows and worked with Heather (the audiologist from Baptist) and based on her results they would rather just do a CT scan on Kale. Dr. Chicola tried again to look into Kale's ears, but said he couldn't see his eardrum and so he cannot tell if it is "normal". And the only way he can do that is to do the scan and get a look at the actual anatomy of it. So, no testing as of yet. He said he'd rather just hold off on that right now. Although I don't really understand why.

Courtney, Kale's teacher was with us during the whole appointment and even she was confused.

So once again, we wait. And I'm tired of waiting. I'm tired of going back and forth. I don't understand why they couldn't have just called us and let us know that they wouldn't be doing what they had said they would be doing and save us more heartbreak. I know he can hear us. But because there is this "but how much?" looming over our heads, we have to keep up with all of this...this crap. I couldn't help but cry after the appointment. If I hadn't gone in there expecting answers, I wouldn't have been so upset.

Another crappy thing that happened today? Maile went back to school today after a two week break. She was so excited to get back and see everyone. Mike took her this morning while I stayed home with Kale. When Mike came back, he said that Maile has a new teacher. Again. This is her FOURTH teacher! Since August. For some reason they cannot keep a teacher for her class (and no, it doesn't have anything to do with her class). The first one got a better teaching job elsewhere. The second (Maile and I both loved her) was offered a better job outside of teaching and couldn't pass it up. This third one? Apparently had some family emergency over the break that made her move to Georgia. After the second teacher, Maile seemed kind of sad. When this third teacher came, Maile asked me if she was going to leave, too. It was so sad. So today...when I picked her up from school I asked one of the other teachers, "Another teacher, huh?" and she said yes, but she really thinks this one will stay. We'll see.

I just hate that this feels like daycare where it's never consistent when it comes to the people who work there. But this is a school! Not a daycare! I just hate having my daughter feel like teachers will always be coming and going. She loves to learn. But I don't even know if she's learned anything since the first month of school because of all of the switches. I mean, she knows her letters and numbers and things of that nature, but she knew those before she started this preschool. Her first teacher was teaching them French and sign language. Of course, that ended once she left.

So, yeah. Today? Should have been a good day. Today was not.

Sunday, January 4, 2009

Tomorrow should be interesting. Kale has a couple of appointments at Nemours. The first appointment he'll be sedated and they'll clean his ears out and then perform an ABR (auditory brainstem response) on him. He had this done before at Baptist Speech and Hearing but the audiologist there didn't seem to be comfortable with her results (he wasn't sedated for it). I think he may have an OAE (otoacoustic emission) test done, too but I'm not sure. He had that done three times at Baptist but with iffy results. The first time he failed in his left ear, the second time he failed both ears, and then the third time he failed his left again.

Anyway. Tomorrow after that he has another appointment with Dr. Chicola (ENT doctor) and he will go over the results of the tests with us. Hopefully we'll have some good news. I know that Kale can hear us, I just don't know to what extent. The last time we met with Dr. Chicola he told us that Kale could have failed the OAE tests simply due to "debris" in his ear. So who knows. That is why they're gonna sedate him, clean the ears out and then test him. And Dr. Chicola also told us that if Kale does have some hearing loss, it isn't severe.

I'm thinking everything is going to be okay, though. I'm relieved we're finally gonna have some answers. In that department anyway.