Appointment Round-Up!

We had a triple header yesterday! It has been a while since we've had multiple appointments on one day, but that's just how it worked this time. KayTar needed to see the ENT and have audiology testing done before her ARD meeting next week, but we got a surprise confirmation call about a GI appointment on the same day...it worked time-wise so we kept them all. It was a surprise because those pesky burglars stole my iPod which had KayTar's appointment schedule for the next YEAR on it, so I'm sure we'll be getting several more of those surprise appointment confirmations as the year goes on. I use Google calendar now, synced with my iPad and iPhone, in case the devices are stolen again, I won't lose all that information.

GI:
KayTar is still having fecal incontinence, which is a nice way of saying she almost always has stool leakage prior to going to the bathroom, which is our sign to put her on the toilet and ask her to go. We put her on the toilet at the same time every day to try to avoid that leakage, but there is a limit to how well you can control someone else's bowels...know what I mean? We give Miralax, we put her on the toilet at the same time to avoid accidents, but it isn't 100% effective, because her colon isn't 100% predictable. She is in undies, but we have to use pantyliners so we aren't changing/washing 3,000 pairs of underwear per day. Anyway, the GI thinks it is time to do manometry testing (link is not to our hospital, but the information is good) this summer, to find out if this is behavioral or if she truly doesn't have nerve signaling from that particular area. KayTar overheard me explaining the procedure to Josh on the phone and said, "What?! They want to put a balloon in my butt?! Am I going to float up to the ceiling?!" We're trying to decide if she is mature enough to handle it this summer or if we should wait until next year. I asked the GI if this continued fecal incontinence is common in kids like KayTar and she said, "Well, there aren't really any kids like KayTar to go by!" Isn't that the truth! KayTar was ON for that appointment. She really likes to perform for our GI doctor and we're lucky to get the chance to discuss any sort of business, honestly. Somehow, we found time to talk about the #2 situation in-depth and then touch base on her frequent vomiting, bizarre diet, elevated LFTs and reflux. We're not changing anything at this point, just updating information. She said the elevated LFTs might be from something mild, like a virus, or part of her overall presentation, but we don't want to do a liver biopsy just yet. We're seeing a new doctor in June who will likely re-order all sorts of labs, so if they are still elevated then, we might need to deal with it. I really like her GI doctor because she is always interested in KayTar as a WHOLE person, not just the GI-tract, so we also go over any changes to the whole picture since her last appointment. She is one of the few doctors who does this and I appreciate it.

After GI, we tried to meet up with Heather and her kids who are in town for medical testing/appointments, but it was lunchtime rush hour in the hospital so by the time we got food (There were like 6-7 doctors in front of us at Subway and KayTar said, "What is this, the doctor store?" LOL.), found an elevator with room for me and KayTar's stroller, and made it to the parking garage, we didn't have enough time left before they had to be off to their next appointment. KayTar and I had a quick lunch and went to the bookstore to kill some time before the next appointment. KayTar read part of a Flat Stanley book, Knuffle Bunny Free, Quackenstein, and The Stinky Cheese Man while I listened/borrowed Borders' Wi-Fi to check my email. We grabbed a coffee (for me) and a milk (for her) and headed off to the next stop.

Audiology:
KayTar HATES the sound booth testing. The white noise is too loud, the whistling is too whistley, the booth is too cramped. She did fine, though. Left ear is non-functional, right ear still looks perfect. Hooray!

ENT:
Is it just me or are ENT appointments totally useless? He basically looked at her and said, "Yup, those are ears, and that is a nose, and that is a throat." Oh well, we had to do it so we can get her otological eval for her ARD.

In the waiting room, KayTar made friends (doesn't she always?) with a mom and baby. The mom was very nice and chatted with KayTar with great interest and once KayTar hooks someone like that, I can't reel her back in...so I just went and sat on the floor near them. The baby was ADORABLE. Oh my gosh. He seemed to really like KayTar, too, which she loved. She's after me to give her a little sibling, but that's not happening! At one point, KayTar said, "Look (baby's name), you have ten fingers! One, two, three, four, five, six, seven, eight, nine, ten!" But the mom said, "Oh, look! How many fingers does he have?" Turns out he had polydatctyly and actually had TWELVE adorable, pudgy baby fingers. KayTar thought this was awesome and said, "Ohhhh, he's a SPECIAL baby...I just have ten." Sometimes I have to worry about saying inappropriate things, like "Why is that lady so wrinkly, did she stay in the bath too long?" or "That man is so FAT!" but I really never have to worry about how she'll react to differences like these...she's sees the best in all of it. Twelve fingers just means Kindergarten math will be easier for him. ;) Later she kept asking me, "Are you SURE I didn't used to have twelve fingers?"

After all our appointments were done, we headed over to the Ronald McDonald House (which KayTar thinks is AWESOME and is a little bummed we live too close to stay there when we need to see the doctors) to see Heather and her family.We had a great time and KayTar is just OVER THE MOON about her new teenage friends (seriously, the whole ride home was "My teenage friends..." this and "My teenage friends..." that.) and was tickled beyond measure that they all have g-buttons like her. We actually met Heather through our pediatrician, who evidently networks in the ladies' room for us, LOL! Dr. H was at the RM House with her mom a month or two ago and met Heather...her kids reminded our doctor of KayTar, so she got her contact information and her doctor's info, and I'm sure glad she did. For me, it is an exceedingly rare thing to talk to another parent who understands even half of what I'm talking about in reference to KayTar, so meeting someone who understands all of it, is miraculous. Her kids have mito and we'll be seeing their mito specialist in June. I'm really looking forward to having a fresh pair of eyes look over KayTar's case! Anyway, Heather and her family are so sweet and I'm very glad we had the chance to spend some time together...so is KayTar, who was doodling Abby's name this morning before school. Haha! She's already making plans for when they come back in June.

Information Processing

KayTar missed school on Wednesday (and Thursday and Friday), but I kept her ENT appointment because she wasn't feverish (yet). I had questions I hoped to get answers for and I didn't want to cancel unless I absolutely had to. Turns out, I actually got some answers. Imagine that! I'm going to break them into categories to make it more easily digestible. I've had two days and I'm still trying to swallow it all down.

1. Progressive hearing loss...

was confirmed. With her right ear masked (white noise fed into her functioning ear to block out sounds) her left ear tested completely in the profound range. There was a spike at the very end, but it wasn't high enough to get into the severe range. However, her bone conduction results looked much better than the regular test and the audiologist isn't sure of what that indicates. She said we definitely need an ABR to get more information. The ENT said this can be done during her surgeries, it will just add about an hour to her overall anesthesia time.

I asked him to give me the odds of it progressing to her right ear and he said there are none. However, he did say that if we were to get an MRI of the temporal bones and detect a soft tissue abnormality on the left that isn't present on the right, then that would be a good indicator that the right ear is safe, but no abnormality means no indicator. Her CT of her temporal bones was normal, but an MRI has more detail where soft tissue is concerned and an abnormality might be detected. Her brain CT was clear, but her brain MRI was not...that sort of deal. So if and when she has another brain MRI, we will add on a temporal bone MRI to reduce anesthesia for her. She sees her neurologist on the 13th, so I suppose we'll chat about it then.

He also said her hearing aid is probably not helping at all at this point.

2. Surgery

He thinks we should move the surgery up. In fact, when the nurse came in to schedule it she said, "How is October 14th for you?" And then my heart just fell right out my ass and landed on the exam room floor. Thwack! It was a little embarrassing, because then I had to scoop my heart back up and swallow it down again. Gulp. Her ENT feels that postponing the surgery until December will cause her to miss more school for infection than she would miss for surgical recovery time. I see his point, I've thought it myself to be honest, but...of course there is a but...I've been easing myself into this decision. See, I've made it, but I know I don't have to act on it for a few months which provides me with ample emotional digestion time. When he talked about moving it up, but insides were all "Whooooa! Let's throw on the breaks here, people! This is not what I signed up for!" My brain was all, "Oh, yes. I see your point. If that is what is best for KayTar, of course we'll do it." Then my insides were like, "But we have loads of agonizing What Ifs to go over before this happens! Emotional torture yet to be experienced!" and my head was like, "If you've decided it is the best thing for her, why wait?" I should sell tickets to these debates, I think.

Since I couldn't make a decision, I did the next best thing...I talked to our pediatrician. God love her, she told me that either decision would be fine. She sees the medical reasons to do it sooner and the momical (yeah, I made that word up just now) reasons I might want to wait. However, she did inadvertently lead me to an epiphany of my own by reminding me that the recovery will be no picnic for KayTar. If she wasn't getting a g-button at the same time, there would be no way we'd be able to do the tonsillectomy in the first place, really. Can you imagine KayTar wanting anything to eat or drink after throat surgery? HA! As it stands, she will be in the hospital for about a week and then she will be home and not feeling great for another week at least. If we do this during her Christmas break, it will ruin her holidays. I don't want her to have horrible holidays! There are other reasons, too, of course. Cold and flu season is descending upon us and being tonsil-free and in possession of a g-button will make it much easier on her. Sure, she'll miss 10 days or so for the surgery, but hopefully she will avoid at least that many absences by having the surgery. The only downside seems to be that I'll miss a week of my classes while I'm in the hospital with KayTar. If that is the only real problem I can come up with, I don't really see any reason to put it off. And just like that, I think I'm okay with it, and not just in the I'm-forcing-myself-to-be-okay-with-it-through-sheer-force-of-will kind of okay, the REAL kind of okay. I might even feel a tiny bit of peace about it all. Strange how that happens when you least expect it.

On Monday, I'll call the nurse and see if the 14th is still available for both the ENT and pediatric surgeon and then we'll go from there. The trickiest part of this is going to be keeping her healthy long enough to HAVE the surgery, I think!

I'll stop talking about this at some point.

Yesterday, KayTar went:

To camp

To the Children's Museum

Out to dinner

Take THAT, Anxiety!

Last night I still fell asleep thinking about her hearing, about food, about illness, about the Button. So I probably didn't show Anxiety much of anything and KayTar will probably be sick within the week, but it felt good in the moment. We were free! Or we fooled ourselves into believing that at the very least. Either way, it was nice.

We are restarting sign language with KayTar, back to the beginning it seems. Once upon a time, it was her only communication, but her speech really began to emerge after getting her little purple hearing aid. Signing fell by the wayside much like her wee walker had, a crutch she no longer needed. Here we are again, though, feeling the the beginnings of a communication struggle. Our words are not always reaching her ears with the meaning still attached, so the hope is that sign in conjunction with speech will alleviate some of the confusion. The hope that this is all an imagined response to an incorrect hearing test is still trying to keep its head above water for appearance's sake, but I don't think it can keep it up for too long. We got her new hearing aid mold this week and it isn't fitting quite right, which causes copious squealing. It is loud and annoying and we ALL hear it. Except, well, she doesn't. It is squealing directly into her ear and there is no response from her. She used to tell us, "My ear is squealing!" or pull it out when that happened, but now, nothing. Just one more weight dragging that sad little hope underneath the waves. In the end, it can't hurt to reintroduce signing, but if we don't and the loss progresses? Well, we'd just prefer to work on it now rather than later.

At the museum, she spent quite a bit of time in the little mock-up grocery store...mostly counting things and reading the signs and labels. I looked around the store and realized, she eats absolutely nothing they sell. Nothing. A grocery store geared to children and she eats not a single thing that is sold there. Ice cream was an almost, but they didn't have vanilla which is OF COURSE the only acceptable flavor. At dinner, though, she ate part of a bread stick and dipped it in alfredo sauce, which was HUGE! She hates cheese, so dipping her bread into a cheese sauce was like a miracle. She also ate a few croutons and a small bite of my mom's birthday cake without vomiting. An offer of a second bite was met with locked lips and a stern head shake, but she ate a bite of CAKE with ICING on it! It was a bit of a miracle, really.

When I step back from the whole g-button thing, quiet my emotions and look at the facts, I know it is the right thing. It isn't taking anything away from her, she'll still be free to eat and drink what and when she wants, but it is giving her an advantage she doesn't have right now. The freedom of nutrition and hydration that isn't a chore. It will do for her nutrition what sign language will do for her communication, it will give her options, insurance. I know that is the truth of it, but the moments where I can disconnect my emotional response long enough to really believe it are still a bit farther apart than I'd like them to be. In between those moments of clarity, I question whether we are doing it for her or for us, whether we are making our lives easier or hers. I wonder if we are trading in the problems we know for unknowns, swapping things like strep and dehydration for site infections and granulation tissue. On this side of the surgery, even though we've made the best decision possible, it still feels like a bit of a gamble. Hopefully once we get to the other side of the surgery, it will just feel like relief, coupled with wondering why we waited so long to go through with it in the first place.



Sometimes KayTar is sneaky. Very, very sneaky.

For your next self-pitying engagement, might I suggest the World's Tiniest Violins?

Yesterday was decidedly unpleasant for me, it was as if my emotions decided to take up residence right on top of my normally tough skin. Everything rubbed me raw, things that wouldn't even register on a normal day. I invited my friend Melon Collie over and we decided to throw ourselves a little party. We even had live music, The World's Tiniest Violins. They rocked the house. You should have been there!

KayTar had her hearing test on Wednesday and the audiologist noted about 30-40 decibels of additional loss in her impaired ear. She wants to repeat the test in the next couple of weeks to verify the results, but even without verification, it was enough to knock me off balance. She has these periodic tests to watch for progressive loss, but we never expected it to happen. Well, it seems to have happened, and once again it made me acutely aware of how little we know about KayTar's condition and future, and reminded me that we have no control over the outcomes. I've written a lot lately about accepting these unknowns, but I think what made that so easy to accept was believing the most difficult times were behind us. This little hearing test made me realize that maybe that isn't the case and I have no real way of knowing. It hasn't exactly been easy around here lately at the Depress-o-Blog; the illnesses, the dehydration, the episodes, the surgery talk, and now progressive hearing loss. We really don't know anything about tomorrow, we only know what we know today. Most of the time that is enough, but yesterday it simply wasn't.

So, while Melon Collie and I were rocking out to the World's Tiniest Violins, I indulged myself with a little game of What If, the goal of which is, of course, to make yourself cry. I won, in case you're wondering. Soon enough it was time for me to go to school, so I left Melon Collie here, and drove to school with the haunting rock ballads of the World's Tiniest Violins still playing in my mind. By the time we were dissecting our cats (sorry, Peanut!) I had forgotten the tune altogether. It seems to be impossible to feel sorry for yourself when dissecting a cat, I mean, whatever is going on in your life, you're still better off than the cat, right? It isn't enough that the poor thing is dead, it is also being cut to pieces by novices. What is a little progressive hearing loss when you are facing students with scalpels, really? It is all about perspective.

Today my feelings seem to be tucked back inside of my body where they belong and my rational disposition has promptly returned. My friend Logic is on his way over and we are going to read textbooks and case studies together and I won't be answering any of Melon Collie's phone calls or text messages today. I contemplated not mentioning Melon Collie at all, because he is one of those second or third string friends, the kind you aren't all that proud to be acquainted with in the first place, but I try to be honest here, even if this IS becoming the Depress-o-Blog. If I showed up today with Logic and didn't mention the big self-pitying bash I threw yesterday, well, that wouldn't be the whole story. Yesterday was difficult and I was sad. I cried! I can't remember the last time I cried about any of this...probably last year after that whole We Have a Diagnosis/No We Don't fiasco. It happens, every once in a while life gets just a little too heavy and you have to lighten the load. Then life goes on, just like it always does.