Saturday, April 30, 2011

The operation was a success.

KayTar's didn't have surgery this time...her baby did! A friend sent us an unopened, expired g-button so we could place one in a doll for KayTar. I spent Friday night trying to figure out if we could place it in Baby Alive and maintain her GI function, but without some sort of tiny doll MRI machine, it was highly unlikely. (We did try placing her in front of a super bright flashlight to try to visualize where her internal tubing was, but no luck. Do we know how to have fun on a Friday night or what?!) So today I picked her up a new chubby baby and prepped her for surgery...

I marked her incision site with a sharpie.

Surgery was a success!

Recovering well post-op.

Waiting to see her parents.

Ready for discharge!

So, do you think I can put this on my med school applications? ;)

Wednesday, April 27, 2011

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 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.

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.

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!

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 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 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.

Monday, April 25, 2011

A Mansion Mystery!

 For BubTar's birthday celebration, we decided to do a kids' murder mystery, because he's really into Sherlock Holmes and pretend play right now. We used this kit from Dramatic Fanatic. I've been a part of a murder mystery before, but this was the first time for us to ever attempt hosting something like this, so I had no idea how it would go, especially with 6-9 year old kids! I was pleasantly surprised! The kit itself was really well-though out and organized, that made it easy to handle. The only thing I would have changed was the square footage in my house, because we had QUITE the turnout and it was packed in our living room. Our poor little AC was having trouble combating all that body heat! I was glad so many people came to celebrate our boy, though. He's a very sensitive guy and at times he gets to feeling like he doesn't have any friends...well, they sure proved him wrong! All of the kids did really great with their parts, though not everyone dressed up (it was optional), and seemed to have a great time! BubTar said that his school friends were still talking about it today! He also made out like a bandit as far as gifts are $90, plus quite an array of toys, books, games, and clothes! I'm a little jealous. ;)

KayTar, as Zee French Chef.

 BubTar as Marvin the Millionaire and his cousin as Detective Achoo.

Marvin delivering a speech.

 BubTar now as Michael, Marvin's twin...mourning after Marvin's untimely demise.

 Michael in the hot seat.

More questioning of Michael.

Zee French Chef being interrogated by the Reporter and the Detective.

BubTar's cousin as the Reporter.

I have a ton of photos, but without parental permission, I don't want to post the photos of the other kids here. It really was a neat party. KayTar was definitely the best actress, she was in character and ON all the time, but BubTar really came out of his shell, so that was fun to see. He said he liked the party better than the presents! The ONLY person to guess the right perpetrator was KayTar's 6 year old best friend! She doesn't read well enough to have her own part, but she must have been paying CLOSE attention to the details...maybe a future detective in the making! If you are looking for a birthday idea that won't break the bank and is a change from the typical Chuck E. Cheese kind of party, check these out! KayTar is already planning on one for her 7th birthday next year...I think it is going to take me that long to recuperate from this one! ;)

Friday, April 22, 2011


 From this...

To this...

Happy birthday to the CUTEST (creative, imaginative, intelligent, funny) 9 year old I have ever laid eyes on!

Saturday, April 16, 2011

Too Familiar

So, things are still not going quite right for our KayTar and my anxiety levels keep on climbing.

My last post was on Tuesday. Wednesday, we saw the pediatrician and she gave KayTar a thorough neuro exam, which was normal. We all felt a bit better after than. KayTar was in true form and even joked the pediatrician. Here's the joke she used...

Will you remember me in a day?
The person says yes.
Will you remember me in a week?
Yes again.
Will you remember me in a month?
Yes a third time.
Knock, knock.
Who's there?
You forgot me ALREADY?!

She was super pleased that it worked on the doctor. When she tried it on me the first time, I figured out where it was headed and said, "It's KayTar!" But I sent her to Josh and she got him!

Anyway, Wednesday was fine. Thursday was fine...until it was nearly bedtime and we were talking in her bed and she grabbed her eyes and said, "Oh, I think my eyes are getting sick." It made my stomach drop, because when she used to have her episodes, she would mutter, "My eyes are sick." :( Then she said, "There is a hurricane in my eyes and my forehead!" So I went and got a dose of ibuprofen and gave it through the g-button and not 2 minutes later, she vomited...her feed, her dinner, probably her meds. I tucked her in once she was done, but she moaned in her sleep quite a bit. She cried out around 10:45, and told me her head still hurt, so I gave her acetaminophen. The rest of the night was pretty uneventful.

Friday morning was a little odd, she complained of a tight chest in the we did pulse ox, listened with the stethoscope, treated with albuterol...and went on with life. Her glucose was fine in spite of the vomiting the night before, thankfully. She went to school, because she seemed much better. I assumed everything was going well because I hadn't heard from her teacher or nurse all day, so I picked her up for PT around noon as usual. As soon as we kept the school building, she dissolved into a sad little puddle. She cried and told me she had a headache earlier and nobody sent her to the nurse...and that she had a tummy ache since lunch and hadn't been to the nurse for that either. I tried to talk to her about it, but she said, "I'm too tired to talk anymore." That is NOT my KayTar. She was coughing a whole lot, too. I called Josh for his opinion and we both decided she would be better off in bed than at PT. I brought her home and tucked her in and she was out in 2 minutes! That is also not typical KayTar.

I emailed the nurse and teacher, because I was a little upset to pick her up in that condition without hearing anything from them all day. I LOVE her nurse, she takes magnificent care of KayTar and loves her to bits, and her teacher is wonderful, too, and they all handle KayTar and her issues I was very perplexed. I sent a nice email, letting them know what happened when I picked her up and asked what happened during the day. At the same time I was sending my email, the nurse was sending me a summary of the day, because she had intended to talk to me when I picked KayTar up for PT, but we had missed each other in the office. It turns out everyone DID know about KayTar's head and tummy woes, but she still seemed functional in both situations and continued to participate in class and didn't complain more, so they just let it be. I'm all for KayTar being in class and not making an issue of little things, BUT right now a headache is not a little thing to me. Clearly, SOMETHING had taken a toll on her that day, as evidenced by her wilting like lettuce in the hot sun when I picked her up. The nurse apologized for missing KayTar's signals and the shape she was in when I got her, but I don't think it was anyone's fault. Sometimes KayTar keeps trucking when she shouldn't and it isn't always evident how poorly she is doing until she hits the wall. The new plan is ibuprofen at the first mention of a headache, regardless of her appearance. If she is doing fine, they can send her right back to class. If it is affecting her, then she needs to lay down in the office and I need to be called. Hopefully, that will clear up any confusion from here on out. We have a great team and I really feel good about how they care for her at school.

KayTar woke up a couple of hours later, sobbing about missing school and saying that she just wanted to give her teacher ONE more hug. She cried so hard she vomited! Sooo, I don't think she's trying to skip school! ;) In an effort to salvage our day (Josh and I both had major school stuff due, in addition to the KayTar drama), we decided to go out to dinner. We figured sitting wouldn't be too taxing for KayTar...but, right after the food arrived she said, "Oh! I'm gonna throw up!" We made a run for the parking lot (it was closer than the bathroom by far). She puked a little by the car (and on her skirt) and then I asked her if she could make it to the bathroom. She said yes, so we hauled it! We barely made it...and she puked all over the wall, the floor, the seat, and also in the toilet. Cleaning up that mess with wet paper towels was not awesome. When we came out, the boys had the food in to-go boxes, and KayTar and I went to wait in the car for them to pay. So much for salvaging the night!

I don't know exactly what is going on with our girl, but I certainly don't care for it. We see too many commonalities with her old episodes and we DO NOT want those to restart. This next week is a really big week between exams and presentations, plus KayTar's ARD and BubTar's birthday...and all I can think about is KayTar. I need this semester to end already, because this sort of distraction is not going to be good for my GPA! Josh and I are both getting a little school burnout and are looking forward to summer in a major way, so this doesn't really help our focus. I guess we have no choice but to muddle through for a few more weeks and hope things go as smoothly as possible.

PS: Knock on wood!!!

PPS: Yeah, we're back to superstitions around here.

- Posted using BlogPress from my iPad

Tuesday, April 12, 2011

Pink Robot Vision

KayTar had headaches three days in a row last week.

Tuesday, she complained of eye pain in the evening.

Wednesday, on the ride to school, she said she was having "pink robot vision" like when the words in her book were flashing red and green a few months back. Then she said she was seeing a pink dot. With her history of horrific, atypical migraine/pseudo-seizure hybrid episodes, it worried me so we dropped BubTar off and headed home for meds. On the way home, she told me that it felt like her heart had moved up to her forehead. She felt a little wobbly on the way into the house. I gave her ibuprofen and Zofran, and put her in my bed in the dark. About 45 minutes later, she called out to me, "I'm fine, when can I go to school?" I had get up and did the highly technical neurological tests of letting her try to read a book and watch the TV to see if it affected her vision again. All was clear, so I took her to school.

Thursday, she had more eye pain in the evening...a "hurricane in her eye" to be more specific. I emailed the pediatrician, but neither of could figure out where this was coming from so suddenly (no illness, no new stress, no sleep changes).

The next few days were fine and I thought we were past whatever it was, but that isn't the way things work. This morning, we found KayTar in the kitchen with an ice pack on her eye. We asked what was up and she said she had another hurricane in her eye. She seemed fine, though, so I gave her ibuprofen and they went to school. I was emailing KayTar's teacher and nurse, when Josh called me to say KayTar was complaining of "colored visions" they turned around and came home. I put her to bed, since we'd already given medication, and she was fine again in about 30 minutes. I waited a while to see if the pediatrician would want to see her, but brought her to school at about 9:30...but she was counted absent anyway. Oh well! Good thing excessive absences are in her IEP, we're definitely over the yearly quota.

I did talk to the pediatrician today, and she thinks we might want to restart Periactin. KayTar was on it as a toddler in an attempt to control her neuro episodes, and later as an appetite stimulant. It didn't ever control the episodes successfully, but it might be worth a shot with these. An appetite stimulant can't hurt either! I also realized that KayTar hasn't had neuroimaging done for 4 years! We may need to get that updated if these persist. I think we're going to see the pediatrician this week to get her looked over...but she seems fine to me, with the exception of these pesky auras and pains! Hope we can get to the bottom of this soon!

- Posted using BlogPress from my iPad

Friday, April 08, 2011

In Photos: The Old Days

I went through a box of old photos yesterday and found these gems. Josh and I, from 8th grade to 12th. That first one was taken in his grandma's house...which is now our house! That little guy in the photo is Josh's brother, who is in his twenties now! Gah! The second one is from a strip of photo booth photos...I edited out the ones where we were sucking face. Hahaha! We've officially been together FOREVER.

Saturday, April 02, 2011