Monday, August 29, 2011

Gastric Emptying Scan

KayTar had her gastric emptying scan today, or as she describes it, "I was taped to a table and shoved in a machine FOR HOURS!"

She was NOT a fan of being restrained. She let out a few peals of her patented, eardrum-rupturing KayTar screams as they taped her down, but she calmed pretty quickly with some help from Spongebob on the monitor. She couldn't use her hands, though, so I had to do things like rub her eyes or scratch her nose or wipe her tears. :(  We rigged up her Gee so she could rub her lips on it as needed for comfort. Once she resigned herself to her fate, which happened fairly quick, it was an easy enough test.


We didn't get any results at the appointment, but our fabulous pediatrician called me with them this afternoon. A normal result is half-emptying in 60 minutes, KayTar half-emptied in 73 minutes, which is only slightly longer than normal. However, she was only given 3 it took 73 minutes to empty out 1.5 ounces, which seems like a long time to move such a little amount. We've never done one of these before and the pediatrician doesn't have much experience interpreting the results, so she can't say if the rate of emptying is volume specific or stable across the I don't know what to make of it until we see her GI on the 13th. These tests are the sort you take with a grain of salt anyway, so we'll see what her thoughts are before changing things up. For the time being, her 4 ounce feeds every 2 hours seem to be well-tolerated so we're sticking with it. Oh, and they saw her refluxing again in this scan, too. We may need to add in another medication to help control that. I'm on pins and needles for her appointments the next few weeks; we follow up with her mito doc next Tuesday, have our first visit with pulmonary the following Monday, and follow up with GI the day after that. Here's hoping we learn something new and useful from all of this testing!

Sunday, August 28, 2011

Making Play-Dough!

Last Sunday, KayTar and I made some pink play-dough with an online recipe a friend shared with me. I'm not a crafty-type, but it seemed simple enough. The hardest part of the whole thing was finding cream of tartar! I seriously couldn't find it in the store, so I just stole/borrowed a little from my mom's pantry. Making it was so simple (we made some purple today!), and the play-dough was so soft and fun, I thought I would share the recipe here! You get a pretty good yield from just one batch (it fills two of these little tupperware containers).

1 cup flour
1 cup water
1/4 cup salt
1 tbsp vegetable oil
2 tsp. cream of tartar
And the food coloring of your choice!

Put it all into a pot and stir it together, then cook it over medium heat until it globs together.

Once it congeals, drop it out onto wax paper to cool, then knead it a few times as it cools. 

 Once it cools, it is ready to be stored or played with!
I hope you enjoy it as much as we have! :)

Friday, August 26, 2011

Letter to the Teacher, 2011 edition

Hi! My name is KayTar. I'm so glad to be in your class this year! My mom helped me write this letter to tell you a little bit about me that might help our year go more smoothly.

I am an excellent reader. I usually read 1 chapter book every 2 days, so I will be taking a lot of AR tests and checking out a lot of library books this year. I learn very well from written word, especially because I don't always hear verbal words or instructions as well. When I watch TV at home, I like the captions to be on, so I can follow what is happening. I think it would help me a lot if my reading skills were used in class to help me keep up with what is happening in our room! Sometimes I get distracted or forget what I am supposed to be doing, so my other teachers have provided written instructions for classroom tasks and schedules and it helps me a lot.

I can't hear with my left ear. I used to wear a hearing aid, but my hearing got worse and it stopped helping. Because I don't hear as well without it, make sure you speak clearly to me. If you are helping me do something, stay on my right side. It is hard for me to filter out background noises and I might have a harder time focusing, especially if the room is noisy. This is another reason it helps me to have written instructions.

I wear glasses to help me see clearly. I am nearsighted, so my glasses help me to see things that are farther away. I like to be very close to what I am looking at usually, because my eyes work best when I am up close.

I am a little slower than my friends and I get tired easily if we are walking long distances so I might need extra help. Sometimes I fall down, because I'm not always steady on my feet, especially when I am distracted. I often have a difficult time keeping up with the class when we have a fire drill and I might need 1 on 1 help from a grown-up when that happens. My doctors think I have a disease that causes me to be weaker than my friends and causes me to run out energy much quicker than they do. It may seem like I am being lazy at times, but my body just cannot always keep up. Because the muscles in my hands get fatigued and weaken easily, I am supposed to trial a word processor to help me with writing work. If I get very run down or tired, I may need to rest in the nurse's office or have my glucose checked. The nurse is very familiar with my medical needs. I get tired much quicker when I'm even a little bit sick and there may be times I need to sit out of PE during the year. If I ever complain of being dizzy or wobbly or say my legs aren't working, I need to see the nurse right away.

I am very sensitive to heat and cannot be outside for very long in the heat of the summer months. While it is so hot out, I may not do so well during recess if it is in the afternoon. Sometimes being out in the heat causes me to run a fever, even if I'm not sick. If I am having trouble with the heat at recess, I may need a quiet indoor activity while my class is outdoors. 

Some days throughout the year, I am very light sensitive and can't bear to be out in the sunlight. I have magic lenses in my glasses to help, but some days they don't help enough. If my friends are going outside and the sunlight is bothering me a lot, I might need to go sit in the nurse's office or with another class while my friends play outside. Other days it doesn't bother me as much and I enjoy playing outside with my friends very much!

I get migraine headaches and if I ever complain of head or eye pains, or changes to my vision, send me to the nurse immediately for medication, even if it doesn't seem to be keeping me from participating. It is important I get my medicine at the beginning, so they do not get much worse.

I have asthma and if you notice me coughing a lot or coughing so hard that I gag/vomit, I need to be given 4 puffs from my Albuterol inhaler with my yellow spacer mask.

I don't like to eat much, so at lunch or snack time I might choose not to eat. My mom will send something that I like every day, just in case. The textures of some foods might make me gag, either by sight or touch. I try my best not to touch these foods or get too close, so if I ball up my hands or say "No!" it means it is probably the kind of texture that will make me gag. If it gets too close to me I might push it away from me to protect myself. Sometimes just thinking about these things might make me feel sick. I have a g-button and a special feeding backpack that give me all the things I need to be strong and healthy. I also need the nurse to check my glucose to be sure my body is getting enough of what it needs. There are times when my tummy just doesn't work right and I vomit even when I'm not sick. The nurse knows how to help me and will call my mom if she thinks I may need to go home, but many times I finish the school day even if my tummy is acting funny.

My lips and tongue have gotten VERY big a few times and my doctors aren't sure why this happens,  if you notice my lips swelling, or if I say, "My tongue hurts." it means I'm having an allergic reaction. Take me to see the nurse immediately. I need to have 1.5 teaspoons of Benadryl per my g-button. If I have trouble breathing or stop breathing, I need to be given my EpiPen Jr. Call my mom immediately if I have signs of an allergic reaction.

My colon doesn't work quite right and I have to take medicine to help it out, because of this, sometimes I have potty accidents. The nurse will have supplies to handle this if it is an issue. At bathroom breaks, it might help if you reminded me to try to use the bathroom even when I say I don't need to. I may need to wear pull-ups some days when I am having some trouble with this.


I'm so excited to be in school this year and I know I will have lots of fun in your class!

Your new student,


If you've read the previous years of her Letter to the Teacher (2008, 2009, 2010), you may notice that we took her neurological episodes off altogether this year. It has been over TWO YEARS since she has had one. Whoa. The letter may be growing a little every year, but it still feels good to cross that one off.

Tuesday, August 23, 2011

First day of school...


Today was a very good day, but I'm exhausted, so I'm going to do this list style.

1. They both liked their teachers. BubTar is in class with a few kids from last year and/or the year before and KayTar has a handful of her Kindergarten pals in her class.

2. KayTar wore her pump backpack from 9:30 to 1:30ish and did really well with it. Though, when the nurse came to take it off, she said "It's KILLING ME." Such drama.

3. Her energy was really great today. She woke up on her own this morning, she was perky when I had lunch with her, and she had enough energy this evening to go visit her "teenage friends". That was a great first day of school treat for her (and for me!).

4. She told the "hot intern" that he is hot. I said, "KayTar! I told you not to flirt!" and she said, "It isn't flirting. It's TRUE!" I don't know what I'm going to do with that girlie! To be fair, last year she noticed that the female librarian was wearing a new lip gloss and told me "She looked like a HOT LADY today!" she isn't entirely boy crazy, she just likes to take note of attractiveness. LOL. She is a *little* boy crazy, though.

5. BubTar is officially too cool to have lunch with me in the cafeteria. He did let me kiss him on the cheek, though, before I left after eating with KayTar.

6. Our school nurse is super amazing. KayTar left her glucometer in the office and the nurse drove it by our house this evening! There are a lot of reasons she is amazing, but that is one example. She really takes exceptional care of KayTar at school!

So, one (good!) day down....a whole lot more to go!


This speaks volumes about their personalities.

My beautiful FIRST grader!

My handsome FOURTH grader!

This is his "Mom, please stop embarrassing me." face
My cute little lady settled at her desk!

Monday, August 22, 2011

First day of school...


Here is the big takeaway message from today. It is HOT in Houston, like miserable, sweltering, entertain-the-idea-of-jumping-in-front-of-a-car-on-the-walk-from-the-parking-lot-because-the-ambulance-that-came-to-get-me-would-have-air-conditioning HOT. 22 record-breaking consecutive days of 100+ weather (that is without adding the heat index), with a forecast of the same for the rest of the week. BLURG. Unfortunately, this semester I did not get a spot in the parking garage, so I had to park in the lot...which is farther away. Walking from the garage last year was far enough for me, because it involved an uphill walk with a bag full of books. The lot is farther, and the walk is even LONGER because they are doing gobs of construction on the streets near the campus. So, the walk over the river (bayou) and through the woods (other parking lots and construction sites) up to the bookstore was long/hot enough. Then I got to walk back down the hill/through the maze with 6 college textbooks in hand, all the way back to the parking lot, before heading back out to the building my class was in. It was miserable. The humidity was oppressive and the wind was non-existent. I think I live in the wrong state! I was born in Alaska and I think my biological thermostat was meant to run a little bit cooler than this.

My first class was Calculus, taught by Dr. Pepper. No joke! My professor's name is Dr. Pepper. He seemed like a nice, even tempered guy with realistic expectations. The homework will NOT be online (hallelujah, I really, really hated the interface for the online PreCal homework last semester) and it will not be graded/mandatory unless we really do badly on the first test, then he'll start taking completion grades. 2-3 exams, 1 final, 5-10 quizzes with the easier questions from the sections. Sounds doable. We took a Algebra review pretest, which I do not think I did awesome on...but it isn't for a grade, so that is okay. After Cal, I walked waaaay up the hill again to the other building for Govt II. The professor reminded me just a wee bit of a leprechaun, and he is definitely a talker. We spent the entire class period going over the syllabus!

After that was over (and after the looong, sweltering walk back to my hot-enough-to-melt-crayons* car), I picked up the kids and headed to Meet the Teacher. We bought their supplies from the PTA, because it is a million times easier than tracking the items down, and dropped them by the classes. BubTar's teacher seems great (and I've heard great things about her), the kids met their new SLP and librarian (who gave the kids books, I think she knows the way to their hearts), talked with the nurse, and visited KayTar's classroom, although her teacher wasn't there due to a family matter. I think we are ALL ready for tomorrow! The good news is that I have no classes tomorrow, so I'll be around to help with any issues that might come up as we work out the first day kinks. I was supposed to be in class tomorrow, but I was taking that section for a specific professor and she emailed me tonight to say she got switched to a different I searched for an online class at Josh's suggestion and found one! Now I'm only in classes 3 days a week. :) I was going to be missing a lot of that class due to KayTar's already scheduled appointments, so it really worked out well in the end. I just hope the professor isn't too demanding, that is always the risk with online classes. Honestly, I'm pretty thrilled not to have to walk to campus in the heat again tomorrow!

*Not just a figure of speech.

Tune in tomorrow for the rest of the 'Tars first day stories...theirs will include cute pictures, too!

Saturday, August 20, 2011

Doing Better!

Yesterday was rough, at least at the start. In spite of me getting up at 2am to re-dose her with Zofran and again at 3am to give her fluids...she woke up with a glucose of 55. That is NOT what we want to see! Her glucose was very sluggish to respond, but she was tolerating clears by g-tube, so we kept at it and it started to come up. She needed Zofran through the day, but in the afternoon we were able to get her back on formula rather than just clears. In the evening, we trialed her off of Zofran. It started well, but about an hour and a half after her dose would have been due, she started complaining of a "hurricane in [her] belly", so we gave her a dose and went back to clears for a bit. She only urinated once yesterday, but we got in 30 ounces of by bedtime, things were looking up. This morning she woke up with a glucose of 84, MUCH better! She's off Zofran and back to normal (well, her new level of normal) feeds. Yay! Oh, and I was pleasantly surprised to get an email last night from someone in her mito doc's office to check on how things went with the MRI. I'm sure she wasn't expecting anything to be amiss and got more of an answer than she was expecting, but it was nice for her to think of KayTar, especially when she wasn't even in the office! Note to self: If I can't be the kind of doctor who has gobs of time to communicate with all my patients personally, at least be the kind of doctor who has a super awesome staff. It makes a HUGE difference in how cared for a patient/family feels.

I'm still not sure what happened. She's been under anesthesia many times prior to this test and she has never reacted this way. Our pediatrician is going to request the list of medications and fluids that she was given, so we can figure it out. The only thing I know she was given was lactated ringer, which is contraindicated in mito/metabolic disease patients due to the risk of metabolic/lactic acidosis. She isn't diagnosed with anything specific, soooo I didn't speak up when I saw them hook her up...maybe I should have. Hindsight and all of that. It may not be related to that at all, though. Hopefully we can determine what the cause was an avoid this in the future. The other issue is that she has been in a bit of a decline right now anyway, so perhaps that fasting was just too much for her at this time. Not knowing what exactly happened makes me a wee bit nervous about the fasting for her gastric emptying scan on the 29th!

I'm also a little nervous about school starting this week (has summer flown by or what?!). Classes start for Josh and I on Monday (Calculus, agh!) and the kids start on Tuesday. First and fourth grades! My BubTar is in his last year of elementary. How does this happen?! I know KayTar will be in great hands at school; I met with the nurse, new librarian, her teacher and intern (a male intern, and KayTar's first question about him was "Is he HOT?" He is young and handsome, so I told her yes, but followed it with "No flirting with teachers!" and she said, "Well, I can flirt in my mind." Oh Lordy.) , on Wednesday to go over the plan...which is less of a plan and more of playing it by ear. She will be trying to wear her pump backpack all day now, because of her frequent feeds and I have no idea how it will go. I hope she transitions back to school well, but if we do hit any bumps that need to be ironed out, I know that she has a very capable team to help figure it all out.

Can you believe this tiny little thing has grown up into a big first grader?!
She was about 3.5 here.

She saw me looking through these old photos and said,
"Oh my gosh! That's my first jumper! And my first hearing aid! You took pictures?"
LOL. Of course I did, kiddo!

Thursday, August 18, 2011

One of those days!

It is 3:30 in the afternoon and I've been awake for 12 hours already. Yeah, it has been quite a day!

Yesterday, the hospital called me and told me that KayTar's MRI slot was 5:30am. With the hospital about an hour away, and KayTar having to be totally NPO at 4am, I had to be up by 3:30am. I *almost* overslept as my alarm didn't go off, but KayTar slept with me last night and started talking in her sleep at exactly the right time to get us out the door on time. When we arrived, there was no one in the surgery area except for another mom/daughter duo. Someone came in around 5:45 and told us that they open LATE on Thursdays, so nobody would be there for a while. Uhh? Why did we both get a 5:30 time slot if nobody was going to be there that early?! They took us back to the PACU pretty quickly, but it was between 9:30 and 10:00 before she ever went to imaging. She was pretty anxious and teared up a few times during the wait, she was scared they would use the mask to sedate her and even though everyone promised her they wouldn't, she couldn't quite get over it. The saddest one was when she said, "But why do I need this test? What is wrong with me?!" I think she is getting to the age where she wants a reason for these things and we can't always provide them, being in the dark as we are. Luckily there is wifi in the hospital and we were able to stream some Phineas and Ferb from Netflix via the iPad to keep her distracted for most of it.

A girl and her (MY) iPad.

The light fixture in her PACU room.
She said they chose butterflies just for her.

We got to be bracelet buddies.

Lidocaine patches are AMAZING!
Our normal hospital doesn't use them, but wow, did they work!
She was in the scanner for about an hour, during which I obtained coffee and a pastry and entertained myself by watching The Office on my iPad. 3 episodes later and I was called back to recovery! She was already awake when I got there, but she was feeling super loopy. At one point she started slapping herself in the face and when I asked her what she was doing, she said, "I'm feeling too woozy!" I convinced her that resting a little would be more effective than slapping herself to attention. She drank a little water and fell back to sleep for a while. The entire time she was in recovery, her monitors were alarming. It was almost continual bradycardia/low HR. She came around and said she felt like she was going to puke, so they ordered some IV zofran. We waited a while and they had me tube her 2 ounces of Pedialyte. Everything seemed fairly okay, so we were discharged around noon.

Shortly after getting home, she vomited up 150cc's of fluid. 60cc's of Pedialyte and the rest was the water she drank for me. UH OH. Puking with zofran on board after fasting for so many hours is bad news for our girl! Her glucose was okay then, 77, but I emailed the pediatrician to be safe. She told us to give her 15ml of Gatorade every 30 minutes. I did that successfully 3 times, but after the last time, she got gaggy and said she was going to throw up. She didn't, but we're walking a fine line here. We're going to wait an hour between fluids this time to try to avoid more vomiting. Her glucose is down to 71, which is still fine...but trending the wrong direction. Hopefully, she will turn a corner soon and we'll be able to give her the fluids she needs! After waking up at 3:30, a trip back to the hospital sounds like even less fun than usual!

PS: Things were touch and go for a while today, her glucose was dropping (61) and she started feeling queasy ever with the tiny amount of Gatorade we were giving. She hadn't peed since 6am or so. However, she ate an entire Popsicle--first time ever--and her glucose started responding (114) and she peed (high ketones). She had another dose of Zofran shortly after, and I ran in 2 ounces just a few minutes ago. I really hope she's on the other side of this now and we make it through the night and morning just fine. It looks like I'll be short on sleep again tonight, making sure she gets her fluids!

Sunday, August 14, 2011

My kind of camping trip!

This weekend the boys had a camping trip with BubTar's cub scout pack at a water park we vacationed at a couple of summers ago. The scouts were tent camping, but originally KayTar and I planned to go along and stay in a delightful air-conditioned cabin with electricity, water, and CABLE TV. She doesn't do well in heat and let's be honest, neither do I. I was born in Alaska and my biological thermostat was calibrated to a much cooler set of temperatures. Well, by the time the boys set the dates for their trip, all the cabins were booked up. I knew KayTar would be pretty disappointed to miss out on the water park if she had nothing else to look forward to, so we made plans for our own camping trip, Troop Beverly Hills a nice hotel downtown near a very fun park! ;) We got a great rate on Expedia and only spent one night there, but we packed in plenty of fun. Last night before bed, KayTar said, "We're such a good mom and daughter!" and rated the night "1000 out of 1 to 100."

KayTar and her crazy eyes on the elevator.

Her lunchlady impression. Free shower caps are fun.

Being goofy in the hall mirror.

KayTar's favorite part of any hotel room, the telephone!

KayTar, her rock Cece, and me.

The ballpark right out our window.

The super fun park, also outside our window.

KayTar's TV chair.

KayTar's aunt/my best friend R came out to visit and spend the evening with us. We had dinner in the room, then went to the park for a while.

After the park, we went to the indoor pool.
KayTar said, "I know indoor pools are very rare, because I've never seen one before!"

The 3 B's of bedtime...bear, blankey, and bolus feeds.

I love this one of her and her bear.

The fountains were off when we went to the park last night, so we went back the morning.

She looks pretty thrilled here.

I love her little lifted foot.


It was less than 24 hours, and 30 minutes out of every 2 hours between 8am-10pm was spent hooked up to her pump, but we sure had a good time together! It was a wonderful way to start wrapping up our summers. I can't believe we just have a week left, and part of that will be spent at the hospital for diagnostic testing. KayTar is already trying to plan another camping trip for December...we just have to survive this semester first! :)

Speaking of school, I recently found out that I made the Dean's List AND got into Scholars Academy (like honor society for STEM majors, comes with scholarship money and such) and my presentation on Retinoblastoma is going to be up on the GEOSET website any day now. I'm too chicken to actually watch it, but it'll look good on applications, right? ;)

Saturday, August 13, 2011

Making it Rain

(Click to enlarge the last two, wish I had space to make them a bit larger here!)