Tuesday, August 28, 2012

First Day of School!

Today was the first day of school for the kiddos! (I started yesterday.) Everyone was SUPER excited about their big day. KayTar was FINALLY going to have her own desk at school and BubTar was starting MIDDLE SCHOOL. Big, important stuff. KayTar had a rough night last night (and by extension so did I!); her oxygen sats were wonky, I had to jump out of the shower and go check her persistently alarming pulse oximeter (only a loose power cord, thankfully), and in the 5 hours I was asleep I had to tend to her 7 times or so for various reasons (monitor alarm/excitement/need a drink/too hot/alarm/is it morning?/stuffy nose). BubTar said he had trouble sleeping, too, because of his nervous excitement. In spite of the rough night last night, everyone woke up ready to face the day (except me, until my coffee kicked in)! Aren't they just the CUTEST?!

Second and Fifth Graders!

BubTar went inside KayTar's school with me and it was so nice for him. He got to see all of his favorite faculty members and get hugs and well wishes for his first day of middle school. KayTar was thrilled to go in and find her DESK! She has been waiting for a desk since Pre-K. Her teacher was just a tiny bit nervous about how the day would go, so I reminded her that I didn't have classes today and she could call or email for anything, big or small...but luckily, the day was total smooth sailing! After dropping KayTar off, we went to BubTar's new school and he walked himself in all on his own! I can't believe how big he is getting. MIDDLE SCHOOL!

After school, KayTar told me her day was "epic" and her desk was her favorite part, and second to that was EVERYTHING about second grade. On the way to get BubTar, the nurse emailed me that KayTar's Orajel was in the clinic (she has a nasty mouth ulcer right now), so we took a u-turn and headed back to her school, then back to his (roughly 15 minutes from campus to campus). It was a little nerve-wracking, but now I know how much time I have to spare between pick-ups! We got there in plenty of time and had to sit in the ridiculously long line for a while still. He was all smiles when I picked him up! That is a rarity! He had a great day, they didn't switch classes, but his homeroom teacher and classmates were nice. He told me about an upcoming school dance (dance!) and the rock wall in the gym. He said most of his classmates are GT kids, too. On the way home, I rolled KayTar's fingers up in the car door (ack!), but she survived. We ALL survived the first day! Then I came home and did mountains of back to school paperwork. Oy. (one of the forms was for permission for s-e-x ed class! school dances and s-e-x ed! AGH!) Aside from a few little blips, the school year is off to a great start!

Thursday, August 23, 2012

Letter to the Teacher 2012

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’m almost done reading the Harry Potter series and I’ve read it all by myself! 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. My audiologist wants me to use an FM system in the classroom this year.

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. I use a wheelchair for long distances, so if we go on a field trip I will need it. Sometimes I fall down, because I'm not always steady on my feet, especially when I am distracted. I might 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. The muscles in my hands get fatigued and weaken easily, so I have special modifications in this area. 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, called mitochondrial disease. It may seem like I am being lazy at times, but my body just cannot always keep up. Even when I seem to be keeping up on the outside, sometimes my body is slowing down on the inside because it can’t keep up with all of the energy demands, so my mom and dad try to make sure I don’t burn too much energy on “outside” tasks so my body can use more energy for “inside” tasks and keep me feeling better. 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 and can help you make decisions about how best to care for me at school. 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 (above 90 degrees), it is best if I do not do recess or outdoor activities in PE and I will need a quiet indoor activity while my class is outside. Sometimes being out in the heat causes me to run a fever, even if I'm not sick. It also makes my stomach have a harder time working properly and can make me feel badly in other ways, too. Sometimes if I play too hard even when the temperature is nice, it might make my stomach feel sick.  It doesn’t always happen immediately, but my tummy gets very slow when it is too tired and it makes me feel bad.

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 have some other breathing problems and I wear oxygen at nighttime.

I don't like to eat much, so at breakfast or lunch 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. 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. If I say I feel too full or like I might throw up, send me to the nurse quickly and she can help me feel better by venting my tummy. I also need to keep my water with me at my desk so I can take small sips and get enough fluids during the day to help prevent headaches and other symptoms from getting worse.

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 [the nurse] immediately. I need to have 2 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.

Like the rest of my GI tract, my colon doesn't work quite right and I have to take medicines to help it out, because of this, sometimes I have small bathroom accidents. [the nurse] will have supplies to handle this if it is an issue. When I go see her before lunch, she will remind me to try to use the bathroom to help prevent accidents. Rarely, I may need to wear pull-ups when I am having more trouble with this, but I don’t want my friends to know! I am on new medications that are helping this problem more, so I hope we won’t have to worry about it much this year!


I know it sounds like I have a lot of things going on, but most school days go really well for me! I think EVERY day is the best day ever and I'm so excited to be in second grade this year. I love learning and I know I will have lots of fun in your class!

Your new student,

You can find the letters for previous years here: 2011, 2010, 2009, 2008

[As an aside, I find it REALLY strange to call the nurse "the nurse" because she is SOOO much more than that to us these days!]

Wednesday, August 22, 2012

PFTs and Echo

KayTar's testing did not go so swimmingly on Monday. The pulmonary lab uses a different mouthpiece than our pulmonologist's clinic and KayTar started gagging straight away when she put it in her mouth. I was able to talk her through it, though, and with some encouragement she was able to to make it through the first few tests. Unfortunately, after the first try on a test where she had to hyperventilate and then attempt to exhale against a closed valve, she puked. Puking means the end of testing in the pulmonary lab, so that was that. We did not finish the testing without bronchodilators and we didn't even start the testing that is repeated after bronchodilators are given. I doubt we got anymore information than a typical in-office PFT...and that it will likely be re-ordered for her and she will have to be NPO beforehand. It also means we finished testing WAY ahead of schedule and had a huge gap between 10am when we finished and 1pm when her echocardiogram/bubble study was scheduled.

We went over to check in early, in case they had an opening...but they never did. We went to get lunch in the cafeteria and oh my gosh, do I ever LOVE KayTar's wheelchair. It is AMAZING! She can't push herself a LOT, but she can push herself some and it makes such a difference! In the cafeteria, instead of trying to push an unruly stroller and carry food and a drink, I just said, "KayTar, follow me!" and she could! If there was a tight corner, I could use one hand to help and the chair would move with ease! Just little things like being able to hold the elevator doors for her while she rolls in or opening a clinic door for her are SO much simpler. She loves the autonomy, too. I'm SO glad we opted for a wheelchair and not a medical stroller, she is very proud of it and it makes everything a lot easier for both of us. If you have a kid with limited mobility or even limited energy/endurance and are looking for a seating solution, I highly recommend the wheelchair route if they have any ability to self-maneuver. It makes more of a difference than I ever would have imagined and I'm SO glad that Heather gave me that advice when we were making our decisions. After lunch, we just hung out in the waiting area, hoping for a turn!

It was FINALLY our turn and KayTar was delighted to discover the orders had been changed so she did not need to have an IV. She said, "Yes! I wished it away!" Initially the orders were for a bubble study, but the cardiologist called the pulmonologist to see if she would change it to a normal echo because that should be sufficient to diagnose the problems she is looking for (which is what my wise friend Amber had told me! Mito moms always know the right answers!). The echo itself was no big deal, we just relaxed for about a half an hour while the tech looked at her little heart. I know nothing about cardiology, so I had no idea what I was looking at. I can tell you she has a heart and it was beating, but beyond that I'm clueless. I tried to get the tech to tell me if things looked mostly normal, but she was tight-lipped. Darn! I'm not sure when we will get the results, hopefully this week, though. I expect it to be normal. None of her docs have ever been concerned about heart problems and I think the pulmonologist ordered this as more of a rule OUT than a rule IN sort of test. It will be nice to get the results, though.

The end of testing days is always our favorite part, or as we like to call it New Monkey Time! :) This time around, I had asked KayTar if I could surprise her with a special sock monkey I found online and she initially said yes, but after such a long day of testing, she wanted an immediate reward and decided to go to the gift shop. We walked in and there was the SAME monkey I had picked out for her and it was her first choice, too! I love it so much! It was meant to be, I guess! On the way home, she said, "I just love today!" Not many people feel so fondly about a day that starts with puking and is spent at the hospital, but that is just how KayTar sees the world...the glass is ALWAYS overflowing, never half-full or half-empty!

Thursday, August 16, 2012


It has been a big week at the 'Tar household. Last Wednesday, KayTar received her awesome new wheelchair and her pulse oximeter. Yesterday, she received her oxygen concentrator and started on nighttime O2. A lot of changes and new routines to get the hang of. It might be a little sad and overwhelming if we hadn't been working towards these things for so long now (it was LAST summer when we started noticing KayTar's weird breathing...or lack thereof, and she has been too big for her stroller for AGES), instead I feel a lot of relief and maybe just a touch of new equipment anxiety. I'm relieved that insurance has readily agreed to cover what she needs and thankful we have time to adjust to the new stuff before the school year starts. I'm glad we have some new supports in place to help her feel better and have more restful sleep and more daytime energy, hopefully.

The wheelchair has been a very simple transition. KayTar loves it, so I love it. It takes more time to put it together and break it down to get it in and out of the car (which isn't exactly fun in this August heat), but the ease of use for both me and KayTar makes it WELL worth it. It takes about 4 steps to break it down, remove the seat cushion, remove the wheels (just have to press a button), flip up the anti-tips and the foot rests, and pull up on the handle in the middle of the seat. To put it together, you just reverse the process. Simple.

The pulse oximeter has been pretty simple, too. KayTar likes the probe on the big toe of her right foot at night. We only get 4 probes a month, so we've learned that after the first couple of days, we need to wrap it in a bandaid to keep it secure. I bought her some cute girly bandaids so her glowing toe can look cool. She doesn't have any complaints about using it. It has alarmed on several occasions, but she has resumed breathing on her own each time. It alarmed earlier this week on vacation and when I stood up to go check it, I discovered my leg was TOTALLY asleep and I collapsed. It was a spectacular fall. For the most part, she is satting a little lower than the pulmonologist wants her to...but not super low. We are going to do some spot checking at school (especially during PE) to see how she is managing there, too.

Oxygen is going to be the trickiest adjustment. She was very compliant during reading time and when I was cuddling with her at bedtime, but every time I went to check her, the cannula was out. It was a combination of it getting knocked out when she moved and her moving it in her sleep. I found it on her forehead and chin several times and once on her blankey. It is going to take some trial and error to figure out a good way to keep it in place! She said she didn't feel any better this morning, but I suspect you actually need to keep the cannula in to get the benefits of oxygen therapy! ;) We have a Respironics EverFlo compressor and an Ultrafill system to fill her portable tank if needed. It is pretty quiet and didn't seem to put off a lot of heat, which is a relief! BubTar did say that it sounded like Darth Vader was using the toilet (we are keeping it in the bathroom near their rooms)!

Monday is her echocardiogram, bubble test, and full pulmonary function testing at the hospital...then we may know a bit more about this respiratory stuff. In other news, her tummy has been giving us daily trouble recently (vomiting, feeling too full, stopping feeds early, venting out LOADS of air)...I don't know if we overdid it on vacation and things will normalize or if it is just something we will continue to deal with at this time of year. It is much less stressful this year, though, since we now have experience with dealing with it!


Oxygen update: I cut the ends off of a bandaid and used them to secure the cannula near her nose and threaded the line up her pajama shirt and it worked! I don't know if it will be a long term fix, but she wore her oxygen all night last night! Of course we had to color coordinate with her pulse ox bandaid! :)

Wednesday, August 15, 2012

Friday, August 10, 2012

"Why are you in that wheelchair?"

KayTar's answer, "Because I can't walk a lot or I get too tired...and anyway, it is awesome! Want to see me to a wheelie?"

She amazes me with her outlook on life and she is so very proud of her wheelchair! We took it to the hospital yesterday for her audiology appointment and she was in heaven. SO happy to be out of that baby stroller so people won't think she is a baby! And for the record, she cannot wheelie yet, but she can lean back on the anti-tips for about 1 second and she thinks it is the coolest move EVER! :)

Wednesday, August 08, 2012

Tuesday, August 07, 2012

Big Pulmonology Appointment

Hey there! Long time no blog, right? We've been pretty busy having lots of summer fun and there hasn't been a whole lot to report (except that I turned 29 since I blogged last), so I haven't taken the time to write for a while...but our pulmonology appointment yesterday changed that!

1. She is ordering oxygen for KayTar. Based on KayTar's sleep study and prolonged central apneas, she is ordering O2 for nighttime use. It won't ventilate her when she stops breathing, but it will keep her sats higher at baseline and hopefully prevent big desats. Oxygen is generally more tolerated than BiPAP or VPAP, so it is an easier fix. We will also (HOPEFULLY) have her on a pulse oximeter (waiting for insurance to approve it), so we will know if she drops below 90 and won't be flying blind like we are now. The central apneas, strangely enough, match the same type of breathing (or NOT breathing) we see KayTar do during the day. Breathe-HOOOOOOOOOLD-Breathe a few times-HOOOOOOOOOLD. It is a long hold, too, like 30+ seconds. The pulmonologist said she tried holding her breath with KayTar on the video, but couldn't go as long as she did. She said she couldn't tell from the video if the nighttime apneas are like the daytime apneas in that she holds her breath after an inspiration, but it might be the same there, too. That may also mean that the little miss might be needing daytime O2 as well. In the office today, she sat at 90-91 for a while before coming up to 99. When I spot check her with our little pulse oximeter, I often see her low like that for periods of time. The sleep study showed her hanging out at low 90s when awake and asleep. While it isn't grossly abnormal, it is much lower than "ideal" and for a kid like KayTar who is already running on a system with some deficiencies, it may be having a bigger impact on her that it would a "normal" kid. So once we have the pulse oximeter and can get some solid daytime data, if we are seeing desats and lower-than-ideal sats much of the time, she wants her on daytime O2, as well. The catch here is getting insurance approval. Dr. J said it would be much easier if KayTar had an official mito dx, but hopefully we can get it covered anyway.

2. She is ordering an echocardiogram and bubble test, as well as full cardiopulmonary function testing. She doesn't really know why KayTar's sats are lower than they should be, so she is going to do some investigating before chalking it up to another symptom of KayTar-itis. KayTar will be having an echo to check her heart function and a bubble test to make sure there isn't any shunting or defects that might be contributing to her lower sats. KayTar said, "I get to blow bubbles?!" Unfortunately, no. ;) The cardiopulmonary function testing is evidently pretty involved, much more so than the little PFTs we do in the office. Dr. J said it would be a pretty tiring day for her.

3. Her PFT was abnormal. KayTar's previous PFTs looked good, but this one had a bit of an anomaly on it. One of her levels was considerably lower than it should have been and the pulmonologist said it is the one part that it is impossible to "fake" or affect by not giving enough effort during the test. So KayTar had to have a breathing treatment and repeat the PFT. The second one looked much better, but the Xopenex made her dizzy and have a headache. :/ The take home from this is that KayTar can't be off her Advair anymore...she's been off for a month or so because her asthma has been well-controlled without it and she hasn't been sick (knock on wood) without being in school, so we were letting her have a break since it seemed unneeded (we've done this in the summer before). Whoops! Guess that isn't the case and she needs to be on it year-round now.

4. Treating for Mycoplasma. KayTar tested positive for mycoplasma in her last lab panel. Mycoplasma is a bacteria that commonly causes walking pneumonia (but can do lots of other "neat" stuff, too). The labs indicated a previous/inactive infection, but Dr. J doesn't fully trust that to be the case and so she is treating KayTar with 14 days of clarithromycin to rule it out with certainty. However, she has a possible allergy to drugs in that class...she broke out in a full body rash during her one and only course of azithromycin as a toddler. I have never been sure it was a true allergy, I lean towards thinking she was treated with abx for a viral infection and the rash was due to the virus, not the antibiotics...but we've steered clear until now to be safe. The only other antibiotics to treat mycoplasma are quinolones and they are much harder on kids, so we are going to try clarithromycin first and see how it goes.

5. KayTar is funny. We had trouble finding parking yesterday and KayTar finally said, "I wish we could find ONE parking spot!" and we instantly found one. Then she quickly shouted, "And I wish I had a new car!" Alas, the second wish did not work! Also, a resident met with us before we saw Dr. J. At the end of reviewing the case, she asked KayTar, "Do you have any complaints? Anything I can help you with?" And KayTar said, "Well, I just wish it would stop raining so much so I could swim more!!" The resident laughed and said, "I'm sorry, I just don't have that kind of power!"

So that's that for now...this afternoon we brave the dentist (AGH!) and Thursday we see audiology!