Settling In

Well, I last left you on the edge of your seats (or so I like to imagine) waiting for the arrival of a FOURTH oxygen regulator and with KayTar's sats misbehaving at school. Since then, we regulator has arrived (though not on Thursday when I spent my whole day waiting for it...nope, I had to spend most of the following Friday waiting for it, too!) and it has been working, for the most part. We did have an issue with it losing its seal on the first day she used it at school, but KayTar got out the T-handle and shut the valve ON HER OWN! I didn't even teach her how, she just learned by watching. She called it "the axe method" because she thinks the T-handle looks like a mini-axe. What a big kid she is turning into! Since then we have been taking it off the tank after every use and putting it back on when she needs it and haven't had anymore issues (KNOCK ON WOOD!). We shouldn't have to take it off, except to refill the tank, but whatever...if it is working, I'm happy.

As far as her sats...meh. She is below the pulmonologist's cut off more often than we'd like and nearly every day in PE. The plan this week has been to put her on oxygen for 30 minutes to an hour before PE regardless of sats (as long as it doesn't put her at 100%) to give her body a break and perhaps increase its ability to meet her needs during the 30 minutes of PE. In addition, if her sats are low at her lunchtime check, we just put her on oxygen after lunch and keep her on until PE. If her sats are low in PE, then she gets oxygen at that point and keeps it on through music. So far, it does not seem to be making her sats any better DURING PE, but my hope is that giving her a body a break before/after that exertion will minimize any ill effects from it. She enjoys PE and I do think it benefits her to stretch her abilities (they encourage her to participate, but always allow her to self-modify)...this week she walked a MILE (or so she told me, 7 stamps=1 mile and she earned 7 stamps). KayTar walked a MILE! I probably would not have thought it possible and I definitely would not have allowed/asked her to push it like that in real life, but she did it (and besides her oxygen issues, she handled it well)...which is why I think there is a benefit to her participating in PE. I don't want to pull her out because of the low hanging sats, but putting her on oxygen during that madness (there are a TON of kids in PE) isn't feasible either. So for now, we're going to keep plugging along like this, tweak some things, and see how it goes. The pulmonologist might have a different plan for us when we see her in November, but we'll cross that bridge when we come to it.

It is a relief to finally have reliable equipment for her (though, I'm totally scared to try the regulator on the other 2 tanks we have because I'm afraid it will break!) and it feels good to be settling into a routine and have some rough form of a plan in place. It isn't perfect and we'll have to tweak it many times, I'm sure, but the worst part of new medical needs/new equipment is all of the unknowns. It feels like the answer to every question becomes "I don't know!" and I hate living like that. Once we get to a place where we have some idea of what direction to head and what our day to day might look like, I feel much better about it. Now we know that on most healthy days, KayTar will likely need oxygen at least part of the day, and on most sick days, KayTar will probably need oxygen most, if not all, of the day. We may not know ALL of the answers, but I can definitely settle for knowing one or two!

Oxygen! Part 2

I finally talked to the pulmonologist's nurse on Thursday. She said that Dr. J wants KayTar on oxygen when her sats hit 95% or below. I asked her the same question in about four different ways, hoping to get a different answer, but NOPE! 95% is when she needs to go on oxygen, no matter how I phrased it. The truth is that I was pretty deflated by this news. We've been checking her sats both at home and at school this week and she is RARELY over 95%...in fact, even with my low-ball order of at/below 92%, she still has been on oxygen twice at school this week! When I heard the official orders, I felt kind of like this...sideways and all. LOL!

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I understand the orders, I do. If KayTar's body is already struggling to make ends meet and running sub-optimally, then allowing her to sat low and experience chronic, even slight hypoxemia, is not ideal...especially when we have the ability to fix it for her. I get it. I just feel a little fussy about it! Initially I was worried about how KayTar would feel about it because when she first started overnight oxygen, she said, "I'm glad I don't have to wear this at school, people would think I'm weird!" but when I talked to her about the fact that her needing to wear oxygen in class might be more than hypothetical, she said, "That'd be okay...and I could build my muscles from carrying the bag!" I've obviously got a lot to learn from that kid, because I was not feeling so swell about it!

We didn't want to rock the boat at school too much, but the (best) nurse (in the universe) offered to check her sats a little more frequently on Friday, in case the two little snapshots (before lunch/during PE) of her oxygen levels were not entirely telling...but still, at 2/3 checks she was below the cut-off and she ended up on oxygen in the afternoon. I don't know what it means or what the best way to proceed is, honestly. Maybe her sats are running low due to the infection she had LAST week or maybe they are always like this. Maybe we should just keep her on oxygen all day at school when she is in the classroom and PE (and let her go off of it for lunch/specials), since she is low so often and it isn't feasible to monitor her frequently. Maybe she just needs a boost a couple of times a day. Maybe, maybe, maybe! At this point, I don't know what our plan for Monday will be (oh, and to complicate this further, the regulators on the small tank seem to be malfunctioning!)...but I've at least accepted that we do need a plan! So far today, her sats have been good at every check...so I am still holding out a little hope that this is a temporary set-back due to the respiratory infection she is just getting over and maybe she will just need additional supports when recovering...but if that isn't the case, we'll deal with it.

The tough part is that when we "lose" something with her (or add supports/machinery/whatever, depending on how you look at it) it is usually permanent...so unfortunately, I have FEELINGS about such things which distract me from the important things in life, like the fact that she is here with us and she is HAPPY and she is "healthy" and we have the ability to support her in these ways here at home or at school and we have precious people in our lives who help us put her needs first and care for her when she is out in the world...so many blessings!! So instead, I'm choosing to feel like THIS (okay, maybe not quite THAT happy, but you get the idea)!

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First Fever!

The germs have landed! Man, those little buggers are quick. Friday evening we drove out to my parents' country house to spend a couple of nights. Everyone had a good time (and I took a LOT of photos that I really love), but on the last day, KayTar started coughing...then she felt puny...then she wanted her oxygen in the daytime...then her throat started hurting. Uh-oh! I was hoping that it was allergy-related so I gave her a dose of Benadryl, as she helped with the hay early in the day, but it didn't quite seem like allergies.

We headed home not too long after and had to stop on the drive to give her a dose of ibuprofen for her throat and hook up/turn on her oxygen (per her request). The requests for ibuprofen continued through the day and night when her previous dose wore off, so it was clear we were dealing with an illness and not allergies...and then the fever started yesterday. Last night it was up to 103.5 with ibuprofen...poor baby was so hot and her heart rate was on the high side, too. Her usual overnight oxygen dose is 1/4 of a liter and I had her on a liter and her sats were still lower than they usually are on 1/4 and dipped much more frequently. Nothing serious, but definitely showed her little body is working harder than usual!

She is missing her first day of school for the year today. She is a little congested, has a junky cough, sore throat, and fever. Pretty sure it is just our first viral visitor of the year...hopefully it won't hang around too long and she can get back to the business of being a second grader!

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!

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.

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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.

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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.

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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.

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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.

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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!

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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.

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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.

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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.

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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.

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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!

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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,
KayTar

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!]

Grapes.

KayTar wrote this poem at school recently and I had to share it. The assignment was to write a poem about any fruit. KayTar does not eat fruits (in fact, part of OT for her is just TOUCHING fruits without vomiting), so she chose grapes because they are purple and there were no pink choices. I love this poem. (She also signed her name "KayTar S." for Sock Monkey, since she is married to her giant sock monkey, Socko Sock Monkey.)

 "I hate grapes. Big little bally yucky. Juicy. From seeds. Purple green never eaten by me. Bleh! Disaster! Oooh. Healthy. Gassy. Hard. Bumby. Little brown sour nothing."

KayTar's Timeline

KayTar had to make a timeline of her life for a Social Studies project. It is kind of nice timing, what with her 7th birthday just under a week away! These were the important events/photos that she chose for her timeline and the sentences she wrote about them.

I was born!

I turned 1 years old.

I went to DisneyLand!

I have my hearing aid!

I got glasses.

I went to NYC for a photo shoot!

I started school.

I had surgery.

I lost my first tooth.

I had a surprise party!

I have my car!

I graduated!

I was in Oliver!

This whole blog in 13 pictures. She makes it look so easy! ;)

Ketchup.

1. I bought a new-to-me car on the 14th! The minivan was super nice, but it was guzzling an immense amount of gas with my commute into downtown for classes. If our calculations were correct, we were spending more on gas than the car payment! So, we traded it in the 2007 Dodge Grand Caravan for a 2008 Scion xD and I LOVE it! It is so fun to drive and the difference in fuel efficiency is insane.

2. KayTar is magic. Seriously! We went to lunch the other day and there was a display with a PacMan ghost in it. She says, "Aww, I wish I could have that." as we were explaining that it was part of the display, so she couldn't...the hostess said, "Sure! You can have it!" Then, as we were leaving, there were flower pens at the register and she said, "I wish I had one of those!" The next thing I know, the cashier pulled out two brand news ones and let KayTar have her pick!

3. Inspired by The Muppets, BubTar has learned to whistle!

4. I got some kind of nasty virus last week and was in bed from Friday night through Sunday morning basically. It was TERRIBLE! KayTar was so sweet, though, and when she checked on me, she told me, "You look GOOD! You're sooo beautiful!" Such a darling.

5. My semester is off to a good start. All of my classes seem interesting/not too taxing, and I think I'm going to love Sociology!

6. Words cannot express how much I love this photo of BubTar. He is the handsomest!

7. KayTar's stomach is a little better, but not 100% yet, or even back to 90% or whatever it was that she was functioning at prior to this little bump in the road. However, since we increased her meds, the pains seem less intense and more fleeting...but still there, which I don't like. She puked Friday night, too, no real reason. C'est la vie!

Seven is a lucky number, yes? Let's stop here.

I'll be back tomorrow (or thereabouts) with some theater rehearsal updates! :)

Happy New Year!

So, it is 2012. Sounds weird, right? We rang in the new year with good friends and game night. KayTar wanted to stay up until midnight, but gave up at 9:33 instead. I was going to do a big sum up of 2011 for the first post of the year, but I just didn't feel like it...so I'm not. 2011 was a mixed bag for us. KayTar was healthier (as far as infections go) than she has been in previous years, but she had a rough medical year on all other fronts. Headaches, GI problems, respiratory weirdness, ect. I spent a lot of the year worrying about her. It definitely wasn't all bad, though, there was plenty of love and laughter and time spent with friends and family, so I think it was a good year overall, because that is the most important stuff. Josh and I celebrated 10 years of marriage, went to Vegas, had a beach vacation, KayTar and I had a little weekend getaway to a downtown hotel...among all the other more run of the mill fun things we did. There were the less fun things, too; the gas leak and being without gas for 16 days, Calculus, my credit card being cloned, medical tests that weren't very fun. We started seeing KayTar's new specialist in 2011 and our hope is that in 2012, someone will finally be able to successfully diagnose her! I don't do resolutions, but that is my #1 wish for this year...and it is probably about as likely as most people sticking to their resolutions. ;)

There will be a couple of changes for me in 2012. I changed majors at the end of the semester, from Biological and Physical Sciences to Psychology. BPS was dragging on forEVER because of scheduling problems. Every semester, I've tried to fit in some of the science classes with labs, and every semester the classes have been scheduled at times I can't take them. It wasn't a huge deal in previous semesters, because I had enough basic requirements left to fill my schedule, but I'm done with that now and still couldn't make the labs work. They seem to only schedule them during the kids' dismissal time or at the time Josh gets home from work...meaning I'd have to leave before he was home since campus is an hour away. It just isn't workable. Nontraditional undergrads with two kids and one income can't afford medically savvy nannies to cover gaps like these. Sooo, I looked at my transcripts and reevaluated things and discovered that I'd actually be closer to graduation if I switched, so I did it. Also, the classes are at normal times and many are offered online, too, which is an added bonus.

The other big thing is that I'm almost certain that I'm switching tracks from premed to pre-PA. It has been of those long torturous decision-making processes, so I'm going to spare you all of that agonizing hemming and hawing...I've pretty much had my fill of it already. The bottom line is that this year, we saw possible disease progression in KayTar and that has made me reevaluate my priorities. I love medicine, that hasn't changed...but if there is ANY chance our time with KayTar could be limited in any way, I cannot/will not sacrifice 7 years of time with her. PA programs are shorter in duration and I could still work in a field I love. My end goal is primary peds anyway. I don't think I will ever look back and wish I had spent less time with the kids and more time in school/training (even if KayTar does go on to have a happy, mostly healthy, full life, which is our fervent hope)...but I can definitely imagine wishing the opposite. I don't want to set myself up for big regrets. While I never think we should live our lives in fear of what might be, I also think God sometimes uses circumstances in our lives to nudge us in the right direction...and this year has been one of those nudges. So this next semester, I'm not taking any prereqs for either program, I'm just going to sit on this decision (even though I'm pretty sure about it) for the semester and maybe through the summer too, and then move forward with a certain direction in the fall...so I'm not straddling the fence and wasting time by completing two sets of prereqs. For now, I'm just going to keep working towards finishing undergrad and keep taking things one day at a time with KayTar.

KayTar celebrating at 9:30. I love how she says, "It's midnight!"

You're It!

Earlier in the school year, KayTar's nurse and her PE teacher started playing a little game of tag. The first time I heard about it, Ms. B had snuck into the Nurse C's office and stuck a bunch of balloons all over the clinic that said, "You're it!" Of course, KayTar saw the balloons and wanted to know what was going on, so the nurse filled her in...and then they started plotting to get Ms. B back. They hid a balloon in a bag that KayTar took to PE and she got Ms. B to look in it. She sure wasn't expecting to get "gotten" by one of the kids!

Since then I guess the game has continued, but I hadn't heard much about it. But this weekend, KayTar was reading through her old emails and came across one from Nurse C about their previous plotting against Ms. B, so on Monday she went to school ready to get back into the fray. She came up with her own scheme in which Nurse C would put a bandage on a pretend ouchie and write "IT!" on it, then KayTar would get Ms. B to look at it during PE. That is exactly what she did! She went to PE with her fake wound and said, "Ms. B, I can't play in PE today because I've got a bad bo-bo...do you want to see?" And then BAM! KayTar got her. Hahaha! Sneaky little lady.

Then today in PE, KayTar really fell and got hurt and Ms. B knew that if she sent KayTar to the nurse, she would think it was a rouse, so instead she iced KayTar's knee in the gym and then they doctored up a different fake wound (complete with and "IT!" note and fake blood!) and went to the nurse together. They told me that this plotting really cheered KayTar up from her actual ouchie. So as they got close to the clinic, KayTar started moaning and wailing about her injury (for dramatic effect), then she sat down in the clinic, pulled up her pants leg to show the nurse and said, "Gotcha!!!" and laughed herself silly! Then the nurse tended to her real injury before sending her on her way.

She is having such fun being in on this little game! She loves the scheming and playing her little parts. I enjoy hearing about the stories, both in emails from the nurse and from KayTar's retelling on the way home from school. Beyond that, I am so thankful that she is in a school where so many of the staff have really gotten to know and embrace KayTar's silly, joyful, happy-go-lucky personality. It can be tough and worrisome to send a kid with complex medical issues off to school everyday, but the truth is that when I send KayTar to school I know that she is in wonderful hands. Her nurse is truly an angel and she doesn't only make sure KayTar's medical needs are taken care of, she makes sure she is happy and well-loved every day, too. I could not ask for more!

Here she is "helping" me take photos of BubTar.

Honor Roll Kids!

The first grading period for the kids ended a couple of weeks ago and both of my little smarties made Honor Roll! BubTar has always been on Honor Roll, so that was not a surprise, but since KayTar has never made real numerical grades before this year, it was her first time!

BubTar was especially excited to see her first report card and had it out of her folder and was reading it aloud before we even left the school parking lot. He announced, "KayTar made the Honor Roll!" and I said, "Well, what about Math?" because of all of her subjects, she has the hardest time with that one because unlike reading and other verbal skills, she doesn't just KNOW the answer innately...it is tough to transition from automatically knowing-it-all to having to do actual figuring in your brain! But BubTar said, "She made a 90 in Math...almost a B!" He said it with just a hint of condescension in his voice, too. So it was QUITE funny to pull out his report card at home and discover they had identical grades in Math, 90, an almost B as BubTar called it. In fact, they had identical grades across the board (in the subject KayTar gets grades in), except for Spelling, where she beat him by 2 points. They were both pretty entertained by their matching grades! Which, for the record, were as follows:

Language Arts: 98
Reading: 99
Writing: 96
Math: 90
Social Studies: 98 for B/S for K
Science: 96 for B/S for K
Spelling: 97 for B/99 for K
Conduct: A

KayTar's report card said, "KayTar is such a smart and talented girl. She is a joy to have in class. Keep up the good work, KayTar!"

BubTar's said, "BubTar is a pleasure to have in my class this year. Honor Roll!"

KayTar missed 6 out of 36 days this 9 weeks, and BubTar missed 0.

And the best part was the KayTar FINALLY got a certificate during Pod Awards. Every 9 weeks for the past two years, she has cried on Awards Day, because prior to numerical grades the only certificate the kids could earn was Perfect Attendance...and that is an unattainable goal for our sweet girl. When she got her award, she said, “Oh my gosh!  I’ve never received a certificate before!” 


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Speaking of school, KayTar had a homework assignment in which she had draw and label different kinds of nouns, ie. person, place, thing. This is the picture she drew for her things (glasses, blankey, vanity, and pump):

My favorite part is her, pushing her little IV/pump pole.

Notes from the Wobble Board.

KayTar is having a pretty good week. Monday and Wednesday she got through the entire school day without having to visit the nurse (except for her daily visit for meds and pump hook-up), and Tuesday there were some small bumps, but she made it through. She's flirting with a little respiratory infection, but doing well in spite of it.

In PT, KayTar had to stand on this thing called a wobble board, it was a wooden platform on top of a rounded rubber pillow of air that forced her to work VERY hard to maintain her balance. She would get up there and her legs would shake and her knees would buckle and she would grab onto her therapist for dear life. Lately, it seems like I'VE been on the wobble board. This semester has been stressful for me. I was chosen to be part of a STEM majors honor society at the end of last semester, which initially I thought was great. I was under the misconception that it was simply a scholarship program for impressive students (because that is all they tell you when applying!), but it turned out to be so much more than that. I had to sign up for an additional course, which was just one credit hour, and from there I found out that there were multiple mandatory events outside of class time. The society itself had something like 10 mandatory extracurricular events (the list just kept growing!) and the one hour course had several in addition to that. The class also required a lot of reading, online participation, and group work...it was my most demanding course and made Calculus look like a cakewalk. For a NORMAL undergraduate student, I can see the benefit of all of these things, but for me, especially THIS semester with the way things are with KayTar, it was impossible. A few weeks ago, I attempted to withdraw from the program, but my advisor said she was willing to compromise with me on certain things, so I tried to stick it out for the semester...but things just kept getting more complicated with KayTar and I just COULD NOT have that hanging over my head. So I finally officially withdrew last week and I feel so much better. I hate "quitting", but the truth is that if I had known about all of the hidden requirements when I applied, I NEVER would have applied. I am so careful about my schedule, because I know that there is a limit to what I can balance and I was even more careful this semester because this summer was rough for KayTar and we are seeing a lot of doctors and going through testing right now. This program tipped the scales in a dramatic way and withdrawing from it was the right call for me...and for us as a family. So, whew!

I'm not sure what I'm going to do about next semester. It has been a long time since Josh and I have really been hit by the uncertainty of raising a kiddo who has an undiagnosed, unpredictable disease, but this semester has really driven that point home once again. This summer was difficult, this semester has been difficult, and Josh and I are both concerned that next semester will be more of the same for her. We are thankful that her motility medication is helping and heartened by the good week she is having, but it seems like abdominal pain, headaches, dizziness, and other things are constantly lurking. We both hope this is just a flare up and we hope that she is on the upside of it now, but we can't say that with any certainty. Josh, who is extremely laid-back, brought up the possibility of home school last week, and he is NOT pro-home school. We're definitely not there yet, but the fact that he brought it up at all shows how uncertain things have been this year...how much our day to day with KayTar has shifted. As far as my school goes, if I had to decide right now, I'd say that it would probably be best for me to take next semester off or go back to evening classes for a while. When I decided to go to school full-time during the day, things were simpler with KayTar and it was an easier balance to maintain, but now everything is topsy-turvy again. School is important to me, but KayTar is my priority...she doesn't always need me, but I want to be there for her when she does. Luckily, I don't have to make any decisions right now...I just have to keep my head down and survive THIS semester (which in spite of all the extra stress, is going pretty well), because as my favorite Bible verse says, "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." And isn't that the truth!

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.

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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.

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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.

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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.

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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. 

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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!

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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.

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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.

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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.

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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.

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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.

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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,

KayTar

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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.

First day of school...

FOR THEM!

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!"...so 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!

Goobers.

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!

First day of school...

FOR ME!

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 section...so 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!

(Mostly) Wordless Wednesday: Medal Man

Not only is my BubTar ridiculously handsome, as well as gifted and talented, but he also made 100% on both his math and reading state standardized exams and received a medal for it!

Field Day!

Today was KayTar's first field day! She's been in school for 3 years now, but she has only participated at the indoor Special Olympics athletic events. Josh and I were both nervous about it. KayTar fatigues easily when she is active AND/OR when she is in the heat. Since Field Day is active AND the heat here is actual 90's and 100's with the heat index, we were doubly worried. But I don't like to keep her from fun opportunities if I don't have to...so we decided to give it a shot, especially since I was able to be with her all day.

We packed her chilly pad, umbrella, a cold water spritzer bottle, and plenty of drinking water...and it went well! The part in the morning was totally fine, she just sat out of the sack race because it is beyond her physical abilities, and the afternoon was mostly okay, though she had to come in a bit earlier than her class because she was feeling too hot (she picked a chapter book from the library to read while we waited), and we opted out of going back outside for popsicles later. She didn't feel like she missed anything, so I'm glad we let her try and allowed her to set her own limits. On to the photos!

  

These next two are part of a series of KayTar and her best buddy from Kindergarten cracking up during one of the relays. They were passing a sponge down the line and after KayTar passed it to M, she would wipe her hands on his shirt and get it soaking wet. They were both being SO silly. I just LOVE these!

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