Saturday, August 29, 2009

Week One

It was a big week here at the 'Tar house!

On Monday, Josh and I started our fall term, both of us taking full course loads. BubTar started Cub Scouts Monday evening and it was also my first ten to midnight volunteer shift!

Tuesday, the kids started school at their new campus. Drop off and pick up were insane and I was feeling a little uneasy. The kids both came home in great moods and KayTar said it is, "Way more fun than last year!"

Wednesday, I had a bit of a meltdown over the whole new school thing. I was having difficulty communicating with KayTar's teacher and when you've got a kid with medical issues that is supremely important! On Wednesday night, KayTar started having respiratory problems. Of course.

By Thursday we had worked out the communication issues and the kids were both still reporting EXCELLENT days after school each day. We were doing much better!

On Friday morning, BubTar had a sobfest. He did not want to go to his new school and everything in the world was wrong. I felt terrible for the poor guy, but we still sent him to school. He walked in with such sad little slumped shoulders. Sigh. I made super fun after school plans for him, we were going to pick up his best friend for a sleepover and have after school snacks at Sonic. When I picked him up, he told me he had a wonderful day! He was all smiles, even before he figured out the surprises. I felt much better, too. KayTar was snotty and sickly after school, but we were happy she made it through the first week without an absence.

I went to Bunco last night and while I was there, Josh called me to tell me he had tested KayTar's glucose and it was 403! If you don't know about glucose, that is GO TO THE HOSPITAL high. I freaked, obviously, and asked him to check it again. He was very flustered (he isn't used to being the medical bad guy) and the meter errored on him. I rushed home to check it for myself, in the pouring rain, wondering if we were going to have to spend the night in the hospital. Once I got home and checked it, it was a nice normal 111. WHEW! I checked it again 20 minutes later to make sure and it was 98 that time. I don't know what that 403 was about, but it sure scared us! She was also running a fever by this point, 101.7 (first fever of the school year, 4 days in). Poor thing was (and is) so miserable. Last night was rough, she couldn't breathe well, she was vomiting, and was having some issues with apnea (as far as I can tell) which made her panic in the night. Eventually she settled in, though. Last night/this morning we had a brief period of Dehydration Roulette, as is the routine, but after a bolus of Pedialyte, we had a small wet diaper. That brings you up to date! The rest of the day will be spent lazing around, pushing fluids and meds, recopying my Chem and Bio notes. Aren't we exciting?

Wednesday, August 26, 2009

Wordless Wednesday: Exponential Growth




I didn't take a tree photo! I think it was raining that day. This is how big he was, though.


Tuesday, August 25, 2009

First Day of School

Such goobers.

Monday, August 24, 2009

Letter to the Teacher, 2009 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.

Sometimes I have neurological episodes that make me feel very sick, when that happens I need to go to the nurse to be given 0.3ml of Zofran gel on the inside of my wrist and I'll need you to call my mommy right away. Usually I need to lay down some place dark and quiet when I start to feel sick, too.

These things might help you know that I am starting to feel sick:

* I might say, "I feel spinny." or "Everything is shaking." or "My eyes feel sick."

* I suddenly look very tired. I might lay my head on the table or close my eyes. If I'm standing up, I might hold on to something for balance and close my eyes.

* I might stop responding to you. Sometimes I get very quiet and sometimes I make noises like I am in pain. It might seem like I am slipping in and out of a deep sleep, too.

* I won't want to stand up or walk. I probably won't move at all, because it makes me feel worse.

* Sometimes my eyes do funny things. You might see them wiggle, roll, or twitch. Sometimes they get stuck over to the side, and sometimes I can't open them at all.

* When I get sick, sometimes it hurts my tummy and I start to vomit.

* I might be in a lot of pain and the lights might really hurt my eyes.

It is important to remember that all of these things don't happen every time I get sick, but if you notice even one of these signs, please call my mom so she can come and get me. My doctors aren't really sure how to stop these episodes, so I have to go home and rest in my bed until it is over. Sometimes they can last a very long time, up to 11 hours.

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

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 to me to filter out background noises and I might have a harder time focusing, especially if the room is noisy.

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. My mom will also send a sippy cup of Pediasure with me, since this is my main source of nutrition, it will be important that I drink it. My mom gives me Pediasure in my g-button before and after school, but I like to drink some, too.

I am severely allergic to nuts, so please do not give me any snacks or food that haven't been pre-approved by my mom. Many packaged snacks are contaminated by traces of nuts even though they are not a main ingredient, so I have to eat my own foods usually. My mom will try to bring snacks and treats for me that are comparable to the kind my friends are eating, if you will let her know in advance. If my friends are eating foods that contain nuts or peanut butter, please make sure they do not touch my food and that they wash their hands before touching any common surfaces or toys. My allergy is serious and even trace amounts can make me react severely. If a food has nuts in it, please tell me and I know to stay away from it. 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 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.

I am a little slower than my friends and I get tired easily if we are walking long distances and 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. My teacher from last year said that a grown up needs to be my special helper during these times.

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.

Some days I am very light sensitive and can't bear to be out in the sunlight. 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 can read almost anything that follows the rules of phonics. I even read big words out of my mom's college textbooks! 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!

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,

PS: You can find last year's letter here. The letter has grown and so has she! She sounds like a hot mess on paper, doesn't she? She'll knock 'em dead tomorrow, though. She always does. As long as she doesn't have the episode that is lurking on the horizon, but let's not think too much about that. (also, KNOCK ON WOOD.)

Sunday, August 23, 2009

This kid...

is starting second grade at a new school in a couple of days, any advice for him?

Friday, August 21, 2009

This hat?

Or this one?

(my niece, the one who was in the jumping off the pier photo, which was my favorite of the entire weekend)

Oddly, there really isn't much of a story. She wasn't protecting her brain from the alien invaders or anything exciting. We didn't have any wrapping paper, so we wrapped my dad's gifts in tinfoil. After he opened one, KayTar wanted to turn it into a kerchief and my niece followed suit with a tinfoil Pippi Longstocking hat. The end.

Wednesday, August 19, 2009

Wednesday, August 12, 2009

Wordless Wednesday: He takes good care of her.

(photos not mine, they were taken by a CF photographer back in March)