Monday, June 25, 2007

It's just about 7 o'clock on Monday evening. Ian just left for baseball practice and Mom is getting my medicine ready. Nurse Nicole will be here soon, so Mom is going to run some errands and try to clean up the house a little bit while she's taking care of me and before Ian gets home. She's always rushing around and trying to get a hundred things done. She wears me out.

Dad left at 3:30 this morning to catch his 6 a.m. flight to Philadelphia. He gave me kisses goodbye, but I didn't wake up. (I got to talk to him, though, right before the plane took off.) I don't like Mondays because Dad flies away on Mondays. I cried a lot today, but Grandma did a great job of cheering me up. Mom and her friend Sarah came to see me at lunch today. I sat in the kitchen with them while they ate. I had several crying times during lunch, but Grandma and Mom came to the rescue. They just don't realize how sad I am when Dad is gone. I know he'll be home again Thursday night, but it makes me very sad when he's so far away. (He calls me a lot, though, so I get to hear his voice. And Ian runs into to give me his magic Big Brother kisses when he knows I'm sad, so that makes me happy, too!)

I didn't do anything very exciting this weekend. Dad and Ian had a big adventure on Friday, and when they came home Saturday afternoon, Dad held me in the rocking chair for 3-1/2 hours while Mom ironed. I supervised (and watched Finding Nemo at the same time). That's my job when she's ironing - to supervise. She said she was hoping that the Ironing Fairy would show up to do all that work because she was so far behind from when I was in the hospital. Grandma did some of it last week, but then the pile grew again. How does it do that? Dirty clothes and ironing - the piles always grow and grow and grow. I don't have to do any of those chores because I'm a princess. I always get to supervise.

Yesterday was a Trach Change day. Mom and Dad (and I) were a little nervous about doing it at home again. The last one I had was in the hospital, and it went very well, so there was no reason to believe there would be a problem. However, with all my mysterious ways, their blood pressure seemed to be up a bit. Nurse Nicole was the suction girl. Dad held my head back and rubbed my cheeks to relax me. Mom had the big job of pulling out the old tube and putting the new one in. It was smooth! I fell asleep right after it was done. Good job, Mom! No breathing problems from me!

I've only had one gasping episode since I came home from the hospital on June 15. I don't know if this is some kind of vacation from my problems (like What About Bob) or if everyone is just trying so hard to stop me from crying the second I start, that I can't go into one of the episodes. Whatever it is, I'm okay with it. I don't like to gasp for breath, and I don't like to scare people. I just want to keep on breathing!

I've only gotten to go outside for a few minutes the last few days because it has been so darn hot and muggy. I can't stand it when it's like that. I get so sweaty in my wheelchair, and if I have my leg braces on, they really stick to my legs. It's not very comfortable. I like it when it's about 75 degrees outside - that's the perfect temperature to swing in my swing. I can feel the wind in my golden hair, and I feel like I'm flying! If you haven't been on a swing in a while, maybe you should find a playground and go swing - or Mom says there's a swing at Six Flags that goes round and round and round. That might be fun, too! Mom usually takes Ian to Six Flags once each summer and then they tell me about their day, but this year they're going to Chicago instead. Uncle Scotty Wotty Poo Poo Head (yes, that's his nick name!) is there for a while working on a job, so Mom and Ian are going to fly there on July 5 and come home July 7. I'm going to miss them while they're gone, BUT here's the good news: I'll have my dad all to myself while they're away! Since the Fourth of July is on a Wednesday this year, Dad's company said he doesn't have to fly to the East Coast that week - he has to work from home. So guess what that means! I'll see Dad EVERY DAY next week. We'll get to snuggle a lot. I like to sit on Dad's lap in the big rocking chair and lean back, right up against his shoulder. It's the perfect place!

What are YOU going to do on the Fourth of July this year? Farmington is having a big fireworks display this year. I'm usually asleep by 8 or 8:30, so I always miss the fireworks. I got to see some last year, though, at our friends' the Roses' house. Since Cousin Addison, Aunt Jenny and Uncle Ryan will be in town this year for the Fourth, I think they will all be over here at my house celebrating my Mom's birthday. She's kind of dreading it this year: the big 4-0. She keeps saying things like, "Ugh! I'm old." She's not old! (But Dad is. Ha ha ha. I love you, Dad!) Ian keeps wanting to get older while Mom and Dad want to stop getting older. Grandma's birthday was the day I came home from the hospital, and she said she was skipping all her birthdays now. What's the fun in that? Grown-ups are so weird.

Nurse Nicole is here now, so I have to go do my bedtime stuff. I have to get my teeth brush, my trach site cleaned, my feeding tube button cleaned, my body washed off, and my pajamas on. Then I get my hair brushed and I have my dinner. (Actually, my dinner is going in the whole time I'm doing these other things. Yes, I'm the queen of multi-tasking!) Then I get really sleepy and I drift off into dreamland.

I hope you all have wonderful dreams tonight! God bless!