Sunday, December 28, 2008

Don't sweat the small stuff

Emma has had three Christmases so far. The first one she spent in the hospital, newly released from the Pediatric Intensive Care Unit, wearing a Santa hat while getting chemo in her hospital baby bed. Her second Christmas she got to be home, with her leukemia in remission (we thought), and she had a great time. Now, a year later, she spent her third Christmas in a hospital room. It wasn't the Christmas we had planned, but nobody's complaining. She is more than 100 days post-transplant, and her new bone marrow is chugging right along, with all her test results showing only the donor cells and no leukemia lurking in her spinal fluid. She can go out in public as long as she wears a surgical mask, which she doesn't mind doing. The only problem she's been having are intermittent mysterious fevers, which require intravenous antibiotics through her chest port.

Her oncologist suspected the culprit might be bacteria hiding in her chest port, which was implanted more than a year ago, but removing it would mean every time she needed an IV they'd have to stick her, and nobody wants to stick a 2-1/2-year-old if they don't have to. However, a sudden fever spike (and pneumonia) just before Christmas settled the question, and on Christmas Eve the port was removed. Sure enough, the surgeon told Emma's mom that they found "a lump of gunk" growing on the end of the port (she made them bring it out so she could see for herself). Emma bounced right back and came home the day after Christmas with a PICC line in her arm, so she can still get IV meds without having to be stuck. She is still surprised when she pulls up her shirt, saying "My lines are gone!" because she had those IV lines coming out of her chest for as long as she could remember. Now she just has one line in her arm, and she helps her mom and dad put her medicine in three times a day for 30 minutes, carrying the pump around by herself when she wants to go somewhere while she's getting her medicine.

Christmas Day might have been spent in the hospital, but it wasn't a bad day. The nurses spoil her rotten, and she's known some of them her whole life. She spent the morning opening presents with Mom & Dad like any other kid, and she got to show everything to her new baby brother. She didn't care that the nurses were there too. The next day she came home and opened more presents, and the only thing she was unhappy about was the fact that she wasn't allowed to turn somersaults while her medicine pump was hooked up. She's eating well and filling out, and while her hair is still pretty short, there's plenty of it now!

Nope, no complaints.


Sunday, December 07, 2008

Emma & Cameron meet Santa

Emma's met Santa before, and in her head she knows that underneath that beard is PawPaw Tim, but it's still just weird when you're 2! She was happy to talk to Santa and tell him she would like to have a new baby doll, but she absolutely refused to sit on his lap. When Grandma Chris asked her where Pawpaw Tim was, Emma pointed to Santa and whispered, "He's right there." She knew that was her grandpa...but at the same time it wasn't.

Emma's newbabybrotherorsister has arrived!

Cameron Lukas Hill arrived safe and sound on November 11th. Emma was thrilled, as you can see. She still thinks he's pretty cool, now a month later. She has figured out that his name is Cameron, not newbabybrotherorsister, as she kept calling him at first. After all, that's what everyone had been calling him for weeks! She also calls him "my nay-nay," which is what she calls her baby dolls.

Emma is now more than 100 days post-transplant, so she can go anywhere she wants, as long as she wears her surgical mask, which she is pretty cooperative about.

Here's the video of Emma meeting Cameron at the hospital:


Tuesday, October 21, 2008

Dancing with Pawpaw

Emma loves to dance in the bubbles from her bubble machine! As you can see, her hair has grown back darker, at least for now. The meds make her pretty hairy, so her newest nickname is "were-baby." She thinks it's funny, of course.

Monday, October 20, 2008

Emma + 90

Emma is 90 days post transplant! She's had some trouble with recurring fevers, but lots of tests show that she's just picked up a bacteria or two, easily taken care of with antibiotics. She is eating and drinking better, which has been the main concern. Apparently the radiation and drugs involved in the transplant procedure burn out your taste buds for while, so she's working back up to normal eating. "Nay-nay," as she calls her upcoming sibling, is due in just a couple of weeks, so keep Anna and Kyle in your prayers. They are going to be exhausted, physically and mentally. Emma, however, just keeps on and on, like the Energizer Bunny. I'll get a photo posted in the next couple of hours.

Tuesday, July 22, 2008

The day we've both dreaded and hoped for

Emma had her stem cell transplant today. It will be well into fall before she gets to go outside again, but we have every reason to believe that in November she'll be eating turkey and pumpkin pie with the family again, including a new baby brother or sister. Check out her dancing skills in the latest video, taken Friday in her specially fitted-out hospital room. You'd never guess she'd already had four days of radiation and two days of chemo! Her mom told me they had to get her a "cage bed" because she was jumping on her bed so high they were afraid she'd tumble over the side! Too bad that's not in the video!

I need to update her website, too. In the meantime, you can check it out if you like cute kid pics!

Sunday, June 29, 2008

Yes, I'm a dork...

...but I can't help myself. I never shined a shoe in my life until last year, and now every other weekend is boot-shining time. After 45 years, you can learn something new! I got my boots so lovely and shiny I just had to take a picture.

Sunday, June 08, 2008

Geek Syndrome

For whovian and her nephew:

I mentioned in an online forum that my son (known here and in many places as GeekBoy) has Asperger's syndrome, a form of autism. I was asked for more information and ended up writing what was intended to be a short overview of our experience. It got a little long, but I thought it was pretty good, and my cousin, a psychiatric social worker, told me it was terrific. In case anyone outside the Random Chat forum is interested, I thought I'd post it here. Thank you to whovian, aka Trish, because if you hadn't asked, I would never have thought to write it down!

GeekBoy was diagnosed with ADHD and Generalized Anxiety Disorder when he was in third grade (about 8 years old). For the next couple years, Asperger's syndrome was mentioned from time to time, but I honestly didn't think he had that, based on what I knew (at the time) of the characteristics. There are a lot of areas that overlap between Asperger's, anxiety, and ADHD. By the time he was in 7th grade (about 12 years old) I realized he probably did have it, partly because there was better, clearer information available describing the characteristics and symptoms, and partly (I think) because we'd dealt with a lot of his true ADHD behaviors with modifications, training, and medication, and it was easier to see the Asperger stuff. He'd been seeing a psychiatrist for four years for medication, and I talked to the doc about the whole Asperger's thing. He told me that an official diagnosis is based on observation, which can be done through specialized testing, but the testing isn't always conclusive, is rarely covered by insurance, and is very expensive. He said based on what he knew and had observed of GeekBoy's problems, he agreed that he most likely had Asperger's. He wrote a letter for us for the school, where he already had been "identified" with "special needs" (Gifted and ADHD).

The school psychologist and all that bunch told me that for school, the diagnosis isn't that important, since services are based on needs, and the needs don't change because of any particular label, but it's easier to tell someone he has Asperger's than to try to explain what he's like and what he needs, at least as a start.

He has regular classes, plus a resource hour with a teacher who sort of works as his school case worker and his coach. His school is wonderful! It's a huge high school (1600 students), located in an older part of town, so the student population is very diverse--Hispanic, black, white, poor (including kids from the homeless shelter), wealthy, part-time students from the deaf school, etc. There is no "average" student there, so the teachers don't aren't freaked out by a kid who needs some special consideration. When he was in junior high, at a school of almost 100% upper-middle-class suburban kids, there were teachers who just didn't know how to handle the fact that when GeekBoy gets stressed, he needs to pace. Even when this was written into his educational program, it just freaked them out--it was a disruption! Now at his high school, once the teachers know this is his thing, and he won't take off or run away, they let him go out in the hall and pace if he needs to, no big deal.

School is hard for him, though, because he can't keep track of his homework. Sometimes he forgets to do it, sometimes he does it but forgets to turn it in. He tends to wander off someplace in his own head as soon as he gets bored in class, so he misses things. His last IQ test result was 145, but it's a struggle for him to pass his classes. He gets decent to excellent grades on tests, but he doesn't turn in homework and he has trouble getting projects done on time. He can tell you all about the radar systems used by England and Germany during World War II because he saw a program about that on the Discovery Channel a year ago, but he can't remember what he did in English class today.

He is hypervigilant about safety (bike helmets, seatbelts, power tools, ladders, the stove, etc.) to the point of being a pain in the neck, but not like Mr. Monk. If a subject interests him, he will learn everything he possibly can about it (just ask him anything about Stargate, I dare you!), but if he's not interested in something and/or thinks there's no point to it, he can barely tolerate dealing with it (this includes homework assignments). He doesn't like to be touched unexpectedly, but he is a hugger as long as he knows you're coming. He is hopeless at social cues, and we have to remind him to make eye contact when he's talking to people. He can't make small talk to save his life, and in a conversation he either talks your ear off or mumbles monosyllables. He is very sensitive to sounds. He wears earplugs in movie theaters because he can't stand the volume. Textures bother him, especially in food. He doesn't like chunks in anything (except chocolate chips). He absolutely won't eat shrimp, because of the texture (he calls it "crumfy"). He doesn't like to wear clothes at all, but when required (we require), he prefers loose, comfortable clothes with no tags in the shirts. He wears his socks inside out because the seam on the toes makes him crazy (thank heaven for Sean Connery in Finding Forrester).

He will watch an anthill for hours. He's the same way with water. Show him a fountain and he'll go to sleep standing up. Give him a hose and he could play for hours, watching the water, but never remember to actually water the garden. When he wants to think, he walks in circles around the dining room table.

It's obviously a big deal in some ways, but we've tried to keep it in perspective and not have him be self-conscious about it. He has a pretty good sense of humor about it, actually. Once in a while I'll forget myself and say, "Why are you pacing?" He'll say, "Hello? Autistic here!"

GeekBoy will always be "weird" and will always have difficulties with social situations, but he'll be able to function independently in the real world, hold a job, and quite possibly have a family, assuming he finds a patient, organized woman! He has a great sense of humor, and is wicked with puns, so he may not be a social butterfly, but he'll have friends. Knowing he'll be okay as an adult helps us keep the trials and frustrations in perspective.

Saturday, January 05, 2008

Just when you find your comfort zone...

I've gotten used to starting my day in a locker room, putting on my uniform. I've gotten used to remembering to shake up the pepper spray container every Monday so the contents don't settle. I've gotten used to answering the phone and having people ask questions like "Is getting a ticket for driving by a school bus that has its stop sign out considered a moving violation?" and having people tell me how inconvenient is for them to be arrested right now. It doesn't even feel weird anymore when I walk into the squad room in my uniform to change my radio battery and the sergeant is in the middle of roll call with patrol officers half my age.

Getting was too good to last. Monday morning I go back to school for a week to learn more about Kansas law. At the Police Academy. With actual commissioned police officers...the ones they actually let carry guns...who are half my age. Oh joy. Sarge says I have to wear my uniform, too, so I'll stick out like a sore thumb. It will be good for me, right? Build my confidence? I'll keep telling myself that.

The other "fun" thing is, I know most of the instructors. The problem is they know me from my volunteer days. My days as a volunteer drinker, that is. Yes, the last time most of the instructors saw me, I was legally drunk and trying to walk a straight line while the trainee officers practiced field sobriety testing.

Maybe they won't recognize me.