Friday, May 29, 2009
Happy Friday, too!
Tuesday, May 26, 2009
Monday, May 25, 2009
Lauren gives it two thumbs up--but I can't seem to upload the video of her. I've been trying for the last twelve hours to no avail. I will try to begin a fresh post for Lauren's video. Stay tuned.
Sunday, May 24, 2009
The twins continue taking their new meds without much complaint. This is SUCH a relief. It makes everything easier. Even better, it seems like the meds are helping. Their appetites are better, and I swear they are demonstrating better arm and hand strength everyday. And sitting up for longer periods of time. It is awesome! Our physical therapist can't be here for two more weeks, which means it will have been three weeks since she's seen them and I have to wonder if she won't notice an improvement in their strength. I don't know if that's enough time for this med to start working, but it can't just be our imaginations that they have more strength and endurance. And I love that I don't have to spend ALL my energy (mental and otherwise) to get them to consume calories. Don't get me wrong, it's not like they're suddenly eating like 16 year old varsity football players, but they do eat all of whatever it is they ask for, and are more interested in food in general. Which is a wonderful thing for peanuts sitting in the 3rd percentile.
Today, my old college pal Stacie hung out for a while with us and ate dinner. She had to rush off to a Fleetwood Mac concert (aw, man!), but before she did, Kyle said her name plenty of times. !! The boy who "can't" even say hi to his Grandma said, "Stacie" over and over. He's so sweet, if a stubborn boy. It was a great visit with Stacie, who is a good sport to come over and play with my children while I hang out on Facebook..... LOL
Jenna is having a slumber party tonight at Grandma and Grandpa's house. Kim and Ryan are hanging out in SoCal this weekend. It's a good time for all of the family. A hearty "thank you!" to all of our soldiers--here, there, everywhere--and those who have passed. Happy Memorial Day to my late Grandpa, a Korean War veteran and Purple Heart recipient. Thank you and miss you always, Grandpa.
Wednesday, May 20, 2009
We watched American Idol tonight. Whatever. Americans are stupid. I only watched half of the season, but Idol winner Kris Allen was more like a #3. It should have been between Danny Gokey and Adam Lambert, and Adam should have won. Far better singer, far better entertainer than Kris. Okay, I'm over it. (But probably not really.)
The twins have a check-up scheduled with the neurologist tomorrow. Should be fun times, what with the petri dish of a waiting room and the fact that the babies know what's going on the second I lay them on the scale to be weighed by the nurse. Somebody remind me to pack a bunch of Dum Dum's for the appointment, to help smooth the way towards a quiet exam room when the good doctor finally gets to us.
Check out this tablet PC that our therapist brought over for the babies to try out. It's so cool! And she has a bunch of toddler computer programs to load into it. A is for Apple, B is for Banana, that kind of thing. The twins flipped out over this. I love that they were so engaged with it--enraptured, really. I hate that it costs $2,200. http://www.tabletkiosk.com/tkstore/pc/viewPrd.asp?idcategory=17&idproduct=257 It's a touchscreen, so the kids are tricked into using their arms and hands/fingers because they want to play with it. They have no idea they're giving themselves a workout, not to mention expanding their brain power. I need these kids to be computer savvy by the time they go to preschool. They'll need some smarts to find a cure for SMA one day, so we might as well start now.
Monday, May 18, 2009
Saturday, May 16, 2009
The carnitine is a clear liquid, and only 1/2 teaspoon at a time surely is manageable. And while it's no white chocolate raspberry cheesecake, it certainly tastes better than most medicines, I'd say. They put up a little protest, but both managed to consume nearly 100% of the dose.
The valproic acid comes in little capsule. Since the babies are too young to swallow it whole, we just open the capsule and sprinkle the contents into a spoonful of food. Today, I put it in their first spoonful of oatmeal. And they ate it (suckers!). Just like that, they've had their first doses of carnitine/VPA. I only hope they're as cooperative tomorrow...
It may help strengthen them, or may do nothing. Time will tell. They'll be re-evaluated in 12 months to determine whether we should continue it.
More info: http://www.fsma.org/UploadedFiles/Research/Publications/CurrentPublications/SMA-compasssumm08.2.pdf
Tuesday, May 12, 2009
1. What is something mom always says to you?
Go wash your hands.
2. What makes mom happy?
When I hug and kiss her.
3. What makes mom sad?
When I don’t finish my dinner.
4. How does your mom make you laugh?
When she tickles my side.
5. What was your mom like as a child?
She had the chicken pox.
6. How old is your mom?
31 (wow, she’s close on that one)
7. How tall is your mom?
How about if we measure you?
8. What is her favorite thing to do?
9. What does your mom do when you're not around?
Work on her computer.
10. If your mom becomes famous, what will it be for?
Cooking in the Crock Pot (awesome!)
11. What is your mom really good at?
Writing. (I think she means handwriting)
12. What is your mom not very good at?
Playing Wii games.
13. What does your mom do for her job?
Work on her computer.
14. What is your mom's favorite food?
Steak. (Sure, I guess)
15. What makes you proud of your mom?
When she does something for me
16. If your mom were a cartoon character, who would she be?
17. What do you and your mom do together?
We swim together.
18. How are you and your mom the same?
We have the same hair, and we have the same color of our hair.
19. How are you and your mom different?
I am small so I wear small clothes, and my mom is big and so she wears big clothes.
20. How do you know your mom loves you?
When she kisses me.
21. Where is your mom's favorite place to go?
Chili’s (sure, why not)
Sunday, May 10, 2009
Our place of residence during our trip was a gorgeous cabin-slash-condo in Park City. It could not have been more convenient—just 30 minutes from the airport and the hospital, a parking space right in front of the door, three levels with plenty of bedrooms for us, gorgeous kitchen, luxurious bedrooms, gorgeous views, and a golf course in the backyard. Many thanks to Julie Hudson and her family for making it available to us. It was ideal for our needs. And I can’t help but post the link to the property, should anyone else be looking for a rental in Park City: http://www.vrbo.com/187246
Between the freeway and the condo, in Park City, sits the Utah Olympic Park. That name sounds a little dull to me, because wow, what a place. It was extremely cool to see the vast expanse of mountain and the ski jumps and the bobsled track and so much other stuff that I couldn’t check it all out (hello, cold and windy up on that mountain). It was cool to imagine all the people and TV crews and athletes swarming that deserted mountainside. We spent a lot of time discussing where the athletes stayed, where the “Olympic village” was during those 2002 Olympics. Park City is a little small to house that many people. Does anyone else know where they all stayed? Anyway, I’ve never been anywhere related to the Olympics, and I was impressed. Chris was, too. The babies, alas, were less than thrilled with the scene—though that may have been more related to them being tired, hungry, and cold up there.
Dr. Swoboda agreed to start the twins on the drug combo vaproic acid and carnitine. One side effect of those drugs is that it can cause increase in appetite and weight gain—which actually is a move in the right direction for the twins. They charted below the 5th percentile on the growth charts, so we look forward to these drugs improving their size, as well as help their overall strength and abilities. Our fingers are crossed.
Basically, the benefit of meeting with the doctor and her staff was for them to evaluate the twins current status and health, and to provide us with sort of a manual for their care, based on the staff’s extensive experience with SMA patients. We took oodles of notes, but look forward to seeing the information that Dr. Swoboda’s office sends to our doctors here, too. The information we obtained regarding their daily and long-term care is really like gold to us. But it’s overwhelming. It’s been two days and we’re still trying to process everything.
So now we’re back home. It’s over a hundred degrees F today. Boy, we miss Utah in a big way! I’m glad we went, but I’m also glad it’s over. It was so much work, I need a vacation now! Thankfully, it’s Mother’s Day, so maybe I’ll get an hour or two to myself to finish rereading Harry Potter and the Half Blood Prince. Happy Mother’s Day to my mom, and all my mom friends!