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Friday, May 29, 2009

She'll be an Olympics grade swimmer by her 6th birthday

Enjoy, family and friends. (It's about time I pimp Jenna out via a video on the blog, eh?)

Happy Friday, too!

Tuesday, May 26, 2009

Aquatic Head Float! part 2

I spent literally 24 hours waiting for the original Lauren video to upload. So I took a new, shorter video in the pool today. Enjoy!

Monday, May 25, 2009

Aquatic Head Float! part 1

I'm afraid Kyle gives it only half of one thumb up.... Enjoy!

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

Happy Memorial Day, 2009

What a great week it's been. Jenna, much to my surprise, has survived a week with no preschool (the school offers a summer session, but this was a one week break in between the regular school schedule and summer session, ack). More importantly, I have survived a week without Jenna being in preschool. Whew!

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're all on our way to better health, finally.

Chris is still a little sniffle-y. Lauren is fine, despite a naptime vomit yesterday. Kyle got away with half a day of a runny nose. Jenna never got sick. And I still have a little congestion, but nothing anywhere near as bad as it got on Sunday/Monday/Tuesday. Though I'm afraid I may genuinely be addicted to the electric suction machine, for myself. So much more efficient--and environmentally friendly!--than Kleenex.

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. 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.

I picked up a book from the library the other day that is so damned funny that I have to talk about it here. She had me laughing out loud by page 12. It's old--from 2001--but still hilarious. Bitter is the New Black by Jen Lancaster. Her style reminds me a little of a way-trendy Laurie Notaro. I think it's supposed to be an autobiography of sorts, but reads more like a humor essay. Just my kind of thing. You have to love any author who puts footnotes to her story which are just as funny as the anecdotal story it is in reference to. A great way to spend my time until the next Janet Evanovich book and the next Harry Potter movie are released this summer...

Monday, May 18, 2009

All's unwell at the Byrd House

Just a quick update to spread the word that we're all sick here. An awful summer cold is being passed around among us. So far Jenna has been spared, but it started with Lauren and the moved to the rest of us. The fact that we're sick is significant, because we try to stay as germ-free as possible around the twins--they have sensitive respiratory systems and there is little room for a "harmless" cold around here. But surprisingly, this cold is staying in our upper respiratory track (that's better than in their lungs) and it's hit Chris and me far harder than the kids. It's been barely a blip on Kyle's radar screen. And Lauren had it pretty bad for about a day, and then she was better. But Chris and I have been in the pits for a solid 48 hours now with little sign of improvement. We're waiting for fevers, so that we can declare that we have Swine Flu, but there's no sign of fever, so that's good.

When Chris got sick a couple of months ago, he was excommunicated from the house until he was better, so that he didn't get the rest of us sick. But when I get sick, I guess I get to stay home. : ) Well, since the twins were the ones to pass the germs onto us anyway, it wasn't imperative that we leave them alone and take our germs with us, I guess.

That said, let it be known that I heart the twins' electric suction machine. I would marry it, if it were socially acceptable. I may never buy Kleenex again. Just me and a BBG suction tip hooked up to this bad boy. This is the life!

Saturday, May 16, 2009

Successful first day of carnitine/valproic acid

I've been having some anxiety about how cooperative the twins might be when it came to taking their new meds, prescribed by Dr. Swoboda. Fortunately, it's not been bad at all.

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:[1].pdf

Thursday, May 14, 2009

Tuesday, May 12, 2009

Me & My Kid

I ask the questions, Jenna (age 5) gives the answers.

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

Back home from Salt Lake City and Dr. Swoboda

What a trip. The babies were dreams on the flights. Our GPS actually got us to where we needed to go, and we were on time for everything! The babies slept at night, mostly, though they didn’t nap hardly at all (oh joy). The weather was gorgeous—chilly chilly chilly! I cursed myself for not bringing long-sleeves to wear—I guess being the desert rat that I am, I forgot that even though it was 102 degrees the day we left Phoenix that it might be colder at our destination. There was snow on the tops of all the mountains, and everything else was green. It looked like a different country altogether. We half-expected Julie Andrews to come prancing over the hill in a long dress followed by a gaggle of singing children. And Salt Lake City itself is perfectly charming. It reminded me of Alexandria, Virginia—the streets lined with red brick homes and large trees, plenty of pedestrian walkways, many local shops and restaurants. The place was adorable. Not to mention that it’s the home of Rodizio Grill, a place we highly recommend to all non-vegetarians who like to eat a lot of food.

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:

And our friends the Ervin family were a huge help. They rounded up two strap-on high chairs and two Bumbo seats for us to use during our stay. Since the babies don’t sit up on their own, it would have been very challenging to feed them or leave them to play independently without the highchairs and Bumbos. It was so, so nice of them to round up those seats for us (they had to ask around to everyone they knew in order to come up with it all), plus they brought us a home-cooked meal. It was almost dinnertime on our first day there and we were dreading the idea of taking travel-weary babies out in public to eat, but we didn’t have to, thanks to Julie and Michelle. We had a delicious three course meal in the convenience of our little condo.

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 and her staff put the babies through the ringer—in a good way. They were sedated and had EMG’s done on their hands, to measure nerve/muscle reaction ability (or something like that). They had extensive labs performed in order to examine their dietary deficiencies. And we’ll find out about how many SMN backup copies they each have when the results come back in a couple of weeks. They had their weight and all kinds of measurements taken, to sort of act like a baseline against which we will measure future progress and physical development. They met with a physical therapist, who had some suggestions on areas to emphasize with our own PT back home. And Chris and I both gave our own blood samples to the cause, so that it could be fully analyzed and the results stored in some big database where they house information like that on SMA families.

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!

Friday, May 1, 2009

Happy May Day

Jenna enjoyed her first fishing trip with Daddy and Grandpa just yesterday. I was thrilled that they got to go--it was warm but not super hot, Chris doesn't start his new job until next week, and it was a non-school day for Jenna. It was the perfect opportunity to "fish"--which really meant zooming around the lake for 4 hours and sticking a pole in the water for about 10 minutes and watch the fish not bite. But that's okay. Jenna still declared it her Greatest Day Ever, so it was a win-win for both the fish and the girl.

To celebrate May Day, here's a completely unrelated video of a very messy Lauren. To her father's credit, I had no idea she even got a fraction this messy because he cleaned her up so thoroughly before passing her off to me--and she needed a bath anyway, so he didn't even have to! Hooray for hygenic fathering! At the beginning of this video, she's calling out, "Oh, Toodles!", which is the rescue tool box on Mickey Mouse Clubhouse--her 3rd most favorite TV show, behind The Wiggles and Caillou.