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Wednesday, December 31, 2008

Happy New Year, Wii, and Babies Update

Yahooo! Goodbye, 2008! Hello 2009! Actually, I feel like 2008 was on it's own a happy, healthy, satisfying year. I don't want to hurt 2008's feelings. We were blessed with a job, health insurance, and loving and generous family and friends the whole year. 2008 is Good People. But 2009? 2009 is going to be even better. 2009 brings us Barack Obama, who I actually didn't vote for (gasp!) but am happy to have come January 20. I just feel this electricity in the air when his name is mentioned--the world is excited, and so am I. And 2009 will be the year I lose 20 pounds and keep it off. I may have to borrow someone's baby to breastfeed in order to make it happen, but I swear, I am losing this muffin top for good. And 2009 may be the year the babies get their passports--they can't get stem cell treatments for SMA here in the US, so we're exploring other avenues to get it for them. Sound edgy and exciting and scary? It is. Please pray for us as we research the options out there and try to make a decision.

Okay, so who out there got a Wii for Christmas?? We got a Wii with our tax rebate over the summer. If anyone else has a Wii, let's exchange our console codes so that we can be Wii friends! It takes both of us to enter each others' codes, though, so enter my code, and then message me with yours. My code is 2670 3638 5180 8412. And my code for Mario Kart is 5198 5990 3664. Except that we don't play Mario Kart that often. What can we do after we become Wii friends? Well, primarily, we can send each other our Mii's and then watch us cheer for each other when we use the Wii Fit. That's what.

The babies are doing GREAT! As I intimated above, we're considering the possibility of stem cell injections for them. There has been anecdotal evidence that a course of 6 stem cell injections (over a 30 day period) can signficantly improve the strength and possibly survival rate of an SMA patient. This is just anecdotal--no clinical evidence is available at this point, since apparently nobody except the U.S. thinks it's important to record and track any patient given stem cell therapy. But the success stories out there are adding up, and we would do anything to increase the quality and quantity of life for Kyle & Lauren. So, sign us up, right? Right. Except for the small issue of cost. It will cost $26,000 USD per twin, plus travel expenses. Plus the cost of getting to China. Plus 30+ days of missed work for Chris. All of which we would find a way to scrape and save to make happen if there was any guarantee that stem cell therapy works. And there is no guarantee. So it's something we're continuing to explore and pray about. Which is ironic, since our Catholic God is categorically against anything related to stem cells, per the Vatican. So we just pray quietly, and hope that the Pope doesn't hear us. Something tells me that if the Pope had twins with SMA, he might think a little longer about stem cell therapy. You know, after he thinks a good long while about how he came to father twins, being a Catholic priest and all. ;) Anyway, so overall, the babies continue to do very well. They've stayed healthy during this flu season--surely thanks to the fact that they rarely leave the house. I am so, so afraid of them catching even a tiny cold that Jenna is lucky I even let her attend preschool anymore. As it is, I keep Purell in the minivan and make her sanitize her hands everytime she gets in. Our insurance company rejected our claim to obtain a Cough Assist. This is the machine which uses positive and negative air pressure to force a productive cough. It is a standard piece of equipment for an SMA patient, or any patient with serious respiratory or muscle weakness issues. This is the machine that could mean the difference between pneumonia and two weeks in the hospital, or a continued happy, healthy existence. It costs around $8,000. So we're appealing our insurance company's decision, with the help of our pulmonologist, and are keeping our fingers crossed. Also, there is a neurologist with the University of Utah in SLC who specializes in SMA and is willing to fit the babies in to be seen by her and her staff. This is huge. We are so psyched. She can help us with everything from nutrition recommendations to physical therapy advice to potential drugs to help increase their strength. A visit with her is a 3-day affair. And includes a lovely visit to SLC--who wouldn't want to go there?? We want to get there as quickly as we can while we can travel--an SMA patient who becomes critically ill cannot travel. And Dr. Swoboda does not make house calls, right, so it's important that we travel up to see her while we still can.

So, that's it! That's where we are as 2008 waves it's final goodbye. I am excited for a new year, and new Wii friends, and maybe a month-long trip to China (?) for some stem cells, and I hope this new year brings you all health and happiness as well. Cheers!

Saturday, December 20, 2008

Sleep Studies--aka "Mama Gets No Sleep" Studies

What a week of sleep studies it's been. Each baby has now gone through one study. Kyle was first, and it was like a dream come true for him, I'm sure. From the moment I first heard his hysteric shrieking as the tech attached electrodes and sensors and belt monitors onto him, I knew this was going to be nothing but fun. I was right! Kyle and I spent some "quality time" together for a few hours, taking turns crying, until about midnight that night, when finally he "fell asleep for the night" and only woke up crying three times between midnight and 6am. Score! And the tubes in his nose, well he only yanked those out about a half dozen times.

Lauren, on the other hand, handled it like a rock star. And no, I don't mean that we made the tech provide her with a dedicated masseur, Fiji bottled water and bowls of green-only M&M's. I mean that Lauren sat happily while the tech hooked her up, she fell asleep within minutes after I turned the lights out, and barely woke up at all. She never messed with her wires or her nasal tubes. She should be the poster child for pediatric sleep studies.

And me? Well, I was up with Kyle only about 2 dozen times during his study. And with Lauren, I was so afraid she'd hear me roll over or crack my feet (I have to rotate my feet and crack all knuckles and joints that can be popped in my feet before going to sleep) and then wake up and let her wrath loose on me that I couldn't sleep all night. I wished I had some old Mad Men TV episodes on my iPod so that at least I could have done something other than stare at the walls all night.

So hooray. It's done. They may each need one more sleep study, to titrate their bi-pap machines for sleeping at night. But now I know what I can bring to distract them during the setup process (Baby Einstein DVD) and also to schedule our checkin for later in the evening so that they are truly sleepy by the time we need them to sleep.

And their health is still good. I had a scratchy, phlegmy throat last week, but they didn't show any signs of a cold or anything else, so keeping them inside and away from crowds and stores must be working.

Happy Last Weekend Before Christmas Shopping, everyone!