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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!


  1. Cassie, I'm getting excited for 2009 for you guys too. This sounds SO cool. I really hope that China works out. I think you could do a fundraiser and raise money for the trip. I will do all the flyers and promotion! That is such an exciting prospect!

    And I'm cracking up with you and Wii. I can remember clearly playing Super Mario with you when we were kids. Maybe we need to get Wii here?? It sounds fun!

  2. Best of luck to you Cass in getting everything to work out. The Bahamas rock and very child friendly. Bonne chance from France!

  3. I just don't understand how your insurance company could deny your claim ... well I can, most of them are so tight they squeak, but seriously, this would be so beneficial for you.

    I'm just waiting to get a wii fit ... and maybe the big kid will let me use his wii once in a while :)

    Best of luck with the stem cell research/treatment/whatever you end up doing. I pray for a great outcome.

  4. Hi! I know Joanna through our blogs and I hope you are able to give the stem cells a try! I think there are amazing things that can be done with stem cells and maybe it would help? Good luck! I like Joanna's fundraising idea!!!

  5. We are Catholic too, and I think the church just opposes the embryotic stem cell research, not the cord blood kind. I got some information about Dr. Rader last week who does embryotic stem cell treatments in Mexico at the whopping price of $30,000 for the first visit, $12,500 for each additonal visit and recommends SMA kiddos see him every 3 months. That is not really in the card for us right now, and when I say cards I mean pocketbook. But we pray about it, and I think you're right, if the Pope had a child with SMA maybe he would reconsider the stem cell thing altogether.