Wednesday, March 27, 2013

Marfan Disney World 2013

We made our yearly trek to Marfan Disney World recently. If you've never heard of the place, you are lucky, but you can learn all about it in this post . As always, we planned the visit for a day off school so my kids wouldn't miss a school day. As my friends plan trips to the zoo, bowling alleys, and other fun kids attractions on their days off school, ours are often filled with specialists appointments. Rarely is there a vacation from school when one of the kids doesn't have some type of appointment.
So on the second Friday of March we loaded into the car for the yearly trek. I was prepared for bad news. Last years trip was so great, and it seemed like too much to hope for that this year would bring good news too. And if I'm honest, I try every year to prepare myself for "bad" news. It's just a part of having kids with this syndrome. The possibility of surgery, the probability of aorta growth, and the potential for every visit to be life changing. We live our lives with the millimeters constantly in the background, never far from the fact that inevitably someday it will be one of my babies on that operating table instead of my husband, and we pray that day never comes, or at least not for many, many years.
This year our trip seemed to fly by. For the first time both giraffegirl and giraffeboy were completely cooperative during their echos, so they went quickly. During Giraffeboy's echo I actually managed to kind of follow the measurements, so I had a sense of where he fell before our doctor came to chat. The number seemed bigger to me than I remembered from last year, so I was a bit anxious before she arrived. But then she was there. And this year was our very sunniest year yet. Giraffeboy's aorta had grown 2 millimeters, but then giraffeboy himself had grown significantly this year, so when all was said and done, his z score remained stable below 2. And Giraffegirl's aorta had remained the same, despite her body growing this past year (she's now a big 6- practically grown up if you ask her), so her z-score actually hit right at 2. For you non-marfs out there, unfamiliar with z-scores, anything under 2 is considered in the "normal" range. And although Giraffegirl's chest slightly indents, neither kid has any other chest or spine issues. Sunny doesn't begin to describe this trip. It was like those rare perfect days, sunny and 70 with no humidity. The kind we get only a few days a year in Minnesota, but that draw everyone outside to enjoy it. The rest of the day passed in the post visit bliss.
It wasn't until Saturday that I really thought about and appreciated the significance of these numbers. I was cleaning out our bill holder and came across the folded heart paper from our visit in 2011. In 2011 Giraffeboys z-score was 2.46, down from 2.7 in 2010. Giraffegirl's 2011 was 2.39, down from 2.5 in 2010. Seeing these numbers compared year after year, continually decreasing as their bodies grew stopped me in my tracks, and I said a prayer of gratitude.   
This still amazes me, writing this. We have been incredibly lucky, beyond blessed. But there is more here too, and I would be neglectful to not share it, as I feel it is a major part of our story. Our worst trip to Marfan Disney World took place in February 2009. Both kids were quickly approaching a z-score of 3, just barely not "bad" enough to qualify for the losartan vs. atenolol study. Although we believe in God, believe in prayer, neither Giraffedaddy or I had prayed much about marfan syndrome, in regard to his or the kids health. How do you pray for a cure for the incurable? And we were still living in the naive bubble of our families version of this was "pseudo" and not nearly that big a deal. Looking back, I recognize that denial, but I truly didn't then. But it's August where it all changed. I've talked about attending the NMF conference that year in past blogs, about how we learned the truth about where giraffedaddy's aorta was at. Right after conference that year is when we started really taking praying for marfan syndrome seriously. I have had conversations with my pastor about this many times, about praying for stability instead of cures, praying for strength to handle whatever this brings. This praying started in the later half of 2009. Our 2010 visit was the first visit where the kids numbers went down, and as you know, they have continued to decrease every year since. Our kids aren't on losartan, we've left them on atenolol waiting for final results from the study to come out, not worried about not switching early because for our family this drug is currently working. But I don't believe it is just the drug. I believe prayer has played a large part in this. I am grateful our prayers are being answered about this. And I pray for stability for our many friends and even strangers out there with marfan syndrome who are watching their millimeters too.    

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