Getting Into (and Out Of) The Sling of Things

Despite the challenge of 6 weeks in a sling with a fractured clavicle (here), Sienna has found ways to have a great summer!
In July she completed her second visit to UCSF to participate in the F.O.P. Natural History Study.  This year we had a great flight:
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and good times with Dr. Hsiao and his team:
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and a visit to the excellent UCSF gift shop – always a highlight!
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And interestingly (amazingly!), during the physical therapy evaluation, some of her joints registered a wider range of motion vs. last year, particularly in her spine, which registered zero motion last year but had a fair amount this year.  I have heard stories of joints unlocking during growth spurts where the healthy bone is growing in the absence of new F.O.P. flare-ups.  I am hopeful that is the case, though I also wonder about her compliance last year.  You might remember last year’s visit when the wheels came off early in the day, here.

This year, with Sienna’s broken clavicle, this was also a great opportunity to have a clinical visit with an F.O.P. expert, and to check in on the healing process with the CT scan.  The bone was already healing and fortunately there was no clicking or scraping when she moved it.  However, it is healing in the inverted V shape in which it broke, so it will be slightly shorter than the other side.  He doesn’t think this will impact her much, but something to be aware of (makes my stomach turn – my poor sweetie!)

After our visit we spent the weekend with her cousins in the area, which was wonderful because we only see them about once or twice a year.  They are excellent swimmers and we were able to cheer them on at one of their swim meets.  This was great fun to see, but turned out to also be surprisingly difficult for both of us.  For Sienna, it was not maybe not so surprising,  because it was crowded and hot and boring to wait between events. The surprising difficulty for me was that it was the first kids’ swim meet I’ve attended since Sienna was diagnosed with F.O.P. 5 years ago. Competitive swimming was an essential part of my childhood and I was flooded with my own memories of athletic training and competition, travel, accomplishments and friendships formed, and it hit me hard that Sienna doesn’t have that in her life.  Also, it was hard being surrounded by so many healthy kids who don’t have to worry about each step like we do.  When Sienna finally melted down I welcomed the opportunity to go for a walk with her and then leave the meet early.

Before the meltdown:

swim meet

After the meet we visited her cousins’ local pool and let Sienna get some of her own sillies out.  With her injury this year we had to cancel her summer swim lessons, but we let her try some swimming wearing her spare sling.  It was tough for her to not try to use her left arm, but she actually did a great job with the one-armed swim!  Maybe we can get her on a swim team after all…

After returning home, we had one other exciting local trip – an overnight visit with a few dear college friends and our college swim coach.  It’s an annual tradition to get our children together, and we hope that they form great friendships as well.  (Or that they at least are willing to tolerate each other so their parents can hang out!)

It was again a wonderful time, but another reminder that it’s really, really tough to visit new places – nothing is ever safe enough – hard floors, slippery floors, loose carpets, different stair configurations, seating without backs, fun things that excite Sienna and make her want to run around – everything is a safety hazard!). This is why we so rarely leave our usual routine – if Sienna can break her clavicle in our own house, imagine what could happen if we relax our guard out of the house (and if we’ve ever visited you, know that we love you tremendously to be willing to leave our safe house!)

Watching my sisters and friends as moms and how relaxed they are, even as their kids run around like maniacs, makes me happy for them (I hope they are grateful for what they have!) and makes me look forward even more to the day an effective treatment for F.O.P. is ready and I can join them in that relaxation.  And in the meantime, thank goodness for soft sand.  The one place where I can (almost) relax!

LBI
(the surface is safe, just have to watch out for any of those aforementioned maniacs)

Sienna then suffered through another couple of weeks (thank you, legos, for being so entertaining!) before FINALLY getting the OK to remove the sling.  The best news of the summer is that her shoulder remained unaffected and she still has the range of motion that she started with. Hallelujah!!

Here are some of our post-sling celebrations, to be continued for two more weeks until school begins!

post sling
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