Monday, March 24, 2008

Back From Vacation

We are back from a week at Kiawah Island with our extended family (Sprinkle grandparents, cousins, aunt and uncles --12 of us in one house). As usual preparing to take Roxie on vacation is time consuming and stressful (double and triple checked for her meds). But since we drove we were able to take LOTS of her stuff to make sure she'd be happy and comfortable (including her jogging stroller, wheel chair, adarondak chair, high chair, foam flooring, sound machine, and blow-up mattress). And guess what...Roxie had a great time. She enjoyed gourmet food, had fun on a family bike ride, strolled on the beach, and floated around a pool.

To enjoy Kiawah's magnificent tree lined bike trails, we rented bikes and a trailer to pull Roxie around the island so she could join in on the family bike rides. She can't ride in a bike seat because she can't wear a helmet as a result of her intense sensory problems with anything that touches her head (she cries uncontrollably). In a trailer she is safe without a helmet because it has a non-roll feature and side crash bars. Her first try was a disaster and she had one of her fits (throwing her head around, crying and was out of sorts for about an hour even after her dad took her out of the trailer). But that was her only major issue the whole trip! And by the end of the week we decided to try the bike trailer again and this time had McRae, Roxie's little sister, ride along inside. And sure enough with little sis by her side Roxie loved it, laughing and smiling the whole time. By the end of our ride both girls were lounging, looking up at the sky, and totally relaxed. We were thrilled and have just adopted a bike trailer from the Thomas family so hopefully we can take more family bike rides. It is nice to have a new option for something to do out of the house that can include Roxie and still be fun for everyone in the family.

We also bravely attempted a night out at the lovely Jasmine Porch restaurant with all 5 kids--gulp. Surprising us again, Roxie had a blast! She enjoyed she-crab bisque, pumpkin muffins, sweet potato ravioli, and lots more gourmet treats on a special night out. Roxie loved every bite and ate more than all the other kids. The rest of the week was nice and included a few strolls on the breezy beach, a couple of dips in the pool (which was heated thankfully) and Aunt Ellen's brilliant effort to get our wimpy kite to fly.

Unfortunately my nephews were sick much of the vacation with a virus that caused fevers, a bad cough, and fatigue for them. McRae and my niece had come down with the virus by the end of the week as well. We were terrified that Roxie could catch the virus, get a fever, and then have seizures and/or respiratory issues. And now with knowledge of her Mitochondrial Disease we understand that a seemingly small illness can cause Roxie to become critically ill (as evidenced in January of this year). So we were prepared for the worst with her Diastat pen on hand (in case of a seizure), a protocol letter for ER docs about treating Mito patients (believe it or not many doctors don't know much about this disease), and directions to the nearest hospital. But Roxie did not catch the virus and thus far has remained healthy! What a relief!

All in all we had a great time even with both girls sleeping in our room for a week. Cozy!

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