We’ve been missing in action for a great reason. At the end of July our family embarked on our first true vacation in seven years, heading to the Cascade Mountains in Washington state. Ray put in weeks of planning to coordinate all the details with what Abbie would need, and his work paid off in spades. The trip could not have gone any better or been any more enjoyable for us.
Because we wanted a direct flight to Seattle we had to fly on Hawaiian, the only catch was, they don’t offer oxygen on their flights. This was a hurdle since the only other time we’ve taken Abbie to the mainland, she needed up to four liters during the flight. To get around this we rented a tiny little oxygen concentrator, which worked brilliantly and quietly, and which Abbie had no need of! She did awesome during the flight, praise God! I was so proud of her.
The next eight days were filled with fresh mountain air, sunshine, swims in the pool and hot tub, and lots and lots of time spent lying in front of the fireplace…Abbie’s absolute favorite thing! There are so many of you in the Northwest that I would have loved to have seen while we were there, but we really wanted to give all of ourselves to the boys during this vacation. I hope to catch up with you next time, since we are planning many return trips to this destination!
What, or rather, who, made this trip so incredible for all of us was Genevieve. She accompanied us so that we could enjoy being together as a family, but then still be able to do things like take the boys horseback riding. She is truly our angel, and so beloved by Abbie.
Having my whole family together for a wonderful dinner. The boys staying up too late to play cards together. Seeing my nephews ride their bikes, clothing optional. The boys learning how to fish, and catching their first ones. Being silly with friends good enough not to care.
The kindness of strangers: a woman who, having heard Abbie’s story while we were in the hottub, stopped me in the lockerroom to pray for her and our family; the police officer who let us park at the curb while we checked in for the return flight (for 40 minutes!!).
I don’t think any of us realized how much we needed this — to just get away from every appointment, meeting, practice, shift and phone call, and really enjoy each other. What a tremendous blessing!
Meanwhile, we continue to work with Abbie’s new neurologist to begin treating her dystonia. He touched base with me while we were away and asked me to double her Baclofen dosage. She is SOOO happy, so much more relaxed and very, very “with it”. Her communication has been very quick with her switch, which has eased my concerns about her being too drugged. I’m so grateful to know that when we reach the point with Baclofen, as we have in the past, where Abbie gets worse, it will just mean it’s time to start the drug (Artane) to treat the dystonia, rather than meaning that we’re just stuck with no solutions.
I am hoping to hear from her orthopedist tomorrow to set a surgery date. I am feeling very positive about this, as we are now dealing with the underlying cause of the subluxations, so that after recovery Abbie will have a fresh start, with a minimized risk of ending up right back in this same position down the road. She is looking so healthy and strong, interacting so much and so appropriately, I am just filled with confidence and faith that she is going to come through the surgery very, very well. But, as always, we appreciate your continued prayers as we prepare for the day.