CF has been pretty quiet lately.
Fairy hair |
Now that the drug study is completed, Rees has commercial Orkambi covered for a few more months. We'll see how badly the state balks come January when they have to pay, as the Marketplace spit him out of the system due to his change from full time work to part time. He finally loves his college program and takes a mix of on-campus and online classes.
Did I put "tattoo" in the title? Oh, I did. This June was our 25th anniversary and we had an Anchorage getaway ~ four whole days in the city. We stayed at the handsome Hotel Captain Cook. We strolled the coastal trail each morning, window shopped, walked to fine restaurants, went swimming . . . and got inked. I cried. Not because it hurt (It didn't) but because Ken got one for me. Four years in the Navy; no tattoo. Four years in the Marine Corps; no tattoo. Two black belts; no tattoo. His wife begs Pleaseplease can we get our names on each other for this fantastic anniversary??? and he does it. I am so spoiled. Twenty-five more!
And our hobby farm is fine. Clare has named it Lucky Duck Farm, as a nod to a phrase I remember exclaiming in childhood and to the single duck lucky enough to escape a marauding owl that took his four siblings last year. She has also decided that only Nigerian Dwarf goats will do for us. They are more docile than Nubians and short enough not to be able to jump our fencing. The cute couple is a lady named Happy and a gentleman named Thor. We are expecting babies in February.
I remember having pen pals as a kid and writing to Ken when he was deployed (Two different time frames of course.), keeping a letter going for days, scribbling "OK, now it's after work..." or "Back from the store..." Well, I'm going to hit publish or I'll never get this up.
Happy Thanksgiving friends!
Love, Allison
So happy that her CF is under control. How has Orkambi helped him? Does he have DDF508?
ReplyDeleteHi Katy ~ Yes, DDF508 and the orkambi must be helping, as his last hospitalization was in August and it had been 19 months. He usually goes in once or twice a year! He'd been on it over a year (part of the vertex drug study).
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