Monday, January 25, 2016

Week 127: Off and on

This week, we're remembering Great Grandma Virginia, who passed away a few days ago.  I will never forget the first time I met her.  She eyed me critically from her position on the sofa, declared that I was tall, had good teeth and good child-bearing hips, and accepted me into the family immediately.  She always welcomed our visits, and never failed to deliver a few zinging one-liners when we were there.  One of my favorite memories of her involved a well-meaning neighbor of hers who Virginia often found annoying.  We were over for a visit when the phone rang.  Grandma Carol answered the phone, and it became obvious that she was speaking to the neighbor in question.  From across the room, at volume sufficient to be heard several blocks in either direction, Great Grandma Virginia (slightly hard of hearing) yelled, "I'm not home!" 

I love this picture of her and Lemon from a couple of years ago when we visited her, it totally captures the spirit of her interaction with him.  She was the last of our kids' great-grandparents, so she leaves behind a void in their lives, and ours, that can't be refilled.  We will always treasure our memories of her.  

Aside from this sad news, it's been a fairly normal week around the homestead.  We're continuing to experiment with ciproheptadine to try and figure out the best way to maximize its effects on Lemon's appetite.  Last week, we noticed that it had a really potent effect for the first several days that he was on it, but then the effect began to fade.  Our clinic had mentioned that a lot of kids cycle on and off of the drug in order to maintain its effects, but they hadn't commented on how long the cycles were.  Since it seemed like we were losing efficacy, I consulted the internet, and found out that there are a surprisingly large number of ways that people cycle this drug (and those were just the ones that I found).  One schedule that I saw mentioned several times was 5 days on, 2 days off.  That seemed to me to fit well with what we'd seen, several days of high efficacy followed by a taper, so we're going to try that schedule until our next clinic visit and see where it gets us.  We went out for our first family meal at a restaurant as a foursome, which was much less of a disaster than we'd feared.

In Lime news, he's figured out how to sit unsupported, and is pretty good at it although it certainly helps to have quick reflexes if you're serving as his support person while he's attempting it.

 I will try to avoid too many "time machine" photos, but in order to console the Patriots and their fans I feel compelled to post this side-by-side of Lemon and Lime showing their true colors during the playoffs.

A few other highlights from the week--some strumming,

 some fire-engine viewing,
 and some chilly winter walks.
For the first time in a very long time, I feel like our family had a regular week.  Some happy times, some sad, some lovely memories, some very early mornings, a lot of coffee.  Yes, of course, some treatments and medicines too, but I am so glad that at least for the last 7 days, CF has left us more or less alone to just be a little family in a regular house in a sleepy, wintery city in the Midwest.  I could do a few more weeks just like this. 


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