Thursday, June 24, 2010

Things I forgot to post about:

I forgot to call my dad on father's day. He's been "unavailable" for over a decade. I feel guilty I didn't at least call. He is actually the parent I have always liked the most. We had our own problems that day. And, general rule, we are currently avoiding "Hallmark holiday" discussion, celebration, or mention. He's currently on "limited availability" about once a month if we can drive to Wyoming... and IF M can ever find her phone, because that's where his number is stored. I feel a little guilty, but at the same time, I feel like he hasn't been around since I started high school, but still. He's my dad.

LMS was seen at both CF clinic and Child Development.
In clinic, she got a five day run of Pred.nisone, twice a day. She has handled it well. I am a little afraid of the next few days. I know when I am coming off pred, I'm... a touchy crabby (the way a lion is an angry house cat).
She also got a new lung x-ray. Her lungs actually look much better than they did when they were last scanned. The lower half of her right lung is NOT completely dead and gone. She did, however, have some mucus, and some air trapped around her heart. So they started her on the pred. to reduce inflammation, hopefully letting the trapped air free. She sounds a lot better, despite the Pulmo.zyme issue.

In Child Dev., she got Cel.exa (antidepressants). We have about five more weeks before we really know how she is going to respond to it. The CS rep at the pharmacy gave us two syringes, "The dose is 1.25ml, it's kinda tricky. This one will measure the 1ml, this one will measure the .25ml". The dosing did make physical sense, but not logical sense to my brain. Did I really need two syringes? I processed. What is the connection between this and the 5ml of pred she's on? I mean, sure, it's 1/4 the dose, but SO??? Finally, I got it. 5ml is 1tsp. 1.25ml is 1/4tsp. DUH, and much easier to measure (with one syringe even!).

Several times this week there have been conversations like this:
"I love you, Sunshine"
"Thank you!"
and
"Sunshine, I love you!"
"Yeah. I really like my pants!"
But then there are days when she comes up to us, gives huge hugs and smiles, and wants to be cuddled and says lots of prompted and unprompted "I love you"'s

The good days have been increasing lately. She's excited about her new last name. She's excited about the adoption.

1 comment:

  1. So glad to hear the good days are increasing, and I *hear* you on the pred issue.

    A friend of mine with a child with med. issues had a T-shirt that read "I am not a terrible parent, my child is on Prednisone."

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