I was all excited to write up some sappy blog entry today. The past few nights Annie has had a bit more trouble getting to sleep at night, and has been waking up for some extra lovin’ at odd hours. She’s normally such a great sleeper, but it’s been a tough week for her. I’d like to complain…as getting up at 4am to cuddle for an hour isn’t the best use of our slumber time…but I can’t for two reasons: 1) Jeremy usually does it ;) and 2) Annie isn’t a huge cuddler in the first place…I’m generally in her way most of the day - any moment that she truly just wants to curl up and breathe in my ear and lay her soft cheeks on my shoulder, and curl her little fingers around mine are priceless. Of course for a second when I’m bleary eyed and ready to retreat to my own bed I start to wonder just how long she’s going to expect me to stay here and rock her…but then I look down at that face and see the days flying by and know…it won’t be long before I’m begging to do just this.
So anyway, life is good, getting some cuddle time with our cutie. We’ve been introducing all sorts of new foods. The grocery store used to intimidate me as I looked for safe foods for our Annie…and the other day I was standing in line confidently, with a cart full of many foods I would let her eat one day. (We already try to make most of our staples around the house “Annie-safe” even though she’s not really to table food yet.) I was having one of those weeks…those nothing-is-wrong-all-is-well, kinda weeks. Annie was good, we were good…it was like there was no galactosemia for miles…(insert sappy music and gorgeous family frolicking on the beach or something…it was like that).
Then today we got Annie’s most recent gal-1-P numbers back. Let me back track a bit…gal-1-P for those of us normal folk is essentially Annie’s galactose level. Galactose is bad…so we want that number to be small. At birth her gal-1-P was 35.8 (yowza!) but it has steadily dropped every test there after…and we were pleasantly down to 4.2 in March. (Anything under 4 is considered a “treated galactosemic” so we were soooo close). Annie’s next scheduled test would not have been until her 1st birthday. But paranoid me, I asked for an additional test in between the 8 month and 12 month…so we went in for the 10 month test last week. I’ve been adding new foods to Annie’s diet - confident that I’m SO paranoid about things that I’m certainly being cautious enough with her diet. I anticipated that even with the new foods, this number would also be less than the previous number - the doctors would be right (they told me the extra test was unnecessary, as the gal-1-P would most certainly continue it’s downward trend.)…after all, the number goes down, even for kids whose Momma isn’t as diligent as I’ve been, right?
Jeremy got the call tonight, Annabelle’s 10 month gal-1-P is 6.1 -- that’s nearly back where she was at 4 months old. The number has gone up, and (this is my personal opinion) (every word I type here is my personal opinion) not by just a bit, but a significant bit. We didn’t go from 4.2 to 4.4.…6.1 is a big jump.
It’s amazing what one teeny weeny little number can do to your day. I’m no longer sappy (ok, I always am) - but now galactosemia is back at the front of my mind, I’m back to spending hours reading about galactose levels in foods, emailing fancy dietitians for advice…and the next time I’m standing in the checkout line at the grocery store, I won’t be so smug…I’ll wonder what food it is that’s lurking in my cart that’s causing Annie’s numbers to rise. Today is one of those days that reminds me that I haven’t figured it all out yet - and I’m most certainly not in control here.
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