I've been asked a couple times by nurses, doctors, and friends, if I'm just relieved to finally know. At first I thought that was an odd question, relief was not how I was feeling. But now that shock is wearing off and reality is setting in, I think I am. I have felt like we were missing something on her for as long as I could remember. So although I would have never wished for this solution, I am amazed at the progress she has made in 2 days of correct medicine and correct treatments. She slept through the night last night without oxygen. I actually slept 4 hours in a row last night. Unbelievable.
Yesterday we battled a lot over take her enzymes, she's calling them sprinkles. She hates them and she can't eat anything without taking them first. We tried them in applesauce, gagged them back up, we tried to learn how to swallow a pill (in pudding, in a straw, by itself, not quite there yet), we finally put the sprinkles in pudding (this seems like the easiest option, although she still hates it). Yesterday was a battle of wills. She choose to kick her tray (glass cup shattering on the ground, I doubt they'll send up glass for her again), she chose to not eat lunch, she chose not to have a snack before bed. I chose not to beat her up. Hehehe. As I was eating a cookie late last night with my dinner at 10:00 pm (Thanks Steph for the salad, delicious), she said, "It's not fair. You don't have to take those sprinkle things before you eat. Daddy doesn't, Annie doesn't, Lucy doesn't, only I do, it's not fair." Boy is she right.
Poor little sweetie. It is going to be an adjustment for her and for everyone. Do they have Child LIfe Specialist at the hospital? I am wondering if they have any ideas for helping with taking the pill. You are doing an awesome job, Suelly! Praying you get some good rest. And, just to be a little encouragemnt my former student Ashleigh was a champ at taking her pill...so Ruby will get there. :)
ReplyDeleteRuby may eventually feel special because she is the only one who GETS to have sprinkles (pixie dust?). I can somewhat relate to that feeling of relief when you get to find out what's going on, even when it's something less than desirable. Knowledge is power, right?
ReplyDeleteHugs to you mom. You are awesome.