Today was the first day of our second week at the Kartini Clinic. Amelia had vitals today and we had our first Parent Toolbox class, aimed at helping train parents with how to help their kids through this process.
On the vitals, we haven't heard anything, but are assuming no news is good news. If Amelia was dropping weight, Sherrill would have let us know. She has been more full of energy and has been lasting longer throughout the day currently on the 5 boxes of boost a night.
On the Parent's Toolbox, a lot of it seems aimed more towards the parents with teenagers, suffering from Bulemia, Anorexia, or Binge Eating, but Katherine and I have been able to at least contribute to a lot of the discussion and hopefully help some of the other parents out.
I am still trying to get a relatively normal work schedule figured out still too. I had thought to try the local community center pool this morning for laps, but when I got there, the pool was so full of people who were swimming MUCH faster than I was going to be able, I just gave up and went back to RMH.
We all have our moments of patience, and our moments of frustration. The toughest thing for us right now with Amelia is the constant need to spit. It is a "normal" part of her disorder, not wanting to swallow, even saliva, means that she ends up needing to spit... On the ONE hand, we REALLY want her to be past it. On the other hand, we have to breath deep and just accept it. I am sure, deep down, she isn't a big fan of it either... I think we will ALL be happy when she can move past it.
We are all kind of getting to a tired stage. This morning, I got up at 5:20 to turn off the food pump (as the bag was empty) and flush Amelia's NG tube. I then was going to go swimming, but came back, and couldn't get back to sleep... So, I am tired.
Katherine didn't sleep well last night, waking up a number of times over the evening, so was very tired this morning.
Of all of us, Amelia seems to be sleeping the best... I guess she is probably still the most resilient of us in that. In spite of having a small tube down her nose into her stomach, and food slowly being pumped through it all night, she still seems to sleep just fine.
We will adjust, we will figure things out, we will hopefully get into a sustainable pattern here. I know we all just miss being at home, our regular routine, and everything that we think of as "normal life..." We will all be very glad to get back to that...
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