I'm tired tonight. It's Thursday, October 22nd and after a day at Children's Hospital with Grace, I'm tired. Sometimes it's just the drive in and back that multiple's making for a longer day. The weather was beautiful today - high 70's.. (it's October!).. I'm not complaining, but being up early and then inside, didn't get to enjoy it much.
Grace has always had BM issues - and we got hooked up with another GI specialist and did a couple of tests today. She did so great.. and was given a sedative and then went under general anesthesia. She must've slept well because she came home and was bright-eyed and bushy-tailed, as dada & I were ready for a nap. Not sure if they've pinpointed what's happening, but took some biopsies; confirmed a hiatal hernia, possibly allergies and ruled out anything wrong with her rectum. So... I don't know where this puts us..other than "there's more tricks in the bag", per the doctor. Okay! Been dealing with this almost her whole life, I don't expect answers right away. We carry on..
Then there's the whole exhaustion from calling people and trying to get as many services to Grace as she can have. We get PCA (personal care attendant) hours weekly for her..and every year they seem to 'make a mistake' from the previous year. So, yes, I put in to fight for 15 minutes (is it worth my time?) YES.. it's the principal. How can we go from 11 1/2 hour weekly, down to 11 1/4 a year later, when she's getting older and the demand for assistance is more.. doesn't make sense. So, after many phone calls.. wrong information and an email that probably sounded exhausted from me.. I got them to come to 11 3/4 hours weekly.. Okay.. I'll take it.. (but... I wanted it corrected).
A little budgeting now.. a warm shower.. maybe a little dessert - plenty of water.. I find I haven't been drinking alot of water in the last 2 days.. :( then it's an early night of rest for me...
Thanks for reading. Keep up the good fight for your loved ones and children.. some days no matter how tired we are.. it's about the principal that we're fighting for!
pattie
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