It has been a whirlwind of a summer. I can't believe it is over and school starts next week. Although I am ready for the boys to go back to school I am not ready for the routine of it all. We had an awesome summer. Being able to go on vacation with a pretty healthy, happy Megan is definitely a highlight for me. I was able to actually relax and take it all in. From the roadtrip up north to Fire Island and the roadtrip back it was all around great. I never would have imagined Megan to be such a great long distance car traveler considering she usually starts freaking out 30 minutes into any drive. I think she knew it was a fun trip - not a Dr. appt!!!!
She has finally gained 2 pounds since the start of the whole GI stimulator in February. May and June were really bad and I was freaking out thinking that maybe this thing was like everything else - good at first and then somehow her little body just rejects it. I thought I was going to lose my mind actually. Palpitations, sweats - all of it. My prayers were answered and it kicked in somehow over vacation and has been going well. I did change everything about her med schedules and feeding times to capitalize on more feeding. Aggressive surgery - aggressive changes. 24 meds are not simple to just flip around and rearrange. Some interact with others and some it is hard to alter the hours so it has to happen slowly so her body didn't go into withdrawals or overdose mode. It all worked out though. I actually have a little pinch of flesh on her thighs for her sub Q IG infusions. It was killing me to look at her bones in her back and her pelvic area - they stuck out like a cadaver. Just two pounds has made a difference. I tell her if she doesn't watch it I am going to have to put her on a diet to keep her booty from getting too big.
Her reflux is still a nightmare - but one thing at a time.
Life is calling. Have to write more later.