Tuesday, March 15, 2016
Reagan had a pretty good night's sleep last night. I think she slept through til about 7:15am or so. She's been super sweet and smiley today. Maybe a little sensitive to noises, but overall pretty darn good. So this morning her brother still had a 102 fever, so we left him behind with my step mother and they played here (where he couldn't spread his germs) and we took Reagan to her opthalmology appt. We got there just before 11 and they informed us that we were 45min late! Apparently our appt was really at 10:15am when I thought it was at 11am. Not sure how this confusion happened as I entered the appt into the calendar on my phone a year ago when we booked it...but whatever...they still wouldn't see us (they said the dr had to catch a flight otherwise she'd see us...my guess is she just had to catch lunch)! So they squeezed us in next week, so great, we get to come right back next week. The only bonus is that they gave us a prescription for the dilating eye drops and we can pick those up and administer them ahead of time, so that will save at least 30min-1hr of waiting time in the office! So hopefully my girl will be in just another great day next Wed for this rescheduled appt. Ugh. So we headed home and she had a little break before OT. She did OK for OT. She's pretty tight so they just worked on a lot of stretching. She's been so crunched up in a ball for the last week or so, she could really use some laid back days to stretch back out! After therapy Grandpa came over to watch Ryan and we headed in to Dell to see her PM&R doctor for Botox B shots (myoblock). Since Botox A didn't work at all for her, this is the next thing to try. Her doctor said she's only had one kid ever that didn't respond to either A or B. Hopefully Reagan will have good results this time (please pray it works). We're counting on it, because the next option would be surgery and we really don't want to go that route. This go round was a lot more painful for her. We had her positioned on her tummy (since the shots were in the back of her legs) and I don't know if it was just her positioning or what, but she definitely fussed/moaned way more this time and we just barely avoided tears. Poor girl. They do have to go in pretty deep with those needles. It's three shots in each leg...I don't think I would've made it through that without tears! She powered through it though and then we headed over to the GI office just to get a quick weight (when we weighed her in Houston she was 2 lbs down so we just wanted to confirm that). She was exactly 50.8lbs, so she is about 2 lbs down. I don't think I went into a lot of detail about it on the blog, but we did realize a couple of weeks ago that one of her infinity pumps (that continuously pumps her formula into her...we alternate between two of them) was not working correctly (it was shorting her 200+mls a day). So we have no idea how long that had been going on, but for a while anyway, she was getting a significantly lower amount of calories than she should have been getting. It's all fixed now (we got a new pump), so hopefully her weight will go back up. The rest of the day she was super cute. She'd have these weird bursts of energy/excitement if she got too much stimulation, but she was good and super smiley. Tonight she was a little more serious, but she was also having a lot of stinky gas. I let her roll around a lot to try to get it out. I did eventually give her clonidine and then held her and got some good snuggling in as she dozed off in my arms. I almost made it to bed with her still asleep when a crash from downstairs (Daddy dropped something into the sink) woke her up with a sudden burst of energy. Mike then had to lay down with her to get her back to sleep. They are still laying there snoozing at 1am...I'm going to bed and praying that she stays asleep when he gets up!