I took Ryan to the Aquarium yesterday after speech because he had a good session (we actually ate his favorite lunch Greek food with Daddy first and then went). Everything was great until he went in this stupid playscape and then wouldn't come out! Kids were trampling over him because he wouldn't move...finally I had to reach up from underneath (get another kid to help me reach him because he was trying to get away from me) and pull him through an narrow opening on the side and then I took him home crying. :( Ugh.
Wednesday, August 12, 2015
Reagan was actually dozing off on her own tonight but seemed to get a second wind. I waited until about 11:20pm and gave her clonidine. She did get a little more active for a bit, but then settled down and fell asleep. I'm not sure how well she slept (in her chair) but when I woke up at 5:30am to run, she was very still and appeared to be sleeping. She was awake and moving around by the time I got back...but at least know she got some sleep! She was definitely sweaty from being in her chair all night (I noticed her having some temperature regulation issues last night sweating her back wet). We gave her a quick bath first thing, hoping that might help her feel a little better. She was also doing a lot of mouth movements. Very "gaggy" but not actual throw ups and it would come on in waves. We noticed an increase in saliva (she'd almost choke on it at times) and also a sensitivity with her eyes (less to noise/more to movement). Poor girl. We gave Zofran around the clock but I'm not sure how much it was helping. She only had one real therapy PT (speech came but just had to work on her computer while she was asleep/tense), and even though she seemed annoyed with the stretching, she definitely relaxed more afterward. Unfortunately that didn't last long. She spent a lot of time in her tomato chair yesterday because we had to keep her upright. Tonight I was able to hold her on my lap some, with her sitting up straight and she got some gas out. She's holding her urine a bit again so that's just another thing that's off with her right now. No crying at all today. Some whimpers/moans and grimaces, but overall temperament-wise she's been pretty calm...just sensitive. Hoping she can sleep this nausea off tonight. Can't stand see her fighting that again.