I have video but I'll have to post it from the laptop tomorrow!
Thursday, January 16, 2014
It's been another wonderful day today for my girl! She woke early again and was kicking around but I think she went back to sleep. I got up at 7 and she was very still so I assumed she was asleep, but at 7:30am Mike went in to check on her and she was laying there still but wide awake! So who knows! She was sweet and smiley though, so that's great! We had an early start this morning with the Tobii rep coming at 8:30! Reagan's OT, Speech therapist, and vision therapist were all here (and more wanted to attend, but we had to keep it to a minimum, 6 people was already a lot for Reagan)! We spent a lot of time just going thru and adjusting settings and backgrounds but Reagan did spend a little time on it! I have some pics and video below! As far as her care conference goes, no update today. We've got an appt with her GI doctor tomorrow morning (and the palliative care dr is supposed to meet us there), so we should find out a lot tomorrow. Praying they came up with the right plan to get Reagan on the right track! So sick of these bad days for my girl! She's been pretty laid back today. There are some arm movements that I'm a little concerned about (she's been doing it since starting Lyrica). Hopefully we can get the neuro's opinion on that. Please continue to keep her in your prayers! Meanwhile brother has had a persistent dry cough since last week so the pediatrician is putting both Reagan and Ryan on a preventative dose of antibiotics just in case he tests positive for pertussis (neither have been vaccinated)! It takes several days to get the results back! Ugh! We've got to kick the sickness! Mike has had a cough for weeks, I was really sick Tues night but just have a sore throat now, and Reagan's just had a bit of congestion (but we've done our best to keep her isolated)!