Monday, November 9, 2015

Wonderful girl

Reagan has had another wonderful day today! She slept well and woke up this morning around 7am...all smiles! She's still very crunchy but so happy and alert, we're loving it! She's had a busy day of therapy. Speech in the morning...they used the eye gaze, did a story with the big mac switch, and then practiced a sign for finished and vocalizing to request more! Then this afternoon she had Occupational therapy and did awesome for that as well. Her therapist said she did everything she asked her to do!! Then shortly after OT she had school. Her teacher said she used the eye gaze with her...successfully (lately Reagan hasn't been interested in using it during school)! And she also popped bubbles on her own! I'm really hoping she can hold out and continue this awesomeness for at least another day because tomorrow we have an appt with a doctor to do a "functional" eye exam and we really need her alert and responsive for that. In the past we've just seen an opthalmologist who doesn't necessarily tell us how much Reagan can see (we've even been to an appt when Reagan slept through the entire appt). She just basically examines the health of her eyes. This doctor was recommended by Reagan's vision teacher through the school (she actually going to the appt with us) and this exam should do a much better job at telling us what/how well Reagan is seeing things. It will also help her vision teacher (and all of her therapists) know how to better interact with Reagan so that she can see what they are doing!! So big prayers that Reagan continues on this positive track and is up for this appt tomorrow afternoon. Today wasn't all good...we did get some bad news. We're losing yet another nurse. Our Monday nurse is moving to a different agency that is offering her better pay. I'm so sad about this because she is SO good with Reagan. I mean really good. We have been blessed to have some great nurses work with Reagan and she is definitely one of them. I'm also very frustrated because I know how awful our agency has been about finding new nurses for us and we have gone weeks and MONTHS without having our hours staffed. As much as I disliked our agency in Houston...that never happened. Ugh. Very frustrating. I'm really hoping they'll get off their butts and finally find us someone. Someone good. Even though we have a nurse picking up weekends right now, she can't do any lifting so we really still need someone else. So basically now we are down to our one Tue-Fri nurse and we have Sat-Mon we need to fill. Not good. At least we have a great girl right now...it's hard to be too upset when she's doing so well. Lots of smiles tonight as well. She's just very laid back and happy right now. Lots of gas today and yesterday but no poos. I did notice she had the one red ear tonight (always her right ear). I've seen some people mention this online in their kiddos with mito and link it to dysautonomia...but she's really not showing any other dysautonomia signs right now. Temp is still good and she's just so happy!!! Praying for sleep tonight and more good days ahead!

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