Today I would have to say was a better day. Last night wasn't so good as she hardly slept and seemed to be very uncomfortable for most of the night. Up to her old tricks of asking to be moved all around the house - the couch - the chair - downstairs - her bed - back to the couch... just not comfortable :( This morning didn't start out so good either I guess. Megan had decided it was time to take off the tape covering her incision on her groin from her surgery - ouch! ouch! ouch! but it did need to come off. She has a nice big bruise there from the surgery as well. You would think they could find a different way to cover it than just tape on skin! She then was off to the bath - which she didn't really care for either. She has a band aid (or two) on her hand that had the IV in it, and she is very protective of it. You better not even look at it like you want to take it off or she will throw a fit! The band aid is just barely hanging on still and she is constantly worrying about it trying to re stick it on her hand... We had hoped a bath and it would just come off - although she would have nothing to do with getting that hand anywhere near the water! She gets so upset at even the idea of it coming off we have all changed our approach and protect it with her, although she doesn't want a replacement or any tape on it to help hold it on...
She did have a Dr. appointment today and we had a long conversation with one of her doctors, about options to look into next and different ideas. Ali of course got a once over and discovered she has lost about half a pound since we left Seattle Children's Hospital last Thursday. Also the tape on her cheek that keeps her NG (feeding) tube in place at her nose needed replaced, so we did that while there as well - not a pleasant experience for her - but she sucked it up soon after we got started with it - as it took 3 of us to to do and she ended up doing fairly well - considering. She got her blood drawn again - to check to see that her meds where not having any adverse effects on her, blood pressure taken, ears and mouth looked at, chest and back listened too, stomach poked a little, etc etc... We discussed options for a 2nd opinion and her pediatrician agreed this was a good thing. She was going to call Doernbecher Children's Hospital in Portland to speak with them about specifics of an MRI which we may have done and give them a heads up about her since we may be going down there - and if they are in on the MRI early it would be what they wanted instead of possibly doing it again. Meg and I have not decided for sure where to head for a 2nd opinion but Portland is a possibility.
So I started off "Today I would have to say was a better day." so I am sure you are wondering when does it get better? Ali did have about 5 bites of a waffle for breakfast, and after her Dr. appointment she had some cottage cheese and some Dora Chicken noodle soup with me for lunch! And for dinner... she actually had quite a bit of hamburger stroganoff and even some broccoli off of dad's plate :) At lunch we played some as she tickled me during lunch and we have played some tickle games this evening as well. I guess this morning she even got off the couch and wandered down the hall to find Megan in the shower! After I got home from work she wanted in her stroller so we took a walk around the nearby park. She still gets agitated easily at times, and at times hard to figure out why, but she has had quite a few good moments today. We try not to get too excited as the ride has definitely been a roller coaster and as soon as we think she is coming back it seems she has a setback and takes a step backward, but every little glimmer does give us hope :) Just hope sleeping patterns change soon! :)
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