Ok so here is the long awaited recap of our Magical Medicine Monday! We started off the day with Claire coming along for the journey. She was cheerful and joined right in with our song singing. Since this was our last visit prior to Halloween, we brought candy with us for Ella to give out. She also wore her fun witches hat that flops from side to side as it sings a silly song. Ella loves sharing it with people. As we continued the day she told everyone she came in contact with about her awesome night at the Carousel Ball and gave treats to all the staff and kids/families she found. Again we ran into a pregnant woman and she went right up to her and said congratulations! is it a boy or girl? I really cant wait to get the results from her neuro-phsych eval. I am always so baffled how her brain works and just wish I could understand so that I can best help her. She never has to be reminded to be kind or thoughtful to others but needs constant reminders to use a tissue, not run out into the parking lot or throw away her napkin after washing her hands. We will get those results next Tuesday!!! Maybe I can finally have a glimpse and learn new techniques in how to get those important, and sometimes life-saving, details to stick. Speaking of stick... only ONE to get her IV placed!!! YIIPPPPEEEEEE!!!! We got thru the appointment with the Doc with just minimal drama from the girls. I also asked Dr. B to research the program Brain Balance and give me her opinion. Soon after, Chris found out he was not needed at work so he came to join us!!! He got there just in time to stay with Ella as she got her chemo while I went down with Claire. Claire was in rare form by the time we got down to genetics. She was bouncing off the walls... poor thing was so tired! We managed to get thru the appointment but not without me having to get my back up a bit. They said she does not display the typical signs of NF so there was no need to test her! I asked if that ever happens... where an individual can have NF without any signs? I explained that I did not want to wait until she turns five to find out again. They agreed to test her but they needed to test Ella as well. Now it will take 4-6 weeks to get the results!!! UGH!!! I hate waiting!!! I am sure it will be negative but I just need a definitive answer!!! Ella finished out the day with her breathing treatment and gave away all the candy!!! We brought a bag with toiletries to give to our friends on Greys Ferry...Thank you so much for your support!!!
Posted on: Wed, 23 Oct 2013 01:49:02 +0000
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