Holter monitoring results back. - abnormal. Bladder ultrasound report - bladder not emptying fully. Both of these within the past 3 days. BTW - urologist was an ahole. He should have been a proctologist instead. Monday Meg sees pulmonology to discuss a cough assist due to her decrease in swallowing and excessive upper airway congestion from saliva and reflux, Tuesday is GI follow up to talk about a possible JG Tube - one in stomach and one in small intestine. Monday is also labs at home with special PIC Line pedi nurse. Wednesday hopefully we can get annual mito labs/screening drawn with the use of ultrasound equipment to find vein at hospital outpatient lab through radiology. All I can think is poor Megan. My sweet little girl put through so much. Why her? Why not me? Why???????????????????????????????????????
Yesterday morning I snuggled with her on my lap in our huge Jax Sac bean bag (bought especially for the princess and the pea) and she looked at me the way she does like she knows exactly what I am saying while I asked her what she knows that I don't and if she knows how much time we have left together??? Does she wonder that?
The highlight of our day was getting to go to Ryan's school for his classroom fall festival. There were 5 stations set up with cookie decorating, crafts, lollipop ghosts, etc. that the kids got to rotate around at. Ryan wanted me to bring Megan so he could make her a scary popcorn hand. He kissed her and told her to please feel good enough to come to my class. He was so excited that I was coming AND bringing Megan. He said it was important since she wouldnt ever get to have her own fall festival at school like he does. She did like it. She was mezmerized with all the activity and kids. So much that it took all of her energy and she fell asleep after 30 minutes and slept for the last 30 minutes of it. I am glad I got to bring her with her big Halloween bow in her hair and her spookly shirt on - for her, for Ryan and for me. For the memories. My stinkerella, stinkerbell, tinky - we have so many names for her. Flopsy Mopsy, Drooscilla(duh - cause she drools). Little Mama, Baby Girl. MayMay, Meggy, Mean G. I heard that the more nicknames a person has it means the more they are loved. I believe it is true!!!!