Yesterday cupcakes. Today wedding cake.
In talking to Parson's pediatrician Dr. Fidone yesterday, he described her health situation as walking through Times Square with a 12 layer wedding cake. He said it is so precarious, that none of us have any chance for error. (That is a fantastic analogy - and puts into realistic terms what we have been feeling for the past 7 months.) Some days are easy, one-layer cake days and then others days are the 12 layer Times Square cake days. Boys and Girls, It ain't easy being the Cake Boss!
A friend posted a great scripture on my FB wall earlier this week that I keep going back to. It is a great scripture for any day, but especially the 12 layer cake days.
"So do not fear, for I am with you; Do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." -- Isaiah 41:10.
In my transparency, you have to know that I have been scared multiple times along this journey with Parson. I have needed strength and I certainly have needed a steady hand. I don't know about you, but I think that scripture is GOOD STUFF. It speaks to me right here where I am. I need a steady hand for the 12 layer Times Square days! He is gonna strengthen ME and help ME. Stop fighting a fight that has already been won. Ahhh - just relax Jenn. HE has got this.
Our favorite fellow on the pulmonary team is here this weekend. Dr. Shipra Singh has been with us since the beginning of our journey. She is actually the one who gave us Parson's diagnosis on 10/2. We just love her. The critical care team has decided that we need to remain here in the PCU because Parson would "scare" them in a regular floor with the respiratory spells (crisis) that she has. They also want to change her formula again to add calories & protein because she is using so many calories to breathe. So our plan for the day is to rest, play, take meds, make the monitors beep and breathe.
For those of you planning to LIFT UP BLUE tomorrow - please know that my heart is SO full because of you. Thank you. I can't find the words, so please know that YOU ARE LOVED!