Update

Liz, about a year ago, looking good and loving to eat!!


I took a week off of dealing with doctors, plans or schedules. In fact, I saw two of Liz's doctors in the hospital when I was there on Wednesday and I steered clear. Really. I just needed time away from it all. WE ALL needed time away from it all. Thankfully, Liz's body must have received the memo, because she had a good week and that only helped my little medical sabbatical. We even ate at Buca Di Beppo, which is a place that is usually like kryptonite for her. Pasta and bread is the worst thing she can eat in terms of causing her horrible pain and, often, retching. Thankfully, she did fine with it and we had a fun dinner out. She had four days of complaining of ear pain and my neighbor who is a nurse practitioner was willing to check her ears for me so that we could avoid a "normal" trip to the pediatrician. She is a mom to a now-strong and healthy 13 year old who had Leukemia as a toddler. She is aware of how tiring it is to constantly go to appointments and the hospital, and has been so kind with looking at Liz to help us avoid a trip to an office. She has sent us to the ER twice, so Liz wants to flee when she sees her coming over with her medical bag, but I grateful for her!
I did make a few phone calls, so will get a few phone calls back next week. Her records have been sent to the Hematology/Oncology Dept. at UCLA and Children's Hospital LA. The nurse practitioner at each office will review and then have her scheduled for consult. The doctors we have been seeing for her blood/bone marrow issues are well regarded, but it is time for second and third opinions. On Tuesday I will also get the ball rolling on meeting with the dietitian and scheduling her blood work for evaluating if she is absorbing enough nutrients (many of us, including a few of her doctors, feel she most likely is not and this is why she is so much smaller than Katie and has fallen off her curve on her growth chart). Lastly and with dread, I will hear from her surgeon as to how and when he thinks we should proceed with her stomach surgery. Blah!
I wish I could put my fingers in my ears, close my eyes and hum, like you see children do when they are showing defiance or are just scared or not wanting to hear what someone is saying. How much easier life would be!