Thursday, May 23, 2013
The Sleepy Fairy
Monday, May 19
Clinic for Alice---Good News!! She did not need platelets. She is headed into her third week without platelets. We are so excited that maybe there is some production happening in her marrow. She did need red blood cells, and again it took a bit of time to match her blood.
ANC stayed at 2000 which is great considering she went from having Neupogen every day to every other day. Platelets increased to 19 from 17, and hemoglobin dropped to 7.1, thus needing an infusion of red cells.
We are happy with these numbers, and feel a surge of excitement that our ever so small window of avoiding transplant has widened just a tad, acknowledging that we have a tendency to become vulnerable with the ups and downs of Alice's fickle body.
I said to Alice recently that she is a very special little girl...she corrected me and said, "I'm not special, I'm a fragile little girl, with great big plans...I'm gonna change the world."
She loves to read the story of Ordinary Mary who changed the world, and her favorite song is Mindy Gledhill's Whole Wide World. Apparently she put the two together and does in fact have great big plans. I don't doubt her one bit...she has enough strong will and stubbornness to back any dream.
I am very happy to announce that Alice has stayed in her own bed every night for the past week. Bedtime just got easier, thanks to the Sleepy Fairy. My friend Annie gave me a great idea to leave a note (from the Sleepy Fairy) under her pillow...on the nights she goes to bed on time and stays in bed. It's amazing how motivated she is to wake up to a note. She has been collecting all her notes. We read them over and over and over. I love it!!
Wednesday, May 22
Natalie had an appointment with neurology. It was very good to visit with Dr. Bale and discuss her current seizure medication. He and I were able to thoroughly discuss Natalie's situation in detail and come together on future care and practices. We hope to transition her to a different medicine in the upcoming weeks. I was happy for the extra time he spent with us. She was terribly bored and continually reminded me of how bored she was, but we survived.
Thursday, May 23
Natalie had an appointment with ENT today. Her ears are looking better, yet still have some fluid in the inner area. She will remain on the antibiotic for another week and then we will see how she does. Hopefully she will improve, it isn't out of the question to place drain tubes again if her infections continue to reoccur.
She was less bored today because I let her take a box of fruit snacks with us to the appointment. Fruit snacks are the way to her heart.
Can't wait to make another note from the Sleepy Fairy...I'm really having a fun time with this.