Wednesday, February 17, 2010
Today was a great day for Avery. Her counts were at 3300 and she must have been feeling wonderful because she was happy as a lark all day. She worked really hard in therapy today and spent a good portion of the day attempting to get into things she shouldn't! She even got a real bath for the first time in almost 2 weeks.
We've discovered that she absolutely loves grilled cheese (Megan Rank...she might be your twin) and will eat it at every meal if we let her. She wants to get her hands on the computer more than anything, but mostly when we are using Skype to talk to Aunt Nikki & Harper or Daddy. The nurses finally told me tonight that they can hear her giggling on the other side of the hospital wing and it just cracks them all up. (keep in mind we've been in Memphis for almost a month and she's spent 3 of those weeks in the hospital) And yes, she was wide awake at 10 pm giggling as loud as possible. She loves peekaboo and the 'mommy eats my feet' game. Those just get her rolling.
The plan is that she'll finish her antibiotics tomorrow(thurs)and be discharged in the evening. We are still on Isolation so they will let us leave the hospital but will put us in an isolation room in the Grizzly House on campus or in an isolation unit at the Target House. Basically they don't want us to get the other immunodeficient kiddos sick. I can take her to Target though and let all the "normal people" get it all the want!! HA -- just kidding...she's not contagious per say. Hopefully we'll get a few days out before we come back in on Sunday to start round two -- yes, it's been 28 days and we are now ready to start the cycle over. Day 1-4 are inpatient chemo and day 8-12 are inpatient chemo. The rest is out patient but after day 15 is when her counts drop again and the risk for infection increases. (that is what happened this time and why we are in the hospital and have been for 11 days) Avery did well with the Chemo part, it's the other random stuff that has gotten her -- the stomach bug, the UTI, the C Diff, the andovirus, the line infection. Cross your fingers this round goes a little smoother for her!
She is finally losing her hair...I cried when I saw the little strands on her pillow. Not sure why, she's been practically bald the last 12 months so it won't really be a big change for us. For some reason seeing that seemed to solidify for me what we are actually doing. Some days it feels like we are simply on some random new adventure where she isn't feeling so hot....and then other days the reality hits me and I am forced to deal with the fact that my daughter has cancer and that our lives will never be the same. Yesterday was one of those days. I'm ok with new and unknown....change is a challenge for me, but my bald daughter is losing the little bit of hair she has and I just lose it. Go figure. I just keep telling myself (and Jeremy) that I have complete justification for my collection of hats, bows and headbands that I have spent a small fortune on. And now for my new hobby, hat knitting.
I also keep thinking when we get back to KC and she goes back to daycare, Riley is going to be so ticked at how many new hats and headbands Avery has on her head everyday! (Riley is 4 and hates all hair accessories and no matter what I put on Avery each day, she would promptly remove it each morning and roll her eyes at me. God it made me laugh. Poor Jeanne would put it back on every afternoon before I arrived to pick Avery up.) This really makes me giggle....
Cross your fingers all goes as planned tomorrow! I could really use a night in a bed...
Posted by Jeremy, Jenn and Avery at 10:53 PM