Thursday, April 7, 2011


A lot has happened since my handy dandy bullet point essay. Piper is thriving and doing wonderfully with the therapies. Each day she has between 3 and 4 hours of different therapies to work on different aspects of her development and it wears her out but she is rocking it. We met on Wednesday to talk more in depth with all her therapists about goals, discharge plans, etc and I was very happy to hear them sing her praises. Her specialist also have many good things to report.

Frankly, before her stay we get a lot of "wow, she sure has some lungs" and "she sure is pretty" which in essence to me that means my kid is really loud and thankfully, pretty. Both true but not always what you want people to notice standing in line at Target. The therapists however are impressed with her small motor skills and her communication skills which is basically signing plus a few choice words and well intentioned grunting and pointing. She is doing well with her new leg braces and is often pointing to the couch where she stands and looks out the window. Her hips are still frog legging instead of putting her in a postition to crawl but she is trying and she is able to get from a sitting position to a crawling one and vice versa and is improving daily on rolling over on her own. Mostly, she finally has the desire to play and explore and move, and she has had so little of that since November that it is pure joy to see her do what she is doing. The rest will come, I am confident.

Piper has had a skin prick test and a 48 hour patch test to check for soy and milk allergies, both which came back negative. She is doing well drinking her elecare and on Monday they chose to stop her TPN because she was getting enough calories from that...for some reason she lost half a pound yesterday so they will continue to watch her weight and if it happens often she will be back on TPN. Her "gut rest" is being modified as she attempts different food and tolerates them well. Piper is now allowed to eat fruits, veggies, chicken and potatos. And she is loving that! Her bowel movements while still loose, are still free from mucous and blood and are only 2 or 3 a day versus up to twenty. I even got wild and have begun putting her in one diaper at a time instead of the two that we have become accumstomed to. Nice.

When we were moved from the Aflac floor to the Rehab floor, Pipers CMV levels had dropped to 1800 and the infectious disease guys were content with that and chose to stop the antibiotic. Unfortunatley the blood work from Tuesday came back today and they have risen again to 10,000. She had her urine tested to ensure them she was not growing a resistence to the Cytovene and while they wait they went ahead and restarted it up again, once daily. The next step up as far as antivirals to treat the CMV has the potential to be signifigantly more harmful to her organs. Not so nice.

We will be going home on Wednesday the 13th.

If you are the praying sort please pray for this CMV. It is such a monster and I am so overwhelmed at how it is affecting so many things. Piper still is in treatment to battle the even bigger monster that is leukemia but unfortunatly the two monsters are not very compatible and are not helping the other out in the least bit.


  1. Praying that the darned CMV levels bottom asap. Its goof to know u r going home soon. Aadita has been imitating Piper's "ta-ta" eversince we left rehab yesterday :)

  2. I'm glad at least some things are improving! I will keep praying for those CMV levels to drop, and that it goes away. She's was so happy when I saw her and I hope she's staying that way and that she's enjoying her duck! :)

  3. We will be praying for the CMV levels to completely drop out of existence!