I am back after a little "rest" time with Chad and Linley...although my eldest thought that 7:15am was a reasonable time to waken the world. She must not have gotten the memo that Mommy and Daddy are oh so tired. At least she doesnt seem to have an idea how frightening and tiring all of this is. We had a great time with her yesterday! I have been a stay at home mom for all of her life and yet I dont think I have ever enjoyed a day with her so much. Everything seems so much more precious. I was able to be a substitute teacher for her class, which she thought was oh so cool. And then she and I and Chad went out for lunch and ran some errands then ended up at the soccer fields while Daddy worked and Linley and I played, walked and explored. A good time was had by all.
When I got back to the hospital this morning Piper was happy and well cared for. My mom just has a wonderful knack for caring for children...whether they are 11 weeks old or 28 years old. We spent the day here playing with Linley (thank you to the Quint family and Aunt Paula for some amazing crafts for her!) and kissing on Piper...every once in a while we would swith it up a bit and kiss on Linley and play with Piper.
The nurse put a catheter in Piper until Monday. The new meds she began today make urine very acidic and can easily cause diaper rash. This gives us a nice little break from the 10lb wet diapers she has been having! She wasnt too fazed by it and has slept though the chemo this evening...it is all through the IV but still impressive. Piper is eating like crazy...as much as 30 oz in a 24 hr period....shes going to be my chunky monkey for sure.
We got a visit from the nurse practioner named Lois. She told us how impressed she was with Pipers progress and demeanor. Apparently she is doing just as desired and better than expected. We did get the results back about the MLL gene and Pipers are re-arranged...but when Lois told me this and my face fell she rushed to encourage me. (And if I have said it once I have said it a thousand times...these Drs and Nurses are not big on fancy encouragement, just alot of statistics and such.) She said that Pipers wonderful health is more promising than anything right now. So keep praying that her little body stays free from infection and that chemo can continue to do the work it is intended.
Some people have asked about visiting and I wanted to say that I am totally fine with that. Of course, you cannot be sick and no children are allowed...otherwise it would be great. Just let us know before you come down ok?