Day +48

Today we woke did our morning meds and unhooked from the TPN (IV nutrition, because she is still not eating) got dressed and headed out the door to be to clinic for about 9. We did our blood work and went into a room to see the doctor. She did a quick exam asked a bunch of questions and that was it. She said she would like us to come in really quick tomorrow for a CBC since they do not have clinic on weekends any more. She said she would go ahead and order some red cells just in case her hgb drops a bit, I think it was 8.2 and she just didn't want her to go until Monday morning if her hgb was going to drop. We were in and out of clinic in a flash today. Then we came back to the RMH to chaos, they were getting all new beds so all the old beds needed to be stripped and taken apart an the new ones had to be delivered and set up...
Amelia is doing fairly well, other than she doesn't want to eat very much. They are going to stop her lipids over the weekend (Fats and protein) to see if that will help her get hungry. She still hasn't found much that she likes to eat. I think tomorrow or Saturday we will go and get her a cheese burger from McDonald's with out Mustard and Ketchup, those burn her mouth. We tried Taco's from taco bell...I am at a loss at things to try. She did drink about 4 or 5 ounces of a caramel frappy this morning. Her counts look great: WBC 6.8 ANC (I think 5.?)HGB 8.2 and platelets were 33.
She still has hemorrhagic cystitis which has it's good days and bad days..some days she has a lot of clots and bleeding and some days she is not that bad. Please pray that this goes away soon!
Well I have to go and get her ready for bed, she is staying awake more and more each day, today she has been up since 8:30 this morning and I think she may have had about a half hour nap all day. She was in a great mood today giggling with us and making jokes!!! That's the way I love to see her!!
Thanks for checking in on us and keeping us in your daily prayers they do mean a lot to us!!
Blessings,
Kelly