DAY+
22
May~3~2000
Well pretty much same same!Which is great!This little girl is amazing!She has had a great day!She is not quite so mean.We decided that if you just don't tick her off she's fine,(kinda like her mom)..;)
Her rash comes and go's, just the same.I think it is pretty much alway's there it just flares up a little worse at time's.Her stool samples are looking fine ,no sign of infection,and her diarreah is basically gone.This mean's that if it goes away they won't have to do a gi scope.we hope so.her blood pressure is still way out of hand,they are trying everything!
We might get the result's of the engraftment study by Friday,hope so!If everything look's good and she is engrafted they will give her a steroid to fight the GVHD that will be given at 1-5-7-14-21 day's.They said they will keep her here through the 7 day dose but that she can come back to the clinic for the 14 and 21 day doses.That would mean going home in the next week or two.She will still have to come in alot to the Clinic,but at least she'd be out!
I took some pictures of her coloring today,it was sooo cute she was such a big girl!I got her Teletubbie coloring book and crayon's and she flopped down onto her tummy and started coloring.She seemed much older than she is.After a while when she decided to start coloring on the blanket and wall's I took her crayon's from her so she bopped me right in the eye,well while I was trying to compose myself and see again, my sympathetic little angel baby,decided it would be a great opportunity to pry my finger's open and retrieve her crayons!!Oh she is so much like her daddy!!...;)
I talked online to a family in Sweden who have a 15 month old baby named Lucas who was diagnosed with Hurler's just 3 week's ago.They are going through the heart wrenching stages of trying to decide wether or not to do a bone marrow transplant.They have alot of big decisions to make in the near future,we really feel for them,this will be the hardest time of their lives.Word's can't describe the way they are feeling right now.Please put little Lucas in your prayer's with Jenna,he is definitely in ours!
Well I think that covers it! I hope you all had a great day!
Thank's for everything!
Love,
Randy,Kristi & Jenna
Is this cute or what?