Well hi there!I get to do a fun page this time;)
Jenna is doing very well.We got her tests back and she does not have any t-cell or b-cell function yet,so that means she will remain in isolation,but thats okay at least she is doing great thats all we care.Freedom will come later.We have had many trips to San Francisco lately and more to come.She got another hole in her line on Saturday so we were off to S.F to the emergency room to have it repaired again.I guess it is time to stop her from playing with them.The problem was since it was Saturday the clinic had already closed and no one had done a Broviac repair in the ER so they had to get the surgeon who puts the lines in to fix it.He had never repaired one before,so he was reading the instructions,(isn't that comforting?).He did fine but we think we could have done it ourselves and saved us all the stress.Then we were back Monday for a Pulmonary Function test,which they sedate her and check out how her lungs are doing and if she has chronic GVHD,we don't have those results yet.Then yesterday we were in clinic for her regular monthly checkup and to give her her IVIG transfusion,thats the one to help her fight stuff off since she doesn't have an immune system yet.
She continues to find more words her newest are
"OH WOW!and OH COOL"We bought her a Teletubbie costume for Halloween she looks so cute in it,problem is I can't get her to take it off!Oh well we won't go anywhere for Halloween anyway,she might as well have fun with it now!
Little Maddie Grace passed away at the end of September.Our hearts just ache for her family,we pray that they find the strength they need to make it through this awful time.It is so unfair,what a darling baby and she fought everyday of her short life just to be here one more day.God bless you Rocky and Heather Moore.
We have a new Hurler friend named Mitch,he lives in Australia,he had his transplant yesterday and has had some difficulties with the chemo drugs.We will be praying for Mitch and his family.His Auntie has been writing me and keeping me updated on how he is doing.I will add his page to my links.Good luck baby Mitchell!
I hope everyone is doing well!I'll try to write again soon;)No promises,I have a hard time getting on the computer for very long,Jenna thinks I need to be playing with her not typing!
Love,
Kristi,Randy,Lindsay and Jenna |
