July~20~2000
DAY+100!!!!!
Today is a wonderful day!100 days post transplant!Can you believe it?We are celebrating tonight!
Well heres what is happening...
After I last wrote Jennas lines started giving me trouble drawing blood so we ended up having to go to the city on July 3rd to have the treatment center put something called IPA in it to unclog it.Well we got there,they hooked her up and moved her around a little bit and boom it drew,so we were right back out of there.Now whenever I draw blood ,it takes us a little bit of wiggling her around and we can get it but its just not as easy as before,I guess this is pretty common.Anyway we were home in time to go out to Bodega Bay and watch the fireworks over the bay.Jenna loved it!She oooghed and ahhhed through the entire thing.It is so cool to see things through a childs eyes for the first time!
We started her steroid taper and sure enough her rash came right back,so now they have us tapering it again slower,hopefully this will help.right now her skin looks great and all of her counts have been great.
She is really back to her old self,its awesome.For quite a while here she was really nervous,she would fall asleep with one of us holding her and if we tried to put her down she would panic and scream,Now she is much more relaxed.It seems like she is starting to trust us again.She is so funny she smiles all of the time and giggles constantly.She will get between two of us and grab our heads and pull us together, making kiss noises and make us kiss,it is so funny.Lindsay decided to let her feed herself one morning so now mealtime is quite messy,she refuses to let anyone help her,but she is actually doing really well.She will grab you by the finger and pull you into her room to play with her toys,she is sooo cute!
All of this may sound like normal kid stuff,but to us its so awesome to see her being so normal, when for a while we didn't know how she would come out of all of this,we cherish every little normal thing she does.(yes even the tantrums!)I must say we have a whole new outlook on life and we have all learned alot from our experiences in the last months.Lindsay and Jenna have done alot of major bonding in the last few months also.They have so much fun with each other!When Lindsay leaves the house,Jenna flips out.The fair starts Sunday so Lindsay will be gone for a few days with her market lambs,Jenna will probably be lost,I can't imagine what she will do when school starts?Hopefully she will do so well that she will be off isolation soon and it won't be so bad.
Well at clinic yesterday they took alot of blood for an engraftment study,to make sure she is still engrafted with the donor marrow and to check her t-cells and b-cells and to check her enzyme level.The t-cells are the ones that will tell wether or not she has enough immunities to fight off bugs and infections,they don't expect those to be back yet because she is still on prednisone and that will supress it but they will check anyway.Please help us pray that Jennas engraftment study comes back 100% donor still and that she has a normal enzyme level !We will be walking on pins and needles for the next week waiting for those to come back.
We saw Shawna and Romie yesterday,the baby wasn't there because they had IVIG and that takes hours,but they both look great.Romie is eating!He looks fantastic and is doing very well.Shawna looks great too!She had a baby 3 weeks ago and you'd never know by looking at her!Some people! ;)
Well I will update the second we hear anything about the engraftment study,I promise!
Please remember Jenna in your prayers!Take care!
Love,
Kristi,Randy,Lindsay & of course Miss Jenna Bean