day392

Hi once again!I guess I am falling behind on updates again.Well where do I start???
Since I last wrote we have gotten the results of Jennas 1 year post transplant engraftment studies and she is still 100% donor cells.She now has a normal enzyme level,which most of you know is the enzyme that she was missing .Science is an amazing thing!The more I sit and think about what they accomplished with this transplant the more amazed I become.We feel so incredibly blessed to have gotten Jenna this far and in this great of shape.A year ago it was more than we could have hoped for.
Two weeks ago Jenna started running a fever so we of course had to take her to the Emergency room and have blood cultures taken,which for some reason they had to do both arms this time.Then after we had gotten her settled back down and smiling again they send two nurses in both with a nice long needle and each poke her in a leg.It was awful.It is fabulous that she no longer has her central line to deal with but when it comes to stuff like this,it is awful!For some reason this all upset me more than most everything else.She is also getting older now and she says things like noooooo and owwwwie.It is very hard to hear your baby in pain.Well after all of that they sent us home and said they thought it was viral but that we should watch it closely and keep in close contact with UCSF,so we did but the fever lasted almost 1 week and it was nerve wracking!She has been so healthy it is just scary when something goes wrong,I need to learn how to relax and accept that even healthy kids get sick!The good news is that her cultures never grew anything and her fevers stopped and her body fought off whatever was bugging her!
Yesterday we went and picked up Jennas new back brace which was custom made from a body cast they made of her a few weeks ago.The Orthopedic doctor wanted a very soft brace for Jenna so the people got creative and made a brace just to fit Jennas needs and it really is not too bad.She doesn't seem to mind it at all when it is on.She only has to wear it 4 hours a day,5 days a week, so I think she will manage just fine with it.
On the personality side she is cracking us up daily.She has now decided that Lindsay is someone she is supposed to fight with.Having 10 years age difference we didn't anticipate much sibiling rivalry.Jenna will decide that Lindsay should not look at her and when she does Jenna screams at her NOOOOOO until she looks away,she will not let Lindsay dress her or change her diaper,or even hand her a cup of milk.Lindsay is a good sport about it and just laughs at her,its quite funny.We think she needs someone smaller than her to boss around.She is very bossy!This is only when she is in her moods,the rest of the time she is miss lovey, smiley girl.
Well I think that is the most of whats been going on!We hope you are all well and thank you for checking up on our girl;)
Lots of love,
Kristi,Randy,Lindsay & Miss Jenna