day294

Well hi there!I just got a call from my sister in law telling me it is time to update or else!So I decided I had better get to it while Jenna is sleeping.
We went to Shriners on the 16th and needless to say we both walked out of there not too impressed.Shriners was beautiful,very organized and nice but we didn't like the doctors at all.They basically told us that they didn't know how to treat a post transplant Hurlers child,that they had only seen Hurlers children that werent expected to live a long life and that they usually treated them enough to keep them comfortable while they were here.Well thats how the conversation started and then they proceeded to tell us that no doctor knew how to treat this situation which we knew was totally inaccurate.They decided to measure her for a back brace and for us to come back when it was ready,well we let them measure but we have no plans of going back.We barely had the words out explaining our visit to Dr.Cowan,the head of BMT at UCSF and he agreed and was completely angry about the way we were treated.The thing he can't figure out and neither can we, is why we were sent there in the first place,no one seems to know??????Well now we are going to see Orthopedics at UC and see what they think,if we aren't comfortable with that we will look into taking her to Minnesota where they have seen many post transplant Hurler patients in Orthopedics.Ugh!
We also had Jennas clinic appointment last week and IVIG,which we werent looking forward too since she no longer has her easy access Broviac.It actually went really well.They had no problems starting her IV and she tollerated it fairly well.Thank Goodness!
After Dr.Cowan finished examining Jenna he very reluctantly told us that Jennas liver values were elevated the last blood draw and that they were rechecking them that day,well after a sleepless night for Mom they called and said that they were back to normal.
They supposedly sent t-cell b-cell function the last time while we were in over Christmas but I guess not,nobody could find those results so they were drawn again at clinic last week and we should know how Jennas immune system is doing by next week.
Jenna is now off of the Cyclosporine!!Yeah!!This is the drug that has been suppressing her immune system.She also came off of a couple other drugs as well.Now she only takes 3-4 a day!!
Our little baby girl has also turned 2 since I last updated!!We had an extremely quiet little party with Papa Larry and Gramma Keeta.Jenna had a great time ripping into her presents and eating her blues clues cake!
We have never felt so lucky!We are so thankful that she is still here to celebrate her birthday with us.
Well I hope I covered everything!
We hope you are all well!Happy Birthday to Romie Perkins and Lucas Knies who also just turned 2!!!!YEAH!!!!We know their mommy's and daddys are feeling just as lucky as we are!
Take care,
Love,
Kristi,Randy,Lindsay & of course
The Jenna bean!