September~28th~2000
DAY+
170
Hi there!I can't believe I am doing two updates in one month!
We had Jennas 6 month appointment yesterday.They drew blood for some immunities studies.We should know soon if Jenna is starting to build up immunities.Hopefully so and we will be on the track to getting her out of isolation.The doctors are very pleased with how she is doing.They say she is doing so well we can start focusing on her other bone and speech problems now.They are sending us to Shriners in Sacramento to have an orthapedist there look at the curve in her back and evaluate her all over bone structure.As most of you know Hurlers patients usually require surgery to correct bone problems.The new enzyme she has cannot easily penetrate the bone so she still has some problems in that area.Next month they will see Jenna to check out her eyes again and her pulmonary function.We are also setting up physical and speech therapy.She talks alot but we think it is delayed because of all the months she went along without being able to hear.So we will see how this all works out.
Jenna is becoming quite the character,since the olympics started she has been pulling her Broviac lines up and talking into them like a microphone and she will come up to you and put them up to your mouth so that you may say a few words also,it is quite funny.She copies everything!We are now calling her our 'SUPERSTAR"
The local paper in Petaluma did an article on Jenna and had a photographer come out to take her picture,of course this is when she decided to show them exactally what an almost 2 year old can do,or better yet can refuse to do!She was a complete Turkey!That's our girl!
We really want to ask everyone to say a prayer for a little doll named Maddie Grace,she has had her 2nd transplant and was doing well except for some fever and they did a minor biopsy on her lip to see if the fevers were caused by GVHD and now she is in Pediatric Intensive Care,fighting for her life.Just one week before we were looking at her happy little face on her update that her devoted parents wrote and now they are absoloutely terrified for their babies life.
Another friend we have made online is Adam Benak,whose son Kade just went through a mini transplant in Salt Lake City.This is the first child we have heard of to be treated with a mini-transplant for Hurlers.From what I understand it is less risky.Kade could be paving the way for a safer transplant for Hurlers in the future.He is around 11 days post transplant and Adam says you can't tell he's been through anything.Go Kade!!We pray that he comes back 100% engraftment!
Well I hope I didn't forget anything....Oh yeah,there is one more thing,we found out that Jenna has a normal enzyme level,apparently the last test left the doctors unsure,so they repeated it and Thank the Lord it is NORMAL!!!This is of course the enzyme she was born without,now she has the normal level she needs!Yahooo!!
Love,
Kristi,Randy,Lindsay & Jenna
