Austin's Page

Welcome to Austin's Page!

Austin was diagnosed with Hurler Syndrome (MPS 1H) on 4-19-00.
He had an unrelated cord blood/stem cell transplant at Duke University Medical Center in Durham, N.C. on June 27, 2001.
We started our journey to Durham on April 13, 2001
and returned home (finally) on October 16, 2001 !
Thank you so much for checking in on, and praying for, our little "miracle". He has a way of capturing many hearts!!!

Journal

Friday, June 12, 2009 8:22 AM CDT

HELLO EVERYONE!!!

I know I know, I havent updated since last year!!!

Everything is going good, and now that I am obsessed with facebook I have all my pics up there, soooooo if you are reading this you should get a facebook page and send me a friend request and then we can keep in touch better !

Well, everything is going ok with Austin, he was diagnosed with Glaucoma earlier this year and at first his headaches seemed to subside so we thought maybe it was the severly high pressure in his eyes that were causing the migraines (which still may be true) he has been on the eyedrops for a few months and going to the dr every 2 months to check on the pressure, last month he started getting his migraines again and they are worse than ever before.

he has missed at least one or two days of school a week in the past 2months due to the migraines and vomitting, he goes to see the eye dr today so hopefully we will find out if these drops arent working anymore or if his pressure has rised (which i am hoping that is the case so at least we will know the "possible" reason for the vicious return of these headaches. Then tuesday he goes back to see the nuerologist about his headaches, they put him back on another medication that he takes at nightime to try to keep these headaches away and he takes the zomig when he gets a headache, but really the zomig shouldnt be used more than about 3 times per month and he is using it like 5-10 times per month so that isnt good, keep the prayers coming that these headaches go away please.

Austin will also be attending summer school this year for math, he is really struggling with it and I just dont know what we are going to do, he is supposed to be entering 5th grade in september and he wont make it if he keeps up the way he is going, hopefully with the summer school help he will understand it more since it will be less children maybe that will help???? I just dont know what the problem is and its very frustrating trying to get him to understand when I dont even know half of it! Geez how math has changed over the years! ha ha

Andy was recently (and finally) diagnosed with asthma last month, after the past year of feeling like a nut saying he has it and the drs telling me no, they finally agree with me, so now he sees the pulmonary at st chris hospital (where Austin frequents every other department) the pulmonary dr is great so far, me and Andy really like him, he has been on the nebulizer since Austins' birthday 2 weeks ago and today is stop doing the albuterol 3 times a day and just do the pulmicort once a day, he goes back to 3 times with the albuteral if he seems to be having any problems, and it has been sooo damp and humid this week so i am hoping he does ok this weekend!

Last saturday we went to sesame place, it was lots of fun,
Andy is so scared of the characters though! Austin used to love them but Andy wants NOTHING to do with them! He waves at a distance but when we got close up for pictures he started shaking and screaming and gripping onto me for dear life! Hopefully he will outgrow that! He loved the water though, him and Austin are so different its amazing, Austin didnt like the water till he was older and Andy loves being in the water, he will be my little fish!

Looking forward to August to our duke trip, I havennt been there in 2 years so we are looking forward to seeing everyone and Austin is so excited to show off his little brother to everyone!

Well, must get back to work,

hope to update soon!

love you all,
Carolyn, Austin and Andy

Hospital Information:

not for us anymore.. we are home!!!
9465 B ashton rd
philadelphia, PA
215-464-1454

Links:

E-mail Author: tweet84675@verizon.net

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