Andrew's Web Page

Welcome to Andrew's Web Page.
It has been provided to keep people updated about Drew and his progress- from his diagnosis of Hurler's Syndrome in May 2001, to the bone marrow transplant in August 2001, to post transplant recovery.

Hurlers Syndrome caused Andrew's body to lack an essential enzyme needed to break up mucoploysaccharides (sugar molecules). Without the enzyme, these sugar molecules would start building up in his body leading to severe damage to the brain, heart, liver,spleen and bones. This build up would eventually cause death.

Through his Bone Marrow Transplant, his body is now able to produce the missing enzyme, stop the progression of his disease, and even reverse some of the damage. Thanks to all for reading the updates and sharing your thoughts in the guestbook.

Journal

Tuesday, June 30, 2009 6:11 PM CDT

~~~~All New Pictures of our new baseball star!!~~~~~~~~~~~~~~~~~~

A lot is going on in our family right now and I am personally feeling a little overwhelmed by trying to organize it all. Andrew's knee surgery is scheduled for July 22 at Sinai Hospital in Balt. We have both a pre-op scheduled with his family dr and a consult with the anesthesiologist there. Since Andrew needs to grow to have this operation work, Dr K has finally decided that Drew needs to see a pediatric endocrinologist to see if growth hormones would be of use to him. I have contacted one and am in the process of having the information they want, sent to them. There will probably be lab work and x-rays to be done before the appointment is arranged- I swear he is going to glow in the dark!

Hannah is due to have her braces tightened tomorrow. She did very well getting them on and dealing with the days of adjustment following that. She did go through quit a bit of pudding, soup, mashed potatoes and jello. She is due to have 4 teeth taken out in Aug. I still have to schedule that appointment and a consultation before hand. AHHHHH

Before all the fun starts, we are heading to Pittsburgh for a vacation. What is in Pittsburgh you may ask, well lots of fun things, including and zoo/aquarium, the incline, several museums and someone else to cook the meals and clean-up afterwards! LOL

Now for the best thing that has happen around here lately...Andrew has been bugging us to let him play baseball for ages. Baseball is very competitive in this area, so we didn't think a regular little league would be a good fit. We finally found a challenger team and went to just check it out one Sat. By the bottom of the first (they only play 2 innings) they had him on a team and let him hit and play the outfield. The teams had fought over who would get him and everyone cheers wildly for him, as they do for all the kids. He smacked the ball his first time up and wowed everyone. He is in his glory. Thur was his second game. Our friends came to watch him and his new team already had a hat and jersey for him!! This Sat, his wonderful friend Hailey and her entire family came to watch his game, as did my parents. It is so incredible that we are surrounded by so many wonderful and loving people!! Sun. was the league picnic and Andrew got a super new backpack for being a rookie and all the kids got great shirts celebrating the Challenger league's 20th year. Like I said, the games are two innings, everyone plays the outfield with a "buddy", usually a parent but on Thur. game there were little leaguers to help out (see photo page), everyone gets a hit, everyone scores, no one gets out and everyone is a super star! It is a wonderful organization run by beautiful and loving people.

We also had the wonderful opportunity to spend the day with Matthew Sackett (7yr old with Hurlers and fellow Duke comrade) and his family-mom Peggy, sister Tori and twin brother Sean. The kids had a great time playing their wii, riding a jeep and playing ball. Peggy and I did what moms do best-talk about our kids! (See picture above)

I will keep everyone updated as soon as the surgery is over and recovery is started.

Enjoy your summer!!

Love, Anne

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Hospital Information:

Home!
102 Grove Ln.
Boonsboro, Md, 21713
301-432-5745

Links:

E-mail Author: arhimes@msn.com

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