Kallie A McGuire
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Kallie & her twin Maddie were born 9/20/05. Kallie was diagnosed on 5/22/06 with a rare genetic disease called Hurlers syndrome. She received a cord blood transplant on 8/17/06. Read her journal to get updates on her fight against Hurlers.

Donations can be sent to:Whitney National Bank Attn:Lori Connors Kallie McGuire Benefit Account

5200 Mounes St. Harahan, La. 70123

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  WEDNESDAY, NOVEMBER 26, 2008 03:22 PM, CST
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Hello all. Things have been going good . The kids had a great Halloween, we went to a friends house for a block party. The twins were LSU cheerleaders & Donovan was a storm trooper from Star Wars. I think we will have candy through easter with how much they got.

Kallie had a clinic visit & everything looks good. They did a level on her thyroid & we are still awaiting those results. I am sure things are the same & she will just stay on her medication. We are in the process of getting her checked out for her attention level as well as being so easily distracted & not being able to sit still. It is not an easy process to say the least. She has to see doctors & then the doctors have to get with her teachers & her therapist to see how she acts in all different surroundings. She still shows no interest in TV or will not sit & let you read to her. We know she is behind but at the age level they have her at, she should be doing these things. It is almost like her body & mind have to be constantly moving. She is non-stop. She is doing great with her speech therapy & is really talking a lot. She is going to start her adaptive physical education next week.

Donovan finished football last weekend. He really enjoyed playing & he says he wants to do it again next year. He wants to start Karate now, so Jeff took him last night to see if wanted to sign up. He does want to do it & will start next Tuesday. He & the girls are off of school this whole week.

Maddie is doing good. She is also doing well in speech & we are starting to understand her better. I even notice sometimes when she trys to tell me something & I don't understand it she will try & pronounce it out. Maddie is going through her terrible 2's now even though she is 3. She is definitely a Drama Queen. Both girls can be very feisty & you can image the drama when it is doubled.

Carly finished obediance training. She did real well. She still is full of puppy though, so she wants to play most of the time. We are just so used to our older dogs that having a puppy around is taking some getiing used to again. She is a sweet dog though & the kids love her. Donovan loves to wrestle with her.

What a difference a year makes. This time last year we were still having to be cautious about where Kallie could go or who could visit us because her immune system was not normal. Now for us life is pretty much back to normal , I should say as normal as can be. Hurlers has changed our lives forever & will always be a part of our life, we have just adapted to it. Kallie goes to clinic once a month now. She is exceeding anyone's expectations & we are just so blessed & thankful.

Wishing you all a wonderful Thanksgiving.

God Bless & Love,

Janine

Angels & God watch over our Kallie girl !!!!!!

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EMAIL AUTHOR
janinemcguire@cox.net

HOSPITAL INFORMATION
Duke Pediatric BMT Program
2400 Pratt St.
Suite 1400
Durham, NC 27710
United States
 
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