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Tracy 47, Female Cooperstown, PA United States: Favorite

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Problems with Quantum Electric Wheelchair

Started this discussion. Last reply by David Jun 2, 2011. 2 Replies 0 Favorites

A helpful website

Started this discussion. Last reply by MommaToo Jan 20, 2009. 2 Replies 0 Favorites

Why Dr. Wong?

Started this discussion. Last reply by Char Burke Jan 21, 2009. 7 Replies 0 Favorites

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About me:: I'm blessed to be able to be a stay at home mom. I did homeschool my 3 kids for the past 3 years but have recently put them back into public school. I really needed a break with Tyler only having been in his wheelchair the past year and a half. When I went to the school to do his IEP I was so very impressed on how caring they were and the therapists that will be his advocates are incredible. I felt I needed to put him back to school because socially he was becoming an introvert, content to just stay inside and play video games all day.

I also am very involved with my church. God is my life! I couldn't travel this road without him. I am the Youth Leader in my church and I really love it. I feel strongly that I need an identity outside of being mom and caretaker, they are only part of who I am.

I am a carrier of DMD. My brother died back in 1994 when he was 17. I was 3 years older than him and he was my only sibling. I wish I had more brothers and/or sisters but my husband looks at the bright side, we don't have to share inheritance, ha, ha.

About my family:: I have been married to my husband Charley for 17 years now!! We have 3 great kids: Cody is 17, Tyler who has DMD is 15, & their sister Tatum is 10.

Cody is very caring and protective of Tyler, they have a special bond. We chanced having another to have Tatum, I wanted Cody to have another sibling (I did not) to go through the things our families go through. I have a unique bond with Cody since I can relate to him so well. We are both the oldest to watch their younger brother deal with Duchenne and we are of similar personalities. Tatum is a true blessing. She's my cuddler and lover and always has something uplifting to say to people.

I have a supportive family whom I cannot say enough about. We just love each other and take one day at a time.

Name(s) of child(ren)/individual(s) with Duchenne:: Tyler

City:: Cooperstown

State:: PA

He's My Son by Mark Shultz

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Starting own business

Posted on January 27, 2009 at 11:08am 3 Comments 0 Favorites

For a few years now I have been wanting to get Tyler a service or companion dog. There are 2 problems I came across. One I am allergic to dogs (besides your typical hypoallergenic). So I thought I'd look into a Standard Poodle. Well it is very hard to find a non-profit that train them. Some want you to purchase the poodle yourself then you would have to pay for the training. Well, that was getting into a lot of money the poodles themselves are between $1000-2000!! So I hit a wall and swept it… Continue

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At 9:24pm on November 10, 2009, Janine said…: Hey, how about that nice leap that Ward made to score the touchdown in the final minutes!

At 9:39am on May 11, 2009, Jacobs Mommom said…: Hi Tracy:

I see you live in Cooperstown (though I'm not sure which one). Would you be able to join the PA familes in this area to help with the fundraiser in October? We will need people to man the ticket table and the games.

If so please email me at donna@donnadoolittle.com so I can put you on the mailing list.

At 7:37am on January 31, 2009, Janine said…: Can you believe I am working Sunday during the Super Bowl. I tried to switch my schedule around yesterday but couldn't.

Janine

At 10:09am on January 27, 2009, Dina said…: Tracy,
I just wanted to let you know that I still am not sure about seeing Dr. Wong. I recently spoke to a 31 yr old with Duchenne. I asked him what he thought about going to Cincinatti and did he ever see Dr. Wong. He said he did hear of her but sees Dr. Finkel at CHOP in phila. He still gets great care! I was very excited that he is doing well. So I am still thinking about it. The group I see at DuPont seem to know what is going on. When we first found out our son had this disease they quickly put him on steroids and he had all the tests that everyone seems to say Dr. Wong does. I feel so confused! Well I just wanted to let you know what I was feeling. I don't know if this really helps you?

At 8:39am on January 21, 2009, Dina said…: Tracy,
I am seriously thinking about getting an appt with Dr. Wong. It would take me 101/2 hrs to get there. It looks like you can stay at the Ronald McDonald house too. Let me know what you think?

At 1:28pm on January 19, 2009, Kari said…: Thank you for your prayers. You are so sweet and kind and I appreciate your advice on the IEP.

At 11:47pm on January 18, 2009, Janine said…: Yes, we are fans. Just got done watching the game. We live in Columbus Ohio but I grew up in Pgh, rest of my family still there. Good game huh. Can't wait till the Super Bowl, yeee haaa.

Janine

At 11:38am on January 18, 2009, Janine said…: Tracy,
Your family going to be watching the game tonight?

Janine

At 10:38am on January 18, 2009, Kari said…: Hi Tracy,

Thanks for checking. Yes, the responses did help very much. I just found out from Jared this morning that Josh from the School District came and did his physical assessment this past week. So, the next step will be the IEP meeting. From my understanding, goals should be flexibility and keeping Jared walking as long as possible. I am curious to see what Josh will say. By the way, I don't know if I told you this before, but what a lovely family you have.
Kari

At 9:06pm on January 11, 2009, Beth Kilgore said…: Hi, Tracy,
Don't know if you remember me, but we had e-mailed for awhile a few years ago. I also had a brother with Duchenne. I was looking at the posts in the Carriers group, and I thought of you and wondered if you were on PPMD Community. I remembered your first name and that you lived in PA, so I did a search on the site, and there you were! I'm glad to know that you found this site--it has been such a blessing to me. I hope it is to you, too!
Beth from CA