Married mother of 4, 3 boys and 1 girl. We have a very active life in Nasvhille, TN. The kids are 5,6,7 and 13. The oldest son is adopted, and the one with Duchennes. He was diagnosed at age 9, 6 months after the birth of my baby. We have been living large since taking what opportunities to travel were there. Now as of this summer he is completely non-ambulatory.
Name(s) of child(ren)/individual(s) with Duchenne:
Age(s) of child(ren)/individual(s) with Duchenne:
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hey stacey my name is kimmy watters how are your son is very handsome, i happen to be a friend o f mindy colby. how is grey doing today. i have issue to with walking but i am up and out every day. kimmy watters.
We live in East Nashville. My husband has a little studio in the Nipper's Corner area. He grew up in Detroit and grew up in Madison. I went to Madison High School and UT Knoxville. Where did you go to school?
Thank you so much for your prayers. The last few weeks have been as close to Hell as I am going. We have been registering Brandon with the MDA, Duchenne Connect Registry, and talked with Ryan at PPMD, and the Make A Wish foundation. All of these are good things, but each time, the reality of DMD rears its ugly head. I have been self employed as a hardscapes contractor for 2 years, and the downturn in the economy has kept me unemployed more than working lately. This has us prayerfully considering a move to middle Tennessee. I currently have resumes in with several Ford dealers there, for a tech position. The job situation is the only thing that could make learning to live with DMD any harder. We really have not told Brandon a whole lot, mainly answered his questions. Primarily they have centered around the strength to keep up with his 6 year old brother. I don't know if there is a better way to deal with it, than as it comes, but that seems to be working so far.
In rereading your first post on our board, I noticed a question that I left unanswered. There are no issues with Nathan at all, he in fact plays a lot like Bambam from the Flintstones. Sorry for the oversight
The start of a new found friendship has brightened an otherwise blah day. There seem to be a lot of commonality so far. We have Brandons first clinic appointment set up for the beginning of February at Scottish Rite in Atlanta, as that is the closest city to Blairsville, but we have heard such good things about Vanderbilt, that we would like to try that as well. It actually only takes us on average, 4.5 hours to get to Greenbrier from our house, but next time we are up that way, it would be great to meet your family for dinner. We also (very recently, by the way) have come to the understanding that God is sovereign in ALL things,not just what my "free will" allows him to be. I am so thankful that He brought us to that understanding before Brandons diagnosis. The most sustaining thing in our lives right now, is knowing that this diagnosis surprised us, but the Lord knew it was coming, and We will use it to glorify Him any way we can. You may need to remind me of that some day, but I hope not to loose sight of it.
With as long as it took to get 2 sets of DNA test results back, I wouldn't have thought myself shockable, but you hit the nail on the head , we are shocked. Don't worry about your response time, it was fine. Yes, we are Christians, and after the past few months, it's a good thing. If not for that, I guess we would be nuts. There aren't a lot of people in the metro Blairsville area that know what we are talking about with any of this, which is what lead the search to Nashville. Our best friends live in Greenbrier, and we have talked about using the clinic at Vanderbilt, and figured if we made more friends in the area, it would make our network that much bigger. Thanks for your prayers, and accepting the request.
It was easy! We go to Childrens hospital in Seattle. My genetic counselour, Jesse Contra, ordered the test and we took my daughter to the lab at Children's and that was that. Easy as pie. Within 4 weeks we found out that, yes, she's a carrier. I would take this info back to your doctor, and start asking some questions:)
Girrll, that sounds like something that would happen to me with your bathroom story. Although it would probably end with me climbing through a window ( and getting stuck somehow)
CCI is free, it just costs getting there and some of your meals while you are there along with transportation. It really is a great program, check it out on the internet, our chapter since we live in TN is Orlando. How cool is that? We may have to make a trip to Disneyworld...you know, just to test out the dog and all.. :)
Well, sounds like you got it down to a science. I will learn from you. Yep, hubby has a smaller car, but not in that great of shape. Although he can afford to get a new car, he chooses to get older ones and fixes them up. I won't drive the darn thing because I don't trust it. He can fix anything, I break everything.. Great combo.
I am taking this all in, all the advice, stories etc are very helpful and stimulate the mind to think ahead. I am hopeful that my son will walk without his chair all of the fourth grade and I am hopefull the fifth. I know what you mean about lifting and all, I unfortunately am having some practice getting him off the floor. But as you can see, he's a skinny little guy however dead weight is just that...dead weight.
I am trying to get myself into better shape because I see no other option as his caretaker. I should have been doing this all along. Of course when cookies, ribs, etc jump out at ya, what's a person supposed to do? Well, ok, maybe not, but none the less I am doing much better!
Ok, I know just about where you live I remember that road. I looked it up, we aren't going back until April of next year. That's ok, maybe by then we will have the super dog that can drive us there and meet up. Who knows, maybe you can contact CCI and get the process started to. It really doesn't take that long. I started around November. Sent in my first application, they called, reviewed it and sent me another one. This one I was to get pictures of the house, Christian and family. I took my time sending it back because I just wasn't sure that this is what I wanted to do. They called, talked to me in length about everything and then I sent it..sometime in Feb or March. Then another call, another piece of mail and a conference call. Finally after this all we have left is a face to face interivew, but I put that off because it looked like we would get the dog this past summer, I couldn't do this because we had a trip to California planned. SOOO, now we are on the list for a interview around December, and if all goes well be in the Feb class.. PHEW, did you get all that? Really, it isn't that long of a deal, it just took me awhile.
I looked into the scooter thing, we may just end up doing what you all did and just buy it without using the MDA. I wonder if they might have a loaner scooter? hmmm, I might check into this. I doubt it, but never hurts to check.
Well, keep me posted on any new discooveries, or laughs! I always find a reason to laugh!
Thanks Stacy for commenting back. I agree, this new website has allowed me to make connections that I was not able to do before. I am glad that I found you, I think I am just a few steps behind you in all of this.
Chistian will be 11 this December, although still walking, I want to be prepared for when he isn't. I look ahead but I don't dwell on it ( if you know what I mean). I look to be prepared, but live in TODAY.
Hearing your story brings a few questions, like for instance. Just this summer we were able to get a loaner wheelchair from Vandy, but after we got it, I realized that he really doesn't have the strength to push it. We used it for our trip to California, disneyland etc. but I wonder is it time to get a scooter? or should we wait. I don't want to use up funds with the MDA and than not have it when he needs a powerchair... A scooter he can still have the indepence when we are out, and he doesn't have to rely on me so much to push him and take him where he wants to go. But the funding, I realize you have 3 years after you access this then what?
Housing, van....yikes! All that scares me. We will first have to move to a bigger home, this house is not condusive at all. We would have to knock down some walls and change the bathroom quite a bit. Van, well, just like you said with the Suburban, we have a Explorer, he has a hard time getting into it, but it's almost paid for and I don't want to get a van with lift and all before it's really time....what does one do? Get a smaller car until he needs the lift, I guess.... any words of wisdom from another warrior mom would be great!
Yeah, we loved Dr. Sharpe, was very sad to see him go, but am fine with Dr. Burnett. A little on the nerdy side, but I feel good about his ablilities. PT and all comes from our local area, we don't travel to Vandy for this. Yep, we go every six months to. Not sure when our next appointment is, but when i know, I will shoot you an email to see if you all would be around. We used to spend the weekend in Nashville and go to Opryland, Rainforest Cafe, but now that clinics are on Thursday, we just come home.
We are also in the process of going through Canine Companions for a service dog. We are in the final phase of a face to face interivew and hopefully by next summer will get a dog. Have you all done this, or thought about it?
Well, I appreciate you more than you know! I feel alone with this as no one but us that go through this understands. It helps to have people to talk to that you can learn from and lean on. Hope I haven't run you off with my " book" . I always have some kind of funny adverntureous story to tell, stay tuned because somehow I manage to have lots of interesting things happen to us!