We are doing good here, things have calmed down a bit after the twin situation and my pregnancy is going better than they thought it might, thank goodness. I'm sorry you have been emotional time latey!!! Maybe we can meet here in the next couple of weeks. Next week I have the kids in a Vacation Bible School all week. I would love to meet you the week after if you can swing it. I know you are pretty North and I am South, maybe we can plan to meet at a Park in between with the kids. It's been so great talking with you via email, it's like I already know you.
Wow, that is awesome that you guys raised $1900, that's amazing. It's really going to take all of us doing these fundraisers to get all the funds we need to help our little guys. The Kohl's/Walmart fundraiser is August 30th. I haven't recieved them yet, but I got the UW to donate two football tickets and a signed team football so we can sell raffle tickets. I also have a signed football from the Seahawks, of course I can't remember the player right now, but we can auction that off too. We are just setting up outside Walmart selling the tickets. Kohl's will automatically give us $500 to PPMD, the rest we will make selling the tickets.
Let me know if you have some free time the week of the 27th and I'd love to meet with you. I do have a Dr. appointment on that Thursday other than that I'm open.
I will definately get you the information. You might not have know but I was pregnant, due on 8/28.I delivered my son on 7/8/09 due to preeclampsia, so it has been really crazy around here. Once things settle, and our little peanut is out of the hospital I will get you all the good stuff.
Hello Melissa, I am so sorry to hear about Wyatt's diagnosis, but glad you found PPMD. My son Nicholas' best friend is Wyatt who has BMD. We are fortunate they are only 5 months apart and live very close. Nicholas was also delayed in walking and just about everything before walking . He was in PT at 8months old. We did not get a diagnosis until just before 4 yrs old. He is doing very well today we just came back from Cinci last week. We are so pleased with Cinci Childrens. Please feel free to call me 281-213-3199.
Hello Melissa! Thanks for adding me as a friend...it was a great reminder that my page needed some updating and I was happy to hear from you guys! Let Tom know I am also working on getting more racers for next years Rock-n-Roll! Keep in touch! Jenny
Thanks, Melissa, for the advice. I'll probably check out some of the hotels in Blue Ash. Will also look at flying into Columbus. I think for this first trip, we may be able to compile frequent flier miles and only pay for one ticket. We are going to get there the afternoon before and fly out on Friday, but we could do a later afternoon flight home to give us some time to have a little fun! The experience with Cinci is already positive--have already talked to Wendy several times and the clinical concierge. What a great operation they have!
Austin is doing good. He is still walking and does fairly well. He turned 12 in March. We have been going to Dr. Wong since February of 2006. The DMD doctors in Memphis just wasn't up to date on anything. So we looked on the computer about Parent PRoject Muscular Dystrophy and emailed them and Pat Furlong called my husband personally and set us up with Dr. Wong.
HI Melissa, my Wyatt was also diagnosed early. NOt as early as yours though. Wyatt was diagnosed at 15 months. I can't believe it has almost been 2 years since diagnosis. It has really flown by, unfortunately. When he tells me he wants to be a big boy and grow up, I tell him I want him to stay the way he is right now, dreading the future. We saw Dr. Wong, a year after diagnosis. She gave us some things to do with him instead of the wait and see like the other docs had told us. We got Wyatt in DAFO's and started daily stretching. We also started him on CoQ10 and Vitamin D. (He was 2 though when all this started). In a way the early diagnosis, is a loss of innocence but I just pray it happened for a reason and we can be even more proactive in his care. I am going to Atlanta for the conference next week. If you are not going to attend, I plan to take notes on what to do with our young ones and will report back to you. Please keep in touch. I have to go now, Wyatt has swimming lessons.
Boy, we have even more in common. Two years ago [part of the reason for his delayed diagnosis] Cory was diagnosed with Aspergers Syndrome. Ever since kindergarten, I have been trying to understand how to work with him and we have made wonderful progress, but AS has been the focus of our lives. His school has been phenomenal, I had no help at all from the medical world. I associated Cory's toe-walking with AS and an orthopedic "specialist" called it idiopathic which seemed like further confirmation. But, since Cory is under so much observation at his school, the autism specialist noted his difficulty walking up stairs in November. It took us until January to find someone to diagnose Cory with DMD (all the while I was hoping and hoping it was "only" AS). Once again, it was his public school that made the correct discovery! The good news is that Cory already has an IEP in place and a community of teachers engaged in his progress.
Hi Melissa. Thanks to information from the people on this site, Cory and I are headed for Cincinnati this Monday, the 8th! Cory is such a late diagnosis, I was just amazed, and relieved, they could get is in so quickly. And everyone we have spoken with have been so kind. Unfortunately, my experience with the medical field has not been good until now. I appreciate this community so much. I appreciate your saying hello and look forward to hearing more from you. I am so excited to leave Monday. Take care
Hi, Melissa. While I hate to hear of other little baby boys having Duchenne, it's a small comfort to know I'm not the only one going through this with a little one. Max is just three months younger than Wyatt -- he turned one on April 29th. I need to add updated info to my home page!
Here's our story: my mom had three brothers (awesome super-cool young men, by the way) with Duchenne, and I learned early on that my sons could possibly have it too. My mom had three girls, and when she was younger, carrier testing wasn't very accurate, so we never knew whether or not she was a carrier. Flash forward to after I got married, but before I got pregnant: My mom had called a geneticist about testing, and basically received inaccurate information. She was told that without a living known carrier to compare DNA with, we could not know for sure whether or not I was a carrier. I got pregnant and had a beautiful little girl named Holly. For some reason, I didn't stress out about Duchenne during the early days of my pregnancy. Three years later, we decided to have one more baby. This time, however, I was really concerned about Duchenne, so I decided to try again to get more information about my carrier status. My thought was I probably wasn't a carrier, so why not get tested so that's one worry off my plate. During genetic counseling, I learned that I could indeed find out if I was a carrier (not 100% accurate, but pretty darn close), and decided to test. Of course, the test results came back that I was a carrier, then I learned shortly after that I was having a boy. While I was devestated, I kept holding on to the fact that Max had a 50/50 chance of NOT having Duchenne.
My thought during my pregnancy was I would wait until he was 1 or 2 to test him, but I found myself constantly wondering if he had DMD. Every time I looked at my precious baby, I wondered what his future held. We tested him at three months, then found out a few weeks later that he has Duchenne. His deletions are 46-50. I think we're handling the news pretty well -- I think because we knew this was a possibility. Still, there are days when I get SO sad when I think of all the difficulties Max will face. I actually didn't look at this board for about a month because I couldn't handle reading posts about the older boys. :(
I'm looking forward to finally meeting Dr. Wong after I've heard so many great things about her.
I have a question for you. Are you interested in possibly doing a fundraiser for PPMD? There is an event coming up called "Coach to Cure MD" on Sept. 26th. We did a pizza fundraiser last year, but I was approached by a manager of Kohl's who really wanted to help us. I called and talked with them and I will be doing a fundraiser at the Kohl's here in Covington. They do what is called an "A team event" they start off by giving $500 to our charity and then we can sell the footballs PPMD is printing for a dollar either at the registers or outside. All of the Kohl's do this, are you interested in trying one at the Kohl's nearest you? I know you are a busy Mom, but just wanted to run it past you. I can help set it up, no pressure though. We just try to do at least one fundraiser for PPMD a year. Any amount helps. I am so excited for your trip to Dr. Wong!!!
I am sorry to hear about the diagnose. You can stay with us when you come to your visit with Dr. Wong. Just let me know the date, my house is very well equipped for babies!! - I have pack & Play, high chair, lots and lots of toys, baby spoons etc which will make your stay more comfortable and less stressfull. I have an 11 month old a 2 yr old and a 4 yr old. (My oldest with DMD). He was diagnosed also at 13 months, so i know what it is. Here is my email: email@example.com and phone (513) 765-9416
The way the clinic works here, the insurance pays most (depending on your insurance) and then MDA steps in and pays the rest. But, this is a much smaller clinic here than it is in Cincinnati. I thought the MDA clinic in Cincinnati worked the same but it does not b/c Dr. Wong has so many patients....I was told that there is only a limited amt per md patient. Maybe I misunderstood....but we have been paying the balance out of pocket from Cincinnati. Let me know what Dr. Wong says.
I think b/c Dr. Wong has so many patients that her MD clinic works a little differently. I think you need to talk to her. I think I was told that Dr. Wong only gets a limited amount from MDA and that b/c she has so many in her care, that each child receives a small amt. But, do email Dr. Wong and ask her.
I do recall that there were some other boys that were small and behind on the growth curve and had to have thyroid, GH therapy. Dr. Wong studied under one of the world's best in England....his name escapes me but it's one of the best.
Keep in contact. Wyatt is lucky to have you as a mom!
Oh, my gosh that's wonderful that you met Pat!!!!! Isn't she wonderful, I felt so much hope after talking with her. I didn't know she was coming to town. I'm glad that she recommended going to Dr. Wong ASAP to figure out what is going on with little Wyatt. I know she can help you, they are so thorough and run a lot of tests. Did you see that very, very soon the Exon Skipping 51 trials are starting? We are very excited and hopeful. Even though are boys are too young right now to participate, it's coming. Keep your fingers crossed that all goes well!!! Did you talk to Pat about supplements? Did she recommend starting any or are you going to wait until you see Dr. Wong? We waited until we saw her and started Gavin at 2 years old on Vitamin D3 and CoQ10, now we have added many more. Thank you so much for keeping me posted on everything. I'm so glad we've met on this site, I think we will be great support to one another!! I hope you can get in to see Dr. Wong very soon.
We have had a great weekend. We just had some friends over tonight and had dinner and played games, it was fun. I hope you are enjoying your weekend as well :-)