hi christine how is cory doing how was your  trip  to seattle childern hosptial. just droping to by to say hi. am thnking about you kimmy

 hey christine that great about cory  grade,s what does he like read. we should have  decent weather, rain and more rain it would not be  fun driving  in the snow.    maybe when mom and i are f eeling better, and if you and cory have time we would love  to  come to vist. tacoma is just hope skip and jump.   my goal right now is  that i  am getting ready for seattle half marathon.  in june25 to help

to find a cure   for duchenne. yes this very important to me, even thorugh i have walking issue ,    dextial and    anixty and desspesson    lost half my hearing i lip read, and myfather verbal abuse me. my goal is to fight for this kids with every breath i have.kimmy

 i have alot of respect and for  you begin a single mom how is it going,  my mom is  a single i have   walking issue to but that does not  give  me a excuse to give up. i think  what you do every day is awosme. kimmy

Christine we were in conner mt for 10 years thats past Darby we had a 10000 ft house right on the highway everyone knew thr house it was so big I liked missoula the theather there was wonderful my dau was in alot of plays even had me in one I drove up there 4 nights a week for her. Our sons are very close in age Calebs 10th was july 1st he also finished 3rd grade he is reading on 6.1 grade level math not so well. He can still walk but is tired after short time went to the fair in power and said it was the best time he ever had cause he was not tired we left mt in 1997 cause the people just did not under why we were there causing the tax payer money for our kids we adopted several spent many nights at the hospital with Drs that were very good and more that didnot have a clue I so badly want to take Caleb to Cini but I know Medical would not pay for it. nice to talk to you I posted pics of Caleb but I donot see them anywhere I donot know very much about pcs time to learn I have learned alot from this site Penny

Thank you for your response. It is very helpful to know that I am not going through this alone, and that there are others out there that completely understand what we are going through.

Greetings,

How are you? Of course, how is Cory? Did he start the meds yet and if so, how' it going? Is he anxious for school to start? Christian starts in two weeks. He just fractured arm and will get cast off next week after 6 weeks of having. Enjoy the rest of summer! Terri, the boys and I went to an amusement park a few weeks ago, they had fun and thats all that counts. Talk to you soon

This is a great site and helpful to read other's comments. Milt and I are there for you Chris and Cory in our own way.

Our summer is going well. I am currently on lay off from work this week. I will work next week and have 2 more weeks of layoff. The good thing is be able to use the time to spend with family. He still walks well but it seems he is falling more. He just keeps plugging along with determination. I don't think we are close to his depending on a w/c full time; he uses the manual w/c he has occassionally. I guess my biggest fear is that one day he could fall and break a bone.

How is Cory doing? How were his visits in Cincinnati? I'm sorry we missed seeing you back in June. At times, I would see a mom and boy and wonder if it was you and Cory but wasn't sure. Our next visits will be Dec. 9-10.

Thanks. I can't wait. Hope you're doing well! Graeme had his preschool field day the other day and I was so stressed out--notified the director of the daycare, made special arrangements for him not to have to do the more difficult things. Turns out he competed in every event and just got a little extra help on the jumping game. He got a gold medal (everyone did) and he had a great time.

Hi Chris-
How are you doing? Where did you stay when you were in Cinci? I'm debating between the Radisson (indoor pool/a little nicer) and the Holiday Inn, Riverside (shuttle everywhere, less expensive, $10 food credit).

Just wanted to say have a HAPPY 4th!

Darcy

Here's the article online: http://www.mda.org/Publications/Quest/q41braindmd.html Also there is a great book on sensory issues "Sensational Kids" - I know there isn't much time to read but for references, they may be helpful.

Sorry about the you and not your below....typing fast..

Hello!

Very nice meeting you at conference. You son is cute, cute, cute. I hope your trip home went well. We arrived safely at 8:30 pm. Long trip home but worth the ride. Does you son really ski? Great! Hope all is well and stay in touch. Today was the longest day ever.

Darcy

Yeah, I guess that we do. We're just thankful that Wyatt since he will have so much to overcome already that he doesn't need AS thrown into the mix too. You have all your medical stuff wrapped up into your one son. I'm sorry to hear that not only is Cory having to face the DMD, he has the social issues and possible medical ones that come along with Asperger's. I thought that Asperger's was going to be the biggest battle of my life, boy was I ever wrong. We think of Asperger's as our warm up to the real battle DMD. It has been the focus of our lives too. There are so many other medical things that come along with AS. In addition to the AS Anthony also has a seizure disorder and asthma. All of which just compound the problem. Anthony went to our home elementary school and was in a great AS program there. However, middle school was not going to make accomadations for him. So we ended up enrolling him in the most amazing online public school. It's available in many states and it's Free, so that might be something to keep in the back of your mind, if you get the typical school response down the road, "there's no where for him! We don't have a program". We felt like after elementary school they were just going to wash their hands of Anthony.

I've learned from Anthony that if you don't ask, they won't tell. You have to find your own answers and then force your doctor to comply. We have an amazing family doctor, who will do anything I ask. You need to find one advocate in the medical world to go to bat for you. Thankfully our family doctor does that for us. If you can find that person, then the other medical professionals can't blow you off as easily.

Thanks goodness for the Autism specialist. Sounds like someone was watching out. Anthony always had a gross motor skill delay, so I guess I can understand why they explained the walking issues on AS. But not all AS kids have a motor skill delay. (Anthony is negative for DMD). Hoping for only AS, that's a stange thing to wish for, but I totally understand what you mean. I thought Anthony struggled, but I did the same think the hole time Wyatt was getting tests done, I thought, really GOD can you really give me something else. Haven't I been through enough already. I knew I could beat AS, I was so scared!

I'm glad to hear that Cory already has IEP in place, that's another headache you don't need to deal with right now.

I wish you and Cory the best of luck.

You should be back for Cincinnati soon, let me know how it went.

We will be seeing the doctors on Thursday so maybe I will see you there that day. We will spend most of our day in Building A on the 8th floor. I will be on the lookout for you. We are a family of 4 and my son will have his service dog with him.

Hi Christine. My name is Lisa and my son is 12 with DMD. We will be in Cincinnati tomorrow (June 8) and stay until we leave early Sat. morning (June 13). We will be staying at Hannaford Suites. This will be our 3rd trip to Cincy and this hotel works well for us. I see you have appointments on the 8th. Bradley has appointments all day on the 10th & 11th.