Two years since DMD . . . are we "normal" yet?

It's been two years today since Connor's confirmed Duchenne Muscular Dystrophy diagnosis.  It has also been three months since his PDD (Autism diagnosis).  There has been good with the bad.  We were able to see Dr. Wong in Cincinnati in September who said that Connor is doing great with Duchenne and "he may be on the milder side of the disease" which was so amazing to hear.  We certainly hope that it does wind up being the case.  It gave us validation that the endless hours of research on Duchenne and what Connor needs is helping!  It took quite a lot to be able to go, not only financially but family-wise.  Thank you Dawn, Kris, Fiona, Sam and Mom.  Watching three of our kids plus a dog is not an easy task.  Kuddos to you.  Do we have a "date" again next year?

To those of you that know of our flight woes at the last minute to get to Cincinnati, Jon and I have decided to not take from Connor's Special Needs Trust Fund.  Instead Jon is working as many overtime shifts as is humanly possible to make up for the cost (going from little sleep to zero sleep).  We just felt that when the time comes for van and home modifications, it was more important having those additional funds then.

This week there was an incredible breakthrough for a potential drug that Connor may be able to get in the future (video:  http://video.cnbc.com/gallery/?video=3000119969&play=1).  It is the equivalent of discovering electricity quite honestly for Duchenne.  Although this "batch" is not for Connor, he would be the next group.  We are hopeful that in the coming years they get a version to help Connor.  For now, we hopefully wait and start considering what Connor may want for Make-A-Wish.

Connor started life-long use of corticosteroids five months ago.  It was rocky at first but it has given him more energy.  The biggest issue for us now is Connor's behavior which we are still working on.  With the PDD diagnosis we have been trying to get additional therapy for him and are finally in the later stages of that process.  Everything takes time.  We are also in the process of medicating him to help with his "rigid" thoughts.  Whatever will keep him from hurting Keely for no good reason is fine with us.

So now two years later I think we are all in a better place.  We are thinking about fundraising ideas locally but haven't made any progress.  For now, if anyone would like to donate to Connor's Special Needs Trust Fund, you can do it through paypal here by clicking on the Donate button on the left.

Thank you everyone for your love and support.  We have been so grateful for the friends and family that have really helped us get through a very difficult time in our lives.  We have even been shocked by donations from people we don't even know.  To all of the supportive people in our lives, we are eternally grateful.

Jon, Kira, Liam, Connor, Declan, and Keely