Friday, October 24, 2008

Member of the Myotonic Dystrophy Foundation Community Support Group

If you are looking for support for myotonic dystrophy or congenital myotonic dystrophy, join our online community at:

Friday, October 10, 2008

Kayla Had an Accident But is OK

We had a real scare with Kayla today. I got a call this morning from one of our nurses that she fell out of one of our kitchen chairs and hit the tile floor. She seemed upset at first but then was able to calm down. It didn't seem like she was hurt until I got a call that she had thrown up about half an hour later. I raced home just in time to meet the paramedics at our house. They put her in a neck brace and rushed her down by ambulance to the ER at UC Davis.

Kayla was such a trooper and didn't complain that much about being locked down for most of the day. We entertained her and tried to keep her spirits up. She is such a good little girl.

The doctors did a CT scan and several X-Ray's and confirmed that she didn't have any damage from the fall. We were so relieved until the doctor mentioned that she had brain stem and frontal lobe atrophy consistent with congenital myotonic dystrophy. That was a punch in the gut that I wasn't expecting. I know that it's a reality of this darn disease but to hear the doctor say those words about my angel Kayla, really took my breath away. I cried on the ride home but then got through it and I'm ok now. I know that I can't focus on that right now as Kayla has done more than anyone expected her to so we feel very blessed that she is even here with us. I really believe that an angel scooped in to save Kayla from that fall. When I got home I saw how she fell and I realized what a miracle it was that she's ok.

Feeling blessed,


Thursday, October 9, 2008

We Attended the Myotonic Dystrophy Family Conference In LA

On September 19, 2008, we went to Manhattan Beach, for the 2008 Myotonic Dystrophy Family Conference. The conference was great and we were able to connect again with lots of our friends that we've made throughout the years. The Myotonic Dystrophy Foundation (MDF) helped to sponsor the conference this year and I had a table during the conference where we met families and provided medical information. We officially introduced our new websites, where we have comprehensive content about myotonic dystrophy and our new online community site, where families living with myotonic dystrophy can connect.

Going to Manhattan Beach was little surreal. I lived in Manhattan Beach before going to business school in 1998 and all of the memories of how simple life used to be came flooding back to me. The hardest decision that I used to have to make was whether or not I would play beach volleyball or rollerblade until the sun went down after work. I really miss those simple days but I wouldn't give up my life right now if it meant not having Kayla in my life.

I got a phone call today from a family who has a new baby in the NICU who is struggling with congenital myotonic dystrophy and that call reconfirmed to me how important the work I do is. The mom cried to me and told me that I saved her life and gave her hope by documenting Kayla's story in my blog. I cried my eyes out knowing that the experiences that we had with Kayla were helping someone else. That call is one that I will remember forever. Being able to help someone in need is the most rewarding thing I have done in my life.

Well, I need to go feed Kayla so I'll write more later.