Heading Out to a Family Conference for Myotonic Dystrophy

Jeff and I are heading out to Los Angeles this morning to go to a Myotonic Dystrophy conference in Manhattan Beach tonight. We will be meeting with several families that we have been chatting with on a Myotonic chat group for the last month. We are eager to learn as much as we can about Myotonic Dystrophy so this event should be a great start.

Kayla has made some progress over the last few days. Her feeding tube was moved from her lower bowel to her stomach two days ago and she is handling the food well. Yesterday (9/16/05), Kayla's breathing tube was removed and she is only being supported by a nasal canula with pressured oxygen. So far she is hanging in there although she has had a handful of times when her vital signs have gone a little off the charts. She has recovered from the heart drops and C02 increases well and we are hoping that she continues this progress and can stay off of the ventilator. Unfortunately, if she fails this time, she will need to have a trach put in but we are feeling like she will make it so we aren't going to worry about that for now.

Kayla weighed in yesterday at 7 lbs. 11 oz. and is is getting bigger by the day! Go Kayla!

We are rushing out the door but will write more when we return home tomorrow.

Love,

Lisa