My Story

Jessica has Spinal Muscular Atrophy Type II (SMA). This is a genetic neuromuscular disease and 1 in 40 people are carriers of this defective gene. It is also the number one killer of children under 2 years old - so we need to find a way to stop this disease.


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Journal

Sunday, June 21, 2009 2:26 PM, CDT


HAPPY FATHERS DAY TO ALL THE FATHERS OUT THERE!! 

Jessica is doing well.  She is not complaining of any pain at her tube site unless I spin it or clean it - so that is pretty normal.  She will be on the antibiotics for a couple more days.  I am not sure where we go from here - but we will figure it out.

We should be at camp right now - but we got a phone call Friday night and MDA National has cancelled all MDA camps for the summer due to the illnesses that are going around.  Jessica is sad about it and very disappointed - but their health is more important.  So - we are home and going golfing with Dad today for Fathers Day instead.  We are going to have to find something fun to do this week - but I know it won't replace the experience at camp.

At least I won't have to worry about how her tube is doing and that she is healing ok - so I guess it all worked out.  All the kids that were sick and were not going to be able to go are not going to miss out on anything.


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HOSPITAL INFORMATION

Providence Hospital - Novi Michigan
47601 Grand River Ave
Novi, MI 48374
(248) 465-4100