Never Felt Better

Hello all!!

The day before Imelda hit (lots of flooding and rain north/east of Houston) the MDA Clinic called and asked us to move Ben’s appointment to that Friday instead of late October. Thankfully we did not flood and were able to make it to the medical center. Bennett saw his pulmonologist, neurologist and physical medicine doctor.

Our main concern for the past two months has been his breathing. Ben has been using his bipap EVERY night and during the day for about an hour after school. Although we thought this scary/weird/nothing-to-explain-it ‘sigh breathing’ was over with, I’m afraid that we’ve just gotten used to seeing him do it. His pulmonologist *thinks* it’s his chest just becoming tired and having to put thought into taking a deep breath, as it usually happens when he is really active. Ben did a “6 minute walk test”, which showed his oxygen saturation dropping into the low 80’s after 5 minutes. They aren’t “too” concerned, as it quickly returns to normal once he stops whatever activity he’s doing. However, because we’ve had no conclusive answers Dr. Jefferson (pulmonologist) has referred Ben back to cardiology.

Ben will have an echocardiogram, EKG and will then see the cardiologist on October 10. Please pray that his heart is healthy and it is otherwise uneventful. It is terrifying to even think about, but we know that titin myopathies can affect the heart.

Ben got his flu shot (like a champ!) and otherwise had a great appointment. His neurologist is so impressed with his strength!

Bennett has started second grade and is loving it of course , my little social butterfly. His teacher has sent him to the nurse (because of his breathing) but just for precaution, also because it’s really freaky to see a 7 year old hunched over trying to catch his breath. He did a summer tutoring program that really got him caught up in reading and WAY ahead in math. I love that math gives him so much confidence.

I can’t forget to share about the Muscle Walk too!! We raised over $1300 and had 15 people (friends and family) come to walk with us! It was probably the hottest one yet, but all for a great cause. A huge THANK YOU to everyone that donated in Bennett’s name!