Hi Everyone!
I hope your summer has begun and that you are having a great time.  We have been so busy it really makes me wonder how I have time to work during the school year! 

Seph is doing great. We had a scare in May that his hamstrings had lost 20% range of motion. You couldn't tell it when he walked, but when stretching him you could. I also noticed that he was weaker going down the steps to our pool..he would actually sit down to scoot down them.  Well, it dawned on me that we had run out of a supplement that he takes, Protandium. This is a supplement that is a heavy duty anti oxidant that also reduces inflammation in the muscle cells. Well, I have never been convinced that it really did anything for him, so I consciously did not buy more.  The timing of the tightness and strength loss was about 3 weeks after he had been off of Protandium. 
Needless to say, we bought more to see if it improved things.  Now, I did do more home stretches (not as much as I should have but more than I had been) and we did see a slight improvement in his ROM...but after 1 week back on Protandium, his ROM on an initial stretch was MARKEDLY improved...like 15-20% better!!!!!  AND, he, today at the end of the day was walking, not scooting, down the steps to the pool!  I don't think I will let the protandium run out again!  Amazing!  There is no clinical proof that this works, but there is no other reason for the improvment (Dr. Wong..if you are reading this and would like a copy of the before and after ROM measurements, let me know and I will get them for you).

We are going to the annual PPMD conference next week.  We get to see our extended family....those with DMD who I am so thankful that I have met, even if it through this horrid disorder...and talk with researchers who are working on finding a valid treatment or cure for DMD.  We are SO close!  Please pray with me that critical upcoming trials are not delayed and go quickly. There is one, utrophin, that is particularly interesting and promising that is to go to trial early next year..Please dear Lord...no delays!

At church this morning, John Waller sang. He is an amazing artist and sings a song about Waiting on God.  Yes, I will praise him and serve him as I wait with hope.  But it is oh, so hard!

Thank you for joining me in praising God for the turn around in the ROM in Seph's legs.  And please join me in prayers for safe travels for all of our friends to conference and for all of our boys while we are away from them.

Now for Seph's latest funny...seems like there are some everyday!  Anyway, today when leaving church, Seph and Hannah were ahead of us. Hannah had the car keys and let them in the car and turned on the 'battery' of the van, not the engine, thinking that she had the A/C on. She just had the fan on. A few minutes later I walked up and she and Seph were standing outside the van and she said "Mom, it is SO HOT in that van".  We got in and realized the A/C was not on...just the fan. HAnnah said, "Well, no wonder; Seph asked me if this is what hell is like? it's so hot!"...and it is still only June!!!!!!

Seph is swimming like a fish! He is all over the shallow end of the pool and is now jumping off the diving board with NO floaties!  He jumps and swims to the ladder and does it again! We are going to have to watch him very closely now!!!

Thanks for the prayers!!  I will fill you in after conference!

Lori and Seph