“Every story has a beginning, and every relationship has a story….” Yes, married for a year already. Year one was about adjustment. From saying, “I used to do this…,” or “I did it like this” to “WE can do it like this.” It was assimilating into each other’s lives, filling the gaps, and learning about … More Year one
Once upon a time in the mountains of Estes Park on September 16th.. It started as a regular early morning with a long agenda. We checked-in to the Mountain Chateau the evening before with luggage and loads of boxes of all sizes. Before opening anything, I had to see the view from the balcony. I … More Wedding in the Mountains
For about 15 years, I faired the storms of parenting both of my boys without a husband or consistent father figure for them. I’ve leaned on prayers and the many family members and friends that became a village around us. Because it “takes a village to raise a child” and in this case, I needed every … More Plus One
“But for family and caregivers, this brutal list is absolutely heartbreaking to watch them live out and verbalize these thoughts. This is as real as it is going to get for us. Beyond these thoughts he has actions have followed suit out of aggression and anxiety, and has gone as far as stating he’d rather … More A Rabbit Hole: Depression and DMD
Jonathan received his Permobil in June, and absolutely loves it. It’s given him a sense of independence and freedom beyond a basic chair. With an estimated price tag of around $60,000, it is fully loaded and will grow with him as he becomes an adult. His powerchair features: This is an absolute gamechanger for Jonathan. … More Jonathan’s powerwheels
Every year the MDA holds a week long camp specific for kiddos with all variations of muscular dystrophy; focusing on inclusivity and accessibility for activities that go beyond the everyday. Jonathan had access to fishing, canoeing/kayaking, ziplining, rock- climbing, horseback riding, swimming, obstacle courses, and so much more that were converted to handicap accessible activities! … More MDA Camp
As you may know from ***Jonathan News 3*** Jonathan had the SPML procedure this week and it went slightly different than expected. We had a 4 hour drive the evening before and spent the night there prior to the surgery. Nerves were high for Jonathan and all he could think about was how the surgery … More ***Jonathan News 4***
I meant SPML surgery! We waited for this surgery since last summer because of this specific doctor. He is currently 1 of 2 doctors that can do this procedure in the U.S. and unfortunately his practice is out of network for us. Hence the insurance fight. Technically we are still in it. Please pray for … More ***Jonathan News 3***
“…it’s hard. It’s not just transitioning to a wheelchair; it is transitioning into a whole new way of life.” The GiggleHut Mom I love beats. There’s nothing like a good song that moves you, keeps your head nodding, and lyrics that sing straight to your heart. But when we think of beats in terms of … More The Beat
Thank you everyone for your prayers, love, support and generosity! We had many tests and evaluations done during our doctor’s appointments, and Dr. Wong believes Jonathan is a good candidate for clinical trials. So in returning home we will be working towards meeting eligibility requirements for some new clinical trials. Which is just to make … More Returning home
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