• Katie Held

Feet on the ground

So sorry for the radio silence over the past 6 + months. Jon and I have been working hard on getting our feet on the ground and taking in all the information we can so we can start fighting those battles that are out there to fight. We’ve been learning a lot from our own research, webinars, non-profits (PPMD & MDA), coordinated care clinics and DMD families who have now become close life-long friends. This year we decided to do the tour of clinics; Gillette Children’s Specialty in St. Paul, Mayo Clinic in Rochester, UMASS Duchenne Muscular Dystrophy Program in Boston, and Nationwide Children’s Hospital in Ohio. A few more clinics on the list locally to hit up as we are just trying to be sponges learning anything and everything and also to understand the provider landscape and plan of care options that best fit Ethan and our family.

Where is Ethan at today? Well, he is being the typical 3 year old.

He enjoys time with friends at daycare, time with his cousins, fighting with his sister one second, while being best friends the other.

A big shout out to New Horizon Academy! His teacher is amazing and incorporates yoga into Ethan’s routine at school and provides such loving care and support. Ethan is truly held in the arms of heroes everyday at school and we are so thankful for these amazing women!

We are doing whatever we can to create proactive habits for Ethan. The habits so far include; wearing night splints(batman boots), stretch routines, hot epsom salt baths to ease his muscle cramps and yoga. Ethan started lung recruitment which is just a few puffs a night of the “old school” manual respirator which will encourage Ethan to use his entire lung capacity (basically a mini workout for his lungs). Ethan was provided chipmunks which are inserts for his shoes which he wears on occasion. We started the process of training Ethan on swallowing pills; Vitamin D is the chosen one since he is low in this already and it’s a tiny gel cap. Ethan started aquatic therapy, which he just loves! He is taking this all like a champ and we are working this into a daily normal routine for the whole family.

On a brighter note; our family was able to go on two amazing getaways thanks to our generous family.

After hearing the news last fall, we took a trek up north to Duluth for a much needed escape from reality.

In mid-January we went to Disney in Orlando to visit Magic Kingdom, Animal Kingdom, and SeaWorld. This was a truly magical place.

What a blessing to have family.

Thanks to all of you who have reached out to us with support through mail, email, social media, phone calls and visits. We wouldn’t be where we are today without you; hence the Held with Heroes branding on Ethan’s new website. The website is a place where we hope to connect you with more up to date journal entries on Ethan’s status, what events we may be participating in as a family to support DMD and much more. Life’s adventures have just started for our family and we hope to invite you on this ride we call life! Ethan was put on earth for a very special reason. We hope his love, strength and resilience encourages others in their everyday life.

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© 2019 by Held with Heroes

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