We have had such a busy and incredible summer. So busy in fact, that I did not create one post on this blog! It’s hard to believe that Weston is starting school this week and the summer is over. So in these last few moments, we will be soaking in the sun and the fun, and reflecting on this fantastic summer. Here are some of the highlights:
We attended the 18th Family Café Conference and Governor’s Summit on Disabilities in Orlando, and what a wealth of resources and connections for Florida families! My incredible family and friends came over and helped us cover all the great informational sessions that were happening simultaneously (these ranged from disability scholarships, assisted mobility, iOS accessibility features, tax benefits, IEPs, advocacy, and so much more). We heard a panel addressing Florida’s forward momentum for disability support, led by Governor Rick Scott, State Senate Majority Leader Bill Galcano, the Agency for Persons with Disabilities, the Florida Department of Education, and the State Surgeon General. I had no idea that this event even existed, and we were thrilled to participate and walk away so much more informed and prepared for the next steps in life.
Following the excitement of the Family Café, we participated in the events leading to the Port Canaveral Cove Merchant’s Association Mac Attack Fishing Tournament This year, the CMA chose to use the tournament proceeds to fund Curren’s participation in a specialized intensive physical therapy program at Ability Plus.My employer, BRPH, was a sponsor for the event and funded two boats to participate in the tournament.Despite tough weather conditions, the tournament was a great success. Curren will be starting the Intensive Physical Therapy Program in September, where he will spend 3 hours a day every day wearing a dynamic soft orthosis suit and work on muscle strengthening and active functional movements. At the conclusion of the 3 week program, we expect to see huge gains in hopes of Curren becoming independently mobile. We cannot thank the community and the CMA enough for coming together and supporting Curren in this incredible opportunity!
The boys also had their first horse riding lessons (or horsebacking as Weston calls it). Curren participated in equine assisted therapy, where he rode a horse with two side walkers holding on to his waistband (just in case he lost his balance). The repetition of the horses stride is calming, and absorbing the horses movement strengthens core muscles and increases balance. Curren has fallen in love with horse riding, and all the sweet staff at Walk on Water. I highly recommend equine therapy to anyone with developmental delays, physical disabilities, or autism.
Curren is building a large collection of adaptive tools and equipment at home. We installed a little ceiling mounted exerciser called a Merry Muscles in our living room, and Curren loves to jump and spin around in it. We also got a really exciting mobility device called the Upsee, which lets children with motor impairments stand and walk with the help of an adult. It’s a harness system that attaches to my feet and hips and let’s Curren see the world standing up. We also started see a new orthopedic specialist, who fit Curren with AFO leg braces to give him more stability when standing. He was not a fan at first, but he is doing so incredible with this additional support now! Our living room also has several new “furniture” additions – a chicken and an elephant from bobles, a Danish product line aimed at stimulating imagination and developing motor skills. We are also anxiously anticipating the arrival of Curren’s wheelchair, which should be coming in the next month or so.
And now, for the changes on the horizon! Curren will turn 3 next month, and will be phasing out of the Early Intervention program. I cannot say enough incredible things about our experience with Space Coast Early Steps. My heart is just overwhelmed with the support that has been provided to Curren by our team of therapists, the local community, and our Early Steps case manager. The experience that Early Steps provided Curren has built a solid foundation and has honestly changed Curren’s trajectory in life. As sad as we are to close this chapter, we are thrilled to have Curren start in an Early Exceptional Learning Program at a local public school. He will be attending class 3 days a week, and will get additional therapies at school.
We are also preparing for an upcoming trip to New York, where we will meet with the senior author of the most recent HIVEP2 medical publication. We are hoping to learn more about HIVEP2 and how we can further help Curren. We can't wait to see what Dr Chung can do for Curren - she seems like a truly incredible doctor!
I hope that everyone is (mostly) ready for school and has a wonderful fall! It’s so sad to see summer come and go, but the future is looking so bright!
Sign up for our mailing list and you'll be the first to get updates on Curren and all his adventures!
I am a mother, architect, wife, and a lover (not a fighter) - with a thirst for knowledge. My journey been recently refocused, as my family navigates through the world of medical and developmental uncertainty in hopes of providing every opportunity for my son to be his personal best in life.