Well this is long overdue!
Where to start? We had a great visit to Children’s National in Washington D.C. The staff was amazing and the Neurologist was ready to a take a proactive approach to Trent’s diagnosis. We left the visit with prescribed Physical Therapy (woohoo) and recommendations for music and Aqua therapy. This may sound like a lot but it was exactly what we were hoping for!
In the meantime, I also reached out to the state and had Trent evaluated for Early Intervention. At initial glance he did not qualify but after some digging, I found a catch- if your child has a diagnosis that puts them at increased risk for delays they AUTOMATICALLY get Early Intervention services!!! Needless to say, I immediately made them aware through articles and doctors notes of the “risk” that comes with his DMD diagnosis and we were able to get speech and PT services each 1x a week. Our EI therapists are amazing and have wholeheartedly joined our team! They amaze me with the love and support they have already shown Trent and how eager they are to learn about Duchenne.
After some battles with our insurance company, we are finally on a steady Out Patient PT schedule. Once a week we go to CHOP in Princeton where Trent has access to state of the art gym equipment and pediatric therapists who are working hard to help him meet his goals.
Music and swim have also been introduced. We are attending Music Together classes which been proven to enhance language and congnitive development and I will tell you, Trent Loves it! We also joined an aquatic center that allows us access to a pool 7 days a week. We tend to get there at least twice a week. Trent is definitely a water baby, he loves his time at the pool and it’s great for him to be in the water and moving his muscles. He’s even swimming underwater from one person to another! Not too bad for 14 months, right?
As you can see our schedule is quite full these days but we love it. Trent really seems to enjoy every “activity” and we are thrilled as his parents to feel like we are no longer sitting around waiting for his body to start to show signs before we actually do something about it.
What’s next? We leave next week for Ohio where we will visit two of the top Neuromuscular Clinics in the U.S. We are continuing our visits to different clinics so we can compare and decide which clinic is best for Trent. And as always, I promise to update you all about our visits when I get a chance.
Trent is really making progress with his new schedule- he is babbling like crazy and taking about 10 steps! He works so hard during his sessions and our boy loves to be cheered on. He loves when we clap and yell for him as he tries to master a skill. While he might be the happiest kid ever he is also the hungriest! Trent has an adult appetite! The kid LOVES food! He is picking up baby sign language really quickly and will consistently use about 6 signs- it is amazing how fast he learns! These days he also loves to play with books and his music set. Puzzles, paw patrol and sorting toys are also some of his favorites. Gosh I’m lucky to be his mom!
We are now almost 5 months from our diagnosis date and life has been a roller coaster of emotions. Our family continues to feel such incredible support from our friends and family members. We have our good and bad days but I can honestly say the good days far outweigh the bad. Trent’s smile is incredibly contagious and it is almost impossible to be upset in his presence. He is our strength and motivation to keep smiling, enjoy our days and make unbelievable memories!
Keep reading and stay tuned- fingers crossed that we will have a clinic picked in my next post. Until then, love unconditionally and don’t sweat the small stuff 🙂