Second Sarasota DMI Intensive

It's hard to believe we haven't updated the website in a month, but here we are. Though an update has been long overdue, we've been posting steadily about Tommy on his Instagram page (@toughliketommy), so please try to follow us there for more frequent news on his developments, therapy, and his day to day achievements.

The cause for the delay is the usual, life threw us a few curveballs to navigate, and we're still trying to get caught up. We had three trips to the emergency room for reasons unrelated to Tommy (all with okay outcomes, thankfully), and have been juggling Tommy's therapies with work and constant calls with insurance companies, equipment providers, distributors, therapists, etc.

We've also had a few positive surprises recently, and are excited to announce that Tommy will be a big brother in October of this year!

Aside from that, we're happy to share that Tommy's recent DMI intensive in Florida was a tremendous success.

That's not to say we weren't without hiccups; work was tough to maneuver with the therapy sessions since we both had limited time to take off. We drove down from NJ, which was a 20 hour trip that needed to be completed in a day or two to account for work and his therapy. We also had to learn how to maintain his feeding tube during the drive and during his therapy, and needed to bring all of his equipment needed to replace his bandages, the tube itself, and to ensure he had food for the duration. Tommy also managed to pull out the feeding tube on two separate occasions, so it was quite the eventful trip.

Distracted Standing

Even with those obstacles, Tommy was as motivated as ever to put in the work, and it shows in the videos and pictures we took, as well as in his development and the improvements we've seen. This intensive was exclusively a DMI two week, meaning there was no occupational therapy, unlike the last intensive in Florida.

For the first week, we were primarily at the barn. The first day was a mixture of jetlag, memories, and tears while Tommy got back into the saddle with his favorite pony, Honeypie. After that initial pout, he went right to being his happy self, getting upset only when the pony was stopped.

Comparing his progress is tough because we have to be realistic about what to expect, but we also don't want to miss any of the small bits of progress he gains

each session. We saw better posture in general for all riding stances he was put in. We noticed his head control while in-motion was massively improved, with much more stability, less intensity on how far his head would dip forward or fall backwards, and he was able to turn more freely without losing core stability. We saw him using both hands on the reigns, and engaging his core for longer durations, and he would use his legs to maintain that engagement. We were so happy to see the progress he made over last time we were here.

Tommy also had an opportunity to do therapy on a paddleboard in the ocean and in a pool! This was intended to challenge his core and stability as well. The waves were perfect, and before long, Tommy entered a Zen-like state staring out at the beautiful ocean and sky. Even his mother, perennially afraid of ocean water and sea critters, was able to find strength in her son and braved the schools of passing fish to help balance the board.

Therapy sessions during the second week took place at our rental, with a mix of TASEs e-stim and DMI therapy. A big focus of his therapist, Molly (from Kids PT by the Sea, and the same therapist he worked with last time, and in Ontario), was to

work on is his extension while standing and pulling himself up, with additional emphasis on taking steps with minimal support.

We were also lucky enough to meet with an incredible speech therapist, Paola (also with Kids PT by the Sea), and got some good information and advice surrounding his mouth exercises and feeding sessions, including hints to help Tommy gain more weight and control his mouth and tongue while eating.

We're very thankful to be able to bring home so many new concepts and techniques to apply in our daily care, and we have our wonderfully supportive community to thank for these opportunities. Looking to our son, I think he enjoyed all of his sessions a great deal, but absolutely loved being on, in, or near the water. It's amazing that the teams with Kids PT by the Sea and Dancing Palomino Ranch can offer such specialized scenarios for children to grow and develop. We want to extend a special thank you for the work they are doing, and hope they receive the acknowledgement they deserve for their contributions to the therapeutic community.

Navigating life with Tommy can certainly be challenging; we have so many therapy appointments, equipment and feeding tube maintenance, and sometimes it can be hard just finding time to have fun. Even so, we're learning to take everything day by day, and are finding so many blessings in every moment we spend with our boy. This trip also featured a few visits from Tommy's cousins, aunts and uncles, and grandparents all looking to support him on his journey. It's hard to emphasize the significance of their presence and support, but it meant the world to Tommy and us.

For Tommy, we will be planning another final DMI intensive for this year in early September. We will be trying another location much closer, and have already confirmed our two-week stay. We will also have a new toolkit added to the site shortly that will have more information on cerebral palsy. Thank you for taking the time to follow along and support our son on his journey!