Headed to Mexico for Stem Cells

We're back and were able to settle into a routine again following Tommy's recent aqua therapy intensive with Rise. It was really nice to see and work with Nicole again, and Tommy also got to work with Tiffany in both DMI and aqua therapy sessions each day. She was extremely attentive to Tommy's needs, and made sure he was comfortable during the exercises.

We were near Asbury Park, so Tommy was able to start and end his intensive with some live music, listening to bands playing on the stone pony summer stage from the boardwalk. He loved it so much he forced us to stay for both full concerts, and danced with Mama through the night.

For the therapy, the main focus was on disassociation of his arms and legs. This helps break up the tendency to activate more muscle groups than necessary to perform certain tasks. For example, isolating his leg muscles when reaching with his arms, or preventing/limiting the muscle spasticity in his arms when trying to take steps. This was done with various crawling exercises, which are extremely tough for Tommy since he struggles to bring his arms forward while on his stomach. He also took part in balancing exercises coupled with reaching for toys, and maintained his core very well. Though it was only a week, we've already seen results translating to his day to day movement, with better success at crawling forward, or reaching for what he wants.

After the DMI sessions each day, he would take a nap before returning for a session in the pool. If you don't know by now, Tommy loves all things water, so this was a big highlight for our hardworking boy. He was very serious during his sessions, often getting right to work. You could tell his other friends in therapy were motivating to him, and he liked the company knowing he wasn't doing the work alone. It also helped that he wasn't the only Ms. Rachel fan.

Overall, while the intensive was short, it was very successful, and it feels good that we're able to keep up a certain level of play and fun alongside his therapy. So often, we worry if we're overloading his life with therapy, doctors appointments, intensives, etc. Seeing his joy and love shine through even when he's working so hard is something we're always grateful for.

With barely time to blink, we're already on to the next leg of our journey, and have set up an appointment with Neorgana in Merida, Mexico to get Tommy MUSE stem cells this August. We're on the way to the airport now, and both boys are excited to travel to another country.

With any stem cell treatment directed at brain damage, the goal is to allow rapid development to take place shortly following the administration of the cells. With MUSE stem cells, they differ in that they have a much lower and more controlled growth rate over general stem cell therapy. There's also a much smaller chance of the cells being rejected, and they have a wider range of specialized cells they are able to divide or turn into.

The research is very new, but does point to extremely promising results. The process works by adding a molecule that locates cell damage. This is what alerts the stem cells on where to travel once administered. From there, the cells begin to work immediately, dividing and transitioning to specialized cells in the area specified. For Tommy, he has brain damage from HIE, so that is where the cells will be headed, and they will begin making new brain connections or repairing damaged tissue immediately.

In terms of results, there isn't a specific outcome we're looking for. Instead, the idea is they will allow Tommy to develop at an increased rate with a developmental focus on whatever he is working on at the moment. Each therapy he's participating in (physical, occupational, speech, feeding, etc) will show small boosts in how quickly he is able to achieve certain tasks.

It's important to note that these are not one-offs, but permanent increases to Tommy's current abilities. If he is able to use his hand in a more relaxed way to grab something, that method becomes part of his available tools going forward. While the gains are permanent, the boost in development will start immediately, and likely be in full swing about 2 months after administration. These increased gains will also last around 6-7 months, so we've already set up another two-week DMI intensive within that window (thanks very much to the Communale's for their incredible donation allowing for this). The procedure is non-invasive, with two nasal administrations, and one IV injection. The location will also be providing various therapies while we are there, which is helpful.

While we're not sure exactly what to expect following treatment, we're very excited by the prospective benefits this procedure will allow. We want to reiterate how thankful we are for anyone who has supported our son on his journey. None of this would be possible without you.

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