Happy 2026

Happy New Year!

It's been 7 months since we've last updated the website, but we are proud to confirm that Tommy officially became a big brother on October 6th, 2025, to little Jonah Enrique Mancinelli. We can already see the bond forming between the boys in the few short months since his birth, and are excited to watch them grow together.

Looking back, this has been a very impactful year for our son's development for a lot of reasons, and it's also been a reality check for Mom and Dad. It feels like yesterday we were waiting on an MRI appointment scheduled 6 months down the line when we received a call on Tommy's first birthday (12/30) about an opening 6:30 am the next morning (new years eve). That scan led to the confirmation of his cerebral palsy diagnosis, and sent us further down the path of his various therapies and intensives, and now we've just celebrated his 2nd birthday.

Tommy's first DMI intensive was in Florida in January with Molly, which helped open our eyes to how much the intensives helped Tommy to gain new skills, and also how hard he was willing to work to gain those skills. We got an email from Molly later that the DMI team was looking for demo children for an upcoming teaching session, which allowed us back stage access to see the teaching methodology and application in a setting full of licensed and to-be-licensed therapists all looking to make a positive impact in these kid's lives. This was in March in Ontario, and marked Tommy's first time leaving the country and flying in a plane. This was also the same month we hosted our first ever benefit to raise money to help us continue to schedule and attend different therapies, and afford the cost of Tommy's treatment, appointments, equipment, etc.

In April, we learned Tommy was malnourished. His cerebral palsy affects his ability to chew and swallow food, so we decided to get an NG feeding tube inserted to help with his caloric intake. This resulted in a three day hospital stay (where we all got hit with the flu) to get the tube inserted, ensure there were no complications, and ensure we were comfortable with changing out and caring for the tube, and administering his overnight food (pumped through the NG tube inserted in his nose) for the duration he'd need it (foreshadowing!).

Later that same month, we were able to return to Florida so Tommy could get back in the saddle (literally, with honey pie) and continue working with Molly and his friends at the Dancing Palomino ranch. Better weather meant we got to the beach and pool quite often, so he was able to relax after his sessions, which was good because they had him working hard!

We also received the genetic testing results in April, but there was no additional indication his cerebral palsy was genetically caused. From here, we were waiting on the results from the metabolic testing, which came early the next month, and also confirmed no underlying metabolic cause.

Tommy started a new therapy in May with CHOP; oral-motor therapy. This was designed to help Tommy get better control of his chewing, tongue usage, and swallowing when eating and drinking. He's really enjoyed this therapy, and has been making very big improvements when eating (the kid loves meatballs).

June through late September was spent dealing with the horror that is modern health insurance for Tommy's required assistive equipment.

We found a high quality stander like new and heavily discounted from a second hand medical equipment store in May, but quickly learned that no officially licensed Leckey distributor was able to sell or provide additional parts (it was missing the required cushions and straps, but had the full base, and was poseable). They redirected us to local distributors, who then redirected us to second hand providers online and nearby, who redirected us back to the official distributors.

Everyone we spoke to was sympathetic, but didn't have an alternative, so we settled for a much cheaper stander from Leckey, which was received in June. This is not covered by insurance because their official stance is our son does not need a stander AND a walker, and the walker is the more expensive of the two by far.

That walker arrived to CHOP in May, but insurance required we schedule an appointment over a month out for sizing and pickup, as well as sizing Tommy for an activity chair, so we officially received the walker mid-July. He first used the same walker during his CHOP pt appointments, and seemed to really enjoy his time walking in it, so it was a joy to see that carry over at home. And it was an indescribable feeling to see our son run up to hug Mama and Dada after struggling so much to move most of his life.

In July, we fought with the insurance companies again, learning that bathing was not, in fact, a requirement for a disabled individual, so his bath chair would not be covered by insurance. This was a necessity because he cannot sit up unassisted, and a bath is incredibly dangerous, so we purchased one and worked with a local group who gives grant funds towards equipment for disabled children.

August saw Tommy visiting his first dentist, and we also had a follow up with his feeding clinic team, and decided the temporary NG tube would be replaced with a more permanent G tube, directly inserted into the stomach through the belly. On August 15th, we had a much quicker stay at CHOP before getting sent home with a new G tube and all of the new care instructions. We were intimidated at first, but it's been a much better experience for Tommy because he's not uncomfortable, and has nothing irritating his throat or obstructing his beautiful face. The hope was that it would help his feeding, and we've seen steady improvement since making the change.

September was a busy month, as we were not only making preparations for the new arrival, we scheduled a two week intensive with RISE in NJ for PT and OT DMI therapy, and had the G tube follow up appointment (they showed us how to change his G tube for next time, and I can confirm we were good students as we just made the change ourselves for the first time the other day, and uploaded the video to Instagram!).

We finally were able to pick up his activity chair at the end of the month, and it's opened up our ability to play at home with Tommy, and has allowed for more support during his feeding times.

We also made a slight shift to his therapy routines, incorporating speech therapy into his oral motor therapy at CHOP, and replacing his developmental intervention sessions with speech therapy sessions as Tommy began trying to communicate and we didn't want to miss any opportunities.

Baby brother Jonah was born in October, and the two brothers dressed as pumpkins this year for Halloween. Tommy had his first haircut this month as well.

One of the side effects of the G tube is a skin condition around the site called granulation tissue. This is seen as redness and sometimes raised tissue around where the tube enters the belly, and is generally painless and harmless. In October, it got a bit worse and started pushing the tube up, which is dangerous as it's measured to specifically remain in that place. Instead of the general ointment we were applying, we had to schedule an appointment to have silver nitrate added to the tissue to help clear everything up.

In November, Tommy and Dada were sick on three separate occasions, so it was mostly therapy and recovery. Lots of juice, and working on swallowing.

In December, Tommy met Santa, and celebrated his second birthday with us. We also just scheduled another two-week intensive with Baby You Got This, also in NJ. This will be in mid-January, and will be Tommy's first intensive as a big brother!

We've had a rollercoaster of therapy, insurance talks and adaptive equipment shopping, sibling instructions and celebrations, and more over the past year, but Tommy has been a very happy boy overall. He remains motivated as all heck to work through his therapies, and he's been gaining small skills throughout. As parents, the lack of attention and responsiveness from different medical departments and insurance companies has been frustrating. It's also disheartening that we've had so little in the way of answers after such extensive testing. That said, seeing our son's motivation and drive has pushed us to continue down this path despite the frustrations and lack of answers surrounding his cerebral palsy.