Finn’s Journey With Chiari Malformation

04/05/2025

If you plan on eating out tomorrow consider eating at Texas roadhouse. If you go anytime between 12-3, dine in or takeout, present this flyer. 10% of your total bill gets donated to team SUPER FINN and all proceeds go to the Autism Alliance of Northeastern NY.

Grab a great meal and support a great cause 💜

09/03/2024

09/02/2024

03/09/2024

Update on Noah, Finn’s older brother:

He has to have a catheterization done in Boston(that is pending insurance approval). Depending on that, we will determine if surgery is needed. That will be in NYC due to insurance. The surgeon there has done the surgery and is very good. If surgery in not needed Noah will get a LINQ implant(at UVM) that goes under his arm or chest and monitors his heart for up to 3 years. He would be able to return to sports with a AED on hand.

Unfortunately the surgery has only been done in the past 5 years. The exact long term results are unknown. They don’t want to rush into that unless absolutely necessary. As open heart surgery also has big risks as well. It’s definitely been a big process. We appreciate everyone who has been reaching out and checking in. Please continue to send prayers and positive thoughts our way🙏

02/20/2024

Sorry I have not updated in a while.
Finn is doing amazing. He has been busy with school! Thank you everyone for your continued support💜

If you could please keep Finn’s older brother in your prayers, we would appreciate it. He was recently diagnosed with a very rare heart condition that affects only 1% of people. His cardiologist is conferring with 3 different children’s hospitals in the U.S., to see what the best course of action is. He will more than likely need open heart surgery 🙏

12/30/2023

I see a lot of people reflecting on this year! For us this year was hard. From May to August was the hardest. We went in May preparing to be told Finn had cerebral palsy, instead we were told he had Chiari’s and would need surgery. We researched and we prepared! As prepared as we thought we were, Nothing prepares you for seeing your child lying in the ICU in pain after neck and brain surgery (one of the worst painful surgeries someone can have, according to our ICU nurse). What was supposed to be one night in ICU turned into 4 and 1 night on the pediatric floor. We took turns sleeping in a chair by his bed. Watching him cry from the pain, vomiting and allergic reaction to his meds. We sat and watched him recover.At two weeks post op he ended up have a small CSF leak and secondary infection that resulted in multiple trips across the lake and an overnight stay. We watched him, how strong and amazing he is 💜

What else we weren’t prepared for was our amazing family, friends, strangers, our community and many medical parents coming together to support us. From the fundraisers, motorcycle rides from the MRMC, Run for Jon, a local yard sale, the Plattsburgh mom’s group, and many medical mamas reaching out. I am forever grateful for the people who we have met on this journey.

We are 6 months post op In January! We still have a lot of unknowns and upcoming testing. A few bumps long the way. As of right now Finn is doing well. He is thriving in school, no doubt to his amazing team or teachers and therapist. We still have lots of appointments that are upcoming in the new year but really hope 2024 is good to us💜

I will post another post on new years of all the positives of 2023. This is just a little update on Finn, his story, and his progress!

12/25/2023

12/24/2023

Haven’t done an update in awhile. The holidays have been keeping us extremely busy. Finn currently has a nasty ear infection. We went yesterday for his neurologist check up. He is still having issues a weak core and leg weakness. He also has low/no reflex’s in his left leg. His neurologist also noticed hyper mobility in his upper extremities. They sent us home with a kit to do generic testing. We are trying to figure out if this is chiari related or something else.

I hope everyone is enjoying the holidays with their loved one’s🎄

Merry Christmas from Finn and family💜

11/23/2023

Thank you for everyone who has been such a big supporter of Finn’s journey💜

Happy Thanksgiving from our family💜

11/21/2023

Update of FINNEY:

The one on the right is from May. You can see the pegged appearance at the bottom. The cerebral tonsils where putting so much pressure there was no room for fluid. The picture on the left, you can now see the tonsils are round and there is room for flow.

No fluid build up and everything is healing well. Currently has no restriction. She can’t say another surgery won’t be needed in future, but not right now! We will follow up with his surgeon in the spring and yearly after that!

Finally some good news💜

We are being referred to a ENT to look at his ear nerves to see if that is causing his balance issues.