47 days on the other side.

Hello Family and Friends,

It is crazy to think we've already been home the same amount of time we were in Philadelphia for Jaxon's surgery and inpatient rehab. We can't thank our family and friends enough for the continued check ins, phone calls and well wishes.

Coming home initially seemed like a dream, but having two kids under three with no routine brought us back to reality QUICK! Jaxon was so excited to reunite with his sister Hadley that there was no sleep for anyone for weeks.

After two weeks of a well-deserved therapy break, Jaxon transitioned to Childrens of Colorado Bridge Program in mid-January. This program involves intensive therapy three days a week. Similar to his schedule in Philly, he's participating in Occupational, Physical and Speech Therapy on Tuesdays, Thursdays, and Fridays. Morgan has been an absolute rockstar aligning his schedule with therapy along with a plethora of appointments, phone calls, and paperwork to ensure Jaxon is on the right track. She is truly taking on a full-time job with plenty of overtime to ensure Jaxon is set up for success in the years to come. Our family would truly be lost without her dedication and support!

We had our first Neurology appointment since being back last week, and it was really the first time Morgan and I were looking forward to an appointment with Jaxon. He's still walking with his orthotics, his receptive language continues to improve and he continues to be motivated to communicate with us. It was the first time we were both excited to show off his unbelievable cognitive progress. We left the meeting excited to start weening him off of one of his seizure medications, Vigadrone. This medication has not been Jaxon's favorite, and it comes with potential side effects... we couldn't be happier to be moving on from this medication soon.

At the end of the day, Jaxon continues to amaze us with his progress. There are still tough times every day, but Morgan and I are starting to feel like a normal family. The frustrations we share as parents with two kids under three seem to finally have gone from "were those seizures?", "is he regressing?", "who can help with Hadley if he is admitted to the hospital?" to finally ... "oh no, the kids have thrown golf balls into the toilet, and they got into everything in the office, now the printer isn't working." It's a refreshing and very thankful feeling to finally complain about the same things that other toddler parents experience.

For now, it's enjoying seizure freedom while trying to keep him on track with all therapies, early intervention, and starting to dial in his Individualized Education Plan with Pre-K registration.... did I mention Morgan was a rockstar?!?

Jaxon is more curious, he's more motivated, and for now... HE'S HEALTHY! It's been an absolute joy to see him develop since surgery. Our road will never be easy, but these last couple weeks have been some of the best we've had since his diagnosis.

Thanks again for all the love and support,

Morgan and Ben.