May 10th Update

Hi everyone! Today is officially two months post surgery! This morning we went to Children's Hospital Colorado to meet with Dr. Nelson, Patrick's epileptologist that has been with us on this journey since day one. The purpose of this was just to touch base, get Dr. Nelson all caught up on how surgery went, and make a plan going forward. We plan to stick with Dr. Lam and her team in Chicago for the first year post-op, but it brings us comfort knowing that we have Dr. Nelson in our back pocket if any sudden issues arise. Patrick will also likely need yearly neurology appointments for many years to come, and as he gets older we will likely continue his care here in Denver. It was fun to see Dr. Nelson's reaction to how well P is doing!

Other than that, no big news to report. Patrick is working so hard at physical and occupational therapy 4 times a week. He is gaining new skills and his personality gets bigger each day!

We celebrated his "Hole in One" birthday party last weekend. It was the perfect way to celebrate his first (crazy) year of life!

Patrick is starting to wean off the Diamox, which is the medicine that made his head swelling go down. I am optimistic that the swelling won't come back, but we are keeping a close eye on it for now!

The next big step in this post-surgery journey probably won't happen for a few months. Once his body has had time to fully heal, we will fly back to Chicago for an overnight EEG. We are shooting for sometime in August. This will hopefully confirm that seizures have halted with the surgery. If all goes well, from there we will start weaning off his seizure medication. After that we should be in the clear of doctors and medication outside of the typical one year old doc appointments!

As always, thank you for being so invested in Patrick's journey. We will continue to update as we have updates to give.🤍