There are some very good things happening in our lives right now.
Gabriel is still seizure free! The medicine weaning is going well so far. No breakthrough seizures and we noticed his eyes were brighter within the first 2 days! Hooray!

We have also found a new food he likes. He calls them his crispy crunchies. We microwave 9.5 grams shredded cheddar cheese with 9 grams of butter until most of the butter is absorbed into the cheese. Then we measure how much butter did not soak into the cheese and give him that amount to eat with the crunchy cheese. HE LOVES IT! It is so great to hear crunching noises coming out of his little mouth!

Mostly importantly for this blog, we want to give a HUGE, HUGE, HUGE Thank you to our friend, Helen Ransom of FACES YOU LOVE PHOTOGRAPHY, and these amazing families, who donated to a fundraiser in Gabriel’s honor. They raised over $1000 to our family! We are overwhelmed with gratitude!

We have a print of this picture that I can’t wait to hang up in our home, as a visible reminder of how God uses people to touch and bless the lives of others.

I cannot say enough about Helen as a person and a photographer. If you live in the Kansas City area, I cannot recommend her enough. She does so much more than just click the camera lense. She works closely with her clients to get lasting meaningful images.  Check out her website and blog at www.facesyoulove.com

I am proud to say Gabriel was one of her first clients as a professional and he did not make it easy. He spent most of the time running around and refusing to look at the camera. She still managed to one of my all time favorite shots of our boy.

We are hoping and praying his eyes can be that bright again! 🙂

We have made it over a 100 days without a seizure with no external cause. (The small one in May was a direct result of antibiotics).

We had Gabriel’s 3 month appointment with his team on Wednesday. They were very glad to hear that we had been seizure free for so long. We knew after 3 months with a seizure that we could start to ween treatment—either change diet or pull meds. We were hoping for a diet change because we having a very hard time getting him to eat again, somedays he will only have a couple hundred calories. We got a quick, big NO on changing the diet but a quick big YES on weaning a medication. So over the next couple months we will slowly lower the dose of one of his medicines. The ultimate hope would be to wean off medicines and go off the diet and stay seizure free. It is possible and has happened for some families. The diet is getting quiet a bit harder lately for a variety of reasons, it seems very hard for him to sit at a table and eat with other people now, he is also doing things like putting banana’s still in their peel in his mouth and trying to take a bite. He has been so good for so long that we haven’t had to keep all of the food under lock and key but that is no longer the case. It really stinks having to tell your children, “no you can’t have that” when he is eyeing fruit. For now we are sticking to it delighted at the lack of seizures and excited about giving him less medication.

Gabriel did not have surgery today! This is big news because a few months ago we had set today June 1st, as the day Gabriel would have VNS surgery. He did not have surgery today because he has only 1 small seizure in the last 3 months! Yippee! We are prepared to have the VNS surgery in the future, if he needs it….but he did not have surgery today. Can you tell I am glad he did not have to have surgery 🙂

Instead we decided to celebrate by purchasing last minute tickets to ride Thomas the Train. It was so nice to have time together as a family doing something just for fun!

Our sweet observer was taking in all the sights! (he didn’t care about pictures)

He took it all in with big smiles! He especially liked when the conductor came by to punch his tickets.

He held onto all of tickets like they were gold!

Bye! Bye! Thomas.

It was a great day. We really appreciate getting to do normal kid things with our little man. He still doesn’t have a ton of energy or stamina for big events.  We are learning to go on the adventures and enjoy them for what they are. He loves them no matter what and talks about them for a long time afterward.