This post will be an attempt to catch up on the past several weeks. Life’s been pretty hectic around here with the fundraiser, the Easter weekend trip to the ER, and just life in general, so I haven’t had much time (or energy) to write. I’ll try to organize it the best I can, but I do apologize if it ends up a bit all over the place.

New Chair

First things first. We’d like to send out a HUGE thank you to the Tommy Finnegan Legacy Foundation who purchased James a new chair.It’s a Leckey Mygo Seat, which we hope will work out well for him at school.

Tommy Finnegan, the Foundation’s namesake, was much like James. He was non-verbal, had cerebral palsy, mental retardation, and was tube fed. Family and friends came together to do whatever they could to help Tommy’s parents provide for his needs. This turned into an annual 3-on-3 basketball tournament, “Tourney for Tommy.” Although Tommy passed away in 2008 due to complications from pneumonia, the “Tourney for Tommy” fundraiser is still held every year to help families with children with special needs. We are blessed to be one of those families. A special thank you to all of those involved with this wonderful organization.

Annual EEG and a VNS Adjustment

The Wednesday before Easter James had his annual VEEG (video EEG) to check out his brain and to see if there needed to be any adjustments made to his VNS. He had been a bit juicier and gunkier the weekend before so we were concerned that he was getting sick and that we may need to reschedule the VEEG. Looking back now, we probably should have rescheduled it. If you missed yesterday’s post, we were out of town last weekend for Easter, we ended up taking James to the hospital up there, and an x-ray showed that he had pneumonia.

The neurologist said that there was a lot of abnormal brain activity, which is not abnormal for James. Not too many seizures, though, so the VNS is doing a pretty good job. James’ VNS was set to send a little pulse to his brain every 5 minutes; the neurologist adjusted it, so it now sends the pulses every 3 minutes. Unfortunately, we’ll have to wait until James is completely over this pneumonia to see if there is any improvement. His seizures reduce significantly (sometimes completely) when he is sick.

New AFOs and Glasses

After James’ short stint in the hospital last Saturday and finding out he had pneumonia, we obviously wanted to keep him home to recover. He had a previously scheduled appointment for an AFO (ankle foot orthotics) fitting that following Monday. Stacy called to cancel the appointment and reschedule, but the next available appointment was three weeks away. Not wanting to wait that long, Stacy was planning on taking James to the appointment, but then something amazing happened. The office called her back and asked that since we didn’t live that that far away, if it would be okay if someone came to us. “Really?! Sure!” It was a win-win for us. James got to stay home, and he got his new AFOs. His last pair of AFOs had a jungle animal theme. I’m not exactly sure what this design is called, but it’s more of a tattoo style.

He also got new glasses a couple of weeks ago. Although the eye doctor said his eyesight has improved so much that he really doesn’t need glasses anymore, we thought it would be a good idea to get him new glasses with a new prescription anyway. He doesn’t blink so they will provide a little protection from dust and flying debris from getting in his eyes. They have transition lenses so they will automatically darken when he goes out into the sun. You may recognize this picture from the Easter post.

James is the 2014 Face of Epilepsy

The Epilepsy Warriors Foundation has chosen James as their 2014 Face of Epilepsy.

“It is with great honor that we announce our 2014 Face of Epilepsy representing our Foundation and all the Children families we are striving to help in the Chicago area is James Fulkerson of Schaumburg, IL Please take a moment to read about James and share his journey. He is just one of the many children that inspire me everyday to do what I do.

These Children are gifts from God their parents are the greatest blessings from God. Thank you Stacy and Jeff Fulkerson so much!”

We’ve been told that there is a big fundraising gala this summer and we have been invited as special guests. It’s kind of exciting. I’ve never been to a fancy gala before. Do I need to wear a tuxedo? How cute would James look in a tux?

Van Shopping

We’ve started shopping for wheelchair accessible vans. This is a totally new experience. You can’t just go to your local car dealer and look around. There is a place about 35 minutes away from us, Mobility Works, that specializes in wheelchair accessible vehicles so that’s where we went. Our options a pretty limited. We can go with either a Dodge Grand Caravan, a Toyota Sienna, or a Honda Odyssey. Pricewise, the Caravan would be the cheapest, then the Sienna, and the Odyssey is the most expensive. And we need to figure out if we want a ramp that comes out on the passenger side, or out of the back. It’s a big investment, so we want to take our time, think about it, and make sure we make the right decision.

I know I have said this a million times already, but thank you to all of the donors that made this possible!

Planning for James’ Birthday

James will be turning 5 at the end of August, and I think Stacy has it all planned out already. Icing Smiles, a nonprofit organization that bakes cakes for those with critical illnesses, will be making James a cake, and has asked if we have a theme. Stacy is leaning towards a superhero theme, and I have to agree. After all James has been through in his short life, he really is our little superhero.

We had a fantastic face painter at the fundraiser that the kids really enjoyed. Stacy contacted her to see if she was available on August 24th for James’ party and she was, so Stacy booked her.

I wish we could invite you all, but sadly we can’t. James’ fanbase has grown so much that we couldn’t possibly find room for you all…or afford to feed you all. If we could, we would totally invite everybody.

I think we’re all caught up now. I’ll try my best to keep up with posting every week, or every other week.