Fundraiser News
As I mentioned in last week’s post, Stacy had a phone interview with a local radio personality to discuss the fundraiser that we’re currently having to try to raise money for James’ medical expenses and a van. Unfortunately, it does not look like the interview is going to make it onto the air because the radio station was just purchased by another company. In light of this news, we were discussing ways to raise awareness of the fundraiser. Maybe we should do something crazy like this: https://www.indiegogo.com/projects/who-gives-a-crap-toilet-paper-that-builds-toilets#/
Our fundraiser did get some publicity thanks to The Ryan and Jenny Dempster Family Foundation. They posted about James on their Facebook page: https://www.facebook.com/notes/ryan-and-jenny-dempster-family-foundation/get-james-a-new-ride/425036570869042
One of Stacy’s friends told her that she is being too pushy and looking needy because we are asking for funds to buy a handicap van. I guess we are a bit needy, but we’re not trying to be pushy. We’re just looking for help with getting a wheelchair accessible van for James. He is currently 33 pounds and 36 inches long, and still sitting in a car seat. Sooner or later he will outgrow the car seat. Then what? He will be in a wheelchair. Are we supposed to take him out of the wheelchair and just strap him into the backseat in the car? He has no muscle control and would fall over. Believe me, we don’t like asking for money, but we’ve been living off of one income since James was born and we just don’t have the income or savings to buy a van. If we had the money, we wouldn’t be asking for donations.
Sorry if this seems too pushy, but: https://www.indiegogo.com/projects/let-s-get-james-a-new-ride#
Neurology Appointment
A few weeks ago James had an MRI and MEG scan to see if they could determine if his seizures were localized in one area of the brain, and if he could be a candidate for brain surgery. On Thursday we had an appointment with the neurologist to go over those results. I don’t go to all of James’ appointments because of work and most of the appointments are just checkups, but I took a half day off to go to this appointment because it was pretty important. We had been waiting for weeks to go over the results of the brain scans. Guess what? There was a big storm last night that knocked out the hospital’s computer system and the doc couldn’t pull up the MRI or MEG scan. Seriously?! He had the MEG scan on June 6th and the MRI on June 7th. It is now the 3rd week of July. You couldn’t have looked at them prior to the morning of our appointment? And couldn’t you have at least called us to let us know so that I could have gone to work?
It wasn’t a total waste, though. I like to be involved in James’ life when I can be. We discussed making some changes to the seizure meds that James is taking. We’re going to start weening him off of one of the meds and increase the dose of another med. The doc also briefly discussed something called a Vagus Nerve Stimulator (VNS) which might be an option for James to help control his seizures. It’s a device that would be implanted in James and sends brief electrical impulses to his brain. Sounds very interesting, but the doc wants to wait until he can review the results of the MRI and MEG scans, before we discuss the VNS further.
First Rock Show
A friend of Stacy’s is a bit of a groupie for a local rock band, 7th Heaven, and they invited us to a show they had today. We got backstage passes, and they even gave James a shirt. Before the show, a couple of the band members spent some time talking with us and were genuinely interested in James and his medical issues. Really good guys. It was a bit hot, but we think James had fun at his rock show.
