Medical Stuff

James had been a bit off again with a high heart rate, congestion, and a little bit of a fever so Stacy took him to the pediatrician on the 31st. Everything checked out fine, but just as a precaution he started him on a round of antibiotics in case there was something brewing. After the appointment he went to school and had fun with mommy at their Halloween Party.

A few weeks ago, we had what I guess you could call a falling out with James’ neurologist. We were really pushing to get James on medical marijuana, but the neuro refused to sign the paperwork required by the state of Illinois in order to get our medical marijuana cards. There are several things required in order to apply for the card, one of which was signatures by two doctors. We had gotten the first signature from the doctor who reviewed his medical history at the clinic we went to to get started on the road to getting out medical marijuana cards. We hoped that James’ regular neuro was going to be the second signature we needed.

Even though the neuro refused to provide the second signature we needed, we still worked on getting everything else done…fingerprints, copies of James’ birth certificate, and the application was filled out. Surely, we could find a doctor that would provide the second signature. And we finally did. We sent everything off to the Illinois Department of Health and now we wait.

Even after we get the cards, we may not start James on marijuana right away. We just started seeing a new neurologist after the previous one basically kicked us out of his practice after we brought up starting James on medical marijuana. The new neurologist has some things that she wants to try, and James may be in one of her upcoming drug studies. If we still don’t see any improvement in his seizures, then we will revisit marijuana.

If you’re following James on Facebook, you have probably realized that November is Epilepsy Awareness Month from Stacy’s daily posts. I plan to do the same thing I did last year on this blog and have two Awareness posts…one with a compilation of Stacy’s posts for days 1 through 15 and a second one for days 16 through 30. And don’t forget about Stacy’s Thirty-One fundraiser benefiting the Epilepsy Warriors Foundation, which can be found here:

https://www.facebook.com/events/1749893725273794

Random Things

James had his first play date with a girl last week. She came over with her mom and they watched Mary Poppins while the moms talked. Stacy said that she was really cute the way she interacted with James. Stacy wanted him to look good for his first “date”, so this is the shirt she put on him:

Such a stud. He is growing up way too fast. Stacy said that they had fun and will probably do it again.

I am grateful that Stacy has found several special needs moms that she has become friends with. Other moms that understand the struggle of raising a child with medical issues that she can bounce ideas off of. They get together every so often and have a girls’ night. Last Friday they went out to one of those places where they supply the materials for you to make something artsy or crafty. This is what she came home with:

It took me a minute to figure out why she put “est. 2008”. We were married in 2004, and we would have become a family when James was born in 2009. So why did she put 2008? Ah, because Jackson passed away in 2008 before he was born, and he will always be considered our first son. That is why our family was established in 2008.

One of the difficulties we face having a child with special needs is that, depending on your child’s disability, you sometimes can’t go to your local store and buy him or her a toy. Stacy became aware of a non-profit organization called Santa’s Little Hackers that takes everyday toys, modifies them for kids with disabilities, and then gives them away. You need to fill out an application in order to get a modified toy and the cutoff for applications is Tuesday. Stacy submitted James’ application this morning.

I am going to finish this post with a grievance. This morning we went to an epilepsy conference at the Crown Plaza Hotel in the Chicago Loop. We were already running a little bit behind schedule because we usually do. When we got there, we found that there were not any handicap parking spots available. And it wasn’t because they were all taken by those with disabilities. Nope. The hotel was using them for valet parking! Are you f’ing kidding me?!

I asked one of the valets if all of the cars in the handicapped spots were valeted. He said that most of them were, and wondered why I was asking. I told him that they needed to move one of them so that we could park there. He looked over at our van and nodded and moved two of the cars so that we were able to park. One of the cars that he moved was parked in the actual parking spot, while the other was parked on the striped lines next to the parking spot.

This should never have happened. There are laws in the state of Illinois, and I presume in most other states, that make it illegal to park in a handicap stop without the proper license plates or placard. I understand that parking is limited, but it doesn’t make it right, so shame on you Crown Plaza.

If we hadn’t already been running late, I probably would have made more of a stink than I did. In retrospect, I probably should have. We are not just advocates for James and his disabilities, but we should advocate for anyone with disabilities.