4th of July
After having a bit of a lull for a month with not much going on, these past couple of weeks were a little bit busier, starting with going to a 4th of July parade in a neighboring town. James doesn’t regulate his body temperature like most of us can, so we do our best to keep him cool when it’s hot outside. We have an umbrella that clamps onto his wheelchair that seemed to help a bit.
We only stayed for about half of the parade before we decided to head home and get James back in the cool air conditioning. We think James enjoyed the parade. The only part that he didn’t seem to care for (other than the heat) was the wailing firetrucks. I think the loud sirens hurt his sensitive ears. He seemed to enjoy the bands and colorful floats, though.
The following day, James’ class had their own 4th of July parade at school.
Seizure Drug Study
Last week we went down to Rush to get all of the preliminary testing done before James starts a drug study for a seizure medication. Long ass day! Left the house at 7 am, got to the hospital at 7:45, EEG for his brain, EKG for his heart, bloodwork, and we finally left the hospital at 2:30. Poor kid was zonked by the time we left.
Assuming everything checks out, we’ll be heading back to hospital in August to pick up the medication and officially start the trial. I won’t mention what the drug is because I don’t know if there is anything in the fine print that says we can’t talk about the drug. Does anybody read those things anyway?
I also think that I am going to go back, look over all of the previous posts and remove any mention of which drugs James is on. I am not here to promote, bad mouth, or advertise any medications. Besides, medications affect people in different ways. Just because a medication didn’t work for James, I don’t want people to think that it won’t work for their child. The opposite is also true…if a particular med did work for James, there is no guarantee that it will work for your child.
With that being said, I will say that the drug that James will be starting next month is currently only approved for children and adults age 12 and older. This study is to test the drug in children under 12 years old.
One of the things we’ll have to do during the course of the study is to keep a journal of James’ seizures. We haven’t looked too much yet, but we’re hoping to find some sort of phone app that will allow us to track the seizures.
Time is Precious
We’re really hoping this drug works for James. The kid needs relief from these seizures. His parents need some relief, too! Watching him suffer all of these years really takes its toll on you. Some of the medications and treatments that he has been on have provided some relief, but oftentimes it was short-lived, and the seizures came right back. Fortunately, James is non-ambulatory so at least we don’t have to worry about him hurting himself during a seizure. Others are not so lucky. A couple of weeks ago, the son of one of Stacy’s friends fell during a seizure and had internal bleeding. Fortunately, it sounds like he is going to be okay, but it could have been a lot worse.
There is always the chance of James having SUDEP (sudden unexpected death in epilepsy) take him away from us. Either that, or pneumonia. We don’t know how much time James has left. Being a part of the special needs community, we’re constantly reminded of how fragile life is and how precious time is. We go from day to day thinking that there will always be a tomorrow. Most of the time we don’t know when that tomorrow won’t come. Other times we do. Another special needs mom that Stacy knows is preparing to say goodbye to her daughter. She was a fighter, but her body is getting tired and is ready to get some rest. I am not going to mention their names for privacy reasons, but please say a prayer tonight for all the kids around the world (and their families) who are suffering from whatever medical condition they may have. And remember to kiss your own kids goodnight every night. You just never know if their tomorrow won’t come.
Randomness
I can’t end a post on a sad note so let’s add some humor and good things.
About a week ago, James got a delivery of medical supplies and formula. I opened a case of formula to put away and this is what I found. I have OCD. Can you tell me what is wrong with this picture?
James got a metal for completing Special Olympics Day at school last week:
Our township has a wonderful Disability Services department that puts on several events for those in the community with disabilities. They had a picnic on Saturday with games that followed the “Under the Sea” theme. James caught himself a fish cookie. Since he was unable to eat it, he let mommy and daddy split it.
