I made a promise to myself—and to you, the fans—that I would try to do a better job at keeping up with blog posts and try to write one every week, or every other week. And I already screwed this up! Yesterday marked week two since the last post, but since it was Mother’s Day, I was unable to get it done. I started writing yesterday morning because we were planning on getting together with Stacy’s side of the family for Mother’s Day dinner and knew I probably wouldn’t have much time to write when we got home.

That turned out to be a smart move because I wasn’t able to get anything written when we got home. Without going into all the details here—there will be a separate post for that—James has been having some sort of reaction to some vaccinations he received this past Tuesday. We probably should not have taken him out of the house yesterday for Mother’s Day dinner, but we did. We ended up rushing home shortly after we got there because he had taken a bad turn. Rest assured that once we got him home and comfortable in his bed, he started to come back around and stabilize. Once I have this post completed, I will start doing a writeup about this reaction/illness James has been having from those vaccines. Until then, remember that you can always check in on him at his Facebook page.

 

May is Pediatric Stroke Awareness Month

I know the month is almost half over, but did you know that May is Stroke Awareness Month? My dad had a stroke and passed away about two months before James was born. Because that was my only personal experience with a stroke, when the doctors told us that they believe James had a stroke in utero, my first thought was, “oh God, he’s going to die.” But here we are almost five years later, and James is still here. His stroke caused some pretty significant damage to his brain, but he’s a survivor. He will have struggles and need to be taken care of for his entire life, but as long as Stacy and I are alive and able, we will do everything we can to help him become the best version of himself that he can be.

 

 

“About 3,200 strokes occur each year in children under age 18. Although strokes are among the top ten causes of death in childhood, family members and doctors often are slow to recognize symptoms.”

~ Dr. Jose Biller

 

In adults, the symptoms of a stroke are:

• Weakness of the face, arm or leg, especially on one side of the body.
• Numbness or tingling of the face or one side of the body.
• Confusion or trouble understanding.
• Trouble speaking.
• Trouble seeing in one or both eyes.
• Trouble walking; dizziness; loss of balance or coordination.
• Severe, unusual headaches.

Unfortunately, these symptoms are hard, if not impossible, to detect in infants and young children because they can’t express how they’re feeling. If James were to have another stroke, I don’t think we would even know. He is non-verbal, has pre-existing neurological deficits, and doesn’t have control of his arms and legs. They say that time is of the essence when someone is having a stroke. The sooner they get medical treatment, the better. It scares me to think about what would happen to James if he had another stroke.

 

Van Has Been Ordered

Buying a wheelchair accessible van is a lot different that going down to your local car dealership and buying a car. First of all, you can’t just go down to your local Ford, Dodge, Honda, or whatever dealership and look at vans modified for wheelchair access. They more than likely won’t have one. You can buy a regular van (new or used) at a local dealership and then take it a company that specializes in a conversion to make it wheelchair accessible, or you can go to a company or dealer that sells vehicles that are already modified to accommodate wheelchairs. We chose the latter option and went to Mobility Works, which is about 35 minutes away from us.

We went down there a couple of weeks ago to look and see what was available and what our options were. They had a few vans—both used and new—in stock that we were able to check out. There were three main things we had to figure out: the model of the van we wanted, if we wanted to buy a new or used van, and if we wanted a side-entry or rear-entry ramp.

As far as models go, there are really only 3 options: Dodge Grand Caravan, Honda Odyssey, and Toyota Sienna. Pricewise, they are about $10,000 apart from each other with the Caravan at around $50,000, the Sienna at $60,000 and the Odyssey pushing $70,000. Yeah, I know! Expensive, right? You’re paying for the van, plus however much it costs to modify it. Using the Caravan as an example, the van itself might cost $25,000 to $30,000, but the modifications add another $20,000 on top of that.

If you want to look at it another way, the price of a modified Caravan is almost double the price of an unmodified one. Note that these prices are for a new van. Used prices would be cheaper and would vary depending on the year of the van, the mileage, and the options that the van had. Stacy’s last two cars were Dodges so she thought that it would make sense for her to get another Dodge. Thanks to all of our generous donors, we made enough at the fundraiser that we can afford to buy a new van.

The last main decision we had to make was if we wanted the ramp to come out of the side door, or out of the back door. This took a little bit of thinking. Most parking lots have handicap parking spots with space on the side for a wheelchair ramp. But what if there wasn’t any handicap parking, or if there was, but all of the spots were already taken? How would we get James out? If we had a rear-entry van, this wouldn’t be a problem because we could park in any spot and wheel James out of the back of the van. This, however, poses a bit of a safety issue. This would mean we would be wheeling James into the aisle where we would have the potential of getting hit by a car. What if someone wasn’t paying attention or if they misjudged and hit the ramp?

Another thing we thought about, too, was the fact that we like to take road trips. With a rear-entry van, we would need to put James in first, and then load up all of the stuff in the back of the van. Getting him out would mean unloading most of the stuff first, and then getting him out. With a side-entry van, we wouldn’t have that problem. We could load up all of our stuff first, and then get James into the van. And if we stopped somewhere, we wouldn’t have to unload anything to get him out. For us, it made more sense to go with the side-entry option.

Because we were buying new, we did have some additional choices to make: the trim level of the van, what options we wanted, and probably most importantly, what color. Stacy wants the van to be red, so it will be red. Option-wise, we kept it pretty basic, but did opt for the upgraded radio with navigation.

With all of the decisions made, the only thing left to do was to order it. On Wednesday afternoon Stacy signed the paperwork and put a 10% deposit on our new van. Now we wait. The salesman told us that it should take 4 to 6 weeks for the van to come in. I’m going to keep saying this, but thanks again to everyone that made this possible!

 

Make-A-Wish

I think I mentioned this in a previous post, but someone had nominated us to have a wish granted by the Make-A-Wish Foundation. We had given this a lot of thought, and it was pretty hard for us to come up with something.

We’ve heard all of these wonderful stories of families going on vacation to Disney World, or some other cool place. We thought about it, but we weren’t sure how much James would get out of it. Mentally, we just don’t know. Add to that trying to figure out how we would get from Chicago to Disney World. We couldn’t imagine how much work it would be to take James, and all of his stuff, through the airport and onto a plane. Then we would have to figure out what sort of transportation we would need when we got there. We are in the process of buying a van, so that would be an option, but again, we couldn’t imagine driving from Chicago to Orlando. I figure it would take us probably two, maybe three days of driving to get there, another two or three days to get back home. How much time would we actually spend at Disney World? So, we ruled out any sort of trip pretty quickly.

Okay, so what other sort of wishes have people been granted? A bedroom renovation? We think his bedroom is fine the way it is. He doesn’t play with toys so it wouldn’t make any sense to turn his room into a bedroom/play space. How about a bathroom renovation? The bathroom that is right across the hall from his bedroom has a bathtub. It would be nice if we could get rid of the bathtub and put in an accessible shower. Something that we could roll him into to bathe him instead of picking him up to put him in the tub and then lifting him back out. Hmmm. That’s a possibility.

Ah, but we had a better idea. We have a nice sized backyard with a concrete patio. For his last couple of birthday parties, the kids enjoyed playing in the yard, while the adults sat and talked on the patio. Unfortunately, James’ birthday is at the end of August when it’s still pretty hot and humid. Our patio isn’t covered so it’s too hot for him to be out there for too long. His body can’t regulate temperature like the rest of us can. We started thinking that it would be nice to have some sort of attached/permanent cover over the patio so that James could spend more time outside without being too hot. We did a little bit of research and found a design that we thought might work.

A woman from the Make-a-Wish Foundation came over a couple of weeks ago to discuss what our ideas were. We gave her a printout of the patio cover that we found, and she seemed to think it would be doable. In case they weren’t able to do it, she asked for a couple more ideas. Stacy thought that a special needs swing set might be nice, too. And I think we all know how much James likes Miranda Lambert, so Stacy mentioned that if Miranda wanted to stop by and meet James, that would be cool, too. Miranda, if you’re reading this, our door is always open for you.

Now we just have to wait and see what happens. Will we be getting a cover for our patio, a swing set, or a visit from Miranda Lambert? Will we get all of it? I will let you know as soon as we find out.

 

May Family Project

For school James was given a homework assignment: make some kind of bug and/or flower with recycled items. Since Stacy was an art minor in college, we put her in charge of the project. They decided to use an egg carton that we were going to recycle and paint a caterpillar and some tulips.

 

 

 

I don’t know why, but I didn’t get any pictures of the finished pieces before he took them off to school, but you get the idea.

 

Bad Ass Momma!

I have to give a HUGE shoutout to Stacy. A friend of hers, and fellow special needs momma, asked her if she would be interested in doing one of those crazy obstacle course races. After giving it a little bit of thought, Stacy said yes and signed up for the BADASS Dash. There were 25 obstacles spread over 4.4 miles and Stacy completed it in 1 hour and 38 minutes. Fortunately, her friend brought a camera, so we have proof that they did it. James and I are proud of our Bad Ass Momma!

 

 

 

 

 

 

 

Happy Mother’s Day Momma

On Thursday Stacy went to James’ school to get pampered a little bit for Mother’s Day. With a little assistance from his nurse, she got her hair, nails and makeup done.

 

 

 

 

I know he had help, but I still have to give him some credit. He did a much better job than I could have done.

 

Am I Done?

Okay, I think we are all caught up now. I have to do better at writing every week…at least try to write every week. I know that there will be times that life gets in the way so I might not always have the time or opportunity to sit down and whip out a post. If you want more frequent updates on James’ life, be sure to follow him on Facebook if you haven’t already. And keep those prayers coming. He’s still trying to fight off this reaction to vaccines he got almost a week ago. A more detailed post about this reaction will be coming soon.