Van Fundraiser
As you may know, our van has been having some maintenance issues lately, and it’s starting to make us a bit nervous. I don’t want to end up in a situation like we were a couple of years ago when the water pump in my car broke and was going to cost over $4,000 to fix—almost as much as I would get for the car if I were to trade it in. I made the hard decision that it wasn’t worth repairing and broke down and bought a newer car. We had to pull some money out of our savings and got a little help from family to make it work so that the car payment was a number that I would be comfortable with.
I read somewhere in the not-so-distant past that the average car payment is something like $800 a month. That’s crazy! The payment on the car I was forced to buy a year and a half ago is less than a third of that. Much more reasonable on a depreciating asset. Now here we are looking at the realization that replacing our wheelchair accessible van is going to cost somewhere in the neighborhood of $70,000 to $90,000. There is no way we can come up with enough money for a downpayment to make the monthly payments remotely close to the $230 that I’m paying for my car.
I really hope my calculations are wrong, but I ran some rough numbers through Calculator.net’s Auto Loan Calculator and came up with a car payment of around $1,150 per month! That’s about what we pay for our mortgage.
The above calculation assumes we can find something slightly used for $70,000, put down $10,000 in cash, can get $10,000 for our current van, and have a 6.25% interest rate. The title, registration, and other fees of $2,800 were already in the calculator so I kept that number and included it in the loan. That gives us a car payment of $1,142.62. There is no possible way that we can afford to pay that much with our current incomes. I had thought about getting a second job to make some extra money to put towards a van, but that’s not really possible with Stacy’s schedule. She plans her dog walking jobs around when I am home, which is typically nights and weekends.
A few friends of ours have offered to set up another fundraiser for us to help raise money for a new(er) van. Stacy is all for it, but I’ve been a little reluctant. I hate asking—or begging—for money. As the man of the house, I should be able to provide for and take care of my family. Asking for money makes me feel like I’m not doing that. When I shared these feelings with a friend recently, she told me to stop being an ass, most people in our situation wouldn’t have the means to buy an $80,000 van, and that it’s okay to ask for help. I had to laugh at that last part because she has a hard time asking for help, too, but she’s right. Most families with medically fragile children like James probably don’t have two full-time incomes. If they are lucky—like we are—they have one parent working full-time, and the other having the flexibility to work around their kids’ schedule.
I still don’t feel totally comfortable with asking for money, but I really don’t know any other way. I need to put my feelings aside and do what’s best for our family right now. I don’t know many of you, or your situation, but if you’ve been following James’ story because you are in a similar situation with a special needs, or medically fragile child, I do not want you to feel obligated to donate to our fundraiser. Focus on your family first. If you have the means to slip us a couple of dollars, we would appreciate it, but please don’t feel like you have to. What you can do instead is share this with your family and friends. Thank you.
https://helphopelive.org/campaign/21730/
And thanks to all of you who have already donated. You have no idea how much this means to us.
Valentine’s Day
James stayed home from school on Valentine’s Day because he wasn’t feeling good. He’s been having some respiratory issues lately, which is why he is on oxygen in the above picture. I will explain more about in the Health Issues section below.
I ordered Stacy a nice bouquet of fruit from FruitBouqets.com, which is part of 1-800-Flowers.com, and scheduled it for delivery on Sunday the 12th to avoid the upcharge for delivery on the 13th or 14th. I paid an extra $5 for a balloon. It showed up as scheduled on the 12th, but the balloon was missing. I contacted them just expecting a refund on the $5 balloon. They went way beyond that. They offered to send out an entire new bouquet—with balloon—for delivery on the 13th, AND a $20 coupon to use towards a future order! All because the previous order was missing a $5 balloon. Talk about incredible customer service! I never thought I would say this, but I’m kind of sick of fruit now. We just couldn’t let it go to waste.
I suppose you want to see what the bouquet looks like. Unfortunately, we didn’t take a pic after she opened it, but here is a snippet I took from their website:
The I <heart> YOU is all chocolate covered pineapple.
Health Issues
As I mentioned above, James stayed home from school on Valentine’s Day because he wasn’t doing well. He has been having more frequent respiratory issues where he struggles to keep his sats up. There has been no indication that it’s pneumonia. His lungs have sounded clear, and there hasn’t been a fever, which are the two key indicators that he has pneumonia. So, what else could it be?
One of our thoughts was an airway blockage because of the way his tongue sits in his mouth. His lower jaw is narrow, so his tongue doesn’t sit flat. Could that be causing an issue? Stacy put a call into the oral surgeon who removed a bunch of James’ teeth in 2018 to get his opinion and to see if there was a way we could widen his lower jaw to make more room for his tongue. We drove 45 minutes to meet with him at his office, only to find out that he is no longer associated with the hospital where he removed James’ teeth. Because of some corporate BS, they kicked all of the oral surgeons out of the hospital, so the surgeon no longer has a place to perform major oral surgeries. This probably would have been nice to know prior to driving 45 minutes to see him, only to turn around and drive another 45 minutes back home. He did refer us to another oral surgeon who is affiliated with another hospital that we had never been to before and was much farther away.
There is another possible cause for James’ respiratory issues that we’ve been thinking about. His VNS. We’ve noticed in the past that when he first has the VNS turned on after a replacement, or when there is an adjustment, he sometimes kicks up more secretions, needs more suctioning than normal, and has some breathing issues. I suppose this is due to wire that runs from the VNS in his chest and attaches to the vagal nerve in the neck. It has to be a bit uncomfortable to have that little jolt of electricity running up your neck. He eventually gets used to it and his secretions return to normal.
He had a new VNS put in back in early September, had it turned on two weeks later, and the neurologist increases the “dose” in mid-December. He started having respiratory issues in late December or early January, so that VNS adjustment could easily be the culprit. If that’s the case, then there is not much we can do other than wait it out. He will eventually get used to it and the respiratory issues will go away. It normally doesn’t take this long, though. The cold weather probably isn’t helping.
In addition to his respiratory issues, we’re still dealing with his eye issues as well. If you recall from the previous post, we had taken James to the ophthalmologist for a routine checkup and were discussing options to help his eyes. Because he doesn’t close his eyes or blink, they are constantly exposed to the contaminants in the air, and don’t get naturally lubricated like they normally would by the eyelids closing around them. This is causing a film to develop on his eyes that Stacy occasionally peels off.
The eye doctor discussed a procedure called tarsorrhaphy, in which the corners of the eyelids are sewn shut. This would decrease the amount of eyeball that was exposed to the elements. The eye doc doesn’t do this type of procedure, but placed a call to an optical surgeon that did. We saw the eye doctor on January 21st, and we have yet to hear from the optical surgeon. We may not need to go that route anyway.
Shortly after the eye doctor appointment, Stacy bought James a pair of ski goggles to wear to see if they would help keep stuff out of his eyes. Between the goggles and use of eye drops to keep his eyes moist, the improvement has been quite amazing. Take a look for yourself.
On January 23rd his eye was red and irritated, and you can see the cloudy film over his pupil. A month later, the redness and film are gone. Lesson learned: not every issue needs to be dealt with through a medical procedure. Sometimes there’s a simple solution to the problem.
School Spirit Awareness Week
Last week they had a School Spirit Awareness Week. They’ve had several of these Spirit Weeks over the years where this day was “Wear Red” and this day is “Hat Day”, but I think this is the first time they’ve incorporated Awareness into a Spirit Week. I think this was a really good idea to make the students aware of some of the disabilities that their fellow classmates may have.
Monday: Down Syndrome Awareness (Blue and Yellow)
Tuesday: Epilepsy Awareness (Purple)
Wednesday: Autism Awareness (Tie-Dye)
Thursday: Apert and Marfan Awareness (Red)
Friday: Fragile X Syndrome Awareness (Teal)
Cerebral Palsy Awareness Month
While I applaud the school for raising awareness for a few disabilities, there was one disability that hits close to home that wasn’t included in their School Spirit Awareness Week: cerebral palsy (CP), especially since March is Cerebral Palsy Awareness Month. I suppose that if they would have included CP, then they would have had to bump something off the list, like Apert and Marfan, or Fragile X; three syndromes that I didn’t know anything about until now. I guess by not including cerebral palsy, it allowed me—and the readers of this blog—to learn something new.
Those of you who have been following James on Facebook, through this blog, or both, have probably seen the daily CP facts posted every year throughout the month of March…until this year. Stacy found a new(er) set of facts that she is using this year. I say “new(er)” because Firefly actually posted them on their Facebook page in 2017. For whatever reason, they didn’t post facts for every day of March that year, and Stacy has been trying to find the missing ones over the past couple of years. She was able to find most of them and decided to use them this year. In place of the ones that she is still missing, she will be posting another cerebral palsy related image. As I have done in the past, I will be creating two separate Cerebral Palsy Awareness Month posts here. The first one I plan to post on the 15th, and it will include the facts (or images) for days 1 through 15. On the 31st I will post the remainder of them.
Stacy is also raising money for the United Cerebral Palsy-Center for Disability Services. Twenty percent (20%) of the proceeds from sales in her Thirty-One party will be donated to the United CP Center. If you’re looking for a gift for a spring holiday, birthday, anniversary, graduation, or end of the school year, head on over and check it out. If you’d rather donate directly to the United Cerebral Palsy-Center for Disability Services, their donation page can be found here.
