It’s been a bit rough getting back to reality after our Spring Break trip. We had such a wonderful time and saw some amazing sites. Stacy and I have talked about retiring in Tennessee for years…even before James was born…and this trip reminded us of that. It’s such beautiful country.
It’s been about a month since my last normal blog post (not counting the vacation post) so I have some catching up to do. Not too much has happened in the past month other than our wonderful vacation, but I still want to keep everyone up to date on the life of James.
Medical
Not too much to report here. As I discussed in the March 12th post, James had a new VNS put in on March 1st. On March 15th he went to the neurologist for a minor adjustment of the VNS levels. Even though this wasn’t the first time he’s had his VNS levels modified, I’m still amazed by the technology. I mean first of all, the fact that this little device implanted in his chest can decrease his seizures by sending an electrical pulse up a nerve in his neck and up to the brain is pretty wild. In addition to that, the doctor can take this “wand” and hold it over his chest where the VNS is implanted to check the status of it and make adjustments is pretty cool too. The VNS doesn’t even have to come out of his chest to do it.
Here is a picture of what some of the VNS settings look like. Please note that these settings are specific for James and if you or your child has a VNS, the settings will more than likely be different.
In other medical news, I’m always amazed at the amount that is billed to insurance for the year. I recently finished our taxes, and as part of that process, I go through all of our medical expenses to make sure we deduct everything we paid for out of pocket. I use Quicken software to keep track of our income and expenses, which makes it a bit easier, but I cross reference what I have in Quicken for medical expenses with the claims submitted to our insurance company to make sure I don’t miss anything. Check out the total amount billed to insurance for 2016:
$259,000. A quarter of a million dollars. Most of that was for James, and that’s just for one year! I always get a little bit pissy when I see how much is taken out of my paychecks for health insurance, but when I see that number, it doesn’t seem so bad. Yeah, insurance is damn expensive, but I couldn’t imagine not having it. And just an FYI, that amount “You May Owe” is not accurate. We only paid about half of that amount.
I know that a lot of you are probably saying that health care in the United States is out of control and it’s so expensive compared to other countries. I agree with you, but that’s a conversation for another day. Right now, I am just thankful that we have insurance.
Giving and Receiving
Having a child with a disability is expensive. Insurance helps a great deal, but there are some things that insurance doesn’t cover. We can either choose to do without those things or find other ways to get them. We try our best to make James’ life as easy and as comfortable as possible, so we choose the latter option whenever possible. We have a bank account that we use as James’ medical fund for medical supplies and equipment. All donations received from this blog, and any money James receives for birthdays and Christmas is deposited in this account. We have been extremely fortunate with the with the donations and support we have received over the years, but sometimes we still find ourselves needing to ask for additional assistance.
Several years ago we were introduced to the Tommy Finnegan Legacy Foundation, which is a Chicago area nonprofit. Tommy was born in 1988 and was not that dissimilar from James. He had cerebral palsy, couldn’t speak, was confined to a wheelchair and was tube fed. Friends and family members came together and organized a 3-on-3 basketball tournament to help raise money for his family to use for medical expenses. The tournament was such a success that it became an annual event. Although Tommy passed away in 2008 from complications from pneumonia, the Tommy Finnegan Legacy Foundation continues to hold the annual 3-on3 basketball tournament and fundraiser to help other Chicago area families. We are one of those families. In 2014 they gifted us a Leckey Mygo high low chair, which cost a few thousand dollars.
He still uses that chair but is almost getting too big for it. Whenever he outgrows it, we’ll pass it on to another family that can use it.
The Tommy Finnegan Legacy Foundation came through for us again this year when we asked them for help in purchasing a new stroller, which also wasn’t cheap. We received it toward the middle of March, just in time to take it on our Spring Break trip. It’s an Axiom Improve Push Chair, and you may have noticed it in some of the Spring Break pictures. Here is one of those pics when we were at Nashville Zoo:
The footrest was an optional add on for the stroller and was generously purchased by Stacy’s parents. We’ll hopefully get a few years of use out of the stroller, and as long at it remains in good shape, we’ll donate it to another family when James outgrows it.
The Tommy Finnegan Legacy Foundation has been very good to us, and although money is often tight, we feel that it’s important to give back. We’ve been attending their annual fundraisers for years and always help them with their fundraisers by purchasing shirts and raffle tickets. If you’re in the Chicagoland area and are interested in attending one of their annual fundraisers or just want to make a donation, please check out their website here:
https://www.tommyslegacy.com/.
They just had this year’s fundraiser this past Sunday so you may have to wait a bit for them to post about next year’s event.
In addition to stroller we received from the Tommy Finnegan Legacy Foundation, James also got a cool new pair of shoes. Stacy bought a pair of plain, black Converse shoes and sent them off to a nice young woman who donates some of her spare time to Peach’s Neet Feet, which is a non-profit that custom paints shoes for children with disabilities and life threatening illnesses. Stacy posted the unveiling video on James’ Facebook page, which I have also uploaded to YouTube:
How cool are those shoes?! Thank you Peach’s Neet Feet, and the woman that painted the shoes. They look awesome!
St. Patrick’s Day and Remembering Jackson
March 17th and 18th are a pair of days with conflicting emotions. First we have St. Patrick’s Day on the 17th with the whole “Luck of the Irish” thing. James has quite a bit of Irish in him from Stacy’s side, and we are very lucky to have him in our lives.
Then there’s Trisomy 18 Awareness Day on the 18th. For those of you who don’t know, we lost our first son Jackson to Trisomy 18 on November 17th, 2008. Although he passed away before he was born and we never got a chance to meet him or hold him, he will always hold a special place in our hearts. Right next to that special place is a hole that can never be filled.
So on the one hand we’re lucky to have James, but we had to lose Jackson in order to have James. You see what I mean about having conflicting emotions? If Jackson didn’t have Trisomy 18 and was born, then James wouldn’t be here. We wouldn’t have met all of these wonderful people as we navigated through this crazy world of special needs. We wouldn’t have realized how much we take for granted. Just the simplest things, like getting up and walking to the bathroom, or going out for a nice juicy hamburger…things that James will never be able to do or experience.
We will never fully understand the reason that Jackson was taken from us, or why James has so many disabilities, but I’d like to think that it’s because of the reasons I mentioned above. To meet the people we wouldn’t have met otherwise, and to teach us a lesson about taking things for granted.
Regardless of how I try to justify it, it’s just not fair that we had to lose one child and have another with significant medical needs to teach us these lessons. I wonder if the supreme being that made these decisions had an easy time making them, or if they carry some guilt. Maybe we’ll find out some day. Until then, all we can do is go about our lives, and give James the best care and life that we can.
If you don’t know what Trisomy 18 is and want to find out more, the Trisomy 18 Foundation has a lot of good information on their website.
I don’t want to end on a sad or depressing note, so let me end this post with a picture of crazy hair James:
