I have some big news to share. Stacy and James moved out two weeks ago. Before you get all freaked out, it’s not what you think. Stacy and I did not have a fight, we are not separating, and we’re not getting divorced. There’s actually a really cool story here.
As some of you may know, Stacy has been a Thirty-One Gifts consultant for the past six months or so, trying to make a little extra money to help out with our finances. In February, a woman was trying to buy a bag through the Thirty-One website and was having some issues. The woman contacted Thirty-One who then directed her to a consultant in her area, which happened to be Stacy. Stacy helped her complete her order, and as they were talking, the woman mentioned that she and her husband own a home remodeling company.
Let me back up for a second here. James is currently about 40 pounds and 4 feet long. Stacy is 5’9” and I am 6’2” so the odds are pretty good that he is going to be tall, too. We currently bathe him in the bathtub in the bathroom across the hall from his bedroom, but at some point, getting him in and out of the bathtub is not going to be feasible because of his size. For the past several months we have been discussing and researching options of what we could do to make bathing James easier. We came across a lot of possibilities, but very few of them looked like they would work for the space we had available, or our budget.
Back to the story…
When Stacy found out that the woman she was helping with her Thirty-One order happened to be in the home remodeling business, she took the opportunity to ask a few questions about making a bathroom more accessible for James. As it turned out, the woman lives less than five minutes away from us and has the same style house that we do. She and her husband came over and discussed options with us and gave us some rough estimates on cost, all of which were out of our current price range. We thanked them for their time and told them that we would need to discuss the options they presented, and figure out what we could afford to do. A few weeks later Stacy got a call from the woman with some unbelievable news.
Their remodeling company is a member of the Greater Chicagoland chapter of the National Association of the Remodeling Industry, which occasionally does special projects for families in need. At their March association meeting, the woman and her husband brought up our bathroom dilemma. The association board voted in favor of taking on our project…at no cost to us! Are you freaking serious?!
The reason Stacy and James moved out is because our bathroom renovation started on the 15th. They are staying at a hotel not too far from the house, while I am still living at home. It’s just easier for me to get to work, and to keep tabs on how the renovation is going. They really can’t give us an estimate as to when the bathroom will be done because all of the people involved are doing this on their own time and need to work around their other jobs and projects. It kinda sucks for Stacy and James to be stuck in a hotel, but we are getting a free bathroom renovation, so we really can’t complain.
Once the bathroom is completed, I will post pictures, so stay tuned.
Father’s Day
We had another nice Father’s Day get together with Stacy’s side of the family last weekend. It’s kind of crazy to see how much James has grown. Here is a side-by-side pic of James sitting in Stacy’s dad’s chair. The pic on the left is from 2010, when James wasn’t quite 1 year old, and the pic on the right was from last Sunday.
Stacy and James made the pic below for me. Love you, too James. To the moon and back.
Neurology Appointment
James went to the neurologist on Friday for a checkup. The neurologist made another adjustment to his VNS (vagus nerve stimulator). He increased the intensity another notch and still has it set to go off every minute. The neuro told us not to worry so much about swiping the VNS with the magnet, because by the time we get there to swipe, the seizure is over. James’ seizures are really quick. Most of the time we don’t even realize he is having them. When he did the video EEG a few months ago, the EEG showed seizure activity, but we couldn’t visually tell that he was having them.
It’s quite remarkable how well this VNS device works. After trying so many medications, and combinations of medications, and the ketogenic diet, and the uber expensive ACTH injections, and continuing to watch helplessly as James’ seized, we’re pretty amazed at how effective this little device is at controlling the seizures. If you are interested in learning more about the VNS and VNS therapy, check out this link:
https://www.livanova.com/epilepsy-vnstherapy/en-us
Trying Out a Swing
After our pergola was completed, we had been thinking about the possibility of hanging a swing from it for James. This weekend we tried out one of the swings we bought. We’re not sure about this one. It was hard to get him into, and because James is unable to control his muscles, we were having a hard time getting him positioned properly so that he was comfortable.
We’ll be looking into other options for swings that might suit James better.
