Our final week before Thanksgiving break was a busy one! Josh and I have been email and calling people trying to figure out if we qualify for financial assistance for a lift system, wheelchair accessible van, or a bathroom remodel. We've been denied left and right. It's beyond frustrating. Josh did have some luck with getting Theo on the PUNS list. We have an appointment set up after Thanksgiving to video chat with a social worker and she will decide if Theo qualifies.
Monday, November 14th:
I sent Theo off to school on the bus and then went into the basement to start my new weightlifting program. It's pretty hard and involves using dumbbells, kettlebells, two types of resistance bands, AND body weight. The first workout kicked my booty and I was sore, but I still managed to do a quick HIIT workout on my bike afterwards.
I picked Theo up after school and took him to PT. Ms. Jess said Theo had a good day and it seems like he was more alert.
[Napping on the way to PT]
Josh and I have been brainstorming about what to do for a home lift system. The Hoyer lift CAN work, but it's a last resort. Theo's PT has this big eye bolt in her ceiling and it's strong enough to hold an adult and a child on a swing. I send a picture to Josh and ask him if it would be plausible for our family room. We can attached a pulley system so we can hoist Theo up and put him in a chair. If that works we can also put one over his bed. Home health lift systems can cost anywhere from $5,000 to $50,000. Since buying the accessible van is our priority right now, we are going to try to SAFELY install a lift system ourselves.
I bought these little floor protectors for our kitchen and dining room chairs. As I was flipping over the dining room chairs I noticed there was a bunch of dog hair (fur?) stuck to the bottom of the chair! I knew it! I suspected for a long time that the previous owners had dogs (there are small scratches all over the hardwood floors), but I couldn't prove it!
[SOOOO much dog fur!]
I am volunteering Josh to scrape all that off.
Theo had two seizures today.
The next morning (Tuesday, November 15th), I Zoomed into the Master HOA Board meeting, put Theo on the bus, and then met Josh at Mobility Works. We were greeted by a nice man named Todd who showed us a few different wheelchair accessible vehicles. We first looked at the Traverse. It was roomy, had a built in automatic ramp, and the third row folds down flush with the trunk space. Right now our third seat is folded down and we have a small mattress in the back. This comes in handy when I need to change Theo's diaper when we are out and about. The cost? 85K.
Next we looked at a Chrysler Pacifica. These vans have been converted into accessible vans for a LONG time and have a great reputation. This one was VERY roomy and also had a manual ramp, but it was already sold and the back seats don't lay flush with the trunk. Brand new these are about 75K.
Finally we looked at a new hybrid Toyota Sienna. Just like the Pacifica, it was VERY roomy and had a manual ramp, but it was already sold and the back seats don't lay flush with the trunk. Brand new these run about 93K.
After we looked at the vans another guy, Rick, came over and introduced himself. He said that they just got word that a 2018 Chrysler Pacifica was coming in. Rick told us that it was owned by a veteran and through the VA they are able to get a new vehicle every two years. He told us that it was in great shape and only had 13,000 miles! Todd told us that once it comes in he will get some pictures and send us a quote. Even though this van is four years old, it has an in floor automatic ramp like the Traverse, which is super nice! Of the three vehicles we looked at the Pacifica had the most room AND scores highly on the crash test ratings. While we were there they evaluated my Traverse and made a trade-in offer. That way we know exactly how much everything will cost and we can get the ball rolling once the 2018 Pacifica comes in.
After meeting with Rick and Todd I headed over to get my allergy shots and then went to pick up Theo from school. Ms. Jess said he had another great day!
After Josh got home from work he started working on taking down the ceiling fan. I love that fan, but this will be the best spot for the eye bolt for the lift system.
[🤔]
Theo had two seizures today.
The next morning (Wednesday, November 16th), Theo and I drove down to Peoria to meet with the Orthopedic Surgeon. Theo watched Tangled and slept on the way down, so I could listen to a few podcast.
Theo got his hips x-rayed and then we met with the doctor.
I distracted Theo with peek-a-boo barn while the doctor stretched him out. He was very happy with Theo's flexibility. We then looked at the x-rays and saw that the head of the femur (on both sides) was firmly in the hip socket. He was happy with how Theo was looking, but expressed concern with how tired he was looking. We talked about the seizure meds and Theo's upcoming appointment with the Epilepsy Specialist. He said he has some other patients that have gone to Lurie's for help and they have been very successful there. Hearing all these success stories really gives me hope!
The doctor said that we can check in with him sometime next summer when ever we can make it coordinate with another Peoria appointment.
[Theo's hand print: green for CP, purple for Epilepsy, burgundy for AVM, blue for hydrocephalus, and zebra stripes for rare/unidentified]
[The black mamba jersey and the Sunday whites are my favorites]
That night Josh went up into the attic to see if there was some way he could install a metal plate for the eye bolt.
He was a little disoriented, so I had to knock on the ceiling with a broom handle so he could find the right spot. There is a ton of insulation up there, but Josh found the fan conduit and determined that if he put in wood reinforcements and a metal plate the lift system would work.
Theo had one seizure today.
Over night the temperature dropped significantly, so I bundled up Theo before putting him on the bus the next morning (November 17th).
I did another weight training class (leg day!) and then went to Theo's school for Thanksgiving lunch! I met up with Ms. Jess and Theo and they showed me the table runner that he made in class.
We then had some delicious Thanksgiving food. Theo was a little crabby, so I took him home right after lunch and put him down for a nap before OT.
Josh got an email from Mobility Works with pictures of the 2018 Pacifica and a quote. We made an appointment to go in the next day to see it. I was still wanting a hybrid Sienna and that 35 highway mpg was tempting, but the Sienna is $18,000 more then the Pacifica. It's probably not worth it.
[Oh my Lakers, you make me so sad]
Theo had one seizure today.
The next morning (November 18th) I sent Theo to school and then met Josh at Mobility Works. The 2018 Pacifica arrived a few minutes later and we checked her out.
[I made sure that my cell phone was compatible with the dashboard 👍🏻]
[Two screens with a DVD player!]
We then took her for a spin around Plainfield. I've never driven a minivan before and I was shocked how much power she had. I love how high up the van sits too - it's similar to my Traverse. I'm shocked how much I love the van and I'm really glad we went for the test drive. It showed me that it was not worth paying 18K more for a Sienna. Let's be realistic here.
My only issue with the van is that we loose the trunk space where we usually change Theo's diaper. I've been talking to other special needs families about this issue and a lot of them suggest getting a folding massage table. It can easily fit in the trunk and you can take it out and use it when you need to. It's a solution, but not a great one. But what other choice do I have? Either I change him on a massage table in the parking lot (who needs dignity or privacy anyways?) OR on the floor of a public bathroom. Been there, done that. It sucks. This is a huge reason why people with disabilities become more and more isolated. If you knew you couldn't use the bathroom outside of your home - would you leave? Would you go very far? Would you be gone for long? This is why all those big box stores need to have universal changing tables in the family restrooms. If I knew that all I needed to do was find a Target or Walmart if Theo has an accident, I would definitely feel less anxiety when I leave the house.
Anyways...
We drove the van back to the dealership and decided that she would be a good fit for our family. The van is not ready to be sold just yet. They still need to take her to a body shop, run a few more test, and get her detailed. We put down a deposit and Todd told us that the van should be ready the week after Thanksgiving as long as all the test came back good!
Guys, I don't usually talk about finances, but I feel like this is important to share. This van, this USED van cost $65,000. Yes, we are blessed and Josh has a great job, but we aren't millionaires, not even close. This is a monumental hit and we are not able to get any financial assistance from grants or health insurance. We have to pay this much money just so we can safely get our child to his doctors appointments and therapy. I don't think people don't care. I just don't think people are aware. I wasn't. I had no idea how expensive caring for a special needs child would be. I didn't know that we would have to buy a $450 bath chair just so we could bathe him or a $1200 USED chair so he could sit and color and play with his toys in our home. I knew the medical bills would be awful, but there is so much more I didn't think about. What about diapers? Paying out of pocket for medical adult sized diapers is no joke. This is just one of many issues with our health care system. People NEED bath chairs, wheelchair accessible vehicles, and diapers in order to safely exist. These aren't luxury items, these are necessary. 78% of the US population lives paycheck to paycheck. Buying these necessary items for their children is enough to put them in some serious debt. Luckily, there are grants out there, Medicaid, GoFundMe's, and Make A Wish, but not everyone has access to these.
I also had a discussion with some special needs families about insurance. I was told by multiple couples that they actually got a divorce so that the mother and child can get on Medicaid. That's reality and I get it. I do. It's a last resort in order to get their child the care that they need and can't afford. It's heartbreaking. So, next time the politicians suggest cutting funding for Medicaid or making provisions that would allow insurance companies to deny you coverage because of a pre-existing condition, think of these families. They aren't free loaders. They aren't trying to take advantage of the system. They are humans who need compassion, love, understanding, and assistance.
While Theo and I were at PT, Josh went home so we could get our piano tuned. It sounds SO much better!
[He's already a pro]
Theo didn't have any seizures today or over the weekend! YAY!
On Saturday, Josh headed back into the attic to install reinforcements for the eye bolt.
He is going to have a guy at work drill some holes in this thick piece of metal and then he'll bolt it to the reinforcements. That will hold quite a bit of weight!
Wish us luck! It's so nice to have a handy husband!
