Monday, January 8th:
Theo's bathroom remodel started with a little bit of miscommunication. Theo was scheduled to go back to school on Tuesday, so we thought they were going to start then. We were a bit surprised when they sent us the schedule and demolition was scheduled for Monday. We thought it would be easier if Theo was at school with all the loud construction, but we'll make it work!
The guys showed up that morning with a giant dumpster and a lot of tools. Zac, the foreman, talked to Josh about the plans and once the contract was signed and the permit was hung, the guys got to work!
[Plans - subject to change... daily]
[Josh made a 3D scan of the construction area]
The guys started by constructing a curtain that would help contain the dust. We covered a lot of our things in plastic, but this curtain is still needed.
The workers actually didn't make a ton of noise the first day even though they took down a lot of drywall.
[That's looking up into the attic from Theo's bathroom]
[New entrance to Theo's room - his bed is behind that curtain]
Tuesday, January 9th:
We got Theo on the bus right as the guys were showing up for work. It was perfect timing!
They were much louder today, so I'm glad Theo was at school and the workers were done by the time he got home from horseback riding lessons.
[I love my Bose]
That day they were able to remove the tub, the vanity, and the floors. They put up plastic over the hole in the ceiling, which helps keep the heat in.
Theo had a great day back at school! He played with snow and even tried a few bites of snack. He was very tired when we picked him up and took him to PT/OT. He worked hard for Ms. Cody and Ms. Laura even though he was tired and protested a bit.
After school we took him to The Legacy Ranch for horseback riding lessons with Sherman. He was a bit more squirmy during his ride. I don't know if his stomach was upset or if he was just really tired, but he still loved his time with Sherman.
Theo had nine observable seizures today.
Wednesday, January 10th:
We sent Theo off to school and the guys got to work in the bathroom.
When we left to run errands the floor was torn up and there was quite a lot going on!
Theo had another great day at school. He participated, went in his stander, and colored.
We went to get my allergy shots and then we swung by the bank to pick up some money for Iceland. Do you know we are heading there in just three months?!
When we got home the floor was patched up and the work space was clean!
Theo had six observable seizures while he was at school. One lasted almost two minutes, which is the longest he's had in a while. Usually they are pretty quick, but they tend to cluster together. We will bring this up with Neuromodulation and Epilepsy when we see them in a few weeks.
That night on the news the meteorologist zeroed in on their predictions for the next big storm. We are going to get about six inches of snow on Friday and then Saturday night there will be a deep plunge. We are going to have -30 wind chills for about three days.
The timing is not great considering we won't have dry wall in the bathroom installed by then and the attic is exposed. We've been through some cold weather before: -55 windchill in North Dakota in January 2013, -45 windchill in Indiana in January 2014 (Polar Vortex), and -60 windchill in Illinois in January 2019 (Polar Vortex). But that doesn't mean it's fun!
Thursday, January 11th:
The next morning we wrote a check for $18,236 to the contractor (that's not even half of what this bathroom remodel will cost) and then the three of us headed to Peoria for a check up with the ENT.
*Side Note: I'm not telling you the cost to brag. I'm telling you the cost so you understand how freakin expensive it is to have a special needs child. I had no idea how expensive it is and unless you are in the same position, I'm sure you don't know either. I'm trying to raise awareness. We are stuck in a grey area - Josh makes too much money so we don't qualify for Medicaid and Theo is not "critical enough" so we don't qualify for any grants or programs. We are not getting any help from the government (SSI, RESPITE, DSCC, etc.) or getting any assistance buying equipment or even diapers. We buy Theo's medical equipment out of pocket and second hand from other special needs families. Don't get me wrong, Josh makes good money and we are beyond grateful for his job, but he doesn't make so much that we are comfortable paying $8000 for Theo's wheelchair stroller, $65,000 for a USED wheelchair accessible van, or $50,000 for a bathroom remodel. We have debt. We have loans. We also pay $16,000 in medical insurance every year with a $6000 deductible which we hit every year. And that same insurance denied us a bathchair because it's not "medically necessary." It's not medically necessary for my 60 lb son who can't sit up on his own to have a bathchair. 🤦♀️ Anyways...
We saw APN Amanda Allen who checked Theo's ears and said that everything looks great. We'll see her again in six months. If Theo's ears continue to be clear then we will move to yearly appointments. YAY!
After Theo's appointment we made the two hour drive home. We were there for about an hour before I took Theo to OT with Ms. Laura.
When we got home the guys were gone for the day, but the area is starting to look more and more like our vision!
[Bathroom with the half walls where the shower will be]
The toilet was supposed to be on the other side (behind me) and the sink was supposed to be here. BUT we did some measurements and we think the toilet will be better here, next to the shower. There is plenty of room for a wheelchair too.
Theo likes to roll off of his mat and onto the rug or hardwood floor. He will then call for help. He's so dramatic.
The snow and deep plunge are still on schedule!
Friday, January 12th:
When we met with the electrician we told him that today would be the best day to put the can lights in the family room since Theo would be at school. Well, guess what?! IT'S A SNOW DAY! We got 6 inches of snow last night, so today is an e-learning day.
[Before picture of the family room]
We moved Theo and all of his toys into our bedroom for the day.
Theo did his e-learning and I worked on Theo's novel. Oh did I tell you?! I've been writing up Theo's medical history. It's been quite an emotional journey. Good thing I take notes anytime I talk to a doctor, nurse, or therapist.
[SNOW!]
[Theo is really good at getting his toys]
The electrician and his crew installed six six-inch can lights in the family room. It only took them a few hours, so we weren't trapped in our room all day.
[Dimmer switch!]
It looks soooo much better! We took out the giant fan and light to install an eye bolt for Theo's swing and eventual lift. When we did that we lost all of our light in the family room and we had to bring in lamps.
The cold is still on schedule, so the contractor brought over a large space heater to put in the bathroom. It's already much colder back there and it makes the Harry Potter room (where Theo is sleeping) very cold.
[Help me! I'm stuck!]
The electricians and plumbers worked all day on the bathroom. They were in the basement a lot and they made a lot of noise!
[New plans!]
Saturday, January 12th:
The contractor guys were over all day again today. They have an inspection on Tuesday, so they are working hard to meet that deadline. The vanity builder came over today to take measurements and talk to us about what we need. He is going to build a custom vanity area with two sinks (one of them being wheelchair accessible) and cabinets.
I finished Theo's novel today. The first part is an overview of Theo's medical history and then the rest of the novel goes into details by speciality. If something happens to Josh and I, Theo would go to Luke and Andie. This book will help them and Theo's new doctors understand Theo and his complex medical history. That situation is not going to happen, but it's always good to be prepared!
This novel will be in our firebox in case of an emergency.
We have been putting Theo in his KidWalk for a few minutes and then transferring him to the Gazelle. He can only handle about 5 minutes in the KidWalk (he use to go for an hour), but he can do about an hour in the Gazelle. We'll get that strength back!
[Theo in the Gazelle]
The contractor installed a lot of pipes today!
[Look at all that copper!]
That night we turned up the gas heat to 68. We usually keep it at 62 at night and then turn Theo's electric heater to 72. Even with Theo's electric heater on high there is no way it was going to keep his room warm enough in the night.
Sunday, January 14th:
It was -11 (-36 windchills) the next morning. Theo slept great and there were no issues keeping his room warm. Don't worry, we have a blowup mattress in our room ready to go if it got too cold for him in the HP room.
[-39!]
[It's going to feel warm on Wednesday!]
[Theo in the KidWalk]
We got some big news this week! We are getting another Star Wars movie! YAY!
And I thought this was just perfect:
The main construction on Theo's bathroom should be done by the end of January. The tile guy can't come out until the middle of February and then once he is done they will instal the vanity and do all the finishing touches. *Fingers crossed* They are scheduled to be done at the end of February.
AND THE PACKERS WON TODAY! YAY! Their next game will be against the 49ers in SF next weekend. Go Pack Go!
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