This week was a pretty normal week for us. Theo went to school and therapy every day, I continued my triathlon training, and Josh held the house together!
Monday, February 27th:
Theo learned about mummies during social studies and had a great day! The school got a new nurse last week, so he has been spending a lot of time with the kids getting to know them and their needs.
I found this company that makes diary-free and vegan food pouches. Theo seems to really like peaches, pineapples, and mangos right now. So, I made sure I picked out a bunch of fruity flavors for him to try.
Theo had seven observable seizures today.
The next morning (Tuesday, February 28th) we sent Theo off to school and then I got a call from NuMotion. We took Theo to a clinic back in November to get him some new equipment. I called a few weeks ago to get an update and they were still working on it. But then today they called to let us know that insurance denied our claim and we would have to pay out of pocket for the activity chair and bath chair. The activity chair is currently $4430.40 and the bath chair is $2466.40! AND that is with the discount that NuMotion will give us for paying cash. This just completely blows my mind. Insurance claims that these chairs are not medically necessary. Do they want to try to lift a wet, slippery, 60 lb kid out of the bathtub? Do they know how hard and scary that is? Nope. Looks like we are going to dish out $2400 so that my son can safely take a bath. Good thing we bought that second hand activity chair a couple of weeks ago. At least that will hold Theo over for a while.
[Art from school]
Speaking of chairs, we bought this one for Theo a few years ago. We are going to donate it to a child in need who attends Theo's old Toddler School in Ottawa. These chairs are ridiculously expensive (see above) and most families can't afford them if insurance won't pay. Hopefully this will help that child out.
And today (the last day of February) is Rare Disease Day. We love our zebra!
Theo had three observable seizures today.
Wednesday, March 1st:
Theo had such a busy day at school that he ended up sleeping through most of Feeding therapy. That's okay. It gave Ms. Jen and I a chance to catch up and come up with a new plan for Theo. We are both very excited about his progress!
Josh found this jewelry polisher and it worked so well! YAY!
You see that?! Lakers are just barely out of the Play-In! We'll get there!
Theo had three observable seizures today.
The next morning (Thursday, March 2nd) we put Theo on the bus, got ready, and then headed to his school for his Domain Meeting. This meeting takes place every three years (not to be confused with his yearly IEP meeting). We met with his teacher, school therapists, nurse, principal, and a few other ladies from the district. The meeting is mostly to talk about his progress and to see if anyone thinks he should undergo additional testing. Each person talked about their interactions with Theo and they all recommend that he not be tested at this time. Theo is soooo tired and has regressed so much this last year. We are all hoping that once he starts to come off the meds, he will get back to baseline and start to progress again. All of the therapist mentioned in their evaluations that Theo's fatigue is affecting his ability to participate in therapy and progress. We hope this will change soon! 🤞🏻🤞🏻
[Theo using buttons to say "more"]
Theo brought his favorite book, The Little Blue Truck, to school today to share with his friends.
After the Domain Meeting Josh and I headed north so I could get my allergy shots and then we went to Costco and grabbed lunch.
[Tulips and orchids from Costco]
Theo had nine observable seizures today.
The next morning (Friday, March 3rd) we put Theo on the bus and then prepared for some bad weather. We were right on the line between rain and snow, so they were forecasting we could get rain OR 1-4 inches of snow. Luckily, we got mix, but the roads were still pretty warm, so we didn't get any ice and everything melted quickly.
After school I took Theo to PT and we drove home without any issues.
Theo had six observable seizures today.
Weekend:
I had my longest workout of my triathlon training (so far) on Saturday. A 2 hr 40 minute bike ride with two 15 minute threshold intervals followed by a 25 minute jog. When I was done I felt great! I ate my three gel packs and drank plenty of water which helped.
[Finished another program]
After my workout I made myself a protein shake and then promptly spilled it all over our beautiful rug! UGH! You gotta be kidding me! We tried out best to get the shake out of the rug, but our little spray bottle of cleaner wasn't cutting it. So, Josh ran to the hardware store and bought a fancy carpet cleaner while I moved everything out of the family room.
It works! Josh was able to get all the stains (new and old) out of our rug! YAY!
To go with our new couches we bought two new coffee tables. I love the dark wood!
Old tables:
Josh was mad that he has to modify/reinforce furniture that we purchase. Don't get him started on the new couches.
The darker tables are much better and contrast the couch and rug really well!
The couch guy from Darvin is coming on Thursday to evaluate the couches. It's just mind blowing that there is a chance that they may not fix or refund them because we signed for them. They literally delivered a broken custom made couch to our home and because we didn't notice immediately we may be stuck with it.
Theo actually opened his mouth and asked for more food at dinner! YAY!
Theo had seven observable seizures on Saturday and four on Sunday.
I love this:
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