I want to start my weekly post by expressing how heartbroken I am. My heart hurts. It hurts for all the lives lost, the children, and the families that are broken. I hope this conflict in Israel and Gaza can resolve quickly and without more bloodshed.
Monday, October 9th:
Theo didn't have school today, so we hung out at home while Josh went to work. Josh has been inspecting the welders and the coating application. It creates a lot more work for Josh (since he has to do reports as the Chief, as a welding inspector, and as a coating inspector), but I think he enjoys getting out of the office sometimes.
[This is not Josh, he doesn't do the work, he inspects it]
Theo had three observable seizures today.
Tuesday, October 10th:
Tuesday's are now our busiest day of the week!
I put Theo on the bus than headed north to get my allergy shots and go grocery shopping.
I picked Theo up from school and we headed to PT/OT. Theo worked really hard and was very excited when Ms. Laura took him on the swing at the end!
After PT/OT we headed to The Legacy Ranch for Theo's horseback riding therapy lessons.
I mentioned to the instructors that Theo may be more comfortable if he had someone sitting behind him. They told me that one of their volunteers was out sick and they only had three people today to help out. If they have four then someone can ride with Theo. Maybe next time!
After the first lap they put a support wedge in front and behind him. They then encouraged him to lean forward and rest his arms on the wedge. He definitely did better this time! I'm excited to see how he progresses!
Theo had three observable seizures today.
Wednesday, October 11th:
Theo headed to school while I organized things around the house. Theo doesn't get home until 2:45 PM, so it gives me a lot of time at home by myself. It's nice to have time to read and play the piano while no one is around.
After Theo got home, we had feeding/speech therapy with Ms. Jen and Ms. Jeannine joined us on Zoom. Theo is struggling with post nasal drip which is causing tummy issues and acid reflux and most likely a sore throat. His 6 year molars should be pushing in soon too. So, he’s having A LOT of mouth issues at the moment and it's causing pretty severe oral aversion.
I talked to Ms. Jen and Ms. Jeannine about this and we are thinking it would be best to keep offering Theo food, but not be aggressive. We are going to work on food play and putting food on Theo's lips. Hopefully once his allergies clear up he'll start eating again.
Theo had seven observable seizures today.
Thursday, October 12th:
Theo headed off to school on the bus and Josh went to work. Theo had a good day at school, but he was having some gas, so Ms. Jess put him in his chillaxin' poop chair. Sounds like it helped!
After school I took Theo to OT with Ms. Laura. Later that night I met up with Ms. Laura at the local High School, so we could see Alice by Heart. It's such a great musical and the kids did a fantastic job (like they always do)!
Theo had 12 observable seizures today.
Friday, October 13th:
Theo went to school and was being extra silly/naughty! One time when Ms. Jess walked away from him he threw his iPad AND his glasses. This child!
[It's hard to be mad at that cute face!]
They also put him in a big boy chair for a few minutes!
He was very proud of himself!
After school I took Theo to PT.
Theo had five observable seizures today.
Weekend:
It rained on and off over the weekend, which caused Josh's crew to rain-out on Saturday. It's so nice to have him home over the weekend!
Theo had four observable seizures on Saturday and three on Sunday.
VOGM WALKATHON:
We are so excited for our Fourth Annual Walkathon! The Vein of Galen Malformation Support Network is on a mission to spread awareness for VOGM, a rare type of AVM.
I'm asking our "PEOPLE FOR THEO" friends and family to print off the race day bib, take a picture, and post that picture on social media (between October 21st and 29th) using the following tags:
#peoplefortheo
#vogm
#vogmwalkyourway
#veinofgalen
#vogmawareness
#AVMAwareness
#veinofgalenmalformation
#veinofgalenaneurysm
@Vein of Galen Malformation Support Network, Inc.
@Vein Of Galen Support Group
Honestly, that's all. You don't need to even donate. Please support us by posting your pictures and help us raise awareness. I'd really appreciate the love and support!
IF YOU WOULD LIKE TO DONATE, HERE ARE THE DETAILS FOR THEO'S FUNDRAISER:
If you don't want to signup and donate you can Venmo me and I will send in a group donation (Courtney-Carlson-12).
All money raised will go to help these amazing VOGM warriors!
Vacation Rental Properties:
We've been fortunate enough to purchase another Disney themed vacation rental in Windsor Hills Orlando (just miles from Disney World)! So, who's ready for a magical vacation?!
Check out our listings on Airbnb, but contact me directly if you want to book! We offer friends and family discounts too!
-Six bedroom villa has a private pool, a game room, a Star Wars themed room, a Small World themed room, and a princess themed room.
-Four bedroom home has a private pool, a game room, a Star Wars themed room, and a Frozen themed room.
-Three bedroom condo has a Toy Story themed room with bunk beds and is only a five minute walk to the Resort clubhouse, pool, and water park.
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