Theo ER Supermoon Visit

Monday, November 11th:

Thank you to all the Veterans out there! We appreciate your service!

[Donald Neilson (my dad's dad) aka Papa the Great]

Theo had a great day at school! According to Ms. Jess, "Theo did an amazing job in lightbox today. He got 8/8 perfect on identifying the color blue from a field of two colors!" He did such a great job that he earned games on his iPad! That's my boy!

Theo had four observable seizures today including ones that were 80, 82, and 74 seconds long.

Tuesday, November 12th:

School started a bit different today. During their morning meeting Ms. Jess asked Theo if he was going to make good choices and he said "no." And it sounds like he stuck to that answer because he did NOT earn iPad privileges at school. At least he's honest, right?!

When Theo's Epidiolex was delivered last Friday, they forgot to send an adapter for Theo's g-tube. We had to improvise over the weekend, but it's a lot easier to give Theo his meds now.

I picked Theo up early from school, so we could go see Cole at CPO. It's time for Theo to get new AFOs and SMOs. We also asked Cole to put a hole in Theo's vest for his g-tube. 

After CPO we went to PT with Ms. Cody and then to The Legacy Ranch to see Sherman!

Theo had four observable seizures today.

Wednesday, November 13th:

Last week I mentioned that Theo is having issues dealing with the volume of his food and medications, so I thought I would show you what his morning meds look like:

Liquid meds are put in syringes, powder is put in a small container, and pills are put in the mortar for crushing.

Crush the pills and add them to the other powder meds. Add water and mix well.

See what I mean? That's a lot of volume for first thing in the morning.

And he's supposed to get four ounces of formula right after all his meds are given. It's just too much, so we are going to help this by giving him an overnight feed, so his morning formula dose will decrease.

After school Theo and I had a Zoom with Ms. Jen and Ms. Jeannine. We went over Theo's new feeding schedule. They agree that the overnight feed will help Theo with his volume issues. And hopefully consuming more of his calories at night will help Theo to be more hungry during the day, so he'll want to eat orally. Ms. Jeannine also suggested trying a different formula. We are going to try the new pump schedule for a week and if that goes well we can mix up the formula.

Theo had five observable seizures today including one that was 120 seconds long.

Thursday, November 14th:

Theo had another great day at school and I got a lot done at home.

After school I took Theo to see Ms. Laura at OT. Theo was very excited to see her, but was very stubborn when Ms. Laura was trying to get him to do his final activity before swing time.

Theo had five observable seizures today.

Friday, November 15th:

After I got Theo on the bus I headed into the basement to get some work done. It's a bit chilly down there, but I do love those dual monitors!

At 11:42 AM, Ms. Jess sent me this sweet picture of Theo sleeping. But then at 12:17 PM I received a call from the school. Theo was having a cluster of seizures and at the three minute mark they gave him a dose of his emergency meds. Unlike last time, Theo came out of the seizure when he got the emergency meds. The paramedics evaluated Theo and decided to take him to the ER.  

When I arrived Theo was in the room with Ms. Jess. He has his music and his ball, but he was tired from the emergency meds.

Ms. Jess filled me in on everything and then the ER doctor came in. We chatted for a little bit and then she said she would call Theo's Epilepsy Specialists to see what she wanted to do. After she left, Ms. Kate (Theo's teacher) showed up with Theo's wheelchair and all of his stuff. Theo attends a great school with some truly amazing people! 

An hour after I arrived Josh showed up. He brought lunch (I was starving!) and then played peek-a-boo barn with Theo.

Theo's doctor ordered some bloodwork, but no x-rays, CT's, or IV's so that was good news. After we got the bloodwork results (everything looked good), the ER doctor told us the plan: go home, give Theo a bridge this weekend, continue the Epidiolex increase and the valproic acid decrease, and rest.

We were discharged at 4:15 PM. On our way home I noticed that the moon was HUGE! It was a Supermooon! I don't think it has anything to do with Theo's seizures (last time he was in the ER it was a waxing crescent with 3% illumination), but I know some people will find that interesting.

Weekend:

Josh went to work on Saturday to make sure their HDD got pulled. And it did! YAY!

Thank you to this sweet family for sharing their story! Watch the video here.

We started our new feeding pump schedule on Friday. Theo did well and we had no issues with the overnight feed.

[This guy and his records!]

Speaking of sports, The Lakers are on a five game winning streak and the Packers  beat the Bears on Sunday AND the Chargers beat the Bengals in a nail biter! 

BUT my alma mater lost their first game of the season. BYU is now 9-1 and they'll drop a bit in the ratings (they were #6), but they'll win the next two!

On Sunday I went to see Elf Jr. The Musical at the local High School with Ms. Laura. It was put on by the middle school and they did a fantastic job!

It even snowed at the end! Too cute!