Neurosurgery Zoom and New Couches

February 20th, Presidents Day:

Theo didn't have school today, but he still had PT in the afternoon at home. Ms Becca came over and helped us adjust Theo's chair.

I got a call from Theo’s Epilepsy Specialist, Dr Garcia Pierce. She said the Epilepsy team met and they all agree that the VNS will be the best option for Theo. Our next step will be to meet with the Neurosurgery team and the NP that oversees the VNS patients at the Neuromodulation clinic. The Specialist also sent over a 12 week wean plan so we can start weaning Theo off of one of his seizure meds.

Theo had two observable seizures today.

The next morning, February 21st, I had a Zoom with the HOA and then we put Theo on the bus. I bought a bunch of new gel packs to try out during my long workouts. So far the espresso flavored ones are my favorite. The fruit flavor ones have all been awful. 

I finish an eight week 10k training series today. It was a ton of fun!

Theo had a great day at school! His PT has been hesitant to put Theo in the stander since he is still so weak and, even though it's been a while, the memory of Theo passing out is very fresh in their minds. He went in his stander during "Movement Group" and the nurse monitored his blood pressure the entire time. He did great and had a fun time!

After school I took Theo to OT and then we came home to a nice clean house because the cleaning ladies had come!

Theo had nine observable seizures today.

Wednesday, February 22nd:

We had a Zoom with the Neurosurgeon (Dr. Lam), Dr Garcia Pierce, and a couple nurses today. We had a long chat about Theo's situation and the benefits that the VNS could bring. Dr. Lam is fantastic and is VERY involved in the entire process. She work pretty exclusively with the Epilepsy team and performs these types of surgeries all the time. After answering all of our questions they asked if we wanted to move forward. I told them we absolutely wanted to move forward and told them we wanted the next available date. 

Theo’s surgery is scheduled for March 14th! YAY! I need to reach out to four of Theo's Specialist to get recommendations, take Theo to the pediatrician to get a pre-op physical, take Theo to get labs, and a few other things, but I told them I could get everything done well before surgery.

The doctors also told us that the Neurovascular Team is also very interested in Theo and they want to meet with us. They meet once a week to talk about patients and Theo’s case caught their attention. They work with Genetics and Neuroradiology and would like to look into Theo’s condition some more. The Epilepsy Team will continue to follow his case too. I know from my support group on FB that there have been at least two other Vein of Galen kids that have been treated at Lurie’s too. So at least they are familiar with his specific aneurysm. 

Josh and I ended the call feeling very good about Theo's care. We are excited about the surgery and all the people who want to help Theo.

That afternoon Theo and I had a Zoom with his Dietitian. Theo took THREE huge bites of his pudding and he sat up so super strong in his new chair!

Theo had six observable seizures today.

The next morning (Thursday, February 23rd) we sent Theo off the school and then I went to the basement to workout. 

Theo had another great day at school and they figured out that he doesn't like bananas. The last few foods they tried with him contains bananas and he spit them out! I am happy about this because he is showing preference! 

Theo had four observable seizures today.

Friday, February 24th:

I've been having problems with my toes falling asleep while I am on my bike for long workouts (usually 90 minutes and over). I decided that I needed to go to REI on my day off to see if they could help me.

After we sent Theo off to school Josh and I headed to REI. The guys there were extremely helpful and suggested trying a few things to see if that will help my feet. I ended up getting new shoes, clips, and pedals. The shoes I had been using were used mostly for indoor cycling. The REI guy also told me I may need to lower my seat a bit and play around with the clip placement. I hope these tips and upgrades will help!

[I love Theo's art!]

Weekend:

I had my longest workout on Saturday and it was pretty tough. We are still in the building phase of training, so they are just going to get longer. I may regret this...

[Lakers are just a couple games out of the Play-In]

About six weeks ago, Josh and I went to Darvin and bought two new couches. Our current couch was left here by the previous owner and it was struggling.

[Pads for support]

We received a call letting us know that our new couches would be delivered Saturday morning. Josh called our neighbor and asked him if he wanted our old couch. He was happy to take it! Saturday morning at 7:00 AM the Darvin movers and our neighbor showed up. We cleared out the old couch and moved the new ones in.

I LOVE THEM! They are very nice and firm 🙂  Now we need to find an end table.

[Chocolate pudding]

[Resting]

[❤️]

My very talented cousin, Cheryl, has published three books of poetry. They are fantastic! Please read them and leave a review!

On Sunday night Josh and I were sitting on our new couch playing Hogwarts Legacy. I shifted my booty and we heard a loud crack! Ugh. Looks like Darvin delivered a faulty couch. I know I need to lose some weight, but I'm not heavy enough to break a well made couch. Josh is going to call them tomorrow and see what they can do. Until then we will be sitting on these beautiful dining room table chairs.

Theo had two observable seizures on Saturday and two on Sunday.