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.

Valentines Day and Start Triathlon Training

Monday, February 13th:

Today I officially started my triathlon training! My plan calls for 8 workouts a week over 6 days (Friday's are rest days). It's right in line with the workouts I have been already doing so that will make the transition easier.

After we put Theo on the bus I headed out on my new bike. It was chilly so I had to wear gloves and a jacket. The bike is faster, but it's very light, so it's easy to get blown off course when a big gust hits you. I stayed out for about an hour since it was just too chilly.

Theo had a great day at school and brought home a Valentine for his favorite guy!

[SOOO cute!]

Theo had two observable seizures today.

HAPPY VALENTINES DAY!

Josh got me the LEGO Millennium Falcon, the new Harry Potter game, and a road bike. And I got him a card and two packs of Andes Mints. He's claims it's even because the LEGO Millennium Falcon and Harry Potter game are for when we host my brothers for Star Wars Celebration AND the bike is for training, not fun 🤷‍♀️

After we put Theo on the bus we went to the Hive to pick up our order of 75 cake pops. We took 50 of them to the school, so the teachers, aids, front desk ladies, etc could all feel the love on Valentines Day! 

We then went and found Theo's class. They were in the gym having circle time. The PT and Vision Therapist were both there along with all the kids and aids. Josh and I then did a short lesson on how to g-tube feed Theo. We asked Theo's Pediatrician to send in a fax indicating that the nurse, CNA, aids, and teachers can all feed Theo after they've been trained. This way if the nurse and Ms Jess happen to be gone on the same day, someone else can feed Theo. 

Speaking of feeding... The ate half of this food pouch at school! We are all so excited!

[AWWW!]

Theo got a lot of fun treats from his classmates and from his family.

After school I took Theo to OT where we passed out more of the cake pops to all the therapists.

Theo had seven observable seizures today.

Wednesday, February 15th:

Theo had another great day at school and I finished two training series on iFit that I've been working on for a while. One was a 12 week strength training series that I LOVED! I'll definitely do it again.

[This is awesome!]

After school Theo had feeding/speech therapy with Ms. Jen. We talked about his progress with food and brushing his teeth 🙂

Theo had five observable seizures today. 

HAPPY QUANTUMANIA DAY!

Ms. Jess sent me a video of Theo laughing so hard that he gasping for air! I think it's safe to say he had a very fun day at school!

[Theo with his Mardi Gras party hat]

That night I went to see Quantumania! It was awesome!

Theo had five observable seizures today.

The next morning (February 17th) we sent Theo to school and then ran some errands (since it was my rest day). It's nice to hang out with Josh during the day. He's likely going back to work at the beginning of March, which is good, but it's been nice to have him around more!

After school Theo went to PT.

He had four observable seizures today.

Over the weekend we played a lot of Hogwarts Legacy (the new Harry Potter game) and relaxed at home. I did some long workouts too. 

[Like father like son]

Theo outgrew his adorable REI pants that I bought him for our trip to Europe! This kid needs to slow down!

We ordered Theo a new activity chair back in November, but it could still be four more months before it arrives. A local family was selling their activity chair, so we bought it to hold him over for the next few months. 

I think it's going to be great!

So happy in his relaxing chair!

Floor naps!

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

Specialized Road Bike, Ms. Jess Babysit, and the Super Bowl

Tuesday, February 7th:

Theo had no adverse effects from the anesthesia, so he headed off to school the morning after his PET and MRI.

At school he went in his new stander and his PT, Ms. Vicki, said he did really well. It is very similar to the Gazelle that we have at home.

Theo also did really well with his snack. He kept asking for more and Ms Jess sent me this picture of his food pouch! I couldn't believe it!

Theo's OT cancelled, so I asked Ms. Cody if she was available (since we missed PT yesterday). She was! Ms Cody was able to come over to our house after Theo got home for some PT.

That night we watched the State of the Union Address and LeBron James pass Kareem Abdul-Jabbar to become the all-time leading scorer in the NBA. Kareem held that title for almost 40 years! 

I figured out how to use the split screen. It's a very nice feature! I wish I had know about it sooner!

[The shot that broke the record]

When LeBron passed Kareem they paused the game and did a ceremony. It was kinda strange. The Lakers ended up losing the game too.

I have A LOT of feelings about LeBron. But he did just break a record that no one thought could be broken. Congrats to him! We saw history happen!

Theo had six observable seizures today.

The next day (Wednesday, February 8th) Josh, Theo, and I headed all the way down to Peoria to meet with his Developmental Specialist APN. We caught her up on everything that's been happening since we saw her in August, followed up on some things we talked about last time, checked Theo out, and then said to come back and see her in about 9 months. Can do!

[Theo slept on the way down to Peoria, but he was still very tired]

Theo had five observable seizures today.

Thursday, February 9th:

I received a message from Theo's teacher letting me know that the nurse wouldn't be in today. I told her that I could come and feed Theo and it wasn't a problem. 

After I fed Theo I drove north to get my allergy shots and then went to pick up Theo from school. His OT cancelled again, so I took him home right after school. 

Theo was very interested in army crawling towards the floor, so I asked Josh to sit on the floor with a toy that Theo wanted. Theo started to crawl towards Josh but then he got tired and took an hour long nap.

[Sweet boy]

Theo had eight observable seizures today.

On Friday, February 10th, we sent Theo off to school and I was able to get a lot done around the house since it was my "rest day" (I did do 20 minutes of Yoga though). 

Theo was very happy at school and had a great day!

They made dairy-free pudding and Theo LOVED it! They said he kept asking for more!

After school I took Theo to PT where he got to play with Ms Becca and Ms Cody. 

That afternoon I received an email from Lurie's with Theo's recent MRI and PET scans. I'm not going to pretend to understand them, but I think they are interesting to look at.

See that black mass towards the back of his brain (right side)? That's Theo's aneurysm. 

This is looking from the top down. The black mass is the aneurysm and the grey areas in the middle are his ventricles. The grey mass on the left side caught my eye, so I sent a picture of it to the Neurosurgeons in Peoria. I don't remember it being so prominent in his other scans so I wanted to double check. They said that it has been there for a while and has not gotten any bigger. It is just showing up really well because of the high quality of the image. 

Hopefully we will hear from the Epilepsy Specialist soon and we can get his surgery scheduled.

Theo had one observable seizure today.

Saturday, February 11th:

Ms Jess came over today to babysit Theo so Josh and I could go to lunch and look at road bikes. Theo was pretty excited when she showed up, so I wasn't worried about them at all!

Josh and I headed about an hour north to Oak Brook were we got some lunch at a Mongolian BBQ place. I'm not a huge fan of buffets or dishing up my own raw meat, but it was pretty good. Next, we headed to Erik's Bike Shop. We looked around at a few models that we thought would work for me (and they were in our price range!). Of course, they didn't have my size (54), but they did have it at another store that was about 30 minutes further north. I texted Jess to make sure they were okay (they were) and then we headed to Deerfield. 

Once we arrived we found the bike, but I felt like it was too similar to the bike I already have. I was a little disappointed but then this beautiful Specialized Tarmac SL6 caught my eye. She was perfect! One of the guys at the shop was happy to explain all the differences between the different bikes and brands. He was very helpful! The bike has a carbon fiber frame and is only 17 lbs. The paddle shifters will take a little getting used to, but I'll make it work!

After we purchased my new road bike (EEK!) we headed to Gibson's steakhouse to get a couple pieces of their giant chocolate mousse. No, we didn't keep them both! We gave one to Ms. Jess!

We got home a lot later then we had planned, but I kept in contact the whole time with Ms. Jess and she kept telling me that everything was going great! 

Theo and Ms Jess had a very fun afternoon together and I'm excited to have her come babysit Theo again!

[Isn't she pretty?!]

[Light as a feather!]

Pictures from Ms. Jess:

Theo had five observable seizures today.

On Sunday we made nachos and watched the Super Bowl. I'm so over the Chiefs (since I'm a Chargers fan), so I was kinda rooting for the Eagles. Honestly, I didn't care too much. I just wanted to see a good game and some funny commercials. And we did!

[Theo was being silly!]

Theo had three observable seizures today.

Soooo funny:

[I have actually Googled: "What does 'Gucci no cap' mean?"]