Baseball Day and Brodee's First Dance

Monday, May 8th:

Happy birthday, Brodee! Today Brodee turns 12! Can you believe it?! We got him a Texas Rangers hat and Air Jordan 4 Retro Red Thunder shoes. The shoes were hard to find and Josh now has a "Shoe Guy" in Chicago who can help him find rare shoes 🙂 We are so excited to see Brodee in June!

I sent a few pictures of Theo's VNS incisions to Neurosurgery. The incision by his armpit has a small bruise under it and he has some petechiae on his chest. They reviewed the photos and said everything looks good! Theo has been coughing since Friday, so I decided to keep him home today so we could do extra respiratory therapy with him.

[He was NOT in the mood to cuddle with Rollin Rovee]

That afternoon we went to PT and saw Ms Jeannine (Dietitian) too. We haven't see her in person since the pandemic started in March 2020. We Zoom with her every other week, but seeing her in person was nice. Theo continues to grow and we all continue to be amazed because he is not consuming that many calories. But we are all hoping that he will become more active as we wean him off the seizure meds.

[Another big win!]

Tuesday, May 9th:

It's Teacher Appreciation Week! We love all of Theo's therapist, teachers, and aids! I got them gift cards to The Hive. I hope they all go buy some nice treats!

Today was the Grundy County Special Education Cooperative (GCSEC) Baseball Day! Ms Jess said they have been practicing for weeks now and the kids are all really excited! We sent Theo to school where they put on their matching shirts, took pictures, and then road the bus to Miracle League Field in Joliet. 

[Angels shirt and a Brewers hat]

Josh and I drove over and met them all there! We also saw Theo's bus driver, his bus aid, and his old bus driver from preschool! We got hamburgers and then waited for the kids game to start.

[So many people!]

All the students gathered on the field for a group picture and then Theo's game started!

They lined the kids up, put out a small tee, and placed a wiffle ball on the tee. Each kid stepped or rolled up to the plate and took a swing! Once they hit the ball they ran or rolled to first plate! 

[Great job Theo and Ms Jess!]

The kids were so excited to hear all the adults and other students cheering for them! It was adorable! Once the kids got back to home plate they could either get back in line and go again or they could be all done. Theo and Ms Jess went around the bases a few times and then he was ready to go home for a nap. Thanks Ms. Jess for running the bases with him!

We took Theo home, put him down for a nap, and then went to OT that afternoon.

Wednesday, May 10th:

After talking to Theo's PTs and OTs, we all decided it would be best to start sending Theo to school in his MyGo Activity Chair. It offers a lot more support than his stroller wheelchair does and they are worried about his posture. We don't want to cause respiratory or spinal issues. 

[All ready to get on the bus in his MyGo!]

While Theo was at school we had an IEP meeting with his district, teacher, principal, and therapists. Everyone is hopefully that Theo will start to move forward once we get the VNS turned on and the seizure meds reduced. Until then we are in a holding position. 

Everything around here is blooming! It's so pretty, but our allergies are awful! Well, Theo and Josh's allergies are awful, I'm not doing too bad. I have my two years worth of allergy therapy to thank for that!

Thursday, May 11th:

We sent Theo off to school and then I went to get my allergy shots and made a quick trip to Target.

[Looks like we are going to have to make a trip to Lambeau Field this year!]

Friday, May 12th:

Theo is usually pretty tired by the end of the week, but I guess he was extra tired at school today.

Josh and I went to REI to take in both of my bikes. The road bike was clearly having issues and Josh said the hybrid bike wasn't shifting correctly. The guys at the bike shop said it should be an easy fix and put them on the schedule for Monday.

That evening we had a meeting with our NVC partners. Looks like the FL house is doing well! That's always good to hear!

Brodee went to his first school dance! He wore his new shoes and hat! Sara said he had a great time and looked so grownup! 

The Lakers closed out their series with the Warriors tonight! We are heading to the Western Conference Finals as a Play-In seed! That is huge!

We have two bird houses on our fence. The one outside our family room window was occupied by doves, but this one on the other side of the house is occupied by Robbins. I'm glad they found a nice place to start their family!

HAPPY MOTHER'S DAY!

My mom is the best! Thanks for traveling the world with me!

Theo made me this adorable card at school!

Theo and Josh got me this cute card and also a box of chocolates!

I also booked myself a two hour massage and a mani-pedi 🙂

Theo is weaned off of his Clonazepam! 1 down, 3 to go! I'm hoping the Clobazam (Onfi) will be the next one to go. I'll talk to Theo's doctor on the 24th. 

We got Theo this medical bracelet:

Theo is still having about 6-8 observable seizures a day. Hopefully that will start to change once the VNS is turned on!

Theo is STILL coughing. He started last Friday and it's not getting worse or better. I'm 100% sure if we didn't have our arsenal of respiratory devices that Theo would be back in the hospital right now. I am going to call his PCP tomorrow and see if they want to do an x-ray. Theo's oxygen levels are still in the mid 90s, but we'll see what he says.

VNS and Courtney's Bucket List Triathlon

This is it! The week we've been waiting for! Theo's VNS surgery is finally here!

Monday, May 1st:

When Theo's bus driver and aid arrived in the morning they were asking me about one of our trees. They both love it and while I think it's pretty, it is currently making my eyes itch! His bus driver asked if she could come back sometime and clip one of the small branches so she could take it to a nursery to identify. I asked our neighborhood facebook group and it turns out they are chokecherry trees. Who knew?!

While Theo was at school Josh and I packed our four bags (Theo's medical equipment, my stuff, Josh's stuff, and Theo's stuff). The VNS is supposed to be an outpatient procedure, but we are always prepared to stay the night.

After Theo got home I received a call from the hospital. Surgery was scheduled for 10:45 AM, so check in time was 8:45 AM. So we are going to be driving into downtown Chicago at rush hour. Sounds fun!

Theo had five observable seizures today.

The next morning (Tuesday, May 2nd) we got up at our usual 5:30 AM and started getting ready. I watched GoogleMaps, but the traffic kept getting worse, so we headed out at 6:45 AM. It's always best to be early!

Traffic was a mess and there were a few accidents, but we managed to get to the hospital at 8:20 AM. 

They showed us to our room and got Theo all ready for surgery. 

We spoke to a few different nurses, Dr Lam (Neurosurgeon), and the Anesthesiologist. Everyone was good to go, so they rolled Theo to the OR at 11:00 AM.

We were told the surgery could take 2.5 hours, so Josh and I headed down the street and grabbed some brunch at Wildberry Cafe. After eating our omelettes and pancakes we headed down the Mag Mile to the Water Tower Mall to get some Garretts Popcorn.

[The Mag Mile is lined with tulips!]

At 12:30 PM we got a text saying that Theo's surgery was wrapping up (that was fast), so we headed back to the hospital.

[Doesn't look like a hospital, does it?]

We got back to Theo's room and waited to see the doctor. Two of Dr Lam's nurses, Daisy and Megan, came in to see us. I have been coordinating Theo's surgery stuff with them for the last few months and it was nice to finally meet them in person. Then Dr. Lam came in and told us that Theo did great and we would be able to see him soon.

At 2:30 PM we were finally allowed to go to recovery.

Theo was just waking up, but kept his eyes closed until he heard Josh's voice.

We gave Theo some juice and he held that down, so they moved us back to his pre-op room. The nurse told us that as long as Theo tolerates his formula then we can leave. We gave him food and meds and then the nurse gave him some Tylenol, took out his IV, and officially discharged us. It was BY FAR the easiest discharge we have ever had!

We got our van, swung by the Nutella Cafe, and then headed home. Theo did great on the drive and slept most of the way.

That night we watched the Lakers beat GS in a nail-bitter!

Wednesday, May 3rd:

Theo had a great night and didn't appear to be in very much pain. We gave him Tylenol a couple times during the day and he took a few naps.

Happy Star Wars Day!

I went on Shop Disney to see how much the new Cal Kestis lightsaber would be and I got put in a waiting room. There were 17,000+ guest ahead of me. I got into the system in under four minutes and all of the lightsabers were sold out! $400 a piece and they were sold out and already on eBay. So dumb.

Carrie Fisher finally got her Star on Star Wars day! How amazing is that?!

Just so you know:

Ms. Jess came to visit today for a few minutes and that night I went and saw Guardians of the Galaxy 3. It was really good!

On Friday, May 5th, the WHO declared the COVID-19 Pandemic Emergency was over. That doesn't mean the virus is gone - we still need to be careful. 

Theo started coughing today so we started him on The Vest again. We had paused it after surgery, but continued with his nebulizer and cough assists twice a day. We put The Vest on a low setting to make sure it wasn't hurting Theo and once we were sure it was fine we turned it up to full power. We are NOT going back to the hospital for pneumonia, so we did respiratory therapy every four hours.

["The Vest," The on a wedge, suction machine, nebulizer, cough assist, and Beat-Bo]

The Lakers lost game 2 on Thursday, but they destroyed GS on Saturday night!

Sunday, May 7th: Triathlon Day!

The day was finally here! I've been training for 12 weeks (minus the three weeks that Theo was in the hospital) for this and I was ready!

I got up at 5:00 AM and headed to the local gym for my 1.2 mile swim. All seven lanes of the pool were open from 6:00 AM to 7:00 AM, but then life guard training was starting at 7:00 AM and only one lane would be available. I knew I needed to finish in an hour and I did! I finished the 1.2 miles in 52 minutes! I did get a little acid reflux when I was about halfway done and I had to stop and cough a few times, but I was good with my time. 

I then headed home where I changed and Josh helped me pack the van. Ms. Jess arrived and Josh and I headed to the Aux Sable park where Josh would hang out with the van while I did my 56 mile bike ride. 

I headed out and 10 miles into my ride a felt a clunk. The clunk continued to happen whenever I pushed down on my right pedal. Ugh! I don't have time for this! I adjusted my gears and figured out that if I keep my bike in the highest gear (highest resistance) then it wouldn't clunk. 

My feet were numb from pushing down so hard, my hands were rubbing raw from holding my handlebars too tightly, my knees were hurting from climbing up hills in a high gear, and my neck and upper back were throbbing. I rode the next 36 miles in the highest gear until my bike finally gave out. 

I called Josh and he came and got me. I was so upset that I didn't finish, but it's hard on a broken bike.

We drove home, I changed my clothes and checked on Theo and Jess, while Josh packed the van. We then dropped off the Jeep in Morris, dropped a cooler at the half way mark, and headed to the starting line in Channahon. 

Even before I started running I was sweating! Like dripping off my body kinda sweat! It was 92 degrees with no breeze and the trail is between two bodies of water, so the humidity level was unbearable.

Josh rode my hybrid bike on the trail while I ran/jogged/walked behind him. I drank a ton of water and consumed my gel packs, but I was still struggling. Just a few miles in I started to shake and then I got the chills. I've worked outside enough to know the signs of heat exhaustion. I told Josh that I was calling it. He rode his bike back to the van (since I was less than half way done) and then came to pick me up at the next trailhead. I ended up only running four miles, which is not even 1/3 of my goal. I was mad, but I also knew that if I continued I would have just made myself sick. 

Ugh! I hate quitting and I hate failing (who does?). Luckily, I have some amazing friends and family member who reminded me that my bucket list specifies that I need to "Do a triathlon" which I technically did. So, I'm not a failure. I accomplished my bucket list goal, I just fell short of my mileage goal. 

Lacey, Emily, and Katey made me these shirts and got me a medal! I love them so much especially the corn fields! I laughed and then I cried and then I laughed some more! My friends have such faith in me and I love that! Thank you ladies for your love and support!

[I'll have to get the mileage adjusted 🙂]

I should have cut back on my mileage goal a bit. I tried for a 70.3 triathlon and that's what I trained for, but when I lost those three week I should have cut it back to an Olympic distance. If I only had a 25 mile bike ride I could have started the run earlier than 1:30 PM and actually finished the 6.2 miles. I also didn't train for the weather conditions. How could I? I ran and biked outside when I could, but it was rainy and in the 50s leading up to May 7th.

Josh picked me up and then we headed to pick up the cooler and his Jeep. We stopped and got a sandwich in Morris (I was starving) before heading home.

And look who was waiting for me when I got home:

I just love him so much! Thanks so much to Ms Jess for watching Theo all day, doing his therapies, playing, giving him his meds, and keeping him happy! And I want to thank Josh for putting up with me during my long (5+ hour) training sessions over the last 12 weeks. AND for being my porter. Josh got my water, calorie drinks, and equipment ready AND he rode a bike in 92 degree weather carrying water for me. That's one good porter!

It can take 2-4 weeks to fully recover from a 70.3 triathlon, so I am going to take a week or so off to rest and recover. 

Wanna see something amazing?!

This little girl has the same brain aneurysm that Theo has. The surgery in utero was successful! Hopefully more and more VOGM warriors will survive this devastating diagnosis in the future! 

https://www.cnn.com/2023/05/04/health/brain-surgery-in-utero