VNS Prep Week

Monday, April 24th:

While Theo was at school I did my work out and then double and triple checked that everything was in order for Theo's surgery next week. 

Oh my goodness! Look what came in the mail! 

I've been doing more prep for my triathlon and today my converter came so I can charge my apple watch between my bike ride and run. I think it'll work!

[He's so super strong!]

We also got Theo's Make A Wish packet today!

[Family photo clothes]

For Josh's birthday he wanted a new radio for his Jeep. He found a place online that fixes radios, so he sent his radio to them. Unfortunately, they sent it back and said it was fixed, but it wasn't. Ugh.

The Lakers are crushing the first round and they came away with a HUGE win in OT!

Theo had five observable seizures today.

Tuesday, April 25th:

The next morning Josh headed off to work, Theo took the bus to school, and I went swimming. 

[Such a big boy!]

After school I took Theo to OT and he did really well until the end of the session. Ms Laura always starts Theo on the swing and then they end on the swing. Theo knows this. Ms Laura and Theo were playing on one side of the room and so she put him in his wheelchair, so she could easily move him across the room to the swing. Theo thought that she was putting him in his wheelchair so he could go home and he was not having it! He started to bawl! She got him on the swing and he stopped bawling but he was still sobbing. Theo LOVES to swing and he LOVES his routines!

 

Theo had six observable seizures today.

Wednesday, April 26th:

Theo had an "early out" at school today, which is hard on my schedule, BUT it's nice that he gets to come home and take a nap before feeding therapy.

Disney and Ron Desantis continue to have drama 🙄

I got a new Star Wars book! It's fantastic!

The Lakers had the chance to close out the series in Memphis tonight, but they fell short. It's okay though! They'll finish it at home on Friday!

Theo had three observable seizures today.

Thursday, April 27th:

Theo and I had a super busy day today! First we had a tele-visit with Theo's pulmonologist, Dr Stewart. She said she looked over his CT scan and determined that Theo is fine to undergo anesthesia. YAY! She also diagnosed him with asthma. She mentioned to Josh that it's likely that he has asthma too based on his morning cough. Interesting... Might be worth looking into.

She then had me jump on my phone and put my phone speaker on Theo's chest so she could hear him breathe. It worked and she said that he sounds really good!

We will do a follow up with her (in person) this summer.

That afternoon we went to Ottawa for Theo's preop physical with Dr Dave and his APN. They said that Theo sounds and looks great and they cleared him for surgery too. Our final stop was the hospital next door for bloodwork. I told the ladies that Theo is a hard stick and they were able to get what they needed with two pokes... or so we thought. After we got home I got a call from one of the nurses. She said they didn't get enough blood for the ammonia test and we needed to come back. I called Theo's Epilepsy Specialist (who had ordered the test) to see if he REALLY needed the lab. She said that since he had just done it last week, we didn't need to go back and redo the lab. Phew!

[Nice blue bandaid for his hand pokes]

[NFL Draft! It's gonna be a great season!]

After Josh got home from work I went and got my allergy shots and then ran to Dick's to get a rain coat. I have a feeling it's going to be warmer for my triathlon, but it will probably rain on me. Go figure.

Theo had five observable seizures today.

Friday, April 28th:

After I put Theo on the bus I headed to the McKinley Woods trailhead on the I&M Canal Trail. I brought plenty of water and bug spray, which made my run nice. But I forgot my gel packs, which made my 6 mile run a little hard. Luckily, the weather was perfect and I had fun taking pictures of the wildlife. 

[Geese and babies!]

[Great Blue Heron]

[Turtle on a log]

I also saw swans and egrets! They are so pretty!

At school Theo made guacamole and colored. They said he had a great day!

That night we got the new Star Wars game, Jedi Survivor, delivered AND it was Game 6! What do you do?! 

We played the game AND watched the Lakers! Win-win!

IT'S IN THE REFRIGERATOR! 

The Lakers destroyed Memphis and we are moving on to the next round!

And his picture popped up on my FB today! 11 years ago!

Theo had six observable seizures today.

Saturday, April 29th:

We had a nice relaxing weekend at home. I had my final long workout (next week it a big taper) and Josh installed a new shelf in Theo's room! We are running out of space!

[Awesome, right?!]

Theo had five observable seizures today.

Sunday, April 30th:

We got my Papa's birthday invitation today! I love it!

I posted on a couple facebook groups that we were looking to buy a shower chair and I had a few people reach out to me to say they had one. Nice! There were also a few scammers that reached out to me too. I figured they were scammers by reverse searching the images they sent me. Scammer suck!

We also bought this nice plus ox so we could better monitor Theo's oxygen when he gets sick. The little finger one works fine, but this one is fancier 🙂

Lakers are playing the Warriors next!

[🤣]

IT'S GONNA BE MAY!

Theo had six observable seizures today.

Nana's Funeral

Monday, April 17:

I had a hard workout yesterday, so I took it easy today and watched the Boston marathon!

My Nana was laid to rest today in CA. I wish I could have been there to support my family, but Theo is still recovering from pneumonia (it takes 6-8 weeks to heal) and Josh JUST went back to work after being off since early January. I was able to watch the funeral via Zoom and it was so beautiful!

[Papa and Nana have been married for 71 years!]

My Nana was so kind and had the most beautiful smile! I'm glad that so many of the cousins, aunt, and uncles were able to go out for the service. I'm looking forward to seeing everyone in June!

Theo went to school and PT today. He had four observable seizures today.

Tuesday, April 18:

After I put Theo on the bus I grabbed my bike drove out to the starting point of my triathlon. My plan is to do two 23 mile rectangles and then one 10 mile rectangle. Josh is going to hang out at a local park, which is where I will start and finish my rectangles. That way I can swing by and grab supplies and I don't have to carry a bunch of water and calories with me. I did one 23 mile rectangle and I was FREEZING! I really hope it warms up before May 8th or I'm going to be in big trouble!

After my bike ride I went to pick up Theo from school. His PT, Ms Vicki, was there and we chatted about Theo's wheelchair. She said that lately Theo has been falling asleep on the bus on the way to school and when he does he leans forward and his head is laying on his chest. She is worried about his breathing and posture and she suggested sending him to school with a neck collar and in a more supportive wheelchair. Luckily, we have a collar AND a MyGo which has two bases: a high-low base for home use and a wheelchair base with bus tie-downs. We looked over the MyGo and determined that it's safe to go on the bus (it's not expired), but we need to buy new straps for it. We are going to send Theo to school in his stroller with the collar for now and then when the MyGo straps come in we can start sending him to school in that. 

Theo had seven observable seizures today.

Wednesday, April 19:

Josh headed off to work while Theo and I went to the small hospital in Ottawa for Theo's chest CT. Theo did really well and held still, but he didn't understand the instructions on when to breathe in and breathe out. The nurse said it'll be okay and they'll still be able to get a good picture.

After the chest CT we went and got labs done. The nurse that was on duty was fantastic and was able to get a vein on the first try!

After all that we headed home so Theo could rest and play with his toys. 

My phone kept dinging with all the lab results, but I was really interested in the chest CT results. We were told that if Theo has bronchiectasis then we would be able to get a shake vest through insurance. And I wanted to make sure his lungs were in good enough shape to undergo anesthesia.

That afternoon Ms. Jen (speech/feeding) and Ms. Jeannine (dietitian) met with us and we discussed how Theo was doing. Theo was up to 58.4 lbs and had grown an inch in the hospital (up to 47 inches tall). We reduced his calories again in the hopes that his weight will plateau. I wasn't too aggressive with Theo's food, but it doesn't seem like he's regressed too much.

The Epilepsy Specialist gave me a call and said they didn't like that Theo's hemoglobin, platelets, and WBCs were low. She lowered his dose of Valporic Acid and increased his Keppra. She wants him to get more bloodwork next week after we see the pediatrician.

We also got the results from Theo's chest CT. The radiologist noted that there is "near complete resolution" of his pneumonia, but there is some "mild residual linear atelectasis and/or scarring of the left lower lobe," which makes sense since that's where the worst of the pneumonia was. They also noted that there is asymmetric lung volumes with the right lung being greater than the left (also makes sense). And they did not observe bronchiectasis, which is good and bad.

We are going to meet with the Pulmonologist next week, so hopefully she will clear him for surgery  🤞🏻🤞🏻

The Playoffs are underway and the Lakers are doing great!

The had two observable seizures today.

Thursday, April 20:

After I sent Theo off to school I went to the local club to swim. I really do enjoy swimming, but I don't like lap swimming. I think I've said this before, but it's SOOOO boring! At least today one of the lifeguards put on some music!

[Theo with his neck collar on at school]

Josh is working over in Crawford and the line is going in right through a neighborhood. It's definitely different than a cornfield 😬

After school I took Theo to OT and then we got home right around the time some thunderstorms were rolling through. We were safe!

I bought a hard suitcase since we have to take all of this when we go on our trip to CA.

I bought a large and a medium suitcase. Even with bubblewrap, the devices all fit in the medium size suitcase! YAY!

[My cheeseheads!]

The stand came for the Millennium Falcon! 

[IT'S SOOOO COOL!]

We had to move Theo's books and a few other items to make room for the display. We are going to install a shelf (red line) above his bathroom door, so we can put his stuffed animals and books up there. Don't you dare tell me we are out of room!

Theo had three observable seizures today.

Friday, April 21:

Friday was my rest day, so after I put Theo on the bus I ran a bunch of errands. First, I took our van to Mobility Works so they could fix the automatic doors (they sometimes don't like to close), check the automatic ramp, and do an oil change. We have already put over 8,000 miles on the van since we bought it in November 🤦‍♀️

I then got my allergy shots, returned the large suitcase, and ran to the grocery store.

My best friend Katey had neck surgery today too. So Emily and I tried to keep tabs on her. We knew everything would be fine, but I know Katey was nervous. Her husband, Paul, kept us posted and she did great!

Josh went to work and is actually using his CWI! It's so fun to see pictures of the welders!

Theo had five observable seizures today.

Saturday, April 22nd:

 

Josh had to work on Saturday, which left me in charge of exchanging out our large couch. Remember how we bought a couch on January 13th? And then it was delivered broken on February 25th? And then it was examined by a carpenter on March 9th and he deemed that it was broken during transportation? AND THEN, Darvin said that the manufacturer would give us a new one, but we had to wait 6 weeks?! So when my brothers came to visit we had to put blocks under the couch, so we could sit on it?! 

Yeah, so Darvin finally brought us the new couch today. I refused to sit on it until Josh got home and reinforced it.

That afternoon I had my longest workout yet: 3 hour bike ride and 2 hour run.

I finished my Utah bike series with Yuri Hauswald (and started an Iceland series with him) AND also finished my Boston Marathon series with Tommy Rivs.

[I burned a lot of calories today and I am sore]

That night we watched the Lakers beat Memphis and go up 2-1!

Theo had four observable seizures today.

Sunday, April 23rd:

I was super sore from my workout yesterday, so I stretched and we all relaxed at home.

I thought this was very interesting:

Theo had six observable seizures today.