First Snow of 2023!

I've been working on my bucket list, so this week Josh and I watched Casablanca and Ben Hur. Casablanca was great and Ben Hur was LONG! Don't get me wrong, Ben Hur was also great too, but I wouldn't watch it again 🙂

Monday, January 23rd:

Theo was very excited when we sent him off to school on the bus. He's such a funny kid! He loves school, naps, and baths!

After I finished my workout I headed to the dermatologist office. I had an appointment with Tricia, so she could check and see how I was doing on my hair growth journey. She checked my head and noticed that I had a lot of new, fine baby hairs! She told me to keep up with the meds and the serum and I need to be careful with the new hair growth. She told me to be careful with headbands, hair ties, and straighteners 😬 She then told me that she can renew my prescription, but I need to get bloodwork again. No problem! After talking to Tricia I had a microdermabrasion and facial with the esthetician. It was fantastic! As I was heading out I ran into one of Theo's therapist! She was there for a facial too!

Today Splash Mountain closed at Disney World and people started selling water from the ride on eBay. I saw mason jars full of water selling for (well, asking for...) $100 a pop! I saw this post and thought it was funny:

Seriously people, don't buy water from people on eBay.

After school I took Theo to PT. He was very tired, but still tried hard!

Theo had five observable seizures today.

The next morning (Tuesday, January 24th) I listened in to our FL house HOA board meeting. I'm usually the one of a few owners that listen in. I like to know what's going on in the community 🙂

We then sent Theo off to school on the bus. After I finished working out in the basement Josh went down there to install our new home humidifier. I am so excited for a humidifier! It is too dry in the winter time. My hands are cracking and Theo's lips are very dry (we put chapstick on him all the time!). I hope the humidifier helps.

[New guy on the Lakers!]

Theo had another great day at school. He's learned to sleep on the bus, so I think that helps him stay awake more at school. After school I took him to OT. Theo was so excited to see Ms. Laura and swing on the big swing!

[Theo's old pom-pom was falling apart, so I got him a new one. He's not too sure about it.]

Theo had four observable seizures today.

Wednesday morning we woke up to a few inches of snow! It was fluffy and so pretty!

[Theo all bundled up and waiting for the bus]

It was a half day at school and they were supposed to go on a field trip to the library, but it got cancelled. Bummer. Theo got home around 12:30 PM, so he had plenty of time to take a nap before Feeding/Speech therapy and our Zoom with his Dietitian, Ms. Jeannine. Theo only gained 0.4 lbs over the last two weeks, so it looks like his diet is working!

Right before bed we changed Theo's g-tube. He went from a 12 fringe by 2.5 cm to a 14 fringe by 3.0 cm. We've changed his g-tube plenty of times before, but we've never gone up in fringe size. Dr. Robertson told us to try the 14 fringe and if we couldn't get it in put the 12 fringe back in and give him a call. He said that sometimes he needs to stretch the stoma a bit when the kids upgrade to a larger size. Josh distracted Theo while I took out the 12 fringe g-tube and put the new one in. It was a little tougher than usual, but I got it in. Theo was a bit upset, but Josh was able to calmed him down and get him to bed. Phew! I'm glad it worked out and we don't have to go all the way to Peoria to get Theo's stoma stretched. 

That night Josh and I started watching Ben Hur. The movie is 3 hours and 45 minutes, so we figured it would be best to break it up over multiple nights.

Theo had five observable seizures today.

Thursday, January 26th:

As I was putting Theo on the bus I told him I would see him at school in a few hours. I don't think he understood me, but I didn't want him to be surprised when I showed up in his classroom. His aid and the nurse were both out today, so I needed to go to the school to feed Theo his lunch. Theo was pretty shocked when he saw me! He waved and then kicked his foot ("go, go"), but I told him I was there just to give him his lunch and it wasn't time to go home. He was pretty sad about that, but then his teacher started singing a song about the seasons and he got distracted. While I was at the school I ran into Theo's PT. We chatted about Theo and what they had been working on. She showed me his new stander. It's similar to the gazelle he has at home, which is super nice and supportive. 

While I was at the school, Josh finished installing the humidifier!

After school I took Theo to OT.

[I can't believe it's been three years already]

Theo had four observable seizures today.

Friday, January 27th, was a pretty busy day for me. After Theo went to school I did my strength training workout, drove to the lab to get my blood drawn, headed to the allergist to get my shots, and then drove up to Crumbl to get their chocolate satin pie cookie! It was delicious! As I was driving home it started snowing. At first it wasn't too bad, but then it started sticking to the roads and people were sliding out. Luckily, the van is over 6000 lbs (due to the modifications), so it did very well in the snow. 

It kept snowing after I got home and Josh was nervous about me going to pick up Theo and take him to PT, so he came with me. It was warming up and, thankfully, the roads were pretty clear. We made it to PT without any issues. 

Ms. Cody said that Theo was very alert and in a good mood during all of PT. He was even laughing and being "super strong" while working on standing.

Theo had four observable seizures today.

We stayed inside over the weekend (we don't go out much anyways) due to the weather. It snowed on and off all day on Saturday and Sunday. 

Theo played in his gazelle stander, sat in his squeezie, and played with his dada. Josh and I watched the Lakers ALMOST beat the Celtics and then watched the Bengals lose in a close game. Bummer.

[iPad + dada = motivation]

There was a huge miscall at the end of regulation. It cost the Lakers the game.

My little sleepy boy. Playing his drums with his eyes closed.

Theo had one observable seizure on Saturday and Sunday and he took two naps on both days!

Home Improvements and Urology

Monday, January 16th: Martin Luther King Jr Day

Did you know that MLK Jr is the only other American, other than George Washington, whose birthday is a national holiday? Or did you know that MLK Jrs birth name was Michael? He and his father both changed their names after a 1934 trip to Germany, where they were inspired by protestant leader Martin Luther. 

We had a relaxing day at home and I started listening to a Star Wars audio drama. I had a hard time picturing the characters at the beginning, so I had Wookiepedia accessible to help 🙂

Theo went to PT in the morning and he had five observable seizures today.

The next morning, January 17th, we all headed down to Peoria for Theo's six month post-surgery checkup with Urology. Dr Noh checked Theo's surgery area and said everything looked great and he can officially graduate from Urology! Yay! Theo had graduated from six Specialist so far and now only has to see 11 regularly. It's still a lot, but it's better than 17 🙂

I've been trying to get the OSF in Peoria to send his new doctors at Lurie's the images from Theo's last two MRIs, last two angiograms, and his EEG from February 2022. They've sent over the reports, but not the actual images. I've called numerous times and everyone I've talked to said that they would send the images on DVDs to Luries, but they haven't. I called them again and said I was coming down to Peoria and would be happy to pick up the DVDs. They said on the phone that the DVDs would be waiting for me at the front desk. I was a bit skeptical, but very pleasantly surprised when I went to the front desk and the DVDs were there! 

I sent a message to Theo's Epilepsy Specialist at Lurie's and she was very happy that I had the DVDs and she was looking forward to analyzing his EEG from February 2021. 

[Angiogram - you can clearly see his aneurysm (it's that giant black mass) and the staples from where they cut through his skull to access his brain to fix the fistula]

I made Theo some chocolate pudding with oat milk, but it was a little sticky. I mixed it with some coconut whipped topping and it was a hit! Kinda. He didn't hate it 🙂

Theo had two observable seizures today.

Wednesday, January 18th:

We put Theo on the bus and then I went to the basement to work out. Josh and I then headed out to run a few errands and grab some lunch at Station One. It was pretty good BBQ! The pulled pork was a little dry, but the Mac-n-cheese and cornbread were both delicious!  

After we got home Josh started working on some home improvement projects. We have five of these lights in our home. 

Josh replaced two of them with these new ones that have bubble glass. They look really nice and they put off more light than the frosted glass ones.

He also ordered three other fancier lights, but they won't be here for a few weeks. Those will be installed in our closet, the main door entry way, and the laundry room.

We then replaced these frosted shades in our kitchen with bubble glass ones. 

[Before]

[After]

Theo's feeding/speech therapist came over and we worked on Theo while Josh worked on installing a new chandelier in the dining room.

[Before - I realized I don't have many picture of the old chandelier because I thought it was so ugly, so here's a picture from when the piano arrived 😬]

[During]

[After]

Josh ALSO installed a new rainfall shower head. The old was was tiny and really high up. I never used it.

[Before]

[After]

Theo had two observable seizures today.

The next morning (Thursday, January 19th) Theo headed to school on the bus while Josh and I ran some more errands and worked on our to-do list. Right as I was picking up Theo to take him to OT I received a call from Theo's Epilepsy Specialist, Dr. Garcia Pierce. She wanted to talk to me on the phone about the message I sent her a few days ago (about Theo's medications and the DVDs). I asked her what her thoughts were on taking Theo off of his medications. Before he was diagnosed with Epilepsy and medicated he was having 25 seizures a day. Now he is having 50 a day, but they are less intense. She said they would rather have him have 50 less intense seizures a day than 25 more intense seizures. Those more intense seizures have a higher chance of triggering a tonic-clonic seizure, which can be dangerous and deadly. I had a feeling that's what she would say and I get it. These meds can be awful, but if there is ANY chance that they are preventing a larger seizure then we will keep him on the medication.

We also talked about the DVDs I got from Peoria. She said she will look through everything and once Theo has his PET and MRI on February 6th she will recommend the VNS surgery to her fellow Epilepsy Specialists. Hopefully the Neurosurgeons aren't too busy and we will be able to get that scheduled in the next few months.

[At least we are #1 at something!]

Theo had five observable seizures today.

Friday, January 20th:

Theo had another great day at school and worked hard at PT.

He had four observable seizures today.

Saturday & Sunday:

We didn't even leave the house over the weekend. Theo stood in his Gazelle for almost an hour and sat with us at dinner. We tried to encourage him to play with his toys as much as possible, but he just really wanted to be close to his dada.

We got a tiny bit of snow Sunday morning, but it was all melted by noon. Bummer. I'm so sick of the gloom without the snow.

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

[I feel this]

[💯]

We didn't go to Star Wars Celebration last year, but I did live stream it in the living room on our huge TV, while texting with my brothers. After they announced that Celebration would be in London this year I told Luke and Ryan that they should come to my house and we can all watch it together. This week Luke bought his flights to Chicago and Ryan said he will drive up from Ohio! I am so excited! We are going to make Star Wars food and hopefully get some awesome Star Wars news! NERDS UNITE! 

Bloodwork, New Couch, and the End of the NFL Season

Monday, January 9th:

After a LONG Christmas break, Theo is FINALLY back at school! YAY! He was supposed to go back last Thursday (1/5), but he was at Lurie's for his EEG.

This is the best position that the Lakers have been in all season. 5th from the bottom!

Theo had a great first day back at school! He took one nap, but they said he was very alert and happy.

[Taking a nap in his Rifton Chair]

After school I took Theo to PT to see Ms. Cody. He was very tired, but knows he has to work hard so he can go on the swing.

I got a call from Oncology and Hematology (St Judes). They are concerned about Theo's current MCV levels. High MCV levels can indicate low B12, low folate, or hypothyroidism. I told them that we are heading to Ottawa tomorrow for a doctors appointment and we could get bloodwork done there.

[Lakers are dropping - 4th from the bottom]

Theo had three observable seizures today.

The next morning (Tuesday, January 10th), Josh, Theo, and I headed to Ottawa for Theo's annual appointment with his Pediatric Surgeon. Dr Robertson put in Theo's g-tube back in January 2019 and we see him once a year so he can check on the g-tube. He said Theo's tube looks good, but he may need to go up in size because the button is getting a little tight.

After seeing Dr Robertson, we headed next door to the St Elizabeth so Theo could get his blood drawn for Oncology and Hematology. Usually these nurses are great, but they really struggled today. They ended up poking Theo four times and at one point there were five people working on him. It was pretty awful.

[Four pokes with two in his hand]

After Theo got all his bandaids, we headed home for a quick nap. Later that afternoon I took Theo to Thrive for OT.

That night we weighed Theo and he is up to 57.6 lbs and he's 46" tall! HOW?! How is he still gaining weight?! Ugh! Good thing we are meeting with his dietitian tomorrow.

Theo had one observable seizure today.

Wednesday, January 11th:

Theo had a great day at school and rode the bus twice!

[New iPad stand]

While Theo was at school we received the final report from his latest EEG. The doctors concluded that Theo has right hemispheric slowing, multifocal interictal discharges (most predominant on the left), some slow spike wave activity in sleep, and numerous (up to 50 a day) tonic seizures with diffuse onset. They also suspect that Theo could have Lennox-Gastaut Syndrome, which could explain why the seizures are not able to be controlled with medication and why the seizures are different then they were when he had his last multi-day EEG in February 2022. I sent his Epilepsy Specialist a message and asked her if we need to keep him on medication since he is still having so many seizures a day. If the medications aren't stopping the seizures and they are causing his regression - we should be able to wean him off of them, right? I don't know. That's why I asked the specialist. Hopefully she will get back to me soon.

Ms. Andrea (teachers aid) made Theo and each of the kids in his class a blanket for Christmas! How sweet! She's very talented!

After school Ms Jen came over for feeding/speech therapy and we Zoomed with Ms. Jeannine. I updated them on everything that's been going on and then informed Ms Jeannine that Theo had gained weight again! It doesn't make sense, but we need to cut Theo's calories again.

Theo had four observable seizures today.

The next morning (Thursday, January 12th) we put Theo on the bus and then I went into the basement to workout. After getting ready, Josh and I went on a lunch date to Sovereign. The food was fine, but it was nice to just hang out with Josh without any distractions. We then swung by Milette's Cakes to get some cupcakes 😋

After Kindergarten I took Theo to OT.

Theo had one observable seizure today.

Friday, January 13th:

After we sent Theo off to school and I went for a run, Josh and I drove over to Orland Park to go shopping. First we swung by Menards to look at chandeliers and then Home Depot to look at carpet samples.

The only carpet we have in our home is in our bedrooms. Even so, it's going to be expensive to replace it all. We aren't in a hurry, but I'd love to go with one of these patterns:

Next, we went to Darvin to look at couches. There are SOOOO many couches and they are all different. Some are super large, some are overly soft, and some have strange arm rest.

[WAAAAYY too big!]

[Our second choice - it was a little too soft]

After sitting on tons of different couches, we finally found one that is firm (but not hard) with nice arm rest. They didn't have the color we wanted in stock, so we will have to wait 8 weeks for it to be made and delivered. That's fine. We aren't in a huge hurry.

After shopping we went to get Theo from school and then took him to PT.

While Theo was at PT I got a message from Oncology and Hematology. They said that all of Theo's blood test came back normal (his B12 was actually very high). So they don't know what is causing his high MCV levels, but they want him to get some more bloodwork done. I asked them if we could wait until February 6th when he is under anesthesia for his MRI and PET scan, and they said that was fine.

Theo had two observable seizure today.

[Third from the bottom... UGH!]

Theo had two observable seizures today.

It rained on Saturday (January 14th), so we stayed inside, relaxed, and watched the Chargers game.

[Theo loves his new swing!]

[Looks like Theo has a little infection - we started ear drops today]

Luke and I are ready for the game! Go Bolts!

Off to a great start!

AAAANNNNDDD the Jaguar's made the third largest comeback in NFL history. Chargers are out of the Playoffs. Dumb. 😭😭

It rained on Sunday too, so we stayed inside and played. Theo stood in his Gazelle for 50 minutes! He is so strong!

Looks like we may be making a trip to Green Bay next season!

By Sunday night Theo's ear was clearing up. He had one observable seizure on Saturday and one on Sunday.