Christmas 2022

Let's begin the countdown to Christmas!

Monday, December 19th:

I finished getting Theo's gifts packed up and safely attached them to his wheelchair. They made the wheelchair a little top heavy, but it was still safe 🙂 I wasn't able to fit all the gifts on his wheelchair, but since I would be going to Theo's school to feed him today, I figured it would be okay for me to bring the rest of the gifts later.

Theo was very excited for PJ day!

I put Theo on the bus, went to the basement to exercise, and then got ready to go to Theo's school. Since I wouldn't be home for the piano tuner, I left her a few notes about a couple keys that were bothering me.

I arrived at Theo's school, passed out the rest of Theo's presents, and then went to Theo's classroom. The kids were sitting in their seats (adorable!) while they learned about religious celebrations around the world. I sat next to Theo and gave him his food while he teacher showed them slides about Ramadan. 

After feeding Theo I headed to Starbucks to kill some time, work on a few things on my computer, and get a hot chocolate. I messaged Theo's Epilepsy Specialist and she asked me to increase Theo's clobazam dose in the hopes that we can start to decrease his clonazepam in the next few weeks. She also asked if we could do some more bloodwork in the next few weeks. I then reached out to Oncology and Hematology and told them we were going to do bloodwork for Epilepsy, so if they wanted us to do some for them we can. She said that was a good idea and sent over the orders. We'll get all the bloodwork done next week when we are in Ottawa getting Theo a CT scan and meeting with Neurosurgery.

Since Theo's aid, Ms Jess, was still quarantined, so we decided that it would be okay if she came to the house and waved to Theo from the other side of our glass storm door. That way Theo could give her his present. He was very excited when she showed up at the door!

[Looking good for the Chargers! Still gotta clinch a spot though!]

We kept hearing about this nasty storm on the news. It was scheduled to hit here on Thursday around noon, so Josh decided that he would cut his trip to Wisconsin a day short and drive home on Wednesday. Theo's therapists were also concerned so we moved Theo's OT appointment from Thursday to Wednesday and cancelled PT on Friday.

Theo had one seizure today.

The next day (Tuesday, December 20th) was pretty similar to Monday. I went to Theo's school again to feed him and then took him to therapy.

[I love Theo's art!]

[More news on the upcoming storm]

Josh was able to see his dad (George), step-mom (Julie), mom (Grammy Suzi), nephew (Braxton), grandpa (Grandpa Joe), sister (Jessi), and others while he was in town, but he only took one picture:

I put Theo on the couch next to me and we took some selfies and sent some Marcos!

Theo had one seizure today.

The next morning (Wednesday, December 21st) I told Theo that he was going to ride the bus "two times today." He doesn't like change and I usually pick him up from school, so I didn't want him to be worried. It was an early release day, so Theo could take the bus home and take a nap before we went to OT and then had therapy with his feeding/speech therapist and dietitian. 

Theo and his classmates had a fun final day at school. They played some fun Christmas games, but still worked hard. AND Theo's new chair showed up! YAY! He sits in his wheelchair a lot, but now he will be able to sit upright in a more supportive chair during some of his lessons.

Josh got home right after Theo's therapy. It was already snowing when Josh left Superior, but luckily it was pretty clear once he passed Maddison. Phew!

[Bring back the sun!]

Theo had one seizure today.

Thursday, December 22nd:

We made a grocery/storm survival list and Josh ran to the store before the storm hit. At about 10:00 AM it started snowing and right after Josh got home at 11:00 AM the wind picked up. We didn't leave the house again after that.

[Sooo accurate!]

Our snow totals kept dropping, but the wind speed kept increasing AND the wind chills dropped some more.

[Storm is starting]

This storm was awful and affected people across most of the country. 

Theo had two seizures today.

We woke up the next morning (Friday, December 23rd) to a little snow, but BITTER windchills. I opened the door slightly to take this picture and the metal door handle on the storm door was so cold it felt hot! 🥶🥶

We spent the day watching Christmas movies and checking in on the news. In the afternoon while we were watching Strange World, we lost power. Luckily it was only out for a few minutes and our house is pretty insulated. But other people around the country were not so lucky.

Later that night we made hot chocolate and watch the infamous Star Wars Holiday Special. I've seen bits and pieces before, but never the entire thing. And it was awful. Good thing we watched it on YouTube and I could speed up the bad parts.

[Carrie Fisher actually has a pretty nice voice]

I love Star Wars, but this was just painful. No wonder George Lucas demanded all copies to be destroyed.

Hey look! Our snake plant grew some flowers!

Theo had two seizures today.

MERRY CHRISTMAS EVE!

We were able to FaceTime with most of my family on Christmas Eve morning. We were only missing Brodee, Cason, and Hayden. It was so fun to see everyone and chat for a bit. The kids are getting so big!

It was SOOOO COLD outside and these two doves took refuge right outside our window. I know they aren't turtle doves, but I think it's a good sign!

That night we watched my FAVORITE Christmas movie: The Muppet Christmas Carol! It's a tradition and I love it!

We also made Mexican food, which is a tradition that Missy brought to the family 😋

Theo was supposed to put out this "Reindeer Food" but it was just too cold and windy. I hope Santa will still find us!

[🙃🤣]

Theo had one seizure today.

CHRISTMAS DAY!

Looks like Santa found us!

We started the morning with another tradition: pigs in a blanket. Our breakfast wouldn't be complete without some eggs and tea in my FRIENDS "Holiday Armadillo" mug.

We then opened presents:

[All milk chocolate Bordeaux from See's!]

Theo got some really nice gifts: a few toys, seven Tonies, and tickets to Disney on Ice!

We tried to take a few family photos, but Theo was a little tired.

[Gifts from Theo to us]

Josh brought me back these beautiful opals from Wisconsin. They belonged to his late Grandma Judy and I just think they are perfect! Thanks Grammy Suzi for passing them onto me.

[I love NBA Christmas Day!]

That night Josh made Potatoes au Gratin and steak. Everything was delicious!

Theo had one seizure today.

I hope you all had a very Merry Christmas! We are so very blessed!

Now, enjoy these funny Christmas themed memes:

AAAANNNNDDDD there's only 2028 days until the LA Summer Olympic Games!

St Judes, COVID Exposure, and Josh to Wisconsin

Monday, December 12th:

We got up early and the three of us headed to the OSF St Francis in Peoria for Theo's three month ultrasound and check up with St Judes. The ultrasound was quick and easy and then we went to see Dr Libes. She did a physical examination of Theo and then we filled her in on what has been going on over the last three months. She then informed us that she was moving away, but we will be in good hands with the other doctors. We've been seeing her (almost) every three months since January 2020. She's been so kind and professional and she will be missed.

After we got home I received a call from Dr Libes. She informed us that the doctor that reviews the ultrasound noticed a nodule on the liver. The report states: "The liver is normal in size and echogenicity. There is a hepatopedal vascular flow in the portal vein. A 1.0 x 0.7 x 0.5 cm hyperechoic nodule is seen within the posterior aspect of the right hepatic lobe." He goes on to check the other organs, which all appear to be "unremarkable." The Dr then concludes, "Interval hyperechoic nodule within the right hepatic lobe, possibly due to a hemangioma. An interval follow-up abdominal ultrasound is recommended in 3 months for further surveillance."

So, in non-doctor talk, this means that there is normal blood flow to the liver and a liver lesion (most likely benign) was observed. Hepatic hemangiomas (aka hepatic venous malformations) are the most common benign vascular liver lesions. 

Dr Libes informed me that they are not too concerned and she also recommends a followup in three months (which is what we do anyways).

Later, I received a call from another one of Oncologist from St Judes. She just wanted to make sure I didn't have any additional questions about Theo's ultrasound. She informed me that these vascular malformations can go away on their own or they don't cause any issues, so they usually leave them alone. She then asked me if Genetics was able to find anything to explain Theo's other vascular malformations (Remember that darn aneurysm and those beautiful Port Wine Stains? Those are both vascular malformations). I told her that nothing has been found yet. She said that the nodule is most likely a benign vascular malformation we don't need to get any additional bloodwork for Theo, BUT if we want to double check she can send in the orders to check for the cancer markers.

[Theo is warming up to his new friend Ricky]

Theo didn't have any seizures today.

The next morning, December 13th, we sent Theo off to school on the bus and Josh went to work. 

Theo had a great day at school and only slept for a little bit. His aid told me that he was very alert and worked hard during his therapies (with minimal whining 😬).

Theo had three seizures today.

Wednesday, December 14th, started off pretty normal. I got Theo ready for school and put him on the bus. As I was getting my exercise clothes on I got a text from Ms. Jen, Theo's feeding and speech therapist, confirming our appointment and making sure we were healthy and had not had close contact to anyone with COVID. I texted her back that we were good to go, but then three minutes later I got a text from Theo's aid. She had tested positive for COVID (with mild symptoms). I called the school to see what I should do about Theo. The principal informed me that Theo could still come to school as long as he didn't have symptoms. BUT there are only two people in the school who are legally allowed to feed Theo and they are both out sick. Bummer. I told him that I can come pick Theo up and keep him home today. The principal told me that they will likely have someone tomorrow (from another school) who can come in and feed him. 

That afternoon we Zoomed with Ms. Jen (to be on the safe side) and tested Theo for COVID (he was negative).

We set up a nice big swing for Theo and he seemed very confused about why there was a swing in our house. He loved it, but he also seemed a little concerned.

Theo had two seizures today.

The next morning, December 15th, I received a call from Theo's principal informing me that they found someone to feed Theo, but she only had time to do one feeding at 10:30 AM. I told him that was fine and I could come to the school at 1:00 PM to give Theo his meds and some water. 

I've been in Theo's class a few times, but it's always fun to go see all the kids and what they are working on. Theo was a little shocked to see me at his school, but he was fine 🙂

[Snow!]

I thought this was very interesting:

Theo didn't have any seizures today.

On Friday (December 16th) morning I received a call from the principal. You know the sub nurse that fed Theo yesterday? Well, she's throwing up. Oh boy! Sooooo Theo was exposed to COVID and the flu (probably). Good times! He said Theo was still welcome to come to school, but I would have to come feed him at 11:00 AM and give him his meds and water at 1:00 PM. I can do that!

Josh was heading to Wisconsin for the weekend so I made him take a COVID test before he left. I don't want him to get anyone sick up there! Josh is going to visit his friend Lucas in northeastern Wisconsin for a couple days and then head over to Minnesota to see his dad and Julie and then he'll go see the rest of his family in Superior. 

[Negative!]

After we got Theo on the bus I said goodbye to Josh and then went into the basement to run. About 20 minutes later I heard someone coming down the basement stairs. It was Josh! One of the belts on his Jeep broke and it wasn't drivable. He told Lucas and Lucas said Josh could borrow his girlfriends Jeep (she was staying in town for the weekend to get a few things done while Lucas went back to their house in WI)!

After a little juggling of people and items, Josh was able to borrow the Jeep and he headed north.

A couple hours later I went to Theo's school. Again, he seemed confused that I was there, but it was fine. When I showed up they were in the middle of making a "Christmas Cookie Dip!" The kids were all taking turns helping. It was adorable!

[Theo did't taste it because it had dairy]

After I fed Theo I headed to the grocery store to pick up a few things. It's a lot easier to take Theo places now that we have the van, but grocery shopping is still difficult. It gets a little complicated when I'm trying to push a grocery cart AND Theo's wheelchair at the same time. 

At 1:00 PM I went back to Theo's school to give him some water and his meds. I then hung out in the parking lot in our van. I have plenty of podcast to listen to so I don't mind hanging out in the van while I'm waiting for Theo (I do it when he's in therapy too).

After school I took Theo home and Ms Cody came over for PT.

[All the gifts are ready!]

[Lakers are moving up! Only 4th from the bottom!]

Josh had to drive on some pretty rough roads, but he made it to Lucas' house without any problems.

[Guys night!]

Theo had one seizure today.

Over the weekend Theo and I stayed home and played while Josh hung out with Lucas in Wisconsin.

[Being super strong and playing the drums]

I managed to get Theo in his gazelle all by myself! I gave him some chocolate pudding while he played with his drums and sensory bin.

[He was hesitant at first, but he touched the bells a few times]

Even though Theo didn't have any symptoms I thought it would be a good idea to give him another COVID test. It was negative and he was mad at me for sticking that q-tip up his nose. Sorry kiddo!

Theo had two seizures on Saturday and one on Sunday.