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.

Garage Ramp, Swing/Lift, and the Gazelle

This past week was a pretty typical week for us. Theo went to school and therapy, Josh worked, and I ran errands and worked out.

Monday, December 5th:

Theo had another busy day at school. He has been working really hard!

We finally got the smell out of the Gazelle cushions, but rust showed up because I washed the parts too much. We took the Gazelle apart and scrubbed all the metal down with a rust remover. It was a pain, but I am hopeful that we are done dealing with all this mess and Theo can now start to use the Gazelle how it was intended.

My dad flew to Orlando to do some work on the rental house and condo. It was the day before his annual pass expired, so we told him he needed to go to Magic Kingdom. Disney also announced that they would be shutting down Splash Mountain in January and it will be closed for a year while they turn it into a Princess and the Frog ride. He went to ride Splash Mountain one last time, but when he got over there he saw how wet everyone was getting off the ride and decided against it! 

While he was down in Orlando he got a doughnut at the best doughnut place: Everglazed! Hope you had a great birthday and thanks for working on the house and condo!

Theo had five seizures today.

The next morning (Tuesday, December 6th), I put Theo on the bus and then sent a message to his Epilepsy Specialist. Theo had bloodwork done while we were at Lurie's last week and I was curious if she was going to change his meds based on the results. His doctor called me back immediately and we discussed Theo's bloodwork. She said his platelet levels were a little low which is likely due to a side effect from the valporic acid. She lowered that med and increased the Clobazam slightly. 

While Theo was at school, Josh installed a ramp in our garage and we (I helped!) installed the eye bolt in the family room.

Theo's aid sent me a video of Theo asking for "more more" of his diary-free chocolate coconut yogurt. After school I took Theo to OT. He had three seizures today.

Wednesday, December 7th:

I put Theo on the bus, went for a run, and then worked on our family tree. I don't think I mentioned this before, but I've been working on Family Search and Ancestry to find out more about Josh's family history. While we were in Belgium, Josh mentioned that his Grandma's family was from there. I wanted to see exactly where they were from so I started to research. It's been pretty fun tracking his ancestors down!

About an hour before school was over, Theo's aid texted me to tell me that Theo just had three seizures in one hour and she was going to give him his emergency pill (per his Seizure Action Plan). I told her that was fine and to let me know how he responds to the pill. Theo came home on the bus and then took a nap. That emergency pill makes him pretty tired. 

After Theo's nap we met with his feeding/speech therapist and his dietitian. Theo continues to gain weight, so we are decreasing his calories again.

Theo had six seizures today.

The next morning, December 8th, Theo headed off to school and Josh headed off to Naperville to deliver a bunch of paperwork to the corporate headquarters. His current project is wrapping up. We are very grateful that he has work so much this year (we NEED the health insurance), but it will be nice for him to have a break!

Theo and his class made these adorable Christmas decorations. After they were done decorating they went around the classroom and said who they wanted to give the decorations to. Theo said "dada" and when they asked him if "mama could have one too" he yelled, "DADADA!"

Theo had two seizures today.

Friday, December 9th:

Theo had another great day at school. His school OT and Speech therapist both sent me emails letting me know what they were working on at school and how well Theo was doing. After school, Theo's PT came over and helped us set up the Gazelle.

He looks so good!

The stander is super supportive, so Theo should be able to stand in it for a long time.

After PT we got a delivery for Theo's swing set. We hooked the rope onto the eye bolt and hooked the swing to the rope. 

It works great! This is actually the same set up that they have at the PT and OT clinics. 

We also got a pulley system, so we could lift Theo off the ground and into his wheelchair. The pulley system worked great to hoist Theo up, but there was no way to lower him down without releasing all the tension on the pulley. We decided that the pulley wouldn't work so we are returning it and we ordered an electric lift that we will be able to hang from the eye bolt. 

Theo had three seizures today.

We had a pretty lazy weekend. Josh and I worked on a few things around the house and installed the new lift system to make sure it would hold Theo.

Theo LOVES his music. Sometimes he lays on his drums and iPad and also needs his Tonie close by. It's very noisy and can get a little overwhelming, but Theo loves it!

Theo didn't have any seizures on Saturday and only had one on Sunday.

Our new Chrysler Pacifica and our visit to see the Epilepsy Specialist

We were contacted over the weekend by Mobility Works. They said the Chrysler Pacifica was ready for us! Eek!

Monday, November 28th:

After I put Theo on the bus I met Josh at Mobility Works. The Pacifica was there and looked all shinny and clean! I brought my DVDs and made sure that the DVD player worked and I knew how to use it. Everything looked great, so we signed the paperwork and handed over the keys to our Traverse.

[Four tie downs for Theo's wheelchair]

[Backseat]

[TVs]

I am sad to say goodbye to the Traverse, but this van is going to be so much better for all of us.

 I left the dealership and headed to Walmart to pick up a few more cleaning supplies. I am so determined to get that cigarette smoke smell out of the stander pads.

That afternoon Josh met me at Theo's school so he could see Theo the first time he used the ramp.

Theo loves to be in his wheelchair, so the transition was easy.

I took Theo to PT and then we went home and had a Zoom meeting with our PUNS list case worker. She asked a bunch of questions and said that we qualified to get on the PUNS list. This doesn't guarantee us services, but it's a step in the right direction.

That night I joined our annual Zoom meeting for our local HOA. I was the only other person on the Zoom besides the board. It was a quick meeting, but I like to know what's going on in the community (did you know that beavers keep causing problems in our pond?!) and they said that our HOA fees were going to raise slightly in 2024. See? Good to know!

Theo had one seizure today.

The next morning (Tuesday, November 29th) I received an email from Holland American letting me know that my case was closed, my money had been refunded, and that they are very sorry for the confusion. It's about freakin time! That was beyond frustrating. 

After I sent Theo off to school I went downstairs and finished my running series with Knox. We ran all over South Africa and it was a lot of fun! I'll definitely do another series with him in the near future. 

Theo had another great day at school and has been asking for "more more" yogurt during snack time!

[Art]

I gave these darn pads so many scrub downs with a combination of dish soap, baking soda, vinegar, and hydrogen peroxide and they still smelled. I then sprayed them with a bunch of different "odor reducing" sprays and those didn't work. Finally we bought an ozone air purifier (we have one for the condo to get rid of smoke smell). We put it in a box with the pads, sealed it up, and let it run for three hours.

[We couldn't seal up the box completely, so we sealed up the room too]

After three hours I went in and smelled the pads and the smoke smell was GONE! It returned a few hours later, but it was very faint. Over the next few days we alternated between the ozone machine and sealing the pads in the box with charcoal and putting the box in the sun. The combination of these two did the unthinkable and the pads no longer smell! It's a Christmas miracle!

That night we weighed Theo so we could discuss his weight with his dietitian tomorrow. Even though she had reduced his calories he is still gaining! It's hard to burn calories when you sleep a lot and aren't very active. 

Theo had three seizures today.

The next day (Wednesday, November 30th), Josh, Theo, and I headed up to the Lurie Children's Hospital of Chicago's Epilepsy Center to meet with the Epilepsy Specialist. It only took us an hour to get from our house to the parking garage, which isn't too bad. 

[Theo fell asleep during Moana]

We found the right floor (it's strange to be in a high-rise hospital) and met with two nurses and the doctor. The meeting lasted about two hours. The Specialist was great and listened to all of our concerns. I told her that we were concerned with Theo regressing and that the four meds he was currently on were working (he is down to about 2 seizures a day), BUT they make him SOOO tired. It's awful. After listening to our concerns she asked us a lot of questions. After she gathered all the data she made the conclusion that Theo needs intervention. She said that we can continue to adjust his meds, but she feels that he is an excellent candidate for VNS or RNS surgery. Josh and I agreed and we told her that we would like to move forward with surgery as quickly as possible. She told us that they would need to admit Theo to the EMU (Epilepsy Monitoring Unit) for 4-5 days for testing. He will need to undergo a CAT scan, an MRI, and a video EEG. Once they have collected enough data they will present it to all of the Epilepsy doctors and they will vote on the next steps (likely VNS or RNS).

We also discussed Theo's current medications. The clobazam has been the best for reducing his seizures, but it makes him the most lethargic. Currently he takes 2 mls in the morning and 5 mls at night. She said we can give him the whole 7 mls at night and that should help him to not be so tired during the day. We then discussed Theo's future care. She said that they were willing to take him on as a patient and they would be able to provide care for all of his Neurology needs. She then had us take Theo downstairs for some bloodwork. Before we headed out she said that a scheduler will be calling us soon to talk about dates.

Overall the meeting with the Epilepsy Specialist went great and we are looking forward to working with the team in the near future!

It took us TWO hours to drive home from the hospital (it's on the Near North-Side of Chicago). While Josh drove I Zoomed with Theo's feeding/speech therapist and his dietitian. They are also very excited for Theo's next step with the Epilepsy Specialist. We also discussed Theo's weight gain and his dietitian suggested that we decrease his food intake slightly again, but she wanted me to consult with his GI Specialist first.

After we got home I sent an email to Theo's Neurologist, Dr Sinha, letting him know how the meeting today went. Dr Sinha was the one who recommended that we get a second opinion from the Specialist at Lurie's. I thanked him for all his help and let him know that we were going to move Theo's care to Lurie's. I also emailed Theo's GI Specialist about Theo's weight gain.

[The Lakers aren't in last place anymore]

Theo had three seizures today.

Thursday, December 1st:

I put Theo on the bus, did a strength training workout, and then headed to my appointment with my esthetician. The last few times I saw her she did a microdermabrasion and a facial, but this time she did a dermaplaining treatment. It was so cool and my face felt amazing!

That afternoon I picked Theo up from school and took him to OT. Everyone was very excited to hear all about our experience at Lurie's 🙂

I also got a call from the scheduler for Theo's EMU stay. She said they can get him in the week of February 6th, but she MAY have a cancellation on January 3rd. I told her that if January 3rd open up (or any other days) we will gladly take it! 

Theo had one seizure today.

The next morning (Friday, December 2nd), I put Theo on the bus, ran a few miles, and the met up with Josh at Costco. We bought a bunch of Christmas candy and some cute toys for Theo's classmates.

After I got home I started putting together Christmas bags for all of Theo's therapist, classroom helpers, and friends.

[Aren't they so cute?!]

As I was about to leave to go pickup Theo from school I got a message from his teacher. She said that he was having a cluster of seizures. I told her that if he had one more seizure before I got there that they should give him his emergency pill. When I arrived at the school I was met by Theo's teacher, his OT, his aid, and the school nurse. They all looked so worried. Ms. Jess told me that he did have another seizure so she gave him his pill. She then said he had one more after that. While we were talking he had another one, but it was very small. I told everyone that Theo will be fine and that they did the right thing.

Ms Jess thinks that Theo got overwhelmed with their class field trip today. They went to Walmart to pick out some gifts for a charity. She said Theo was really excited when they got on the bus, but was really upset when they got to Walmart. Usually he loves to go to the store and walk around, but I think he was just overwhelmed and didn't like the change of scenery. When he gets on the bus he is supposed to go to school or go home. That's it. Getting on the bus and ending up at Walmart wasn't right to him. Theo likes consistency (don't we all?), so I agree that he was probably confused and overwhelmed, which can cause seizures. 

It's been a while (June 13th) since Theo's had nine seizures in one day. Of course, he was fine, but he was extra tired when we arrived at PT. That emergency pill really knocks him out.

Over the weekend Josh and I worked on things around the house while Theo rested and played with his toys.

[I got a massage table for the van, so I can change Theo's diapers in public]

[Bolt for the swing/lift system]

I made Theo some diary-free chocolate pudding and he was really into it! He kept licking his lips and chomping! 

Since the pads for the Gazelle stander were odor free, Josh put it back together and then we put Theo in it.

It's super cool because it tilts all the way back and you can load Theo while he is laying down.

He looks pretty good, huh?! We just need to take out one of the pads, lower the headrest, and fix the left foot hold. Easy!

We are going to install a ramp in our garage for Theo's wheelchair. To make room Josh bought a shed and moved some of his supplies out there.

Next spring Josh will probably make a pad and put the shed on the side of the house. But it can stay in the backyard for now.

Theo only had two seizures on Saturday and two on Sunday.

It's sad and pathetic that this needs to be stated over and over again in 2022, but it does. The Holocaust happened. If you don't believe it did, I really hope you will take some time to reflect on yourself and why you believe that.