Day at the Hospital and a Bad Cold

Monday, April 22nd:

Josh went to work while Theo and I made the long trip to the OSF St Francis Children's Hospital in Peoria. 

Up first was blood work. We are hoping to graduate from St Judes this month. Since January 2020 Theo had to get his blood work done, under go an abdominal ultrasound, and get a physical exam every three months to check for tumors. When he turned four he graduated from getting his blood work done, but he still had to go in every three months for the ultrasound and physical exam. This is very standard for kids who are diagnosed with hemihypertrophy (hemihyperplasia).

Theo's doctor thought it would be a good idea to check his blood one last time before he graduates. 

I warned the nurses that Theo was a hard stick and the best place to get him was his hand. They listened and got out a vein finder device. They found a good vein and she got him in just one poke!

After the bloodwork we went to St Judes to see Dr. Kumar. We chatted for a few minutes and then she examined Theo. She said as long as his blood work and ultrasound results are good he will officially be done with his exams. She did say that if we wanted to check in yearly for a physical exam and visit we were more than welcome to do that. We will be back at the hospital on April 29th for hopefully Theo's last abdominal ultrasound! 

After St Judes we went to see Theo's new GI Specialist, Dr. Ullah. As we were walking through the hospital a group of nurses asked if they could give Theo a balloon. Of course! One of the nurses gave Theo the balloon and then told me she recognized Theo. Yeeeaaaah, we come here a lot 😬

Dr. Ullah and I went over Theo's history and medications. He then asked how he was doing and if I had any concerns. I told him Theo was doing really well and Dr. M left us in really good shape before she left. He said he wasn't going to change anything if Theo was doing well. I thanked him for that! He said to come back in 6-8 months unless something else comes up.

Rest of the Week:

The next morning I started getting Theo ready for school, but he was cough A LOT. I decided to keep him home so we could focus on respiratory therapy.

Unfortunately Theo and I both caught a nasty virus and we had to cancel all of our activities for the rest of the week. Theo was so mucousy that he was having GI issues and was constantly gagging on his post nasal drip. This virus reminded me a lot of Metapneumovirus (HMPV), which is what he had this time last year. Back then we didn't have "The Vest" and our other tools, which is likely why Theo ended up being intubated in the PICU (well, that and the Clobazam 🤦‍♀️). We weren't going to let that happen again!

Josh found skyr at the local grocery! It's delicious!

Theo and I stayed home all week and tried not to get cabin fever. By the weekend Theo was feeling much better. He starting crawling around and playing with his toys which is a good sign.

Josh's sister got married this week! Congrats to Jessi and Sam! ❤️

The Lakers were on the brink of getting swept by Denver, again, but they pulled out a win and forced a Game 5! Will they be the first team to ever come back from being down 3-0?! Probably not, but we can hope!

And poor Theo woke up with a bloody nose Sunday morning. We set up a humidifier in his room at the beginning of the week, but I guess all those boogies just dried up his nose too much. 

Back to Life after Iceland Vacation

Tuesday, April 16th:

Josh got up early and headed to work. We are both happy that work is starting up again, but it sucks it had to be the morning after we get home from vacation! 

I knew I would be tired, so my mom got up with Theo and got him ready for school. Surprisingly, I didn't sleep in too much, so I was able to take Theo out to the bus and catch up with his bus driver and aid. I also love seeing Theo's classmates! They are so stinkin cute! 

I spent the day doing laundry, catching up on some household items, and hanging out with my parents. After school we went to get Theo and took him to PT/OT and then to see Sherman. My parents were very excited to see Theo ride Sherman.

Theo did great! I think he was showing off!

Theo had 14 observable seizures today including one that was 94 seconds long and one that was 60 seconds long.

Wednesday, April 17th:

Josh was up early and gone before the rest of us woke up. I got Theo ready for school and then took him out to the bus.

He had a great day at school! After rode the bus home and then took a nap.

[Awwww Theo and his new favorite bedtime toy]

After his nap Ms. Jen came over and Ms. Jeannine Zoomed in for therapy.

Theo had five observable seizures today.

Thursday, April 18th:

After Theo went to school my parents packed up and headed back to Ohio. We are so happy they were able to come out and watch Theo for us. They said the new bathroom worked great for them and Theo! That's so great to hear since it was expensive!

[Papa and Theo]

[Papa, Theo, and Grandma]

After my parents left I headed to the allergist to get my shots. The trees have bloomed in the last week and I can't miss another week of shots. I can tell this allergy season is going to be rough!

I saw these cool egg carton clouds on my drive home. They were really spooky!

Ms. Jess said that Theo had a great day at school and she sent me this picture of him washing his spoons! Nice job Theo!

After school I took Theo to OT. He was very excited to see Ms. Laura and to go on the swing with Ms. Jill. 

Theo's school speech therapist was able to get another trail for his eye gaze device and this time he gets to bring it home! After OT I set it up and asked Theo if he needed anything. He said he wanted a snack. I asked him if he was sure and he made the sign for "yes." 

I told him I would go get him some "stars" and while I was in the pantry he said, "hurry up!" Oh child! We REALLY need to work on your patience! 🤣🤣

After about 30 minutes Theo said he wanted to rest and watch TV. It was exactly 6:30 PM and that's when Wheel of Fortune comes on. Can he tell time?!

I was very impressed with Theo and how comfortable he is using the eye gaze device. I hope we get approved for one we can use in the home long term.

Theo had eight observable seizures today.

Friday, April 19th:

After Theo got on the bus I headed to see my family doctor for a yearly check up. She checked the bump in my mouth and wrote up a referral for an ENT. She said that insurance companies won't pay for yearly paps anymore and they will only cover them every THREE years. That's ridiculous! But with my history she said that they can appeal and I can come back in a couple months for an exam. It blows my mind that insurance companies don't want to cover preventative exams. 

The NBA Playoffs are set and my Lakers are going up against Denver again. This is going to be a rough round.

After school I took Theo to PT. 

He had nine observable seizures today including one that was 85 seconds and one that was 68 seconds long.

Weekend:

Josh will be working six days a week for the foreseeable future. I am so grateful that he was able to have time off and be here when the bathroom was being remodeled, but our bank account has been moving in the wrong direction for a few months. It'll be good to get the savings account replenished! Thanks Josh for working so hard for our little family! We love all you do for us!

Theo lost his first tooth! Josh noticed it missing on Sunday, but we aren't sure when he lost it. Ms. Jess said it was there on Friday at school. So, it probably fell out in his sleep either Friday or Saturday night. I definitely didn't see any blood in his bed and I can't find the tooth. Maybe he swallowed it 🤷‍♀️

I ordered these two books for book club. The last ones we read were really good, so I'm excited to dive into these ones:

While we were in Iceland

Theo spent 10 days hanging out with my parents while we were in Iceland. They made sure Theo went to school every day and attended all of his therapy appointments. My parents took great care of him and they had a lot of fun!

[Theo loves walks]

[Theo thinks Ms. Jess is silly!]

[Happy at school]

[What happens when Papa is in charge!]

[Theo cuddling with wolfy]

[Theo has been eating really well for Ms. Jess]

[Holding hands with Papa]

[We spied on Theo a few times 🙂]

When we called Theo gave us the side-eye. But we did get a smile when Josh started talking ❤️

Thanks again mom and dad for taking care of Theo! I know he is a lot of work and we really appreciate it!

Iceland Adventure: Part X - Blue Lagoon and Home

Monday, April 15th:

We slept in, ate a late breakfast, packed up the car, said goodbye to our Selfoss cottage, and headed to the Blue Lagoon.

As we approached the Blue Lagoon, we could see the cone and smoke from the Fagradalsfjall volcano. The Blue Lagoon is only five miles from the volcano and they've had to shut down the lagoon a lot especially when the lava got too close or when the wind blew the toxic smoke towards the resort. 

[Fagradalsfjall]

We turned down a road and followed the signs to get to the Blue Lagoon. The road and the area were destroyed not that long ago by the new lava flow. The road was repaired quickly (since it's made out of lava) and a HUGE lava rock wall was erected around the geothermal power plants and the Blue Lagoon to protect them. It's crazy to see how close the lava got to the power plant! It would be a disaster if the geothermal plant was destroyed since it's one of only nine in the entire country.

[New HOT lava]

[Icelands newest lava field]

We finally arrived at the Blue Lagoon! Joyce took us inside and made sure we didn't have any issues checking in. She told us to take our time and she would wait for us in the restaurant.

Josh and I headed into our separate locker rooms, showered, changed into our swim suites, and then headed out into the lagoon. The water has a high level of silica in it which makes it feel like you are swimming in milk. 

We swam over to the bar and got a blue slushy drink.

[It was delicious!]

We then went over to an area where they will give you a mask. I didn't want to put anything on my face because it was too cold and I didn't want my head to get wet. I know, party pooper. We swam around for a bit, but it started to get really windy. We found refuge in a small cave with a few other people which was nice and relaxing.

Once we were done we headed back to the locker rooms, showered, and got ready for our flight back to Chicago. The Blue Lagoon is very modern and is similar to the Sky Lagoon. It has fancy locker rooms, individual showers (with shampoo), towels, hair dryers, etc. After you get showed they provide lotion that you put all over your body. It is supposed to help your body absorb all the good minerals from the lagoon without drying out. Overall it was a very fun experience, but if I had to choose I would say that Sky Lagoon is better (and cheaper too).

[Svartsengi Geothermal Power Plant]

We met up with Joyce and she drove us to the airport. She made sure we got checked in and then we got hot dogs. Let me tell you, Icelandic hot dogs are a big deal. The locals apparently love them! They are made from local, organic lamb, pork, and beef. You gotta get the hot dog with all the fixin's: raw white onions, crispy fried onions, ketchup, pylsusinnep (sweet brown mustard), and remoulade (a sauce made with mayo, capers, mustard, and herbs).

After eating our hot dogs we said goodbye to Joyce and went through security. We made it through security quickly and found our gate. The boarding process was chaotic since Iceland Air lets everyone board at the same time. But we found our seats and settled in for our 6 hour flight. We left Iceland at 4:30 PM and arrived in Chicago at 6:35 PM. I read a book the whole time and I only nodded off a bit during the last hour. We landed and got through Customs and Immigration in seconds because of our Global Entry passes (totally worth it!). My dad picked us up and gave us some snacks! Such service!

By the time we made it home Theo was already in bed. We unpacked, started laundry, gave my parents their gifts (shirt and Icelandic chocolate and salt), and headed to bed.

[Puffin beanie for Theo]

[Souvineers for us: sheep made of local wool, lava rocks, and aluminum Aegishjalmur stave]

I always try to find locally made jewelry when I travel. I just had to get these beautiful lava earrings:

[Iceland pin]

And that's a wrap! What an amazing trip! Thank you to Josh for taking charge and planning the trip. Thank you to my parents for watching Theo by themselves for 10 days! I know he has a busy schedule and can be a handful. AND thank you to Joyce for being an amazing tour guide, travel agent, and chef! I can't say enough great things about her and her ability to plan the perfect vacation!

Overall I LOVED this trip! Iceland is such an amazing country and the people are so kind. If you like geology, history, food, beautiful scenery, AND you don't mind the cold, GO TO ICELAND! Joyce kept asking me if I've ever seen anything like this before. And I kept saying "Yes, but not in one location." It's like taking the fjords and black sand beaches of New Zealand, the ice sheets of Antarctica, the earthquakes and plate tectonics of California, the glaciers and tundra of Alaska, the volcanos and waterfalls of Hawaii, and Craters of the Moon in Idaho, and putting them all on one small island. 

We chose to go in the spring because it gave us a higher chance of seeing the Northern Lights without dealing with the cold polar nights. And we wanted to avoid the crowds that come with high summer. Yes, it was cold, but we literally got to see the seasons changing before our eyes. Over the 10 days we were there it was dramatic to see the change in the landscape. The hills and grasses were starting to turn green and soon the lupins will start to bloom.

Josh and I have already decided that we are going to go back and do the northern route in the summer. We don't know when, but we will someday 🙂