Birthday's and Doctor Appointment's

Happy 5th birthday, Theo! I love this super strong, super silly, and super sweet boy!

Ms Jess (Theo's CNA) stopped by to bring Theo a few presents and say hi! While she was here we showed her how to feed Theo and answered any other questions that she had. Even though she was with Theo at preschool last year, she never was able to feed him or give him water. But at kindergarten she will be able to.

Ms. Becca also came by that afternoon for PT and to bring another gift.

Theo also got a couple of Star Wars books from my parents and a card from cousins Porter and Kenna! Thanks everyone for thinking of Theo on his special day.

And Josh and I got him some new Tonies! He just LOVES music!

Ms Becca always makes Theo laugh with his pompom and the teeth brushing song!

Theo had two seizures today.

Tuesday, August 9th, was my birthday! Josh bought me an awesome massager and I bought myself a Shakti mat. 

I won't show you my whole back, but the Shakti mat is covered with thousands of small spikes and it leaves you very red after you use it. The first few minutes REALLY hurt, but if you can breathe through it then the next 15 minutes are pretty great and can be quite calming!

Thanks Josh and Theo for spoiling me!

Theo had two seizures today.

The next day (August 10th), Josh, Theo, and I headed down to Peoria. First we went and saw the Developmental Specialist at Easter Seals. 

We haven't seen her since right before Theo's EEG and hospitalization for seizures, so we had a lot to catch up on. She sent in new orders for AFOs and SMOs, gave us information about waivers and the PUNS list, sent a referral to Nu Motion for a in-home seating system (our current one is 12 years old), and sent a referral to Actistyle for diapers (we keep trying to get waivers so we can qualify to get diapers, but we keep getting denied, hopefully this works). She also examined Theo and was happy to see how well his hips were doing and she commented on how much more flexible he is.

Next, we went and saw Dr. Sinha with Neurology. Theo slept in his wheelchair during the appointment, which was great because it gave us a chance to talk to the doctor AND we could show Dr Sinha how Theo is reacting to his medications. Theo's seizures have gone down significantly (25 a day to 1-3 a day) since he started on medication, but the meds just make him so tired. It's hard for him to function and all he wants to do is lay on the floor or sleep. Dr. Sinha told us that Theo is almost maxed out on all of his seizure meds (based on weight), except for one. He wants us to increase the dose of the Clobazam twice over the next week. If Theo continues to be sleepy then we can send Dr Sinha a message and we can start looking into other options. It's great that Theo's seizures have decreased so much, but he can function and have a good quality of life if all he is able to do is sleep.

We also talked about Vagus Nerve Stimulation (VNS) surgery. I've seen a lot of kids on my Epilepsy FB support group that have has this procedure done and it had been great for them. Dr. Sinha said that if the medications aren't able to stop Theo's seizures then he would be a candidate for VNS. We will have to see an Epilepsy Specialist at another hospital for a second opinion, but if they approve him then the surgery can be done at our hospital by Theo's Neurosurgeon. It sounds like a great option and I am excited to learn more about it. These medications are just so hard on his little body. It would be nice if we were able to control the seizures with the VNS and we could wean him off of his four seizure meds.

After seeing the Neurologist we headed back home. Theo did really well in the car today because he slept most of the time!

Theo had one seizure today.

The next day (Thursday, August 11th) Theo and I headed back down to Peoria so we could see Dr. Steve the Ophthalmologist. I downloaded a couple movies for Theo to watch during the drive and he did great (again, he slept more of the time).  

Theo had to get his eyes dilated, so I knew it would be a longer appointment.

After the initial examination Theo was given eye drops and then we were sent into a darker room to wait for his eyes to dilate. I fed Theo and he caught a little cat nap before we were called back to see the doctor.

We've been seeing Dr. Steve since Theo was a baby and he is truly one of the kindest people I have ever met. After his examination he told me that Theo's eyes look great and he should continue to wear his glasses as much as he can. We'll see him in three months for a non-dilate check up.

Theo had one seizure today.

On Friday, August 12th, Theo had PT and then we Zoomed with his feeding therapist. He kept falling asleep during his feeding therapy so we had to cut it short. I'm glad that his therapist are so understanding.

Andie sent me this cute video of Porter watching the Figment ride while playing with Figment! 

Theo had three seizures today.

Over the weekend we mostly stayed at home and did a few things around the house. Josh put up these awesome lights for me, so now we can really see the Harry Potter wands!

Now I just need more wands 🙂

[Super strong!]

I've been riding my hybrid bike as much as I can, but I'm getting frustrated with my speed (or lack thereof). Every time someone on the road passes me they are riding a road/speed bike. I started looking into these bikes, but they are VERY expensive. I decided that I needed to rent a bike for a few days and make sure it was a good fit before I consider buying another bike. I found a place in Chicago that rents out road bikes (most places around here only rent out electric bikes or cruisers), checked the weather for next weekend, and then booked my rental.

Literally the next day the weather prediction changed and it looks like Saturday and Sunday we are going to get rain! UGH! Hopefully it will be scattered storms so I can get in a few hours of riding. Last thing I need is to ride on a rented bike in the rain on a skinny tire. 

[Trying to decide how to pack Theo's food and diapers]

Did you know those peppers in our back yard are ghost peppers? I watered them every day, but I didn't know what they were. I told Josh he couldn't cook them in the house (he did that once in North Dakota and I almost died), so he gave a few of them to his friend, Lucas. Have you ever been hit with pepper spray? That's what it feels like when someone cooks with ghost peppers! I guess we'll have to wait and see what Lucas cooks up!

Theo only had one seizure on Saturday and one on Sunday.

Quick Trip To Orlando - Part III: Heading Home

The next day (August 1st) I left the condo, headed to the airport, dropped off my rental car, started down the escalator towards the terminals, realized I forgot my luggage in the car, ran UP the escalator, got back to the car, found my luggage (PHEW!), and then headed back to the terminal to check in for my flight. I got to my gate three hours before my flight (go figure), so I walked around the airport, and read my book. My flight was again very easy (I even got an aisle seat in the Emergency Exit row). Josh and Theo picked me up from the airport and we went straight home so I could take a COVID test. I woke up on Monday with a dry throat. I figured it was just allergies since I forgot my allergy meds at home, but I wanted to be extra sure that it wasn't COVID before I took off my mask and interacted with Josh and Theo.

[Negative!]

I also took another test on Tuesday (August 2nd), just to be sure. And again, it was negative.

Josh and Theo had a great time while I was gone. His Neurologist increased his meds again, so Theo has been tired, but he still worked and played hard. Josh said he only had one seizure a day while I was gone. Hopefully we will get them fully under control soon!

[Super strong!]

[Good thing my bag was small or else I would have bought more!]

These will make a fine addition to my, *cough* I mean, Theo's collection! And there is still plenty of room for more hilts.

Over the next few days we got back to our regular schedule. Theo had therapy most days, Josh went back to work, and I started packing for our trip to Europe 😬 Yes, I know we don't leave until September 25th, but there's a lot to do!

[So tired in the stander]

Since we will be in Europe for a week before we get on the ship, I thought it was a good idea to look into shipping some of Theo's medical supplies (food, syringes, diapers, etc) directly to the ship. That way we could have a resupply and we wouldn't have to take three weeks worth of food and diapers (things we can't easily buy) with us. I found a great company that partners with Holland America (HAL) and I gave them a call. I talked to a nice lady who assured me that our resupply would be delivered to the ship and would be waiting in our room when we arrived. BUT we can't ship anything that can be "consumed within the body," so food is out of the question. She said that customs will send it all back and we won't get our shipment. UGH!

I did the math and figured out that we will need to bring 40 lbs of Theo's food with us to Europe. That's 40 lbs of JUST HIS FOOD! Luckily, we can ship his diapers, syringes, and other things, but since we can't ship the food we will have to pack it in our bags when we fly over.

I started to get worried about bringing that much liquid food into another country so I looked up the rules for the EU. Apparently you can't bring in any meat, milk, or their products into the country due to an outbreak of Foot and Mouth Disease. Luckily, Theo's food does not contain any meat or milk. I reached out to the EU travel commission to double check the rules. I also sent an email to Kate Farms asking them to send me a letter stating that the food does not contain any meat or dairy. I am also going to get a letter from Theo's GI specialist stating that this food is given to him for medical reasons and he has to have it. We probably don't need all that, BUT it's better to be safe then sorry!

[This makes my heart so happy! I hope it happens!]

[Theo wasn't interested in his food. I showed him that mommy likes her food and he should too, but he didn't care]

I've gotten a lot of positive feedback about our flowers, so I went back through my photos to see how far they've come since May.

[Three planters: How it started vs How it's going]

[Tree and flower: How it started vs How it's going]

[Yellow daisy pot: How it started vs How it's going]

[Middle planter: How it started vs How it's going]

[Red daisy pot: How it started vs How it's going]

Thanks dad and Josh for planting all these flowers! I think next year we will use less ferns, but the rest of the flowers look great!

Again, I want to thank Josh for hanging out with Theo so I could go to Orlando! I know Josh and Theo love their "guy time," but it can still be hard to take care of Theo by yourself. I'm glad I was able to stay at the condo, so I could check on a few things. Our cleaning ladies are great at keeping us up to date, but it's nice to check in and see it in person.

Thanks again to Luke and Andie for inviting me and to the Smith family for allowing me to join their family vacation. I had a blast! I think I was pretty well behaved, so hopefully they'll let me join them again in the future!

Quick Trip To Orlando - Part II: Resort Day, EPCOT, and Another Resort Day

The next morning, July 29th, I headed over to the Contemporary hotel to meet up with Luke, Andie, Porter, and Kenna. They showed me around the resort pool area and then we went up to the skybridge so they could show me how close they were to Magic Kingdom. We then headed into the hotel where we met up with the rest of the Smith family for brunch at Chef Mickey's!

Brunch consisted of scrambled eggs, beef brisket, sausage links, bacon, Mickey waffles, loaded potato cheese casserole, banana bread French toast, and plenty of delicious food for our gluten-free family members (doughnuts, Mickey waffles, and eggs). Everything was served "family style" so there was plenty to go around 😋

While you are eating each of the "Big Five" (Mickey, Minnie, Donald, Goofy, and Pluto) comes around to visit and take pictures.

[Goofy is too silly!]

[Luke and Rick (Andie's brother)]

Andie, Alysse, and Chasten were VERY excited when Pluto came around because they all use to "hang out" back in the day 😉 

Best of friends!

After breakfast we took the monorail to Disney's Polynesian Village Resort. It's a beautiful hotel with a fun pool (which the kids promptly fell into) and over the water bungalows. 

Alysse, who currently works for Disney as a travel agent (if you need her number let me know!), pulled some strings and got us a tour of one of the bungalows! 

[Laila and Porter on the bungalow balcony]

[Magic Kingdom is just a ferry ride away]

The bungalow is BEAUTIFUL! I hope we can stay there some day!

After getting some delicious DOLE whip, we hopped on the monorail and headed over to Disney's Grand Floridan Resort and Spa. This hotel is modeled off of the Hotel Del Coronado in San Diego. It's magnificent!  

We walked around the grounds and then went out to the pier to take pictures.

[Luke, Porter, Kenna, Andie, Laila, Rick, Joani (Andie's mom), Ty (Andie's dad), Wyatt, Chasten, Alysse, and Annie (Andie's younger sister)]

We THEN took a bus to Disney Springs where we got drinks on the roof of the Coca-Cola Store, shopped at World of Disney, got dinner at Chicken Guy, AND got cookies from Gideon's 😋

I've only been to one (Beach Club) of the Disney World Resort Hotels, so it was nice to be able to visit some more of the upscale deluxe resorts. And I've been craving Gideon's since we were here in December, so I'm glad we were able to get some cookies!

The next day (July 30th) we went to my second favorite Disney World Park: EPCOT!

We got in early with the rest of the hotel guest and headed straight for Soarin' Around the World (another favorite)! Bravo One please! It was a perfect start to the day!

Next we headed over to the new Guardians of the Galaxy ride. It was amazing! I love that these rides just keep getting better and better! It was a rollercoaster, but it was so smooth and so much fun. I was just laughing the entire ride! 

We then went over to Test Track where Kenna and Porter got to build their own cars! 

We did most of the rides in the non-showcase area before heading to "Journey into Imagination with Figment." As we were about the board the ride we noticed that the Cast Members were using towels to wipe down the seats. I thought it was strange, since all the COVID restrictions were lifted, but I brushed it off and followed Luke onto the ride. I sat down on the bench and when I put my hand down on the bench I felt something wet. Ugh. So, that's what they were trying to clean up. I put my hand in someones chunky vomit. Luckily, only a little got on my pants. I stood up and asked for help. The Cast Member said they had some hand sanitizer I could use. I told her I had chunky vomit on my hands and I needed to wash them in a sink. The Cast Members didn't seem to care that I was standing there with SOMEONE ELSES VOMIT on my hand. I asked if I could use a bathroom in the building, but they said I had to leave the building and find a customer bathroom. So, I walked out of the ride and down the street to find a bathroom. As I was walking I glanced down at my hand and immediately started to gag. Luckily, I made it to the bathroom and washed my hands vigorously before I threw up. UGH.

To cheer myself up I went shopping and bought gifts for the kids and then got a tasty beverage.

I then headed to Norway to get a pastry while I waited for the rest of the family to catch up.

I got a sweet pretzel with almonds and relaxed by the Stave church building (fun fact: the church that this building was modeled off of is in Oslo and we are going to see it while we are there in October!)

After regrouping I gave the kids their gifts. I bought Kenna and Laila Princess Minnie Mouse dolls and I bought Porter and Wyatt stuffed Figment's.

[I love being "fun Aunt Courtney"]

[Figment]

We then walked through the rest of the showcase area; saw the France, China, and United States movies; got dinner in England; and dessert in Morocco. 

[Delicious baklava]

We watched the fireworks show when the park closed and then hung out for an hour while everyone else left the Park.

Minus the vomit incident, it was another super fun day!

For my last day in Orlando (July 31st), we had another "Resort Day."

We started at The Contemporary where everyone gathered to go swimming. We then headed over to Port Orleans to get lunch, beignets, and swim at their pool.

[Delicious Mickey-shaped beignets]

[Porter]

[Kenna]

We then took the Skyliner to Disney's Beach Club Resort to get ice cream at Beaches and Cream. But they were completely booked up for the rest of the day! Bummer! 

We walked over to the BoardWalk Resort and swam there for a while. The kids LOVED their giant slide!

[Beautiful sunset on the BoardWalk]

We then got dinner at a French fry shack. I got BBQ pulled pork fries, Luke got carne asada fries, Alysse got Parmesan garlic fries, and Chasten got the chili cheese fries. We all shared and everything was delicious.

We ended the day chatting and eating ice cream on the BoardWalk. I said goodbye to the Smith Family and then we took the bus back to the Contemporary. 

[Saying "goodbye" at the Contemporary - I didn't realize how sun kissed we all were]

I just want to say thanks to the Smith family for letting me tag along on their family vacation! I'm bummed I wasn't able to stay for Magic Kingdom, but I missed my boys and I needed to get home!