Here I am: St Judes, ENT, Audiology, Swimming, REI, Dentist, and GI

The next two weeks are going to be a little crazy since we are trying to get a lot done before we leave for Europe.

Monday, September 12th, was an insanely long day in Peoria. Luckily, Josh was able to come with us, which made things so much easier!

The three of us left the house at 6:30 AM and arrived at the hospital around 8:35 AM. We headed straight to the Ultrasound department to check in for Theo's 9:00 AM Ultrasound. The person at the counter printed off our itinerary and asked us if we had gotten his bloodwork done. I told them it was a mistake and we didn't need any bloodwork for St Judes and we did bloodwork last weekend for Neurology. They insisted that I go talk to the lab about the schedule. I told them I would go talk to them and I would leave Josh and Theo there so they could get his ultrasound while I figured out what was going on with the bloodwork. I headed back to the front of the hospital to talk to the lab. They told me Theo had bloodwork to do. I told them it was a mistake and I would call Neurology and walk down to St Judes to double check. The front desk lady at St Judes said that there was an oder in for bloodwork. I told her it was a mistake, but she just told me what she could see in the computer and she didn't know anything else about it. I asked her if they could just do it at St Judes (I know they can since they've done it before), but she said that it had to be done at the lab. Ugh.

I walked back to the lab and told them we would do his bloodwork after the ultrasound. I then walked back to ultrasound where Josh and Theo were still waiting. 30 minutes later we were still waiting (which was strange), so I went up to the front counter to see how many people were in front of us. The gentleman at the desk seemed confused and asked if we had done the bloodwork yet. I told them we would do it after the ultrasound. He seemed confused and it turns out they didn't fully check Theo in because they thought we were getting bloodwork first. Oh goodness 🤦‍♀️ A few minutes later we were called back for the ultrasound. Luckily, the technician was fast because it was almost 10:00 AM and our appointment with St Judes was supposed to start then. After the ultrasound we headed to St Judes. I apologized to the the receptionist and told her that we were behind on the schedule. She said it was okay and that once we get the bloodwork done the doctor will see us.

We then headed back out to the lab where I went and talked to the same lady I had spoken to earlier. I said we were there to check in for Theo's lab work. She said we were checked in and to "go sit in Area A" and they will call us back soon. After 30 minutes I left Josh and Theo and went back to St Judes to let them know we were still waiting for bloodwork. She said it was fine.

After pacing around with Theo for an hour I decided I should go and check with the front desk lady and see if Theo was close to being called back for lab work. She took my itinerary, looked at the computer, clicked some keys, and said "Okay, you are all checked in for labs."

My heart fell into my stomach and I started to cry. I told her that she personally checked us in 1.5 hours ago. She just looked at me and said, "Well, you are checked in now." No apology, nothing. I walked over to Josh and Theo and told them what had happened. I then walked back to St Judes and told them what was going on. The front desk lady made a phone call and said the nurse there would just take his blood.

They sent us to a waiting room where the nurse came in, did Theo's vitals, and then did the blood draw. When the doctor came in she asked me what had happened. I told her everything and she said Theo did NOT need bloodwork and she didn't know who put those orders in. Josh and I both knew it was a mistake, but no one believed us. We were almost 2 hours behind schedule because they wouldn't listen. I HATE being late and I am super organized, so being caught off guard with an additional appointment (for something we didn't need) was really stressing me out. The lunch cart guy came to see us and gave us hotdogs, cookies, and veggies. I felt much better after I ate 😋

Luckily, the St Judes doctor was very kind, accommodating, and understanding. She said that Theo's ultrasound looks good and she was sure his bloodwork would be fine too. We'll see them again in three months.

We then left the hospital and headed across town to see the ENT and Audiology. The ENT checked Theo's ears and throat and said everything looks great. Josh then took Theo to get a quick hearing test. The doctor reviewed the test results and said his right ear looked great and his left ear is at the "lower range of normal." That is consistent with his ABR results too. Theo doesn't have any hearing loss or issues and the tubes are still working, so that was great news.

We made it back home just in time for dinner and called it an early night. The stress of the day and the long drive makes me so tired!

Theo didn't have any seizures today.

The next morning (September 13th) I put Theo on the bus and then headed to the local Athletic Club to swim. I was planning on getting a membership, but I didn't want to buy one right before we left on a three week vacation. I figured I would just pay the daily fee ($8), try out the pool a few times, and then buy the membership in October. When I arrived I asked to purchase a daily pass, but they just let me go in for free since it was my first time. Sweet! I headed to the pool, put my googles on, picked a lane, and hopped in the pool.

I swam laps for 30 minutes and then took a break and floated for a bit. I'm definitely a little rusty and not as confident in the pool as I use to be. But it's fine, I'll keep working on it and it'll get easier! After I got home I realized that all three of my toe rings came off in the water. UGH! I bought those the week Josh and I got married and I haven't taken them off since. And I bought them from the best toe ring shop: T's Toe Rings & Gifts. Hopefully they'll get sucked up into cleaning system and they'll turn up at lost and found. If not, I'll just have to get more when we are in CA next June.

Theo had a great day at school and his teacher sent me a video of him laughing at the electric scissors.

[Busy day!]

After school I took Theo to OT and the cleaning ladies came! I love coming home to a clean house!

Theo didn't have any seizures today. That's three days in a row!

Wednesday morning I got Theo ready for school and rolled him outside. While we waited for the bus I asked him if I could put "cool guy glasses" on him. He put his head down (like he does when I put his regular glasses on) and he smiled when I told him he looked super cool!

While I was getting Theo on the bus a garbage truck AND a car ran through the school bus stop sign! Cars do it at least once a week, but I was very surprised by the garbage truck. The stop sign was definitely out and they should have stopped. Theo's bus driver was livid and she wrote down the truck number. I don't get why people can't stop. It's the law and it keeps the kids safe. Kids die every year when people run through the stop signs. I get that it can be a pain to get stuck behind a school bus, but safety of the children is more important than you being 3 minutes delayed.

After Theo was safely on the bus, I went and got my eyebrows waxed and then met Josh at REI (my favorite store).

On Wednesdays, Theo comes home on the bus. I sent his ladybug neck pillow with him today, so he could get a nice nap on the way home. His bus aid was cracking up as she rolled him onto the lift and I just had to get a picture of him! Poor kid was so tired even though he had a 2.5 hour long nap at school!

I put him down for an hour long nap and then Jen came over for feeding therapy and Jeannine (dietitian) Zoomed in. Theo was VERY shaky and tired, but he was trying.

Theo had one seizure today.

On Thursday, September 15th, I got Theo ready for school and the wheeled him out to the bus. While we were loading Theo a car drove through the stop sign. I saw the car pull out of their driveway and drive right past the bus. It's just so disrespectful.

Everyone at school is getting a kick out of Theo's sunglasses. His aid sent me this picture she took right when he got off the bus.

[Sleeping with his "cool guy" sunglasses]

While Theo was at school I went and got my haircut and then I met Josh at the Jewelry store. They had a few sample ring designs for us to look at. We picked out two that we really liked and they said they could order them to the store so I could try them on. Yay! I'm so excited!

We then headed to the school to pick up Theo so we could all go to the dentist together. Isn't that adorable?!

Theo's aid said he kept asking for "more, more, more" yogurt and he had a lot of "good taste!"

[Another nap on the way to the dentist]

I went first and my cleaning was pretty easy. The dentist checked me out and said everything looks great. Yay!

Josh went next and I took Theo for a walk. He was still so tired so he fell asleep again.

I brought Theo in right when the dentist was checking Josh. Josh has one little problem that needs to be fixed. The dentist then checked Theo and said he looks good. Keep brushing those teeth!

Theo slept on the way home and went to bed super early. He was just extremely tired today. He didn't have any seizures today which isn't surprising since he wasn't awake very much (he only has them when he's awake).

TGIF! We made it! That was a LONG week!

After I put Theo on the bus I headed back to the Athletic Club to swim. I purchased new goggles since my old ones were fogging up a lot and they worked a lot better! I watched a few YouTube videos about breathing during freestyle and some exercises I can do to improve my form. I swam 1150 yards in 30 minutes and felt pretty good about my breathing and my form. I think I need to invest in a cap though. My hair kept getting in my face and it was driving me crazy.

After swimming I went home, got ready, and then Josh and I headed to Theo's school to pick him up.

[Another great and busy day at school]

The three of us headed back to Peoria to meet with Theo's GI Specialist. We haven't see her since January so we had a lot to talk about! I told her I was concerned about his weight (currently 53.8 lbs) and she suggested that we reduce his calories by 5%. It's so hard to judge how much to give Theo because he is not burning a lot of calories during the day because he is not as active as he use to be. She then asked us if we needed anything else and I brought up our trip to Europe. I asked her if she could write a letter stating that Theo's food is medically necessary, it's the only food he can consume, and it doesn't have any meat or dairy. She was very happy to do that and said she will send it to us next week before we leave.

[Theo slept through a lot of the appointment]

Theo had one seizure today.

The next morning (Saturday) I went for a nice bike ride and then headed to Walgreens to get Theo's meds. We had to get an insurance override to get extra doses so we don't run out on our trip. It's a huge undertaking which requires doctors, the pharmacist, and the insurance company to all be on the same team. I knew this process would take a while which is why I started two weeks before we leave on our trip. I had to go back to Walgreens multiple times, but we finally got the dose right.

[Theo being super strong]

I also spent the vast majority of the day making updated videos of the house (does anyone else do this?) and packing for our trip.

Since the house was clean and organized, I decided to take a few fun videos of Theo's Star Wars room and the Harry Potter guest room.

Blogger doesn't like my videos so here's some updated pictures of Theo's Room:

I moved everything that needs to go on the trip to the dining room table. We've never eaten at this table, but it's perfect for organizing!

I bought Theo this waterproof, fleece-lined wheelchair poncho and I think it will work perfectly in chilly Europe. And it's super cute!

Theo had two seizures today.

On Sunday, September 18th, I went back to Walgreens to get another one of Theo's meds. The nice pharmacy tech triple checked the medication quantity before she would let me leave with it. She felt bad that I had to keep coming back yesterday.

I then went shopping at my favorite store, REI, and bought Theo some fancy clothes!

[Gloves, water resistant pants (that fit over his AFOs), and a warm shirt]