Here I am: First Purchase for Japan Trip

Monday, April 29th:

I was a bit worried about Theo went I sent him off to school today. He has to be NPO for 6 hours prior to his abdominal ultrasound. This is usually not an issue because St Judes schedules his ultrasounds in the morning, but they were all booked up and 3:00 PM was when they could get him in. Fortunately, Theo did great at school and didn't seem to get crabby due to hunger. As I was driving to school to pick him up I got this picture from Ms. Jess:

Oh sweet boy! He was just too tired. I got Theo from school and then we made the long drive to Peoria. Josh's current job is about 40 minutes from the hospital, so he met us there. It's much easier to do these long appointments when Josh is with me!

[All ready for his *knock on wood* final abdominal scan for St Judes]

[That face!]

Theo did fine! He kept trying to push the technician away and would grumble at her when she changed locations. The exam was quick and I had Theo's food and meds ready when he was all done.

We then drove home and while Josh and I made dinner Theo worked with his eye gaze.

First Theo said "I hug" so Josh and I gave him a hug!

He then said "let's go school." Apparently when he is at school is asks to go home on the bus and when he is at home he wants to be at school. Oh this kid!

While Josh and I were talking Theo kept saying "I want to show you something, watch me." We kept asking him what he wanted to show us and we would just sit there and smile. I think he just wanted our attention 🙂

That night we watched the final Lakers game of the season. I'm not surprised that we lost to Denver, but it's still a bummer. Now we need too wait and see what happens in the off season. Will they fire Darvin Ham? Will LeBron retire? Will they draft Bronny? We'll see!

Theo had five observable seizures today.

Tuesday, April 30th:

After I got Theo on the bus I headed to my dermatology appointment. I've been on medication for the last year to help with my hair growth. The meds have definitely helped with new hair growth, but my hair is just too fine. It will grow and then break once it gets too long. Kinda frustrating.

After my appointment I ran to the grocery store and found some Blue Milk! It's vanilla flavored and it taste exactly like the pink cookies from Crumbl. It's very good, but very rich!

I've been talking to Make-A-Wish about an "accessibility package" for our house. We are hoping to get a ceiling lift for the family room,

a ceiling lift with a rail for Theo's bedroom,

and a chair stairlift for the basement stairs.

If they are able to make that happen we would be VERY grateful, but I understand that it is a Wish and it depends on funding and availability. We will be grateful for anything that we receive.

After school we went to PT/OT and then to The Legacy Ranch to see Sherman. Theo did great during his lesson and was giggling a lot!

[Can't go to bed without Puppy and Wolf]

Theo had five observable seizures today.

Wednesday, May 1st:

After I got Theo on the bus I got a message from Theo's St Judes doctor, Dr. Kumar. She said that Theo's ultrasound looks good and we will move to an annual followup! No more labs or ultrasounds every three months! YAY!

Theo had a great day at school and since it was nice they were able to play baseball outside!

After school Theo had a Zoom with Ms. Jeannine and Ms. Jen.

Theo had four observable seizures today.

Thursday, May 2nd:

It was another beautiful day, so Theo wore shorts to school! Spring is here!

While Theo was at school I went and got my allergy shots and then to get my hair cut.

Theo had a great day at school. He went in the stander for an hour and tried a peach smoothie!

After school I took him to OT with Ms. Laura.

[Theo likes to get between his mat and the toy bins... I don't get it]

That night tickets for Star Wars Celebration went on sale. Josh and I got on our computers and cell phones and right at 6:00 PM we refreshed our pages and got in the queue.

Even though I was watching the atomic clock and we have fast internet connection, it still took us 55 minutes to get into the site.

By the time I got in the VIP Jedi Master tickets were gone - apparently they sold out in under 5 minutes. But I was able to get three 3-day passes! YAY! And minutes after I got those passes they sold out too! So it's official! My brothers and I are going to Japan next year!

Theo had four observable seizures today.

Friday, May 3rd:

Theo went to school, Josh went to work, and I went to the post office to get my picture taken for my passport renewal.

After school I took Theo to PT. Theo has been struggling at PT and OT because he is obsessed with the swing. He swings at the beginning and end of each session, but he can't seem to focus on anything else. It's a little frustrating, but we are working on patience.

Theo had four observable seizures today.

Weekend:

HAPPY STAR WARS DAY!

MAY THE FOURTH BE WITH YOU!

[Blue Milk in my Baby Yoda mug]

Josh had a long week at work. The project is moving very quickly and the contractor wants mainline done in just a few weeks. He's been leaving the house before Theo wakes up and getting home around 6:00 PM. After Theo goes to bed at 7:00 PM, Josh jumps on the computer and works for hours before he goes to bed. We are so grateful for him and his willingness to work so hard for our family!