Rare Disease Day 2025

Monday, February 24th:

Theo headed off to school and I did a bunch of work at home.

Josh landed in Anchorage very early this morning and stayed the night at the airport hotel. That afternoon he flew from Anchorage to the North Slope. He sent me these pictures from his flight! We are pretty sure that is Mt. Foraker and Mt Denali! How insane! I've been to Alaska before, but we didn't go to Denali National Park. I'd love to see those mountains one day!

That night he was welcomed back to Alaska by the northern lights!

Tuesday, February 25th:

Theo headed off to school and I was able to run some errands.

Theo gets really excited when the bus comes! He loves to see Ms. Gina and Ms. Karen! It makes me so happy that he love to go to school!

["Theo! The bus is almost here!"]

After school we went to PT and The Legacy Ranch. Theo is doing really well with his horse back riding lessons 🙂

Wednesday, February 26th:

Theo had an early out today, which worked out great because he had a doctors appointment in Ottawa that afternoon. We drove to Ottawa to see Nurse Jenna and Dr. Lin with Neurosurgery. We chatted with Nurse Jenna and filled her in on our last year. We saw Dr. Lin briefly and since all is good with Theo's shunt, we will see them again in a year.

My new phone came! I waited until Theo was in bed so I could focus on getting it set up. It took HOURS since the phone kept stalling on a download. I was SOOO mad! After going through multiple YouTube videos and forums, I finally figured it out! UGH!

[I need this so badly! 🤣]

Thursday, February 27th:

Josh's job has been pretty crazy since he got back to Alaska. They promoted him to be the night Lead and then they decided that he would be a better day Lead (there is a lot more action during the day). BUT there isn't a night Lead to take over that spot. So, until they can find one Josh will be working 19 hour days to cover both shifts 🤦‍♀️ Luckily, someone should be coming to help him soon!

[North Slope sunrise]

I went to Theo's school today to talk to his teacher about Theo's care. We had a great chat and we are on the same page. Hopefully we will learn soon if Theo can get Medicaid and nursing services 🤞🏻🤞🏻

Friday, February 28th:

Theo and I went to Peoria to see his Developmental Specialist, Dr. Wendy Burdo-Hartman. We discussed Theo’s progress and she was happy to see that Theo is overall happier. I brought Rollin Rovee to the appointment and Theo was laughing and interacting with his toy. She encouraged us to get Theo in his stander 30-60 minutes a day and she would like some bloodwork done. Theo has been on and off his iron supplement because it makes him constipated, which then makes him gassy. We went down to 1/2 a pill a day, so hopefully that is enough.

[Theo likes to take off his shoes and socks. Stinker!]

[Theo and his BFF, Rollin Rovee]

Weekend:

Theo stood in his stander for 30 minutes! And he was happy the entire time!

[Resting his head on his arm when he was getting tired]

[Theo started army crawling again! Rollin Rovee is a great motivator!]

February is Rare Disease Month and the last day of the month (usually February 28th) is Rare Disease Day.

Theo has almost 30 official diagnoses, he's gone through multiple rounds of genetic testing, he's seen 20 specialists, and we still can't explain what's going on with our medical Zebra.

He's really one of a kind and we love him so much