Josh is Home!

Josh worked a full 12 hour overnight shift (Sunday into Monday), went back to his room, packed, and then took a four hour bus ride from camp to Deadhorse. 

He then caught a late flight from Deadhorse to Anchorage. Just after midnight on Tuesday morning he caught a flight to Seattle. After a three hour layover in Seattle he flew to Chicago!

Poor guy had been traveling for over 26 hours on very little sleep by the time he got home! But we are so happy he is here!

[Gotta get a pin for our map]

[Reindeer!]

[Passing the time at the airport]

[Keeping track of Josh as he flies to Anchorage]

[Seattle to Chicago]

Theo is still sick, so he didn't go to school or have therapy this week. 

[At least he's happy!]

It looks like Josh brought Alaska home with him!

[Putting Josh to work!]

During the week I attended a Zoom presentation on Section 504. Go here to learn more about the lawsuit and see what you can do to protect our disabled community. 

On Thursday, I went and saw the new Captain America movie. It was great and it was nice to get out of the house for a few hours!

[Gotta get some popcorn!]

It's going to be VERY cold again this week. That's February for you, I guess!

If you have a moment I'd really appreciate you sending a message to your Congress People about this:

CALL TO ACTION FOR EPILEPSY

This week the National Plan for Epilepsy Act was reintroduced to Congress. This bipartisan bill, which is modeled on national plans for Alzheimer’s and Parkinson’s Disease, would direct the Secretary of Health and Human Services (HHS) to create and maintain a National Plan for Epilepsy. The plan would enable federal coordination to facilitate better outcomes for people with epilepsy and prioritize development of more effective treatments.

My sweet son, Theo, was diagnosed with drug resistant Epilepsy and Lennox-Gastaut Syndrome (LGS) in 2022. We have struggled through countless medications and therapies to get his seizures under control. As of today, his seizures are still not controlled and he has 10-20 seizures a day. Children with Epilepsy and Lennox-Gastaut Syndrome (LGS) have a higher risk of Sudden Unexpected Death in Epilepsy (SUDEP). Every night when we put Theo to bed there is a chance that he could have a large seizure in the night that could kill him. We fight for Theo every day and he has a great team of doctors behind him, but more can be done. Please support this bill and show people with Epilepsy that they matter.

Go here to read more about this bill.

Scroll to the bottom and click "Ask Your Official" to send a message to your Representative and Senators.

Sickness Finally Caught Us

Monday, February 3rd:

Theo went to school and had a great day! After school we went to OT with Ms. Laura.

This is how Theo cuddles with me. He likes to know I'm there, but not too close!

Tuesday, February 4th:

After Theo went off to school on the bus, the contractor came over and installed a transfer plate in our doorway for Theo's wheelchair. He's going to come back with the Inspector on Thursday to finalize everything!

While Theo was at school I attended a Zoom meeting with fellow Changing Spaces chapter leads. We had a great meeting!

After school we went to PT and then to see Sherman!

They played Disney music over the loud speakers and Theo did really well!

Wednesday, February 5th:

Theo went to school and then he had therapy with Ms. Jen and Ms. Jeannine.

After Theo went to bed I went to lay down salt on the driveway since we were going to get freezing rain.

Thursday, February 6th:

The salt helped a little bit, but it was still really slick as I took Theo out to the bus. 

The bus driver said the main roads were not bad because they were salted with the high grade stuff over night.

I waited a few hours for the sun to come out before I went to run some errands. The city inspector and the contractor came over and approved our garage lift! YAY!

Theo started coughing after he got home from school. I decided to let the school know I was going to keep him home tomorrow, so we could get ahead of the virus.

Friday, February 7th:

Unfortunately Theo is sick so we stayed home and did respiratory therapy.

Theo is so silly! He figured out how to pull the tubes out of his vest!

Weekend:

We stay home for the rest of the weekend. Theo had a minor cough and a stuffy nose, but he was in a good mood and just wanted to play with his toys.

[Trying to turn off the Vest]

Theo was REALLY gassy and it caused him to throw up a bit. This happens every time he gets a runny nose. It's hard when he doesn't know how to blow his nose and all the mucous just ends up in his stomach.

[So happy with Rollin Rovie]

Josh had his final week in Alaska:

 

He will be working the night shift Sunday night and then taking the noon bus to Deadhorse to catch a flight to Anchorage.

[Josh takes pictures of us while we are FaceTiming with him]

[Crustables]

Josh decided to drive up to the Oliktok Point on the ocean.

There is a HUGE plant up there and a lot of sea ice.

He didn't see much at night, so he went back during the day. This is the first time he's seen the sun in 6 weeks!

I told him to take a few pictures of him pointing at something and we could photo shop in a polar bear!

This is what I came up with! Cute huh?!

And look! The polar bear brought a friend!

Josh's attempts at photo shop were better than mine! 

[Man camp during the day]

[Always plenty of food on the North Slope!]

We are so excited to see Josh on Tuesday! It sucks that he is coming home to a sick kid, but I'm sure Theo will be happy to see him!