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.