Monday, January 26th:
We had a very busy day! Theo and Nurse Stephanie had a great day at school. They learned about the Winter Olympics (Theo asked where and when they would be), he threw a ball back and forth with a friend, chose music, and played on his iPad.
After they got home Theo had PT and OT with Ms. Becca and Ms. Laura. We then had a meeting with Theo's Epilepsy Specialist, Dr. Garcia Pierce. We went through Theo's overnight EEG and the results. She showed us videos of his seizures and what they look like on the EEG chart. I thought the new seizures that Theo was having were myoclonic seizure, but they are still tonic seizures. BUT he is having myoclonic seizures too. Dr. Garcia Pierce pulled up a video of the myoclonic seizure so we could see what it looks like. Myoclonic seizures are quick muscle jerks and tonic seizures cause the muscles to stiffen. It's hard to tell them apart sometimes. AND Theo is having seizures that start as myoclonic and then becomes a tonic seizure.
[Seizure that starts as a myoclonic jerk then changes into a tonic seizure]
Theo is having a few different types of seizures:
Tonic
Myoclonic
Dialeptic
Myoclonic into Tonic
During the 24 hour EEG Theo had 26 seizures. Three years ago when Theo had an overnight EEG he had 50 seizures and they were all tonic. Since then he has gone through a few medication changes and he now has a VNS. It's hard to figure out a good plan of action when Theo's seizures can change. Unfortunately, that is the nature of Lennox Gastaut. And it really sucks.
Dr. Garcia Pierce told us about another medication that she thinks will help Theo. She said it can affect his heart though, so we need to get an EKG to make sure Theo doesn't have any issues with his heart. Luckily, Theo has never had heart issues which is extremely rare for a kiddo with VOGM. Heart failure is actually what kills most kids with VOGM. She is sending us to get an EKG and if it all looks good Theo will start on his new medication. If he handles the new medication well then we will start weaning him off of the Zonisade.
Josh and I were supposed to go to the Lakers vs. Bulls game in Chicago that night, but tickets were just too expensive. So, we went to dinner at Indienne.
[I love the city at night]
We had the preset non vegetarian dinner and it was fantastic!
[Pani Puri and Mushroom Galouti]
[Scallop Cafreal with Golden Kaluga Caviar]
[Lamb Kebab with Chili Cheese Kulcha]
The final dinner dish was Chicken Makhni, which was amazing! That was definitely the best butter chicken I have ever had! In the end we spent a little more than I would have liked, BUT it was all delicious and way better than any food we would have eaten at the United Center!
Tuesday, January 27th:
Nurse Stephanie came over and then we all went on a road trip to Ottawa where we saw Dr. Robertson with Peds General Surgery. He checked Theo’s g-tube site and was happy with how it looked and the size of the g-tube. He agrees that it’s likely Theo’s new formula that is helping with his acid reflux and that is helping to keep the granulated tissue down. Dr. Robertson told us that he was heading to Africa soon to work on the Mercy ship. How exciting! I can't wait to hear all about it when we see him next year.
That afternoon we took Theo to see Sherman at The Legacy Ranch. Theo did great and we talked about Theo riding without his Hensinger next time, so he can work on holding up his head on his own.
Wednesday, January 28th:
Theo went to school with Ms. Jess and they had a nice, short day. At school they made hot cocoa dip and Theo played with his coconut cool whip.
After school we took Theo to the clinic to get his EKG. Hopefully it all looks good and he can start his new medication soon.
Thursday, January 29th:
Theo and Nurse Stephanie had another great day at school. Theo had a long PT session with Ms. Vicki where they worked on sitting up, rolling, tummy time, and rolling the ball. He also got time to play with his pom pom and on the iPad.
Josh is currently unemployed, but he is still working on some paperwork for various projects from last year. The Rubicon is leaking again, so he has plenty of time to investigate and figure out what's going on.
Friday, January 30th:
Theo went to school with nurse Stephanie and they had another great day! When Theo's teacher asked him what to wear in the winter he said "coat" with his eye gaze. They also read "Going to Town, My First Little House" and when they asked Theo what he thought he said it was "boring." Oh, this kid! He is too honest... like his mom 🤦♀️
Other:
Our friends in Virginia need our help!
Here is a message from them. I promise it will take 5 minutes to send an email and it will help so much!
We need your support and we need it now!
We are working to make adult-size (universal) changing tables to be a requirement in new buildings across the state of Virginia. This new building code that will be required in large buildings of certain building categories is going to improve many lives dramatically. We need your voices in support of this!
Please email your words in support to: codedevelopment@dhcd.virginia.gov
Subject line: PUBLIC COMMENT for B11.10.4 (also include this in the body of the email or in the attached letter)
See sample email letter bellow.
If you would like to read our proposal to improve the Virginia State building code, you can view it on our website:
To the Virginia Board of housing and community development:
I am writing in support of proposal B11.10.4. which will make Adult Changing Stations a requirement in new buildings of certain types in Virginia. By approving this proposal, you will dramatically improve the quality of life for many people with disabilities, by giving them access to a safe, private, and dignified place to address their restroom needs while away from home. Currently, countless children and adults that have a disability or medical condition have nowhere to change undergarments or clothing, while away from home, because they have outgrown baby changing tables. This leads to many of these individuals becoming isolated at home, or being changed in unsanitary, unsafe, and undignified places, like the floor of a public bathroom, or on a picnic blanket on the grass, or in their vehicle. Adult Changing stations within family restrooms are essential for us to include all people in community life, regardless of medical condition or disability.
This is important to me personally because… (Add your why’s)
Thank you everyone for your support!
Speaking of powered, height adjustable, adult changing tables, our bill has officially been submitted!
Click here to see the progress of HB4379. This bill will update Sami's Law, which we fought to pass in 2024. We are still waiting for the Rules Committee to assign the bills to a committee. The earliest that it could be assigned would be the week of February 17th, but we don't have any guarantee of when it will be assigned. Once it is, we will need to get as many witness slips as we can! When the time comes for witness slips I am going to make a post that people can share on Facebook, via text, and via email. I will need everyone to send in a witness slip AND spread the word! Don't worry, sending in a witness slip is easy and we will have instructions on how exactly to do that!
Theo's cousins, Porter and Kenna, sent him some funny videos of them playing. We showed Theo and he LOVED them! They are such sweet kids to think of him!
[Got some more SWAG and hired another employee!]
And Catherine O'Hara died. How freakin sad! She was too young! I saw a post saying we need to petition to rename O'Hare airport to O'Hara airport in memory of her running through it in Home Alone!
