Danny Did Foundation Gala

Monday, March 16th:

It was the start of another busy week! Theo and Nurse Stephanie went to school, Josh worked on his golf swing and went to the chiropractor, while I worked in the basement.

Theo had DLM testing at school and it should continue for the rest of the week.

After school Ms. Laura and Ms. Becca came over for OT and PT. Theo worked very hard!

Tuesday, March 17th:

Theo and Nurse Stephanie went to school where Theo continued his DLM testing. 

After school we took Theo to The Legacy Ranch to see Sherman and all his friends. Theo had two weeks off since his last session and he definitely struggled more today. 

Wednesday, March 18th:

Theo went to school with Ms Jess and they had a fun time!

After school Theo was able to take a nice nap and relax.

Thursday, March 19th:

There was a hearing with the Human Services Committee at 8:00 AM at the State Capitol Building. Representative Briel presented the Sami's Law ammendment bill (HB 4379) to the committee. A lot of people (including myself) sent in written statements and my friend, Deepa, went all the way to the Capitol to present her statement in person. There were a lot of witness slips sent in in support of the bill, but there were also a few that were in opposition.

The Committee debated the bill and it passed along party lines. Now the bill moves out of Committee, but we need to make sure we have enough yes votes before it is brought to the House floor for a full vote.

I don't understand why anyone would be opposed to this bill. It requires that an "Adult Changing Station" be installed in newly constructed public buildings that serve over 1500 poeple a day, are over 40,000 square feet, and are constructed after January 2029. This bill does not hurt small businesses. This bill is not a burden on tax payers. This bill is the next step to making the world more accessible. I decided to reach out to everyone that opposed the bill to ask them why they opposed the bill. I heard back from a few people and after I was able to clarify what the bill actually said the people said they would support the bill! I also talked to a lobbyist who works for the gas and oil industry. He said that they can get on board since the bill would only impact new construction and would only impact larger gas station chains like Love's, Wally's, and Buc-ees, who should have family bathrooms with powered, height adjustable, adult-sized changing tables anyways. YAY!

But then I heard from the lobbyist who represent school districts and superintendents. They told me that my bill was a tax burden, not necessary, and they would try to kill the bill because they are against mandates. We talked about how a new High School can cost around 250 million dollars to build. Including a $10,000 powered, height adjustable, adult-sized changing table would not be an additional burden. They did not agree. I called Representative Briel and explained to her what I had learned. We are going to set up a meeting with the lobbyist to see if we can come up with a compromise. 

[Something to remember]

That night Josh and I went to a gala for the Danny Did Foundation. The foundation works "towards advancing awareness, eduction, and disclosure between medical professionals and families impacted by Sudden Unexpected Death in Epilepsy (SUDEP)." The family that started the foundation lost their sweet four year old, Danny, to SUDEP in 2009.

The gala took place on the 57th floor (Ohana Floor) of the Salesforce Tower in downtown Chicago.

We walked around the floor, got some food, admired the view, and then went to a presentation given by some of Danny's family members.

The presentation was very touching and I love what this foundation is doing. We were recommended to the Danny Did Foundation by Theo's Epilepsy Specialist and through their website we were able to get a SAMI camera. It helps us sleep better at night knowing that this speciality camera is keeping an eye on Theo while he's sleeping.

Friday, March 19th:

Nurse Stephanie stayed late last night, so Josh and I could go to the gala and then we was back bright and early the next morning to take Theo to school. We appreciate her so much!

Theo's class took a field trip to "We Rock the Spectrum!" Even though Theo couldn't do all the fun activities, he had a lot of fun on the swings and the trampolines.  

This sums up our week:

Since the weather was really nice on Friday Josh was able to set up our new Cedar planters. I think they look really nice!

[Isn't he the coolest?!]

My parents are in Sydney and my dad is wearing a Northern Integrity hat at the Sydney Harbour Bridge! We are international!

I talked to Theo's Epilepsy Specialist and since he is doing so well on Rufinamide she thinks it is time to start weaning him off of the Zonisade. We will start that wean now and it will take 10 weeks. In two weeks Theo will get labs and another EKG.

On Saturday Josh and I went and saw Project Hail Mary. It was really good and I highly recommend it!