I don't know how it's possible, but this week is even busier and more stressful than the last! I ended up spending hours writing emails, posting statements, calling people, begging friends and family to help, and yelling at the sky when I got overwhelmed.
It's so hard to fight for what you believe in and it can get so hard when people just don't understand.
Have you ever heard the saying "The disabled community is the only minority you can join at any time?" It's true. And with a growing aging population there is a chance that you will either be a caregiver or someone will be a caregiver for you. Having powered, height adjustable, adult-sized changing tables in public places will greatly benefit the special needs community, aging adults, disabled veterans, people who are temporarily disabled, and their caregivers. I'm begging people to care about a cause before it personally impacts them and I know that is hard.
With all the setbacks we did have two victories this week:
Years ago when I first started this journey I went on Trip Advisor and found a list of the 50 top attractions in Illinois. I reached out to all of those places and asked them if they had a powered, height adjustable, adult-sized changing table. Only six places responded that they did. The rest either said they didn't or they didn't respond at all. If they said they didn't have a powered, height adjustable, adult-sized changing table I sent them a follow up email encouraging them to install one if they could. A few thanked me for the information and said that they would look into it.
Two years later I received an email from a lady who works at the Abraham Lincoln Presidential Library and Museum in Springfield. She wanted to let me know that were able to get a powered, height adjustable, adult-sized changing table installed at their museum! I am so excited to take Theo to the museum!
The second victory came from the Illinois DOT. The original Sami's Law (which was passed two years ago) required a powered, height adjustable, adult-sized changing table to be installed in the IL State Capitol Building. It also required powered, height adjustable, adult-sized changing tables to be installed at DOT Rest Stops if they
undergo renovations.
The DOT has started renovating some of the DOT Rest Areas. This is a huge project that will take years to complete, but the first renovation has been completed! There is now a powered, height adjustable, adult-size changing table at the Trail of Tears DOT Rest Area, which is located off I-57 in the Shawnee National Forest!
There are currently plans for powered, height adjustable, adult-sized changing tables to be installed at the Railsplitter, Coalfield, and National Trail DOT Rest Areas in the next year. While Fort Massac and Farmland will be after that!
Because of Sami's Law, there is now a powered, height adjustable, adult-sized changing table at the DOT Trail of Tears Rest Area. I am so excited to see that our original bill was able to make a difference. Now we need to amend and expand the bill, so we can help make Illinois more accessible!
Monday, March 23rd:
Theo and Nurse Stephanie went to school while I got ready for a phone call with a lobbyist and then with Representative Briel.
It was a very stressful couple of phone calls but it's all worth it! Representative Briel told me it was time to get people to start calling their Representatives and Senators. I want a bipartisian bill so badly, but when we learned that the Republican Caucus came out against the bill, I figured that dream was gone and the bill was dead. I knew we couldn't give up, so I made flyers, sent out emails, texted locals, and posted on social media. I needed all hands on deck!
I went to Theo's school to talk to his teacher and the school nurse about the bill. I passed out flyers and tried to figure out a ways we could compromise with the school lobbyist. I reached out to other school nurses I knew and I was able to hear from a school principal and superintendent (both of them support our bill).
After school Theo had PT with Ms. Becca. He worked really hard for her!
Tuesday, March 24th:
Theo and Nurse Stephanie went to school while I continued researching for Sami's Law. I started to hear back from people who reached out to their Representatives and most of the news was good!
After school we took Theo to The Legacy Ranch. There is a super sweet little boy named Noah who rides before Theo. I love seeing him, his adorable cowboy boots, and his family as we arrive for Theo's lessons. Noah doesn't say anything to us when we are there but he will wave to Theo. His parents told me that once they get home Noah talks non stop about his friend Theo! It's so sweet!
This week we saw Noah and he gave Theo this cowboy hat! How sweet is that?! He was so excited to show us that he has a matching hat too!
[It has Theo's name on it!]
After Theo's lesson we took a few photos outside.
Our adorable cowboy!
Wednesday, March 25th:
Theo and Nurse Jess went to school, Josh practiced his golf swing, and I started stressing about something else - but in a good way! We heard from our client that work is starting back up, so that means Northern Integrity will be hiring back our two guys from last year and they will be starting work in Illinois on Monday! This also means that Josh will be going back to work full time. It's been nice having him at home, but our savings account has taken a hit, so it's time for him to go back to work.
And look what we got:
Theo's food exploded during transit. Normally this wouldn't be such a big deal, but we've been having a hard time getting his food from the supplier, so every month we are short. Luckily, Theo's dietitian has been able to get us a few sample packs to hold us over and the other box that came was fine. So, Theo still has food, but I am getting really frustrated with his GI Specialist and the supplier.
Thursday, March 26th:
Today is Purple Day aka Epilepsy Awareness Day. It's a world wide event that brings attention to epilepsy.
Unfortunately for our Epilepsy warrior, Theo had a dentist appointment today.
Theo, Josh, Nurse Stephanie, and I headed to Frankfort for Theo's appointment. It was a six month check up, but it may be a little more intense than his last six month check up. It all depends on how hard it is to get that dark staining off of his teeth.
Theo was upset before we even entered the building.
Luckily, the wonderful ladies at the clinic are very patient. Josh held Theo's head while I held Theo's arm and his iPad. The two hygienists worked quickly and the staining came off with the regular polisher. I noticed some blood in Theo's mouth and they said he had a few loose teeth that were ready to come out. We gave Theo a little break and then the dentist came in. She looked in Theo's mouth and used a few different tools to pick at his teeth. In the end she said that his teeth look great and there are no cavities. YAY! We know that someday Theo may have to go under anesthesia for dental cleanings, but the longer we can put that off the better.
[Well, the last storm brought record breaking hail that were soft ball size, so I would do this too!]
Josh picked up his new golf clubs today. He was VERY excited!
[They are very cool!]
I called my Representative today and left a message. I told him that I am one of the authors of the bill and if he has any questions to give me a call back. I did get a call back! It was from one of his staffers. I believe I spoke to her two years ago when we were trying to get the original bill passed. We had a great conversation and she asked me a lot of questions. At the end of our conversation she said that the Republican Caucus did come out against the bill, BUT the Representative would break with his party and go with his constituents. As of that conversation he was leaning towards a YES! I may get my bipartisan bill after all! After I got off the phone I sent my Representative this email and he responded:
Guys, you voice does matter! Please call and reach out to your Reps! They work for you!
Friday, March 27th:
Theo and Nurse Stephanie went to school for only a half day since Spring Break is next week!
While they were at school I had a Zoom with Theo's dietitian, Ms. Jeannine. Theo lost weight again and he is not supposed to be losing weight. He is supposed to be plateauing. I blame this on a few things. We keep getting dangerously close to running out of Theo's food every month, so we have been giving him a little less than what is prescribed. I have reached out to his GI Specialist and his nurses so many times, but I can't get them to send over an order for more food. They don't understand that we can't get every single little drop out of the food cartons AND the supplier has been shorting us... let me explain...
Theo is supposed to get 17 ounces of Compleat Pediatric Peptide 1.5 a day. Each carton contains 8.45 ounces. So, in a 30 day month we should get 60.4 cartons. BUT the supplier rounds down and will only send us 60 cartons. And that is assuming that we can get every single drop out of each carton and there is no residue left in his feeding bag after his overnight feed. We even started putting a little water in the empty cartons, shaking it up, and pouring it into the measuring bottle just so we could try to get every little bit out!
I asked his GI to increase the order saying Theo needs 17.5 ounces a day, so we can have some extra food, but that falls on deaf ears. I talked to his nurse and she said she was able to send an order to his supplier for an extra 3 ounces A MONTH. First of all, that's not enough. That won't even get us an extra carton. I reached out to the supplier to see if they got the new orders and they said they didn't. I went back and forth like this for weeks and I'm just so tired of dealing with it. Between my multiple jobs I am on the phone CONSTANTLY. I am running out of hours in the day.
Sooooo... Jeannine and I talked about switching to a different supplier or a different doctor. Theo's current doctor wants him in the 20-30th percentile for weight. I feel like we can get there without Theo loosing weight. He is still growing and if he plateaus then the curve will eventually move. BUT the last two times I talked to him he wasn't worried that Theo was losing weight. Jeannine is worried, which makes me worried.
I'll let you know what ends up happening.
I then had to call another one of Theo's supply companies (yes, we have a lot of them) to see why his diapers haven't arrived yet. After being on hold for a while (See? I'm always on the phone) I got a hold of a human. She told me that they need a denial letter from Theo's primary insurance so that they can run the diaper order through Medicaid. Cigna will 100% deny the request for diapers. I know that, they know that, the doctors know that. But they need the letter. So, now I have to call Theo's Pediatrician and ask them to send a RX to Cigna for Theo's diapers. Once they get the denial letter they need to fax that to the medical supplier. Once the medical supplier gets the letter and the RX they will send that to Medicaid. Then they will approve the diapers and the medical supply company will send them to us. And we have to go through this dance every few months. Good thing I have unlimited minutes on my cell phone.
That afternoon Theo had PT with Ms. Becca. They worked really hard at working with his left hand and laying on his right side.
Weekend:
Ms. Jess came over on Saturday to take care of Theo.
I've been sending this little blue suitcase to school with Theo for about a year now. The handle broke but it still works as a bag (please don't pick up rolly bags by their extended handles). I decided that an upgrade was needed so I tossed this blue rolly bag (thank you for your service!) and bought a teachers bag.
So far the nurses love it! I really like that it stays upright the entire time and Theo's eye gaze and the nurses laptop aren't shifting around in there.
[Star Wars is always relevant. Have you seen Andor yet?]
Ms. Jess drew this picture of Theo and his friend Noah and Theo helped to color it in! I'm excited for Theo to give it to Noah on Tuesday!
