Wednesday, August 27th:
I was supposed to have a call with my Cigna rep, Michelle, today to talk about our next steps when it comes to me getting a refund from the ambulance company.
Remember we had two ambulance bills to pay from last year. One was $1609 and the other was $1710. I went back and forth with insurance and they finally decided to pay part of them. I then paid $755 to cover some more of the bill. After I paid, I learned that Cigna paid the rest of the bill! We tried for months to get a refund but the company just sent us in circles. It was a nightmare. Finally we got a hold of someone who said they would do a review of my case and we should call back in 10 days. We did. The next person we talked to said it was found that we deserve a refund and the check will be there in 7-10 business WEEKS! So, Michelle and I counted out the weeks and we had plans to call them when the 10 business weeks were up. That would have been today. But by some miracle the check showed up yesterday! THANK YOU! And this is why you have to just keep calling! It took 10 months but this nightmare is finally over!
That afternoon I went and saw my family doctor for my yearly check up. Since I'm 40 now I get to have a mammogram. Yay! I also had a pap and bloodwork done. Every thing looks good and I'll have my mammogram next week.
That night I went to a meeting at our town hall about updates they want to make to our local park. There are plans to update the park with inclusive equipment. At the meeting I spoke to the designer and a member of the panel. They did not have plans to include a powered, height adjustable, changing table but after giving them some literature and my card, they appear more open to it.
There are many parks in Illinois that are updating their equipment to be more inclusive and accessible. And that is great! BUT they are not including powered, height adjustable, adult sized changing tables. It's a common problem and I think it's due to a lack of awareness and funds.
1) Coal City Hope Helps All Inclusive Playground. Their powered, height adjustable, changing table has been broken since at least May 2024. I've called consistently and for over a year now they've told me that the parts are on backorder. Please give them a call at 815-634-8608 and ask for the powered, height adjustable, adult-sized changing table to be fixed.
2) Joliet is updating a park at the Inwood. I've reached out to them about installing a powered, height adjustable, changing table and they said they would look into it. I've continued to follow up with them but no one will return my calls.
3) Peoria TriCentennial Park. I spoke to a lady at the Park District who informed me that they are putting in a powered, height adjustable, changing table in the newly constructed bathrooms. We stopped by a few days and go and the bathrooms are still under construction. Hopefully they will be finished soon!
4) Mokena Main Park. They will be updating the park with inclusive equipment and I reached out to see if they had plans to add in a powered, height adjustable, adult sized changing table, but they do not. Of course, it's a funding issue.
If you hear of any parks that are updating their equipment to be more inclusive please let me know and I can reach out to them! A park can't truly be inclusive if it doesn't include a powered, height adjustable, adult changing table!
Thursday, August 28th:
Theo headed off to school with Nurse Stephanie, Josh went to work, and I went to see my Dermatologist for my yearly skin check. Of course I was super good in Cabo and wore SPF 70 the entire time, but my scalp got a little burned on our final day. I asked my Dermatologist to double check my scalp since that is not the first time I have burned it (I have thin hair). She looked over everything and didn't see any issues. I'll see her again in one year.
While I was in Cabo Josh pruned the bonsai and wired some of the branches. Our little tree has come a long way!
Theo has been working really hard at school and he has his good days and bad days. He's still having 5-10 observable seizures a day. The really rough ones happen when he is tired or over stimulated.
Friday, August 29th:
Theo and I headed down to Peoria to see APRN Jennifer at the Developmental Specialists' office. She is fantastic! We ended up chatting for over an hour about accessibility and Theo and Medicaid and everything else. At one point she said she wished there was a list of all the places that had adult changing tables. I told her about the Changing Spaces
map and gave her a bunch of my business cards that has a QR code for the map on the back. She was so excited to share the cards with the rest of her patients!
Remember back in 2023 when Theo got
Metapneumovirus and was life flighted to Peoria and put on a ventilator? If not, you can read about it here,
here,
here, and
here. Since then Theo has been using a
nebulizer and high-frequency chest wall oscillation vest twice a day. BUT insurance didn't want to pay for a sest, so we bought two of them ("The Vest") from other special needs families who didn't need them any more. Well, The Vest worked for two years, but the wraps that we were using were really wearing down. I reach out to Theo's Pulmonologist to see if they could send orders for a new wrap. They did, but unfortunately the DME wouldn't give them to us because we were not the originally owners of "The Vest." I asked how much it would cost to pay out of pocket and they said $400 a piece. Insane. I then asked Pulmonology if we could try to see if insurance would cover "The Vest" for Theo. I know two years ago BCBS wouldn't do it (they didn't like to cover equipment), but we have Cigna and Medicaid now. They sent in the orders and within 10 days we had an InCourage machine and a fancy vest for Theo!
[He doesn't like it]
I was able to donate one of "The Vest" to a family in Chicago and the other one was gave to a kid in Theo's class. I was able to meet his parents too and they are really nice!
Josh worked LONG hours for 2.5 days to get his Jeep back up and running.
When he told me he was ready to "fire it up" I showed up with a fire extinguisher. You know, just in case 😬
Josh ended up doing $1000s of dollars worth of work, but the Jeep is sounding really nice!
On Sunday, our favorite construction lady from Making Home came over to see what she could do for us with the fridge/kitchen area. She had some great ideas and we are excited for her to get started! She did such a great job on our
laundry room, so I have confidence she'll make our kitchen look great too!
[Let's go Bolts!]
[How cool would it be to go to a game in Brazil?!]
[I love this!]
