Here I am: Make A Wish Granted

Monday, August 19th:

After I got Theo on the bus I water our plants and then went to work in the basement.

At 9:00 AM two guys from Access Elevator came by to install a lift in Theo's room for his Make A Wish.

Back in 2022 we started thinking about getting a wheelchair accessible van. Theo was getting heavier and it was getting harder to lift him in and out of his car seat in the Traverse. We looked online and saw that vans are really expensive (around 85 to 100K brand new), so we reached out to Mobility Works to see if they could find something for us.

In November we went to meet with Mobility Works. While they were showing us their vans they mentioned that we could try to get funding through some different grant programs. They also mentioned that some families have been able to get Make A Wish or other programs to help with the cost.

I went to the Make A Wish website and started the application process. I then reached out to Theo's Developmental Specialist to see if she would send in a recommendation. She was happy to do it!

It took a few months, but in March 2023 I heard from our Wish Coordinator. Over the next few months we chatted with her and with other people to get ideas about what we would like Theo's wish to be.

After a lot of thought we decided that a swim spa will be a great Wish for Theo. He loves to swim and a hot tub would be too small for him to float in, so a swim spa seemed like a great idea. In October 2023 we wished for a swim spa. A month later we were told that we could not wish for a swim spa.

Back to the drawing board...

In March 2024 we wished for an "Accessibility Package" (ceiling lift in family room, ceiling lift with rail in Theo's room, and stair lift for basement). A few months later I met with a representative from Access Elevator. She did measurements of the three areas and asked me questions about Theo's needs. In July, Make A Wish reached out and told us we could get one of the three lifts for Theo's wish. We choose the lift for Theo's room.

Which brings us back to the present. Today Access Elevator installed the lift in Theo's room!

They did a great job and we are so excited! Thank you to Make A Wish for granting us this amazing gift! We appreciate it so much!

That afternoon we went to PT at Becca's house with Ms. Cody and Ms. Becca. Theo looked so cool in his new polarized googles. And he had so much fun splashing in the pool!

After Theo's bath we decided to test out the lift. We were able to lift Theo from his push chair and place him into his bed. The lift works like a charm!

Theo had 10 observable seizures today with three longer focal seizures (96 seconds, 95 seconds, and 118 seconds).

Tuesday, August 20th:

While Theo was at school I received a call from Nurse Brad and Ms. Jess. Brad said that Theo was fine, but he had just had a focal seizure that lasted over 165 seconds. If Theo has a 3 minute long focal seizure (or a cluster of seizures without him returning to baseline) then they are supposed to administer his emergency nasal spray and call 911. Nurse Brad said he was just a few seconds away from administering the nasal spray, but then Theo came out of the seizure.

We took this opportunity to make sure we were all on the same page when it comes to Theo's Seizure Action Plan (SAP). I'm so glad that the team at Theo's school takes such good care of him!

After school I took Theo to PT and OT co-treat at High Hopes with Ms. Laura and Ms. Cody. Then we went to Sherman's house for Theo's lesson with Ms. Kaylin. Josh was in the area for work, so he swung by to watch Theo!

Theo had eight observable seizures today including one that was 165 seconds long.

Wednesday, August 21st:

The next morning Theo and I made the two hour drive to Peoria for his wheelchair clinic with NuMotion that started at 8:00 AM.

Theo was up super early (as usual), but luckily he slept on the drive down.

Josh was able to meet us there which was great! We were at the clinic for about two hours with Eric Holman (ATP), Gretchen Meyer (PT), and a ATP. The PT took notes and asked us a lot of questions about Theo. They also asked us what we were looking for. We told them about Theo’s recent scoliosis diagnosis and how we would like a wheelchair that would support him and could be used for transportation and as a activity chair. We also wanted something that Theo’s eye gaze could be mounted to. Eric brought out a Zippie and showed us all the bells and whistles. We also asked about getting a molded seat back. Eric told us the up side and down side of a molded back and we decided to get one. I think Theo would be much more comfortable in the chair with a molded seat rather than wearing his TLSO vest while in his wheelchair.

The chair is a bit more heavy duty than the one we currently have, so we would have to install a lift in the garage. The ramp we currently have is steep and pushing this heavy chair up it may be too hard and we don't have enough space for a longer ramp.

We are thinking about something like this:

We are really hoping that insurance will approve this wheelchair. It would give Theo so much more support and hopefully stop his scoliosis from getting worse. Fingers crossed!

After the wheelchair clinic we went over to the OSF Children's Hospital of Illinois. I've been trying to get a hold of someone for weeks to see if we can get a height adjustable adult/universal changing table installed. After going in circles I was told that it would be best to just try to find someone to talk to the next time we were at the hospital.

Our first stop was the front desk. I talked to a nice lady who wasn't very helpful. She said I should call Patient Relations, which I already had. I thanked her for her help and we decided to go find a suggestion box that another employee had told us about. We didn't find the suggestion box, but we did find a prayer box.

We decided to call it a day and head home, but then I decided to try one more person. I saw this elderly gentleman at another information desk and I had a feeling he would be able to help. I told him who I was and what I was trying to do and he said he knew exactly who I should talk to! He sent us down to Administration. We walked down there and started knocking on doors. The first lady we spoke to was pretty new, but as I was explaining who I was another lady, Amie, came around the corner and asked if we were talking about the new adult changing table. I was surprised to hear there was an adult changing table in the hospital. She said that they had just done some renovations in a staff bathroom and they decided to add in an adult changing table. Amie then offered to take us to see it.

We found the bathroom and I was happy that they had a changing table, but disappointed to see that they put in a non height adjustable that isn't even long enough for most kids over seven years old. It's a step in the right direction. I asked Amie who I can talk to about better options for future installations. She gave me Rebecca's email address and said that she would be able to help.

We then made the long drive back home through the beautiful Illinois corn and soy fields.

After we got home I sent an email to Rebecca with information about height adjustable changing tables that Changing Spaces recommends. She responded and said she will reach out after she talks to the rest of the people in her group.

We were only home for 30 minutes before I had to throw Theo back in van and we headed to OT with Ms. Laura. After we got home we had about 30 minutes before Ms. Jen came over for feeding/speech therapy. Ms. Jeannine was able to join us on Zoom.

Needless to say, Theo struggled to get through the hour long feeding therapy session. But he had a very long day, so we spent the second half of therapy hanging out on the floor where Theo could show off his stretches!

Theo had 5 observable seizures today.

Thursday, August 22nd:

After I got Theo off to school I went to the chiropractor. It's been years since I've been to the chiropractor, but I am hoping that getting adjustments will help with my migraines and headaches. We'll see!

OT was cancelled today, so after Theo got home from school he took a nap.

Theo had nine observable seizures today with three longer focal seizures (93 seconds, 140 seconds, and 72 seconds).

Friday, August 23rd:

Theo headed off to school, Josh went to work, and I had an appointment at the ENT. I have a bump in my mouth that my Dentist said I should have an ENT remove. The ENT checked out the bump and said he will remove it at the clinic next month. Easy peasy!