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! 

Theo had a great day at school, but he was very tired!

You can usually get big Theo smiles when he is playing Peek-a-Boo Barn!

Theo had nine observable seizures today including one that was 90 seconds long.

Weekend:

We were all pretty tired from a long week and Josh and I both had to work on Saturday, so we didn't do a lot this weekend.

8.24.24 is Kobe Day:

Josh bought a used BBQ. He said it just needs a few small adjustments and it should be good as new.

[My cute boys!]

Our seven day forecast is not looking great. This is the reason why I tell people not to visit us in the summer!

And this is just another reason why Autumn is the best season:

Sports, apple cider doughnuts, and crispy weather FTW! 🙌 

Sami's Law is now a LAW!

Sami's Law Passed!

Things have been moving very quickly since Senator Sue Rezin introduced the bill and Renee and I testified in front of the Senate Executive Committee on May 8, 2024.

The bill was slimmed down and added to another bill ("shell bill"), which was sent back to the Senate Executive Committee. On May 15th the Senate Executive Committee voted to move the bill to the floor of the Senate. On May 16th it was voted on by the Senate and it passed unanimously! 

It was then sent to the House Human Services Committee. We found out about the hearing too late and neither Renee nor I were able to testify in person. I was able to send in a statement AND we got over 150 witness slips! Thank you to everyone who sent in slips! 

The House Human Services Committee voted on May 21st to move the bill to the floor of the House. There is some concern "about timing," so the bill was adjusted (again). I then asked people to call their Representatives and ask them to vote for our bill. I called Representative Jed Davis' office and spoke to his assistant. She told me that Representative Davis will vote for the bill. She then told me that she didn't realize that this was even an issue and she is happy that we are working so hard to bring awareness to this issue. 

On May 23rd the House voted and unanimously passed the bill! On June 21st the bill was sent to the Governor.

Governor Pritzker signed the bill on August 9th and Sami's Law is official!

The bill is slimmed down significantly from where we wanted it (Original bill SB 2908 vs what they passed SB 1089), BUT it's a great start and we will keep fighting for the rights and dignity of the Special Needs Community!

First Day of Second Grade!

Theo started Second Grade this week! I know he's been enjoying this last month at home and hanging out with Ms. Jess, but now he gets to go to school and he still gets to hang out with Ms. Jess! Lucky guy!

Monday, August 12th:

Ms. Jess came over today to hang out with Theo while I worked in the basement and Josh was in the field. 

[Theo loves to sit on the couch like a big boy!]

Theo had 15 observable seizures today.

Tuesday, August 13th:

Josh went to work while Theo and I stayed home and got Theo's backpack and wheelchair all ready for school.

Theo got some fun Tonies from Grammy Suzi for his birthday! Thank you!

[Watching Wish and laying on his right side]

That afternoon we went to High Hopes for PT/OT. Theo worked hard and had a great session!

Theo had six observable seizures today.

Wednesday, August 14th:

Theo's school starts 50 minutes earlier than it did during the last school year. But that's fine with us since Theo gets up at 5:00 AM everyday anyways 🤦‍♀️

I got Theo ready and then sent him off to school! He was very happy to see his bus driver, Ms. Gina, and the bus aid, Ms. Karen. 

We were able to make the school schedule and Theo's therapy schedule work out perfectly. Theo will get dropped off by the bus every day at 2:00 PM. Then on Monday, Tuesday, Thursday, and Fridays I'll load him right into the van and we will head off to either PT or OT. It's so nice that I don't have to pick him up from school because it gives me more time at home to work, work out, and run errands.

Theo had eight observable seizures today.

Thursday, August 15th:

My friend Renee sent me this newspaper article. How cool is that?!

After Theo went off to school I got a call from Access Elevator. Their installer wanted to stop by to check out Theo's room (where the lift will be installed on Monday). I said that was fine. The installer showed up and I showed him Theo's room and how to get into the attic. He told me that depending on how much work he has to do in the attic it could take up to two days to get everything installed. He saw Theo's bathroom and told me that that was one of the nicest home accessible bathrooms that he's ever seen. That's always nice to hear! We are very excited for the lift to be installed and for Theo's Wish!

After Theo got off the bus I rolled him into the van and we drove to OT.

Theo had 10 observable seizures today including one that was 95 seconds long.

Friday, August 16th:

I got Theo onto the bus and then I went to work in the basement. Later I went to get my allergy shots and then to the grocery store. I was craving sugar really badly and the first thing I saw when I got in the store was an Oreo display! UGH! I bought a pack and some milk along with our other healthier groceries.

That afternoon I took Theo to PT at Ms. Becca's house where Theo got to go swimming with Ms. Cody. He was splashing like a crazy person and jumping up and down in the shallow end! Theo is pretty good about wearing his sunglasses in the pool, but he keeps getting water in his eyes from all the splashing. So I bought him these polarized swim goggles! Aren't they so cool?!

After dinner I had some milk and cookies. They were so delicious!

Theo had five observable seizures today.

Weekend:

At 3:00 AM I was woken up by a killer migraine. I immediately took some Excedrin Migraine and put my THERAice on. It was awful. It felt like I had an icepick in my right eye. I was super nauseated and the small light on our air purifier was blinding me.

At 5:15 AM Josh headed off to work and I struggled to get up and get Theo out of bed. Once I got him up and settled down I took more meds and put my THERAice back on. It was a really rough morning.

I've had three migraines this month. I've been tracking my period and my sugar intake to see if there is a trigger, which is why I mentioned the Oreo's earlier. I need to see my doctor next month anyways to get some altitude meds, so I'm going to talk to her about the migraines. 

Josh went to work and then went to Peoria to take another inspector test to get his 1184. We aren't going to get the results until November, but Josh feels really good about it.

I've been working hard on planning my trip to Utah in October. I will be hosting a Girls Night In at my Airbnb with some friends and old college roommates (about 15 ladies total). I spent this weekend sending out invites, researching food options, and making trivia games. I'm going to bring Harry Potter and FRIENDS Trivial Pursuit, card games, and I made two music trivia games. I tested them out on Josh and he did really well! We are also going to get a charcuterie board, dinner from VIA 313, and treats from Ambrosial bakery. I am so excited!

Birthday Week!

It's our last full week of summer before school starts! AND it's our birthday week!

Monday, August 5th:

Theo had a fun day playing with Ms. Jess while Josh and I went to work. Theo rediscovered his barking puppy dog and thought it was hilarious!

Theo had 16 observable seizures today. 

Tuesday, August 6th:

Josh headed off to work and Ms. Jess came to watch Theo. I worked in the basement and then I attended a Zoom with my fellow Changing Spaces chapter leads. They welcomed a few new chapters (YAY!) and then we got some updates about current leads and projects. I loved hearing from all the leaders, especially the ones who have been fighting this battle for years. They have so much knowledge! I learned about the TN grant programs and the IRS, the campaign working with Access Board and the ICC, what the Olmstead Act is, work that is going on with Veterans groups and various lobby groups, and that Koloa Care is making a universal changing table. It was a great conversation and it gave me a lot of ideas on who to reach out to in Illinois. 

After the meeting I took Theo to PT and then to see Sherman.

[Always stretching!]

Theo had 12 observable seizures today.

Wednesday, August 7th:

Now that they have gas on the line, Josh's job is working on taking up the old gas line. That should take a couple of weeks and then they will need to do some cleanup work.

Ms. Jess came over for a few hours this morning, so I could get some work done before taking Theo to OT at noon. After therapy he took a nap and then Ms. Jen came over. Ms. Jeannine was able to Zoom in and we talked about Theo's progress and his feeding schedule for school.

Theo had eight observable seizures today.

Thursday, August 8th:

HAPPY BIRTHDAY THEO! 🎉🎉

It is Theo's 7th birthday today! I can't believe it!

I took Theo to see his Pediatrician, Dr. Dave, for his yearly check up. We haven't seen him in 11 months which is very rare for us. But that is good news! It just means Theo hasn't had any surgeries and hasn't been super sick in 11 months! 

After chatting with Dr. Dave we went to Theo's school to drop off the totes of school supplies. We ran into Ms. Jess, Nurse Brad, and one of the school admins, Ms. Natalie. They all came out to the van and sang Happy Birthday to Theo! It was so very sweet!

That afternoon we went to see Ms. Laura at Thrive for OT. It is also Ms. Laura's birthday today! Theo got extra swing time and a huge balloon and I got a piece of homemade cake that was made by Ms. Jill! We love Ms. Laura and all the ladies at Thrive! Thanks for the delicious cake Ms. Jill!

Theo has mixed feelings about the balloon. He did think it was fun to hit it with his bells! Thanks Ms. Laura for the fun birthday gift!

Right after OT Theo and I went to see Cole at CPO. I put Theo in his Vest and AFO's so Cole could evaluate him. Theo's left arm has been turning purple if he is sitting up too long with his vest on. Cole did some measurements and was able to shave the vest down a bit more. Cole then checked the AFO's and said they are a little short, but they are fine for now. We'll come back in a few months and get Theo measured for new AFO's.

I found out online that you can donate the AFO's, SMO's, vest, helmets, etc. back to SureHands and they will donate them to kids in developing countries all over the world. It's best to have them custom made, but having second hand orthotics is better than nothing. I'll be sending is first three pairs off to be donated this week.

Theo's AFO's and SMO's over the years:

August 7, 2020 - Monkey's

November 1, 2021 - Monster's

October 31, 2022 - Nautical Theme

September 14, 2023 - Construction

Theo had six observable seizures today.

Friday, August 9th:

It's my birthday today! YAY! I'm 29! 🙈

To kick things off in the morning I had a killer migraine. Awesome. But then I got to take Theo to PT at the pool with Ms. Cody. He LOVED it! They did some walking and sang the motorboat song!

Josh got home a little early from work, so we got chicken strips with ranch for dinner. It's my guilty pleasure! Happy birthday to me!

I got a message from my friend Renee who told me that she heard that Governor Pritzker was going to sign Sami's Law today! And he did! I am so happy! What a great birthday present!

We are almost ready for Access Elevator to install the lift in Theo's room. Today the electricians came by to take out the ceiling fan and install a low profile light. Access Elevator is scheduled to install the lift on August 19th!

Theo had three observable seizures today.

Weekend:

On Saturday morning I was woken up by an awful migraine. This is my seventh migraine this year and the second time I was woken up by a migraine. I was so dizzy and it felt like someone punched me right in my right eye. I took meds, used my TheraIce cap, and used my zōk but nothing worked. After a few hours of lying in bed in pain, I stared to feel a little better, but I was still really sensitive to light. Luckily, Josh was able to go into work a few hours late. 

After work Josh went and took the 1169 Pipeline Inspector test. He passed with flying colors! Congrats Josh!

We decided it would be WAY easier for me if I didn't have to deal with all of these binders at work. Filing in binders is ridiculous and very time consuming! So, Josh picked me up a large filing cabinet. We had a fun time getting it into the basement, but it'll be worth it!

Now I get to put all the paperwork from these binders into the filing cabinet. But that can wait until Monday!

We got the SAMI installed in Theo's room today. It will alert us if Theo has a TC seizure during the night. This device will definitely help Josh and I sleep better at night.

The Olympics closing ceremony was Sunday night. Thank you Paris! I love the Olympics and I am so excited for the next summer Olympics to be back in LA!

8.10.24 - The day the men's basketball team won their fifth straight Olympic gold!

And hey look! It's preseason! Go Chargers!