Sunday, March 17, 2024

New Pulmonologist & Bathroom Update

Monday, March 11th:

During our long drive to Peoria to see Theo's new Pulmonologist, I received a message from a special needs advocate who saw my post about the Universal Changing Tables. She said she reached out to Senator Castro and talked to her about the bill. Senator Castro had a few concerns about the bill. She was worried that this bill would force small businesses to put in these tables which would cost a lot and they may not have room or the infrastructure. Our goal is not to punish small businesses at all! I reached out to my Senator and got a copy of the bill. It's only two pages long and it clearly states that this bill would only apply to businesses that are 40,000 square feet or larger. So, Senator Castro didn't read the bill before she voiced concerns about it. I sent a copy of the bill to the advocate and she said she would reach out to Senator Castro again to discuss what is in the actual bill. Fingers crossed she brings it forward for a vote!

Like I said before, I don't want to hurt small businesses. This bill is targeted at large businesses like shopping malls, big stores (Target, Walmart, Costco, etc.), museums, amusement parks, airports, hospitals, schools, and interstate rest stops. How nice would it be to know that if Theo needs to be changed we can stop by any Target and there would be a safe and private place for me to change him? And if this bill is successful here than maybe other states will look into it too. It may seem like it's not a big deal, but it would help so many families.

We arrived at the hospital at 1:15 PM for our 2:00 PM appointment. As I was getting Theo's wheelchair unlatched from the van I noticed that Theo had pooped. We know there aren't universal changing tables in the Children's Hospital and I didn't want Theo sitting in his dirty diaper until at least 2:00 PM when we could get into a room with an examination table. So we had to change him in the parking lot on a massage table that is always in the trunk of our van. Theo was really upset and it was windy, so it made it hard to change his dirty diaper. We got Theo all cleaned up and then headed inside the hospital. We checked in at 1:35 PM and didn't get called back to the exam room until 2:30 PM. 

[Josh taking Theo for a walk around the hospital lobby]

We then met with Dr. Yuan, Theo's new pulmonologist. We talked about Theo’s past respiratory history and what we are currently doing to help (respiratory therapy, dulera, hydroxyzine, albuterol, etc.). He then examined Theo and found that his oxygen levels are good and his lungs sound great. We then talked about the results of Theo’s sleep study. He said that due to his oxygen levels being at 97% on average he wouldn’t recommend any supplemental oxygen. We then talked about the results of his two night oxygen test. He said that the test results look good and we need to keep doing what we are doing. He also believes that the melatonin prescribed by Dr. Stewart probably isn’t helping Theo go into REM sleep, so we can stop giving him that. Easy peasy! We will see him again in July.


Theo had three observable seizures today.


Tuesday, March 12th:


Today was a very busy day for us! Theo went to school while I went to get my allergy shots. Ms. Jess said Theo had a great day and ate half of his pouch food! 



After school we went to High Hopes where we saw Ms. Laura (OT), Ms. Cody (PT), and Ms. Jeannine (Dietitian)! We use to see Ms. Jeannine a lot at PT, but then during the pandemic she switched to Zooms and co-treated with Ms. Jen (Feeding/Speech). Theo had a great session and was showing off to the ladies!

After therapy we went to The Legacy Ranch for horseback riding lessons with Sherman and Kaylin. Theo did great and was very patient whenever Sherman stopped. We talked to Kaylin about encouraging Theo to use his elbows to hold himself up. It'll be a work in progress!

Theo had eight observable seizures today.

Wednesday, March 13th:

Theo headed off to school while Josh and I went to my favorite store, REI! We just needed a few more things before our trip to Iceland and REI still had a lot of their winter clothes out. I got two warm base layers and a flannel top, while Josh got some pants and a flannel top. It springtime so the weather can be unpredictable, so we want to be prepared for anything! I think we are ready!

Tribeca Marble came over and installed the white countertops. They look great!



At school Theo participated in a "sensory exploration." Surprisingly he liked a few of them!



[Josh caught another bunny, don't worry, he takes them to a field and releases them 🙂]

After school Theo had feeding therapy with Ms. Jen. He didn't eat a lot at school, so I was worried how he would do with Ms. Jen, but he ate three yogurt bites! YAY!

Theo had six observable seizures today.

Thursday, March 14th:

Theo had another fun day at school! They played on scooters during PE and Theo was a human bowling ball! 

After school we took Theo to OT with Ms. Laura. While we were there one of her students told me about the Gemini Giant in Wilmington. This statue has been an icon on Route 66 for 60 years. The small town loves him so much! The current owner owns both the Gemini Giant and the Launching Pad restaurant that is next door. She is very angry right now and is selling the restaurant and the statue. She said that if she doesn't get $100,000 for the statue she will destroy it because it's a "false idol." Google it if you want more info. Anyways, the town is rallying and trying to raise funds to buy the giant from her. I suggested reaching out to the IL State Historical Society to see if they can protect it by adding it to the National Register of Historic Places (NRHP). She said they were trying but they were running out of time. The auction is next week and as of right now it looks like their GoFundMe isn't going to raise enough money to be able to buy the Gemini Giant. It's so sad that a classic piece of Route 66 history is going to be destroyed.

I've never seen the Giant, so after OT we drove the 10 minutes out to Wilmington to get a few pictures. We were warned not to go onto the property, so I stayed across the street and got my pictures. The current owner parked her car (she decorated it, her house, and her fence herself) in front of it to discourage people from getting pictures.




Hopefully the small town can rally or a wealthy anonymous donor will swoop in and buy it!

Theo had three observable seizures today.

Friday, March 15th:

Theo headed off to school while Josh and I waited at home for the plumbers to show up. 


The plumbers had not come by the time I had to leave to get Theo from school, so Josh stayed behind to wait for them. When I got to school Ms. Jess told me that Theo wanted me to see him using his eye gaze. I went into the conference room and saw Theo working with his teacher, therapists, and a representative from the eye gaze company. It's such a cool device and I hope that we can get one quickly for Theo!


After school I took Theo to PT. When we got home the plumbers were there. They were able to install the floating sink and get the water hooked up. They were also able to get the shower all hooked up and running. They said they would be back on Monday to finish the vanity sinks.



Theo had ten observable seizures including one that was 74 seconds long.

Weekend:

Over the weekend Josh went to a movie with some friends, Theo stood in his KidWalk for 15 minutes, and Theo had his first shower in his new bathroom!

Another volcanic fissure has opened in Iceland. Seeing an active volcano would be so cool as long as none of the locals are in danger. We don't know if it will still be active when we are there, but we can hope!




[First time in the new shower]

Sunday, March 10, 2024

Universal Changing Table Update and Marry Poppins

Monday, March 4th:

HAPPY CASIMIR PULASKI DAY!


Theo didn't have school today due to Casimir Pulaski Day. Yes, it's an Illinois holiday and it's pretty much only celebrated in the northern Illinois 🙂

That morning a guy from Tribeca Marble & Granite stopped by to measure the newly installed vanity for the countertops. Those will be installed next Wednesday (3/13) and then our general contractor and the plumbers will come back in at the end of next week to finish everything!

Theo grew, so we were able to add another support piece onto his KidWalk. Now he has more support across his hips and his chest. He was able to stand for 10 minutes as opposed to just 5 minutes before we added the extra piece.



[Before and After]

After 10 minutes in the KidWalk we move Theo over to the Gazelle where he can stand for about an hour. 


That night we had another round of storms. This time there were no tornados, but we did get some serious rain, lightning, and hail!




Theo had three observable seizures today.

Tuesday, March 5th:

Theo was very happy to go back to school today!

His super sassy personality came out today while they were reading a book about the sun. They asked each of the kids in the class how they feel about the sun and Theo made it very clear with his device that he "DOES NOT like the sun!" Gotta be a rebel!

We got Theo's professional school pictures back:


Isn't he soooo handsome?! Thanks Ms. Jess for making him laugh!

After school we took Theo to OT with Ms. Laura at High Hopes and then we went to The Legacy Ranch to see Sherman and Ms Kaylin.

Theo had five observable seizures today. 

Wednesday, March 6th:

Theo gets to ride the bus twice on Wednesday, which he loves! He had another great day at school and after he got home he had feeding therapy with Ms. Jen. Theo ate a couple stars and had a bite of a beef pouch. About 45 minutes into the session Theo got restless, so we went and sat on the floor so he could stretch out. While we were on the floor Theo tried to roll over his right side twice. I had to help him, but he was very determined! I think he wanted to show off to Ms. Jen!



LeBron is growing on me, BUT I will never forgive him for destroying the Lakers on Christmas Day 2009 when we were at the game. Maybe bring the Lakers another Championship and we'll talk 🤣

Theo had nine observable seizures today including one that was 73 seconds long.

Thursday, March 7th:

Theo headed off to school while Josh and I ran some errands and got things done around the house. I printed off a list of things I need to pack for our trip to Iceland and what we still need to buy. Luckily, my REI dividend check arrived, so we have $100 to spend there. I can't believe we leave in a month! I'm so excited!

That morning I received an update on IL Senate Bill SB 2908 from my State Senator Sue Rezin's assistant, Renee Abraham. I don't remember if I've posted about this before so I'll recap here just in case:

Before our trip to Disney World in December 2021, I was trying to find out if there was an adult changing table in the O'Hare Airport (there is!). During my search I found a website called Universal Changing Places where they list out where you can find large adult changing tables are throughout the USA. I then found another website that list out which states have past and current legislation on adult changing tables. I found Illinois and saw that my State Senator, Sue Rezin, put forward a bill back before the pandemic. But it didn't go anywhere.

In October 2023 I reach out to my State Senator about this bill and I heard back from her assistant, Renee Abraham, who told me that the bill didn't go anywhere during the pandemic because nothing went forward unless it was pandemic related. Renee also told me that she too had a special needs child and she was the one who suggested to Sue that universal changing tables were something that are needed. If the legislation moves forward they want to call it "Sami's Law" after Renee's daughter!

In January 2024 Renee reached out to let me know that the legislation was filed and it will be Senate Bill 2908. On March 7th she reached out to me and told me that the bill was assigned to the executive committee and they are hoping it will get called next week. Senator Castro is the one who decides what bills get called. Renee told me that if I called Senator Castro and asked her to call the bill that that would help! I decided to call and leave a message. I then posted on Facebook and Instagram and got more people to call! The bill also has a co-sponsor who is a Democrat, so that will be helpful since it is now bipartisan. 


[Universal changing table in O'Hare airport terminal 2]


I really hope this bill moves forward! We need safe places so that all people can be changed with dignity and not on the floor of a public restroom!

After school we took Theo to OT with Ms. Laura. While Theo was on the swing there was a little baby running around doing therapy with Ms. Jodi. Theo was very entertained by him!

That night I joined a State of the Union watch party with Mo. He's one of my favorite journalist right now! He even made these awesome bingo cards!



Thanks Mo! I appreciate the commentary!


Theo had six observable seizures today including ones that were 84 seconds, 93 seconds, and 61 seconds long.

Friday, March 8th:

Theo had another great day at school. He played Peek-A-Boo Barn and only had a few seizures.



After school we took Theo to PT with Ms. Cody. He was being a pill and wouldn't stop whining about the swing. We set timers for each activity, but all he wanted to do was swing. Theo managed to do all of his activities and then got to swing at the end of the session. 

Theo had five observable seizures today.

Weekend:

We didn't do much over the weekend... go figure. Theo went in his KidWalk and Gazelle and we worked on stretching his hips and legs.



On Saturday night I went to see Marry Poppins at the local high school with Ms. Laura and her girls. As always, the musical was great and students are all so talented! I don't like the musical stage version as much as the Disney movie, but I get that dancing with cartoon penguins or having laughing tea parties on the ceiling just wasn't going to happen on a stage! The best part of the whole musical was Step In Time! Everyone was tap dancing and singing and they were so energetic! 



And Sunday morning we sprung forward one hour.
[🤣🤣]

And Theo got a haircut on Sunday night! It was getting a little long which caused it to tangle in the back. It's much easier to maintain when it's short.



[Theo's always mad after a haircut]

Sunday, March 3, 2024

Vanity Install and James hits 40K!

Monday, February 26th:

After we got Theo on the bus our contractor came over to settle the next part of our bill and to talk about what we have left. We are SOOO close to being done which is great because I'm sick of writing checks. The one we gave him today was over $20,000. It actually makes me nauseated. 

Since Theo didn't have any therapy today he came home on the bus. He just loves the bus!

I received a call from Theo's speech therapist from school, Megan. She told me that the trial for the eye gaze speech device was ending this week and they have to send it back. But they are going to work on getting him one! They'll have to submit a letter to our insurance and get signed scripts from Theo's doctors. She asked if I thought our insurance would give them any problems. I said yes because they denied Theo's bath chair and activity chair. She said, "What insurance company denies a non-verbal kid a speech device?" and I said, "One that doesn't think a kid who can't hold up his own head doesn't need a bath chair because it's not 'medically necessary.'" This may be a fight, but we are going to try! Theo has been working so hard and using his device really well. And we know he is saying what he's thinking because he's constantly asking to go "bye, bye on the bus to see dada!" Oh this kid and his dad!

Theo had 12 observable seizures today.

Tuesday, February 27th:

Today was school picture day! After we got Theo in his wheelchair we fluffed up his hair and sent him off to school. Ms. Jess had a bunch of ideas on how to get Theo to smile for the picture so I wasn't too worried!

I got this hilarious text from Ms. Jess:


Theo is letting Ms. Jess know when he needs to go potty and at home he is doing the sign for diaper when he needs a change. I love all the communication! And I love that he knows that he's doing a great job! 

Ms. Jess also said that they had a lesson about President's Day in social studies and Theo actively participated during the whole lesson. He also ate some turkey food pouch and two yogurt melts!

After school we went to PT with Ms. Cody and then to The Legacy Ranch for his lessons with Sherman.

We knew severe weather was coming, but we were not worried since it wasn't supposed to be here until sundown. It hit 72 degrees today (of course that was a record) and you could feel the humidity rising right before the sun went down. It felt gross, like you could tell things were unstable and about to get wild.


We watched the news most of the evening. Luckily all 11 tornados touched down to our north. We got a crazy amount of lightning down here, but no rain and no tornados. The people to the north were not as luckily, but it looks like no one was injured and all the tornados were EF0s or EF1s.


Theo had eight observable seizures today.

Wednesday, February 28th:

Our beautiful vanity was delivered today! The contractor will be here tomorrow to install it and do a few other punch list items.


Theo had a half day so he was home by noon. He took a quick nap and then we headed to the dentist. Theo wasn't happy to be there or to have them looking in his mouth, but he did fine. The hygienist was able to get a good look around and even polished his teeth. Then Dr. Denise came in, took a look, and did his fluoride treatment. She said his teeth look great and she can't see any issues! YAY!


After the dentist, Theo had feeding/speech therapy with Ms. Jen. I was worried he would be too upset and protective of his mouth to participate, but he actually had three yogurt melts and was in a good mood.

Theo had seven observable seizures today.

Thursday, February 29th:

Today is Leap Day and Rare Diseases Day! We love our Zebra!


“When you hear the sound of hooves, think horses, not zebras.”

This phrase is taught to medical students throughout their training.

In medicine, the term “zebra” is used in reference to a rare disease or condition. Doctors are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses. Doctors learn to expect common conditions.

But many medical professionals seem to forget that “zebras” DO exist and so getting a diagnosis and treatment can be more difficult for sufferers of rare conditions. VOGM is considered a rare condition and so Theo is known as a medical zebra. Theo also has a long list (over 20) of medical diagnoses including an unidentified Neurocutaneous Disorder. They don't even have a name for what he has, so he is our Zebra!


After we got Theo on the bus I went to the dentist. My cleaning went great and the dentist said I have fantastic teeth 😊 I do have a small bump on the interior of my lip. It's been there for YEARS, but he told me that it won't go away on it's own and I should just have it removed. Apparently I subconsciously suck on my lip and over the years this bump of tissue formed. He said I could go see an oral surgeon, but he recommends an ENT. Works for me because I need to go see an ENT anyways.

Our contractor came over today to install the vanity, hang a mirror, install transition strips, and touch up the hardwood floor that they had to repurpose. 




The counter top guy will be here on Monday to take his measurements. After he gets the vanity stone cut and installed the plumbers will come back in to install the sinks and hook up all the plumbing.

We decided to move the "archaeology nook" to the corner of the dining room. There's not enough room for all of my books, so I decided to donate some of them.

While Theo and I were at OT Josh installed the shelves.




I think it's perfect!


Theo had six observable seizures today.

Friday, March 1st:

While Theo was at school Josh and I ran some errands. We bought a couple of fake plants for our new "archaeology nook." I like how they add some extra texture and color to the shelves.


After school I took Theo to PT while Josh had a conference call. I hope that means work will be starting up soon! I love having Josh home, but our bank account is going the wrong way very quickly!

Theo had six observable seizures today.

Weekend:

On Saturday we went to a used book store to donate some of my books. They said they didn't take text books, but I also had some regular reading books. The lady at the front desk said she didn't think people around here would be interested in archaeology, anthropology, or geology. Well, that's a shame. 

[Archaeology books]

[Anthropology books]

[Geology books]

We ended up dropping them off at a Goodwill. Maybe some lucky person will find them there.

That night we watched the Lakers vs Denver game and LeBron James became the first player to hi 40,000 points! Pretty insane!




The Lakers lost the game though. Congrats to Lebron! Now please focus on getting us to the Playoffs!


[Theo loves to cuddle his blanket]

We got rid of our satellite DIRECTV because it was getting too expensive. And now with all of the streaming services we are up around the same price again! AND we have to watch commercials 🤦‍♀️


We are in for a warm and erratic March!