Neuromodulation and New AFOs

Monday, September 11th:

Josh's job in Elmhurst is wrapping up, so they moved him to a job in Matteson. NICOR is building a new station out there and he is the Chief Inspector on that job.

[Lots of material]

Theo had a great day at school and since he doesn't have therapy anymore on Mondays, he rode the bus home.

Theo had four observable seizures today.

Tuesday, September 12th:

I put Theo on the bus, Josh headed off to work, and then I went and got my allergy shots. 

Theo had another great day at school. He is more awake and is participating in all the activities, BUT he is still struggling with eating. 

After school I took him to PT at High Hopes. It was supposed to be a co-treat with Ms Laura (OT), but she had to cancel. Theo was sad during the whole session. I think he was really bummed out Ms. Laura wasn't there!

Theo had four observable seizures today.

Wednesday, September 13th:

The next morning we got ready extra early and left at 6:45 AM, so we wouldn't be late for Theo's Neuromodulation appointment at Lurie's which started at 9:00 AM.

[Traffic was SOOO bad]

It was a huge mess getting into Chicago. Theo's doesn't like it when the van stops, so he was pretty upset for the last hour.

We got to the hospital at 8:45 AM and made it to our appointment on time. We saw the Neuromodulation nurse, Amy Tenet, and another nurse from Epilepsy. They scanned Theo's VNS and pulled up all the information on their iPad. We compared notes and were pleased to learn that when we swipe the magnet it does register. So, that's good news! Those swipes send up therapy for 1 minute at a higher intensity than his regular 3 minute therapy intervals. So the swipe will definitely help with those clusters. They increased the frequency of Theo's VNS. It will now go off automatically at 2 minute intervals (down from 3 minutes) for 30 seconds. They are not going to increase the intensity at this time, just the frequency. 

They prescribed nasal spray (Valtoco) as an emergency med to replace the rectal gel medication (diazepam). Luckily, we've never had to use the emergency rectal gel, but the nasal spray will be very convenient if we ever need to use it.

We are going to hold off on adding or weaning him off of any more medications right now. We will revisit that when we go back to see them in 3-4 months. They were really happy with his VNS stats and are so glad that he is more awake at school!

My parents are staying at our 4 bedroom rental house right now with my mom's sibling's and spouses. But they stopped by the condo to do a few things before my next guest's arrive. Hi dad!

Theo had no observable seizures today

Thursday, September 14th:

Theo went back to school today and he was very excited when the bus pulled up! 

He had a pretty good day, but his stomach was upset, so he was a little crabby.

I picked him up early from school so we could go get his new AFOs and SMOs. They fit great and the tech even make sure they fit in Theo's current shoes. 

[Look how much he's grown!]

Later that night I got a call from my ex-SIL, Ally. She said she was supposed to be going on a trip to Boston with a friend, but her friend canceled on her at the last minute. She asked me if I wanted to go and I said "YES!" Of course! My parents were already planning on coming up that week to visit, so I called them and asked them to come up a few days earlier. They said that works! YAY! I bought my tickets and I'll meet Ally in Boston on September 29th! I can't wait!

Theo had six observable seizures today.

Friday, September 15th:

Josh headed off to work, I put Theo on the bus, and then I headed to the Red Cross to donate blood. I signed up for a regular donation, but they asked me if I would be okay doing a "Power Red Donation." I said that was fine! I have O Positive blood which is the most common blood type and over 80% of the population has a positive blood type so they can receive O Positive blood. 

The process only takes about 20 minutes longer than a regular donation and I am able to donate twice the amount. They take 1 pint of my blood and a machine separates out the platelets and plasma. The machine then returns the platelets, plasma, and some saline to me. Once that is completed they take another pint and repeat the process. I felt fine while I was donating, but I got cold when the platelets, plasma, and saline were going into my arm. The nurse said that was common. After I was done I had a few Oreos and drank some water. 

Since I did a double donation I can't donate again for 112 days. 

I made a quick trip to Costco and then went home to work on an itinerary for our New England trip. Ally has never been to New England, so I told her I would write out an itinerary based on the road trip that Josh and I did back in 2016. I got super distracted and didn't drink enough water or eat lunch. When it was time to go get Theo I grabbed a protein shake and ran out the door.

Theo had another good, but crabby day at school. Ms Jess thought it could be from his AFO's being too tight, so she took them off for a little bit. She said he didn't cheer up right away, but he finally felt better after sitting in his rocking chair and going poop! Constipation is awful!

Theo had six observable seizures today.

I started to get a headache around dinner time and it got worse over the next hour. It felt like a migraine was coming (I get them once or twice a year), but I couldn't take any Excedrin since I had donated blood that morning. Ugh! I took Tylenol instead and that didn't help. It ended up being a super bad migraine and I felt awful. Luckily, I was able to fall asleep and it was mostly gone when I woke up the next morning. I don't know if it was triggered by the blood donation or if it was just a coincidence, but either way I need to remember to eat more, drink more water, and take an iron supplement the next time I donate.

The Weekend:

Josh had to work in the morning on Saturday, but he was able to be home in the early afternoon to help me with Theo. I was still feeling tired from my blood donation and I wasn't supposed to do any heavy lifting (Theo is 60 lbs) for 48 hours.

We had a rainy day on Sunday which was fine since we had football to watch! It was nice to be able to watch the Packers and Chargers games at the same time!

Unfortunately the Chargers lost in OT and we are now 0-2. The Packers had a chance to win their game at the end during a final charge but, they couldn't pull it off. They are now 1-1. Bummer!

Theo had three observable seizures on Saturday and three on Sunday.

Horseback Riding Therapy Assessment

This week we were both brave and cautious.

Monday, September 4th: Happy Labor Day!

We had a nice three day weekend with Josh and it was fantastic! It's always nice when he's home during the day. We got our piano tuned too.

Theo had three observable seizures today.

Tuesday, September 5th:

Theo went back to school today and I went and got my allergy shots. 

Josh and I picked Theo up early from school, so he could go get his hearing tested at the INI in Peoria. Theo was NOT cooperating and kept screaming when the audiologist tried to put the little probes in his ears. We finally laid him on the ground and put on his videos. He calmed down enough for them to get a few readings.

The said that they couldn't get a good reading on his right ear. They think it's because he still has a small hole in his ear drum from where his tube had been. The audiologist said they aren't concerned and we will see them again next year!

[Elsa ❤️]

Right as we were leaving the INI I found out that quite a few of the students and aids in Theo's class got sick over the weekend and they tested positive for COVID today. Bummer!

I decided it would be best to keep Theo home for the rest of the week. He was definitely exposed on Friday, so if he was sick I wanted to keep him home so we didn't spread it to others AND so I could do his respiratory therapy every four hours. 

We were hopeful that Theo dodged COVID again, but I didn't want to take any chances until he had a COVID test.

Theo had three observable seizures today.

Wednesday, September 6th: 

Theo and I stayed at home and did respiratory therapy every four hours. He was coughing a bit in the morning. Hopefully that is just allergies 🤞🏻🤞🏻

That afternoon we Zoomed with Ms Jen and Ms Jeannine. After Josh got home we gave Theo a COVID test and he was negative. YAY!

Theo had three observable seizures today.

Thursday, September 7th: 

The next morning I called Theo's Pediatrician to see if I should bring him in for a COVID test just in case the at home test wasn't super accurate. They said I could bring him in that afternoon and they would check him out and give him a test.

Theo was coughing a bit in the morning, but he didn't cough at all in the afternoon (just like yesterday).

In the late afternoon we headed to Ottawa. The Pediatrician check him out and she said his lungs sounded really good, even his lower left lobe. She then gave him a nose swab to test for COVID, RSV, and the flu. He was negative for all of them. YAY!

Theo had two observable seizures today.

Friday, September 8th: 

I kept Theo home from school for one more day - just to be extra super safe.

[Standing up super strong with his jeans on!]

That afternoon we took Theo to The Legacy Ranch for his horseback riding therapy assessment with Ms. Kate and Sherman the Tank.

Theo was very nervous when we got to the ranch since he was unfamiliar with the new location. We first met with Ms. Kate and we went over Theo's medical history and what are are hoping to get out of therapy. Ms. Kate then told us that Theo would be going for a ride on Sherman the Tank! He was fitted for a helmet and then we went to the indoor arena where Theo met Sherman.

We rolled Theo up a ramp and helped get him onto Sherman. Theo was very upset, but everyone else (including Sherman) stayed calm. 

They took Theo for a few laps around the arena. When Theo got tired Ms. Kate had Sherman stop and then Theo was able to lay down.

On their final lap around the arena, Theo FINALLY calmed down. He relaxed, stopped arching his back, and even smiled for a second. 

After we got Theo back in his wheelchair we asked Ms. Kate her thoughts. She thinks that Theo will greatly benefit from horseback riding therapy and we agreed! Not only will it give him a great stretch in his hips (his Orthopedic Surgeon will be happy about that) it will also help him gain strength in his core and neck. We are going to sign him up for an eight week session. I think it'll still take time for him to get used to Sherman, but it'll be so good for him!

Theo had three observable seizures today

Weekend:

Theo likes to leave his blue mat and lay next to the fan tower. I put his squeezie there to deter him, but it didn't work. Such a stinker!

Josh and I have been on new diets since July 1st. I guess that's not saying much since I'm always on and off diets 🤦‍♀️ Anyways! Eating healthy tends not to be very glamorous. But I thought my salad looked good (minus the plastic bowl), so I took a picture. Enjoy!

I got a new book! 99% of my books are on my kindle, so I rarely get to enjoy that "new book smell!" 

On Sunday we watched the Chargers and Packers games! Thank goodness for NFL Sunday Ticket!

Theo had three observable seizures on Saturday and four on Sunday.

Theo Dermatologist, Pocketing, and Flowers!

We've been watching Hurricane Idalia pretty closely. Luckily, for us, it looks like there should be minimal impact to Orlando. I hope everyone in the Big Bend stays safe!

Monday, August 28th:

Josh's project in Elmurst is going to be reaching a climax this week. They are going to be working long hours, so they can do hot tie-ins and get gas on the line by the end of the month. Josh left for work before Theo got up at 5:30 PM and he'll be home after Theo goes to bed. 

Theo had a great day at school. Ms. Jess said he worked really hard and even took a nice power nap.

After school I took Theo to a dermatology appointment. He has rough, bumpy skin on his legs and arms. The dermatologist said it was just an overgrowth of keratin and he should grow out of it. But she gave us some lotion that will also help.

Jess' parents had a bunch of extra peppers, so they gave them to us! Josh is very excited to try the ghost peppers, but I won't let him cook them in the house!

The had nine observable seizures today.

Tuesday, August 29th:

Happy birthday Andie! 

After I put Theo on the bus I went to run a bunch of errands: eyebrows waxed, allergy shots, Costco, and Jewel Osco. By the time I got home and unloaded the car I had to leave again to go pick up Theo.

He had a great PT/OT session at High Hopes! 

Josh worked late due to hot tie-ins. Its dangerous, but pretty cool to see!

[A lot of people were there to observe]

Theo has figured out that he can pull the tubes out of the machine. Such a stinker!

Theo had six observable seizures today.

Wednesday, August 30th:

I put Theo on the bus and then he showed up back at home just a few hours later due to early-release-day. Luckily, when he got home he took a good nap and was ready for Ms. Jen when she showed up a few hours later.

We decided to try lemon pudding with coconut cool whip today. Theo has been really good about taking big bites, but over the last few days he started "pocketing" (aka "chipmunking"). He stores food in his cheeks and won't swallow it. We've been stroking his neck and rubbing his cheeks, but he is being super stubborn. 

Theo had two observable seizures today.

Thursday, August 31st:

Happy birthday mom! I hope you like all the pictures and frames we got you!

After I sent Theo to school I watered the plants and then headed north to my yearly Allergist appointment.

The flowers got off to a rough start, but most of them were able to recover nicely. A few of the flowers in the smaller pots didn't make it, but I'm pretty sure it was because of the five baby bunnies that are living in our yard.

They are such a pest, but they are SOOOO cute!

My yearly meeting with my allergy doctor went great! She is going to increase my shot dose again and I need to keep coming in once a week. She also told me to start taking Xyzal and she prescribed a rescue inhaler for when my chest gets tight. It only happened once last year during the harvest, but it was a little uncomfortable. The inhaler should help if that happens again. 

After the allergist I took Theo to OT. He was so excited when we got there! He just loves Ms. Laura and he loves to swing!

Theo had 11 observable seizures today.

Friday, September 1st:

Theo had another great day at school, but Ms. Jess said he is still pocketing his food. Ugh!

After school we took Theo to Ms. Becca's house so he could swim with Ms. Cody. He had a great time and was sad when he had to get out of the pool.

Theo had 16 observable seizures today.

Weekend:

Josh had off Saturday, Sunday, and Monday for Labor Day! A three day weekend in his line of work is almost unheard of! 

We went on a family outing to Costco and then we all got our flu shots. 

Theo had four observable seizures on Saturday and three on Sunday.

[I'm so excited for Tommy's new series!]

[I think this would look awesome on my van!]