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!
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!
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