I got home late on Monday night from my trip to Utah. I started my laundry and then made sure all the info in Theo's book was up to date for our visit with the Neurovascular Team at Lurie's.
Tuesday, May 21st:
Theo, Josh, and I made the long drive into downtown Chicago so we could meet with a Neurovascular Team at Lurie's. We saw Dr. Megan Barry (Neurology), and Dr. Ali Shaibani (Interventional Radiology), and their nurses. We talked about Theo and his history with his VOGM, port wine stains, and genetic testing. I told them that we are more than happy to be part of studies that will further their understanding of people with these vascular malformations.
Dr. Ali Shaibani said he would like to do an MRI and angiogram in May 2026. He also said they would reach out to OSF St Francis and get the rest of Theo’s angiogram and MRI imaging results. Dr. Megan Barry asked us about our history with genetics. I told her Theo had a Microarray and a 16 gene PWS panel done at birth. Josh, Theo, and I also had Whole Exome Sequencing (WES) done and they rerun that test every year. So far they have not found anything to explain Theo's conditions.
We talked about additional testing like the Whole Genome Sequencing (WGS), but that is expensive and if Theo's mutations are mosaic then they may not show up in the blood draw. In order to examine the mutated genes they will have to do a biopsy of his PWS. Once the biopsy is done they can run it for PIK3CA gene mutation, which is associated with Macrocephaly-capillary malformation (M-CM) and they can do a Vascular Anomalies (VANseq 47 genes) Expanded Sequencing Panel. Dr Barry said that the Whole Exam Sequencing probably covered the genes in the Vascular Anomalies Panel, but she she would reach out to Genetics at Lurie’s to see what they think and if they need anything from us.
After our meeting they had a research assistant (Sarah Rose) come and talk to us. We signed paperwork so Theo can participate in two studies about vascular malformations:
-Defining the Genetic Pathophysiology of Pediatric Cerebrovascular Malformations
-International Pediatric Stroke Study (IPSS): Towards the Establishment of Standards of Practice and the Initiation of Multi-Center, Multi-National Clinical Trials for Neonates and Children with Stroke
They aren't in a hurry to do the biopsy or get blood from Theo, so they'll probably just do that while he is under anesthesia in May 2026.
After our hospital visit I took Theo to PT/OT and then to see Sherman at The Legacy Ranch.
Sherman started galloping for just a few seconds. He likes to be in charge and is very stubborn. The ladies held onto Theo and there was no risk of him getting hurt. Theo actually thought it was pretty funny!
[I made a new friend]
Josh had to go into work and watch an overnight hydro test. He had already been up all day and his drive to and from work is 75 minutes. I know he doesn't need a lot of sleep to function, BUT working 37 hours over two days is a bit crazy.
Theo had five observable seizures today.
Wednesday, May 22nd:
The next morning Theo headed off to school on the bus and I called Josh to check on him. He had been up all night and now the crews were there and everyone needed his attention. Ugh. It's nice to be needed, but he needs sleep!
[Theo playing with shaving cream]
Theo's art:
After school Theo had feeding/speech with Ms. Jen at our house. While she was here Josh got home. He was so tired, but he managed to stay awake until 7:00 PM. I knew he was exhausted when he went to bed BEFORE Theo.
Theo had 12 observable seizures today including one that was 130 seconds long.
Thursday, May 23rd:
Josh got up at 5:00 AM refreshed and ready to head back to work! We are so grateful for him and I am glad that he was safe during his long work day.
Theo headed to school where they had a Water Field Day!
[All ready in his bathing suit and sandals]
[Too cool!]
Ms. Jess said he had a great time! And all the kids vote to dunk Ms. Jess in the dunk tank! Those stinkers!
After school I took Theo to OT with Ms. Laura.
Theo had six observable seizures today.
Friday, May 24th:
Today is Theo's last day of first grade!
[First day vs last day]
Thank you so much to this amazing group of people! They take such great care of Theo and all the other kids in his class!
I was told that Theo's best friend will not be coming back to this class next year. He is moving on to a program that will challenge him a bit more. We will miss him, but we are so glad he is able to move onto another program.
["Best Musician"]
[Such a sweet smile]
While Theo was at school I went to donate blood. I did a Power Red donation again. It takes a bit longer, but that's fine. I know not everyone can donate, but if you can and are willing to please PLEASE donate.
After school I took Theo to PT with Ms. Cody. Ms. Becca was there too and she was able to add a few touches to Theo's wheelchair, which should help him sit up straighter.
Theo had nine observable seizures today.
May 24th was also our 10th Wedding Anniversary! Can you believe it?! 10 years of putting up with me (officially)! 😁
Josh has gotten me "traditional" gifts every year:
[1st - Paper]
[2nd - Cotton]
[3rd - Leather]
[4th - Fruit/Flowers]
[5th - Wood]
[6th - Iron]
[7th - Copper]
[8th - Bronze]
[9th - Pottery]
[10th - Aluminum]
We celebrated our 10th anniversary by going to Iceland! Did you know that Iceland is a major producer of aluminum? What a great coincidence since aluminum is the traditional gift for the 10th anniversary!
[On top of a glacier]
[Inside the glacier in a heart shaped tunnel]
[Our wedding]
Thanks for going on this crazy adventure with me! I love you!
Long Weekend:
Josh had to work on Saturday and on Sunday we had thunderstorms.
[Super strong!]
Memorial Day:
Today we honor those who died to protect our freedom. Thank you.
I finished reading "The Women" by Kristin Hannah last night. The book is a story about the women who served as nurses during the Vietnam war. Over 58,000 of our soldiers died during that war. It's so tragic.
.png)
