On Monday, October 11th, Theo and I headed down to Peoria. Our first stop was the ultrasound department, so Theo could get a scan of his abdomen.
We brought "puppy" and the iPad (with Poppy, Elsa, and Elmo) and Theo sat like a champ!
We then headed over to St Judes to see our friends there. The doctor did a physical exam of Theo and then told us she would call us with his ultrasound results.
For those that need a refresher, Theo is at a high risk for Hepatoblastomas (liver cancer) and Wilms tumors (kidney cancer) because of his Hemihyperplasia. He has to have screening (ultrasounds and physical exams) every three months until he is seven. He’s been getting ultrasounds done to look for cancers every three months since January 2020. He use to have his blood checked too, but they stopped doing that when he turned four.
The doctor called me a few hours after we got home and told me that his ultrasound was all clear!
That night we had some severe weather with SEVEN tornados touching down in Illinois (all of them downstate). We had some intense rain and wind, but no damage up here.
I love it when Theo wears his overalls. They are super tight and act like a compression vest. He can sit up so much better and he gets really proud!
[That look! "Mom, that's enough pictures for now."]
[My little artist]
[Working on food play]
On Wednesday, October 13th, I went and got my stitches out. The nurse said that my incision is healing nicely, but it can take up to a year to completely heal. That night we had a family FaceTime to go over the final details of our trip to Disney World in December. Planning a trip with 20 people is no joke! I think it'll all come together nicely and it seems like everyone is very excited!
On Thursday, October 14th, Theo had OT and then we headed back down to Peoria to see Dr. Steve.
[Sitting so nicely at OT]
Dr. Steve was very happy with how well Theo is wearing his glasses and he said his eyes are looking great! We will see him again in four months for another no-dilate check up.
[More art]
[I get daily notes from Theo's aid, Ms. Tammy. This one made me very happy!]
Theo likes to take his toys and "run away" to the hard wood floor. I usually don't let him if he takes a hard toy because he likes to slam it into the ground and make noise. Lately, he's been running away with puppy. I'll allow it!
Josh has been working 14 hour days, 6 days a week. It's been so hard on him and I feel awful! He usually gets home late, eats dinner, puts Theo to bed, and then goes into the basement to study until midnight. On Friday evening, October 15th, someone rang our doorbell. It was unusual, so I went to see who it was. It was the Schwan's guy who comes by every other Friday to sell Josh food. I told him Josh was still at work and I didn't know if he wanted to order anything. As he was walking back to his truck (he looked a little disappointed) I got a text from Josh that said, "Fudge bars." I realized that Josh must have seen the Schwan's guy on the RING doorbell, so I ran after the Schwan's guy and ask him if he had fudge bars. That seemed to cheer him up a bit! Yep! Our lives are really exciting!
I'm a part of a bunch of support groups on Facebook. I feel like it can get overwhelming, but the people in the groups are usually so nice and helpful. I recently found one for Port Wine Stains. I posted a few pictures of Theo and asked if anyone had seen PWS that were like his. A few had and mentioned that their kids had a mutation on the PIK3CA gene which causes Macrocephaly-Capillary Malformation (M-CM). I reached out to our Genetics team to see if he had been tested for this particular mutation. They said he had, BUT in many cases the mutation is mosaic - meaning only in some cells in the body. It's not uncommon in these conditions to have a normal test on blood cells, but to find mutation on another sample, like a skin biopsy. I asked our geneticist if it was worth it to do a biopsy to check for this mutation and she hasn't gotten back to me yet.
[Theo and his PWS when he was a baby. He still has his birthmarks, but they are much lighter now.]
October 15th is Infant and Pregnancy Loss Rememberance Day. Unfortunately we see this too often with our VOGM community. Just this last month we lost five beautiful children. My heart breaks for all those families.
This kid just can't stay still! He's always going off on an adventure!
On Sunday, October 17th, we went to Joliet to get some apple cider donuts from the Little Red Donut Truck! This truck apparently sells the best apple cider donuts, but they are hardly ever in our area. When I saw they were going to be just 20 minutes away in Joliet, I decided we needed to make the trip! I also told Theo's PT, Ms. Cody, about it and we ran into her and her family there too!
The donuts were hot, fresh, and delicious, BUT they weren't the best ever. That honor still goes to the County Line Road Orchard in Indiana and Iron Fruit Farms in Ohio. BUT they are the best that I've found so far in Illinois 🙂
After getting our donuts we headed to Costco. One of our neighbors is collecting items for a local women's shelter and Theo's school is collecting items to send to our troops. Between Costco and Target I think we got everything covered!
Please remember:
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