Here I am: Bloodwork, New Couch, and the End of the NFL Season

Monday, January 9th:

After a LONG Christmas break, Theo is FINALLY back at school! YAY! He was supposed to go back last Thursday (1/5), but he was at Lurie's for his EEG.

This is the best position that the Lakers have been in all season. 5th from the bottom!

Theo had a great first day back at school! He took one nap, but they said he was very alert and happy.

[Taking a nap in his Rifton Chair]

After school I took Theo to PT to see Ms. Cody. He was very tired, but knows he has to work hard so he can go on the swing.

I got a call from Oncology and Hematology (St Judes). They are concerned about Theo's current MCV levels. High MCV levels can indicate low B12, low folate, or hypothyroidism. I told them that we are heading to Ottawa tomorrow for a doctors appointment and we could get bloodwork done there.

[Lakers are dropping - 4th from the bottom]

Theo had three observable seizures today.

The next morning (Tuesday, January 10th), Josh, Theo, and I headed to Ottawa for Theo's annual appointment with his Pediatric Surgeon. Dr Robertson put in Theo's g-tube back in January 2019 and we see him once a year so he can check on the g-tube. He said Theo's tube looks good, but he may need to go up in size because the button is getting a little tight.

After seeing Dr Robertson, we headed next door to the St Elizabeth so Theo could get his blood drawn for Oncology and Hematology. Usually these nurses are great, but they really struggled today. They ended up poking Theo four times and at one point there were five people working on him. It was pretty awful.

[Four pokes with two in his hand]

After Theo got all his bandaids, we headed home for a quick nap. Later that afternoon I took Theo to Thrive for OT.

That night we weighed Theo and he is up to 57.6 lbs and he's 46" tall! HOW?! How is he still gaining weight?! Ugh! Good thing we are meeting with his dietitian tomorrow.

Theo had one observable seizure today.

Wednesday, January 11th:

Theo had a great day at school and rode the bus twice!

[New iPad stand]

While Theo was at school we received the final report from his latest EEG. The doctors concluded that Theo has right hemispheric slowing, multifocal interictal discharges (most predominant on the left), some slow spike wave activity in sleep, and numerous (up to 50 a day) tonic seizures with diffuse onset. They also suspect that Theo could have Lennox-Gastaut Syndrome, which could explain why the seizures are not able to be controlled with medication and why the seizures are different then they were when he had his last multi-day EEG in February 2022. I sent his Epilepsy Specialist a message and asked her if we need to keep him on medication since he is still having so many seizures a day. If the medications aren't stopping the seizures and they are causing his regression - we should be able to wean him off of them, right? I don't know. That's why I asked the specialist. Hopefully she will get back to me soon.

Ms. Andrea (teachers aid) made Theo and each of the kids in his class a blanket for Christmas! How sweet! She's very talented!

After school Ms Jen came over for feeding/speech therapy and we Zoomed with Ms. Jeannine. I updated them on everything that's been going on and then informed Ms Jeannine that Theo had gained weight again! It doesn't make sense, but we need to cut Theo's calories again.

Theo had four observable seizures today.

The next morning (Thursday, January 12th) we put Theo on the bus and then I went into the basement to workout. After getting ready, Josh and I went on a lunch date to Sovereign. The food was fine, but it was nice to just hang out with Josh without any distractions. We then swung by Milette's Cakes to get some cupcakes 😋

After Kindergarten I took Theo to OT.

Theo had one observable seizure today.

Friday, January 13th:

After we sent Theo off to school and I went for a run, Josh and I drove over to Orland Park to go shopping. First we swung by Menards to look at chandeliers and then Home Depot to look at carpet samples.

The only carpet we have in our home is in our bedrooms. Even so, it's going to be expensive to replace it all. We aren't in a hurry, but I'd love to go with one of these patterns:

Next, we went to Darvin to look at couches. There are SOOOO many couches and they are all different. Some are super large, some are overly soft, and some have strange arm rest.

[WAAAAYY too big!]

[Our second choice - it was a little too soft]

After sitting on tons of different couches, we finally found one that is firm (but not hard) with nice arm rest. They didn't have the color we wanted in stock, so we will have to wait 8 weeks for it to be made and delivered. That's fine. We aren't in a huge hurry.

After shopping we went to get Theo from school and then took him to PT.

While Theo was at PT I got a message from Oncology and Hematology. They said that all of Theo's blood test came back normal (his B12 was actually very high). So they don't know what is causing his high MCV levels, but they want him to get some more bloodwork done. I asked them if we could wait until February 6th when he is under anesthesia for his MRI and PET scan, and they said that was fine.

Theo had two observable seizure today.

[Third from the bottom... UGH!]