Monday, May 8th:
Happy birthday, Brodee! Today Brodee turns 12! Can you believe it?! We got him a Texas Rangers hat and Air Jordan 4 Retro Red Thunder shoes. The shoes were hard to find and Josh now has a "Shoe Guy" in Chicago who can help him find rare shoes 🙂 We are so excited to see Brodee in June!
I sent a few pictures of Theo's VNS incisions to Neurosurgery. The incision by his armpit has a small bruise under it and he has some petechiae on his chest. They reviewed the photos and said everything looks good! Theo has been coughing since Friday, so I decided to keep him home today so we could do extra respiratory therapy with him.
[He was NOT in the mood to cuddle with Rollin Rovee]
That afternoon we went to PT and saw Ms Jeannine (Dietitian) too. We haven't see her in person since the pandemic started in March 2020. We Zoom with her every other week, but seeing her in person was nice. Theo continues to grow and we all continue to be amazed because he is not consuming that many calories. But we are all hoping that he will become more active as we wean him off the seizure meds.
[Another big win!]
Tuesday, May 9th:
It's Teacher Appreciation Week! We love all of Theo's therapist, teachers, and aids! I got them gift cards to The Hive. I hope they all go buy some nice treats!
Today was the Grundy County Special Education Cooperative (GCSEC) Baseball Day! Ms Jess said they have been practicing for weeks now and the kids are all really excited! We sent Theo to school where they put on their matching shirts, took pictures, and then road the bus to Miracle League Field in Joliet.
[Angels shirt and a Brewers hat]
Josh and I drove over and met them all there! We also saw Theo's bus driver, his bus aid, and his old bus driver from preschool! We got hamburgers and then waited for the kids game to start.
[So many people!]
All the students gathered on the field for a group picture and then Theo's game started!
They lined the kids up, put out a small tee, and placed a wiffle ball on the tee. Each kid stepped or rolled up to the plate and took a swing! Once they hit the ball they ran or rolled to first plate!
[Great job Theo and Ms Jess!]
The kids were so excited to hear all the adults and other students cheering for them! It was adorable! Once the kids got back to home plate they could either get back in line and go again or they could be all done. Theo and Ms Jess went around the bases a few times and then he was ready to go home for a nap. Thanks Ms. Jess for running the bases with him!
We took Theo home, put him down for a nap, and then went to OT that afternoon.
Wednesday, May 10th:
After talking to Theo's PTs and OTs, we all decided it would be best to start sending Theo to school in his MyGo Activity Chair. It offers a lot more support than his stroller wheelchair does and they are worried about his posture. We don't want to cause respiratory or spinal issues.
[All ready to get on the bus in his MyGo!]
While Theo was at school we had an IEP meeting with his district, teacher, principal, and therapists. Everyone is hopefully that Theo will start to move forward once we get the VNS turned on and the seizure meds reduced. Until then we are in a holding position.
Everything around here is blooming! It's so pretty, but our allergies are awful! Well, Theo and Josh's allergies are awful, I'm not doing too bad. I have my two years worth of allergy therapy to thank for that!
Thursday, May 11th:
We sent Theo off to school and then I went to get my allergy shots and made a quick trip to Target.
[Looks like we are going to have to make a trip to Lambeau Field this year!]
Friday, May 12th:
Theo is usually pretty tired by the end of the week, but I guess he was extra tired at school today.
Josh and I went to REI to take in both of my bikes. The road bike was clearly having issues and Josh said the hybrid bike wasn't shifting correctly. The guys at the bike shop said it should be an easy fix and put them on the schedule for Monday.
That evening we had a meeting with our NVC partners. Looks like the FL house is doing well! That's always good to hear!
Brodee went to his first school dance! He wore his new shoes and hat! Sara said he had a great time and looked so grownup!
The Lakers closed out their series with the Warriors tonight! We are heading to the Western Conference Finals as a Play-In seed! That is huge!
We have two bird houses on our fence. The one outside our family room window was occupied by doves, but this one on the other side of the house is occupied by Robbins. I'm glad they found a nice place to start their family!
HAPPY MOTHER'S DAY!
My mom is the best! Thanks for traveling the world with me!
Theo made me this adorable card at school!
Theo and Josh got me this cute card and also a box of chocolates!
I also booked myself a two hour massage and a mani-pedi 🙂
Theo is weaned off of his Clonazepam! 1 down, 3 to go! I'm hoping the Clobazam (Onfi) will be the next one to go. I'll talk to Theo's doctor on the 24th.
We got Theo this medical bracelet:
Theo is still having about 6-8 observable seizures a day. Hopefully that will start to change once the VNS is turned on!
Theo is STILL coughing. He started last Friday and it's not getting worse or better. I'm 100% sure if we didn't have our arsenal of respiratory devices that Theo would be back in the hospital right now. I am going to call his PCP tomorrow and see if they want to do an x-ray. Theo's oxygen levels are still in the mid 90s, but we'll see what he says.
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