This was a big week for us! Theo got his VNS turned on and he graduated from Kindergarten!
Monday, May 22nd:
Josh took my parents to the airport early in the morning so they could catch their flight to Hawaii. They'll be spending two weeks there before joining us all in CA for our family reunion! Thanks for babysitting Theo and planting our beautiful flowers! We'll see you soon!
I got Theo on the bus and then headed over to REI to pick up my bikes. They were able to fix them pretty easily and it only cost $16! YAY!
After school I took Theo to PT where he worked hard.
That night we watched my Lakers get swept by Denver. They started the season 2-10, but made it all the way to the Western Conference Finals. Pretty impressive for a not so impressive season.
Theo had eight seizures today.
The next morning, May 23rd, Josh headed off to work (he's been leaving around 5:45 AM), Theo went to school, and I listened in on our HOA meeting.
Theo had a great day at school. Ms Jess sent me a video and it looked like he had a lot of fun at P.E. throwing the ball around!
That afternoon I took Theo to OT and then after Josh got home I went and got a two hour massage in town. It was amazing!
Theo had 11 seizures today.
Wednesday, May 24th:
Happy Anniversary to us! Today is our nine year wedding anniversary! We spent today at Lurie's with Theo getting his VNS turned on, but next year we will be in Iceland!
Josh reached out to our tour guide from Brussels and she is going to take us on a 10 day Iceland adventure! We are going to stay in this cute cottage, Joyce will rent a Jeep and drive us around, and we'll even go on a helicopter ride! I can't wait!
In the late morning, Theo and I headed into Chicago. Josh was driving in from Elmhurst and met us there.
We met with Amy Tenet with Neuromodulation and Suz a representative from the VNS company. They told us about the VNS, how it works, how to use the magnet, when to use the magnet, etc.
The VNS works in three different ways:
Standard Mode
Detect & Response
Magnet Mode
The Standard Mode is set so that the VNS will deliver "therapy" for 30 seconds and then rest for 3 minutes. This will repeat 24/7. This mode will help to prevent seizures from happening.
Detect & Response is activated when Theo's heart rate is elevated. This will deliver therapy for 60 seconds and it will attempt to stop seizures before they even start.
And finally, magnet mode is for on-demand therapy delivery. If we see Theo have a seizure we wave the magnet in front of the VNS and that will activate it for 60 seconds. This will hopefully stop future seizures since Theo's seizures are short, but they tend to cluster. We were told originally that we wouldn't be using the magnets with the VNS because they are usually used for people who have clonic-tonic grand mal seizures, but since Theo's seizures cluster Amy believes he will benefit from Magnet Mode.
We made sure Theo could still play with his toys that had magnets and they said that would be fine. The magnet that activates the VNS is very strong, so the VNS will not be affected by any of the small magnets that his toys have. We also got a new seizure action plan (SAP) for school and asked about training for the teachers, paras, CNA, and RN at Theo's school. Suz said that she can come to the school or train via Zoom.
Amy had us take a picture of the VNS increase schedule. The VNS is programed to increase in intensity every two weeks. She said that kids can become irritable or sleepy or have mood changes when this happens, so it's good for us to be aware of when the change will occur.
We will come back in September for another Neuromodulation clinic. Amy will scan the VNS and will be able to see how often it was activated due to the magnet or due to heart rate increase. Before we left Suz gave Theo this bear named Vinny. He also has a VNS (it's in a pocket in his shirt). We love him!
We then met up with Daisy and Meghan the nurses from Neurosurgery. They checked his incisions and said everything looks good!
Josh headed back to work and Theo and I drove home in heavy traffic. It took us about 2 hours, but we made it home just before feeding therapy with Ms. Jen.
[Gotta get in that nap before therapy]
That night Josh and I opened our anniversary gifts. Josh has been getting me "traditional" wedding anniversary gifts and the 9th year gift it pottery. Josh got me this card and these ceramic flowers. They are so pretty!
Just gotta find a place to hang them!
I got Josh a video game. It's not as fun as the traditional gifts he gets me, but that's what he wanted!
That night I sent a message to Theo's Epilepsy Specialist asking here when we can start weaning Theo off of Clobazam. The wean off the Clonazepam went well, so we are hoping for the same with the Clobazam, but Theo is on a much higher dose and side effects are expected.
Theo had five seizures today.
Thursday, May 25th:
The next morning I took Theo to school, so I could do some VNS training at school. I showed everyone how to use the magnet and when to use it. They are going to have Suz come out in August before school starts to do more in person training for everyone.
After training I went to get my allergy shots and then picked up a bunch of bundtinis and delivered them to Theo's school as an end of the school year gift.
That night I made some pudding with almond milk for Theo.
Theo had 13 seizures today.
HAPPY LAST DAY OF KINDERGARTEN!
I packed Theo's bags and sent him off to school before I headed into Shorewood to get my eyebrows waxed and my hair cut.
First Day of Kindergarten:
Last Day of Kindergarten:
Theo has changed so much! He's grown 3 inches and gained 6 lbs just this school year!
[Apparently Theo liked my chocolate pudding!]
Thanks Ms. Jess for taking care of Theo all year! He loves you so much and we are excited to had you as his CNA again next year!
I'm also excited for Theo to continue in his multi-needs class with Ms. Kate. The class had been so good for him!
After school I took Theo to PT with Ms. Becca. They worked on laying on his right side and he thought the crinkle blanket was funny!
Josh's crew started really digging his week and it's going well so far. He's not used to working in a neighborhood just feet from million dollar homes, but they'll do great!
Theo had ten seizures today.
Saturday, May 27th:
The next morning I went and got a lymphatic massage. It was fantastic! She really focused on my neck by helping my lymph nodes drain.
After my massage we went to send off a package to CA. We are sending Theo's food, syringes, etc ahead so we don't have to fly with everything.
We the went to Home Depot to get a few more flowers and a new faucet for the kitchen.
[Trying to get Theo used to his new headphones]
[We got three hanging plants and one vase to put by the front door]
We were generously gifted a bathchair from someone in one of our FB groups. It showed up and I think it's going to work out great!
[Now we don't have to bend over so far to give Theo a bath]
[Installing the new faucet]
Theo had six seizures today.
On Sunday, May 28th, we just hung out at home and BBQd some brats for dinner! Theo had one seizure today.
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