Last Day of Kindergarten and VNS Activation

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.

Pneumonia... Third Time's a Charm, Right?

Monday, May 15th:

Happy birthday to my better half! Josh got his radio fixed, a new video game, and a pipeline book. He's the best!

Monday was also Ms. Jess' birthday! Theo got her a balloon and some chocolates!

After I put Theo on the bus I called the Pediatricians office to see if they could squeeze Theo in. They said they could see him at 11:15 AM, so I called the school and told them I was going to pick Theo up early.

I took Theo to the Pediatrician where he was diagnosed with pneumonia... again. Dr Dave called up Theo's pulmonologist, Dr Stewart, and we all chatted. I told her that we were doing respiratory therapy five times a day and we were keeping him off that left lung as much as we could. The doctors decided that we should head next door to the hospital to get an x-ray and some labs. They also prescribed three meds (two antibiotics and a steroid). We headed to the St Elizabeth where we got the x-ray and labs done. They only had to poke poor Theo twice to get all the bloodwork and then they did a virus swab, which he hated! Poor kid has had a lot of q-tips stuffed up his nose over the last few years. 

Dr Dave said that since we don't know what caused Theo's pneumonia we should keep him home. Ugh. Bummer. He didn't have a runny nose and he didn't have a fever, so you can imagine my surprise when we got the results from the nasal swab: Rhinovirus... again!

Bummer! This week was my selfish week and I had made appointments to get a  facial, a massage, a mani-pedi, and to donate blood. I cancelled some of them and rescheduled what I could for next week. Keeping Theo home and getting him healthy is my number 1 priority! The doctors said as long as we keep his oxygen levels up then he won't have to be admitted to the hospital.

Did you know that May 15th is also International Vascular Birthmarks Awareness Day?! Here are some super cute pictures of Theo when he was a baby. We love our colorful kid!

Here's our schedule for the Western Conference Finals! I can't believe we made it this far! Let's go Lakers!

The next day (Tuesday, May 16th) Theo and I had a Zoom with the Neurosurgery nurses at Lurie's. They just wanted to check in on Theo and to make sure his incisions are healing well. They look good to me! The glue is pretty much gone from the incision on his neck and there's still a lot on his other incision, but it'll peel off.

Oh Chicago and your weird weather!

That night we watched the first game of the WCF between the Lakers and Denver. We lost. Bummer.

Over the next few days we continued with all of Theo's respiratory therapy and made sure he was as upright as much as possible.

[I can't bring myself to cut his hair! It's just too cute!]

[Swing!]

I bought the Obi-Wan Kenobi Legacy Lightsaber for Theo's room. It's so awesome!

The only strange thing is that if you want to display it with the saber you have to change out the neck, so it will fit the universal saber part. Kinda strange. But I was just planning on displaying it without the saber. It looks better that way 🙂

[Thin neck as it should be]

[Thick neck]

Game 2 was closer, but we still lost.

We've been having Theo lay on his right side as much as possible, but his body isn't use to it. He got a little tender spot on his right hip and it made me worried since it's right on his hardware. It didn't seem to bother Theo and it went away a few hours later.

Theo thinks its funny to lean forward and then as far to the left as possible. I told him to lift his head up and be super strong, but he thought it was funny. So, I blocked him with a big pool noodle. He wasn't happy with me.

[Ignoring me]

Disney announced that they are shutting down the Galactic Starcruiser. It's essentially a $1200 per person per night interactive Star Wars experience. It was just too darn expensive. Who can afford that?! Clearly, no one. Bummer. I wanted to do it eventually if the prices dropped!

On Friday (May 19th) I took Theo back to see Dr Dave and he said Theo sounds much better. He told us to stop giving Theo the antibiotics (thank goodness!) and he was cleared to return to school and therapy next week. I'm glad we were able to avoid another hospital stay, but as long as the virus isn't too bad we should be able to take care of him at home.

My parents are heading to Hawaii for two weeks before our CA Family Reunion and they are flying out of Chicago, so they drove up and spent a few days with us. Josh and I were able to sneak away for our 9th Wedding Anniversary and have a nice dinner at Torchio! 

We got the whipped ricotta and tomato fig jam crostinis as an appetizer, then Josh got the spaghetti carbonara, and I got the shrimp and saffron risotto. Everything was delicious! We got the tiramisu for dessert and then ran over to Mastro's to get a couple butter cakes for my parents. 

It was some of the best pasta I've ever had! The pasta was fresh and cooked perfectly! I wish I could say we will be back, but there are so many other restaurants in Chicago that we need to try. BUT I highly recommend Torchio!

Happy early anniversary to us! Here's to many more!

After dinner we headed home to watch the Laker's lose their third game. No team has EVER come back from being down 0-3. EVER! I guess we'll see what happens on Monday.

On Sunday, May 21st, Josh and my dad went to Home Depot and bought a bunch of flowers. I told them not to get ferns this year (since they are too aggressive and took over all my pots last year) and they listened!

They look great! I'm excited to see them grow!

That night we had burgers and they were delicious!

Thanks mom and dad for hanging out with Theo so Josh and I could have a date night and thanks for dad and Josh for the beautiful flowers! We'll see you in two weeks in CA!

[I can totally relate!]

Theo slept a lot this week (it happens when you are sick), but he was still having about 6 observable seizures a day.