Happy 5th birthday, Theo! I love this super strong, super silly, and super sweet boy!
Ms Jess (Theo's CNA) stopped by to bring Theo a few presents and say hi! While she was here we showed her how to feed Theo and answered any other questions that she had. Even though she was with Theo at preschool last year, she never was able to feed him or give him water. But at kindergarten she will be able to.
Ms. Becca also came by that afternoon for PT and to bring another gift.
Theo also got a couple of Star Wars books from my parents and a card from cousins Porter and Kenna! Thanks everyone for thinking of Theo on his special day.
And Josh and I got him some new Tonies! He just LOVES music!
Ms Becca always makes Theo laugh with his pompom and the teeth brushing song!
Theo had two seizures today.
Tuesday, August 9th, was my birthday! Josh bought me an awesome massager and I bought myself a Shakti mat.
I won't show you my whole back, but the Shakti mat is covered with thousands of small spikes and it leaves you very red after you use it. The first few minutes REALLY hurt, but if you can breathe through it then the next 15 minutes are pretty great and can be quite calming!
Thanks Josh and Theo for spoiling me!
Theo had two seizures today.
The next day (August 10th), Josh, Theo, and I headed down to Peoria. First we went and saw the Developmental Specialist at Easter Seals.
We haven't seen her since right before Theo's EEG and hospitalization for seizures, so we had a lot to catch up on. She sent in new orders for AFOs and SMOs, gave us information about waivers and the PUNS list, sent a referral to Nu Motion for a in-home seating system (our current one is 12 years old), and sent a referral to Actistyle for diapers (we keep trying to get waivers so we can qualify to get diapers, but we keep getting denied, hopefully this works). She also examined Theo and was happy to see how well his hips were doing and she commented on how much more flexible he is.
Next, we went and saw Dr. Sinha with Neurology. Theo slept in his wheelchair during the appointment, which was great because it gave us a chance to talk to the doctor AND we could show Dr Sinha how Theo is reacting to his medications. Theo's seizures have gone down significantly (25 a day to 1-3 a day) since he started on medication, but the meds just make him so tired. It's hard for him to function and all he wants to do is lay on the floor or sleep. Dr. Sinha told us that Theo is almost maxed out on all of his seizure meds (based on weight), except for one. He wants us to increase the dose of the Clobazam twice over the next week. If Theo continues to be sleepy then we can send Dr Sinha a message and we can start looking into other options. It's great that Theo's seizures have decreased so much, but he can function and have a good quality of life if all he is able to do is sleep.
We also talked about Vagus Nerve Stimulation (VNS) surgery. I've seen a lot of kids on my Epilepsy FB support group that have has this procedure done and it had been great for them. Dr. Sinha said that if the medications aren't able to stop Theo's seizures then he would be a candidate for VNS. We will have to see an Epilepsy Specialist at another hospital for a second opinion, but if they approve him then the surgery can be done at our hospital by Theo's Neurosurgeon. It sounds like a great option and I am excited to learn more about it. These medications are just so hard on his little body. It would be nice if we were able to control the seizures with the VNS and we could wean him off of his four seizure meds.
After seeing the Neurologist we headed back home. Theo did really well in the car today because he slept most of the time!
Theo had one seizure today.
The next day (Thursday, August 11th) Theo and I headed back down to Peoria so we could see Dr. Steve the Ophthalmologist. I downloaded a couple movies for Theo to watch during the drive and he did great (again, he slept more of the time).
Theo had to get his eyes dilated, so I knew it would be a longer appointment.
After the initial examination Theo was given eye drops and then we were sent into a darker room to wait for his eyes to dilate. I fed Theo and he caught a little cat nap before we were called back to see the doctor.
We've been seeing Dr. Steve since Theo was a baby and he is truly one of the kindest people I have ever met. After his examination he told me that Theo's eyes look great and he should continue to wear his glasses as much as he can. We'll see him in three months for a non-dilate check up.
Theo had one seizure today.
On Friday, August 12th, Theo had PT and then we Zoomed with his feeding therapist. He kept falling asleep during his feeding therapy so we had to cut it short. I'm glad that his therapist are so understanding.
Andie sent me this cute video of Porter watching the Figment ride while playing with Figment!
Theo had three seizures today.
Over the weekend we mostly stayed at home and did a few things around the house. Josh put up these awesome lights for me, so now we can really see the Harry Potter wands!
Now I just need more wands 🙂
[Super strong!]
I've been riding my hybrid bike as much as I can, but I'm getting frustrated with my speed (or lack thereof). Every time someone on the road passes me they are riding a road/speed bike. I started looking into these bikes, but they are VERY expensive. I decided that I needed to rent a bike for a few days and make sure it was a good fit before I consider buying another bike. I found a place in Chicago that rents out road bikes (most places around here only rent out electric bikes or cruisers), checked the weather for next weekend, and then booked my rental.
Literally the next day the weather prediction changed and it looks like Saturday and Sunday we are going to get rain! UGH! Hopefully it will be scattered storms so I can get in a few hours of riding. Last thing I need is to ride on a rented bike in the rain on a skinny tire.
[Trying to decide how to pack Theo's food and diapers]
Did you know those peppers in our back yard are ghost peppers? I watered them every day, but I didn't know what they were. I told Josh he couldn't cook them in the house (he did that once in North Dakota and I almost died), so he gave a few of them to his friend, Lucas. Have you ever been hit with pepper spray? That's what it feels like when someone cooks with ghost peppers! I guess we'll have to wait and see what Lucas cooks up!
Theo only had one seizure on Saturday and one on Sunday.
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