Hello everyone! Since next week is a holiday week and I am hosting Thanksgiving in my teeny tiny home I am going to be super busy, and I am not sure when I will get a chance to post. But I wanted to share about Wyatt’s appointment and this week so, here we go!

First though, the more fun parts. Wyatt and I headed to Ann Arbor Wednesday afternoon. Our destination – the Natural History Museum at the University of Michigan. I thought it would be neat to see some dinosaur bones and check out some of the other exhibits there. So we had a fun little field trip!

We both loved the Exploring Michigan room the best, more than the dinosaur bones. The museum has a lot of hands on type activities for kids and is worth a trip if you are ever in the area. It is free and I would plan on an hour or two there at least, although you could stay longer if you did all of the activities, which we didn’t.

After exploring the museum, Wyatt and I headed to the hotel we were going to stay at for the night. The plan was for Billy to meet us there after work and then we would have dinner in the room and just chill before Wyatt’s super early appointment at Mott’s. But Wyatt and I got some chill out time early! After asking a few people for recommendations, we ended up staying at Weber’s Inn. When I was a kid, it was like a big deal to go and stay at Weber’s – I think for the holidome or something. Whatever it was, I know that we stayed there too. So it was neat to take Wyatt there for a night! The rooms are all newly renovated, with super comfy beds and bright bathrooms with an amazing shower. But what really set them apart was the staff. Every single person we encountered was so friendly and helpful! I was navigating check in alone with a young child in a wheelchair, luggage, and feeling frazzled and seriously, everyone was so nice. They let me check in early, they helped me with our room door when our key wouldn’t work, they just were beyond. Once we were settled, Wyatt and I stocked up on junk from the vending machines and plopped into the bed and read and played on our devices, decompressing. Billy got there around 6, minutes after the pizza arrived (Cottage Inn for the win, they were also amazingly friendly!) and we ate dinner in the room, catching up on the day’s events.

Once Wyatt went to sleep, Billy and I tuned in to the Hallmark Mysteries and Movies channel. Since the next day was my birthday, Billy told me I could choose. So I chose a Hallmark Christmas movie! My first Christmas movie has been watched, let’s check that off the list! It was apparently based on a book by Nancy Naigle, and I really enjoyed it.

The next morning we were up at 6. I was so glad we were only staying 15 minutes from the hospital, otherwise our morning would have been much earlier – and on my birthday too!

We really liked Wyatt’s new epileptologist. We didn’t dislike his old one, but I am trying to centralize all of his care and since we moved his neurosurgeon to U of M, I felt it was important to move his epileptologist as well. It is just so much easier to share imaging, information, when it is all in one system. Wyatt had information in three different hospital systems and I think this will really streamline it all.

So – the appointment. Wyatt has focal epilepsy, which he was diagnosed with in May of 2020. Since then, he has technically “failed” two medicines, which means that the medicines do not completely stop his seizures. Wyatt’s seizures are so subtle, his eyes shift slightly to the right, and maybe he will have a little arm jerk, and they last about 2-5 seconds. Without the meds they could look different, and more involved so the medicine does control them, but he does get breakthrough seizures, which puts him in the intractable category. Usually, when you fail meds, the next line of treatment discussed is surgery to remove the spot of origin if possible. But Wyatt is more complicated. Due to his brain bleeds at birth, he has other areas of damage that could spawn seizures if this one area that is causing them now is removed. He also has something called ESES, which means he has almost constant spikes during sleep. Our new doctor really gave us so much information, and laid out so many different paths that we could take, and even said that for Wyatt, for him seizure free could mean just one or two short seizures a month. Which to some people might sound not great, but for now, that is ok with us as long as he is safe. We left the appointment feeling very informed and more hopeful. So overall, it was a very good visit, and therefore happy birthday me!

We had a very low key rest of the day. Billy and Wyatt gifted me with a gift card for a massage (yes!), my mom bought me a purse, my dad and stepmom gifted me some birthday cash, and my cousin sent me flowers! It all made me smile! (and Billy is totally making me that Dolly Parton cake tomorrow)

And that is it for now! I hope you all have a wonderful weekend!