The Perfect Summer Day

Yesterday was the Fourth of July; our flag was proudly flying in the wind in front of our house, the sun was shining, and the heat was on! 

Rayleigh's dad had to work a little in the morning, so Bug and I lounged in bed and watched cartoons for a little bit and then went to the backyard to read and enjoy the beginning of what would be a wonderful day! 

Mommy & Bug Backyard Selfie :) 

Next, because of a seizure, Rayleigh took a nice nap in the cool air conditioning. When she woke up we headed to the mall for an afternoon movie! This was sort of spur of the moment, but our girl was in a great mood and I've been wanting to try the movie theater again. We've only taken Bug to the theater once and it was a disaster! We took her to a very early showtime of Despicable Me 2 for a sensory show - and being in withdrawal from weaning a medicine she was cranky and miserable and just wanted to be home, so we left about 30 minutes into the movie. But that was a couple of years ago and she has been having some really good days so we thought LET'S TRY! 

And we are SO GLAD we did!! She loved it, y'all! We went to see Inside Out! The theater we chose has the wide recliner seats and we were able to get 2 spots and wheelchair spot. Rayleigh watched the first bit in her wheelchair and then snuggled up with her blanket on my lap and we raised the armrest so she could be close to her dada, too! We did her afternoon tube feeding right there, easy peasy. Goodness, I'm still so proud of her, and so happy she was able to enjoy the movie!!! 

Movie Theater Selfie!

We went over to her grandparents' house after the movie for dinner and some swimming! 

We sent Daddy for sunglasses after her snapped a picture! hehe!

Then, of course, fireworks!! We went to a park in a nearby city where loads of people go to pop off their own fireworks! Rayleigh managed to stay awake long enough to watch her dad and Gpa shoot off some pretty ones, but then she fell asleep snuggled on my lap. Her awesome Lovie sat in the air conditioned van with her to finish watching the boys. 
Sorry I didn't take more pictures, I notice at the end of a fun day that I don't take very many pictures of those moments we had - I was so busy living life and enjoying the moment that I forgot to whip out my phone and snap a quick picture to remind me of the fun we had! I'll work on getting better, haha!

I am just soo thankful that Rayleigh got to enjoy the holiday! Today, she is making up for all of that spent energy with a big long nap (hence the time for this update!). 

My Head is Spinning

My sweet Rayleigh is not doing very well as of late. She has started having tonic clonic seizures. These seizures are also known as grand mal seizures. They affect the entire brain. She starts by slowing tensing her entire body and curling into a very tight ball - which makes it more difficult for me to get the VNS magnet on her battery. Then after 10 seconds or so of tensing she finally relaxes, BREATHES, and then goes into the clonic phase of the seizure. For Bug, right now that means rapid eye blinking, chewing motion with mouth, sometimes clenching her teeth and sometimes twitching her hands. It is a very dangerous seizure that lasts a couple of minutes on average for Bug. These minutes are terrifying and every move I make is calculated: using the magnet, getting rescue meds close and ready, making sure she doesn't hold her breath too long, consoling her. These seizures have already taken away her ability to hold her sippy cup all by herself. She also went through a loss of appetite recently and her sleep pattern has been off for some time (though we're not sure yet if those are related). 

Please send prayers that we are able to get these under control for her soon so they don't do too much more damage or get worse! Thank you!!

On a happier note, Rayleigh Bug seems happier through the day! Although she is going through a phase where she won't/can't smile as easy, I can tell what she likes and know when she's happy. She is really soaking up snuggles right now which I can't complain about!

I don't really know what else to say at this point. There is a lot happening in our world and I will share about that soon. I suppose now, while Rayleigh is asleep, I should get some shut eye because I'm sure she'll be awake around 4am again tonight - at least it's a happy-awake and not uncomfortable baby!

So Many Thoughts

It's the Christmas season once again. Such a beautiful time of year here in Oklahoma! I love the cool crisp air outside and the giving feeling and the bright lights on the houses at night! I'm hoping Bug is enjoying it as much as me. This weekend we're taking her to the light shows around town, that was one of her favorite activities last year! They're easy for her to see and the Christmas music you tune to in the car is upbeat and she sits on my lap while Michael drives through the park :)

This Christmas we feel like we've already received a gift that is better than anything Santa could bring down the chimney - Rayleigh is 12 weeks seizure free!!

We've also been weaning her Trileptal down by 1/2 pill every 4 weeks so we are currently down to 1/2 pill twice a day! She has so much more energy now! I knew we'd see some good things after getting medicine out of her system but I had no idea how drastic her energy level would change!

While those things are really really awesome I have to say that going into Bug's neuro appt tomorrow Michael and I have a ton of questions! Bug is still doing her head drops that her neuro previously told us he doesn't believe they are seizure activity but because she's still doing them occasionally when she's sleepy I want to know more about them.

She's also recently started waking up startled about 10 minutes after falling asleep. What I mean is, she falls asleep and everything is calm and fine and then she pops her eyes open and looks straight up and arms slightly go out for about 2 seconds and then she relaxes, looks around and sucks on her pacifier and then goes back to sleep shortly after.

I'm also pretty concerned that her development isn't improving any faster than it was before seizure freedom.

I just feel sometimes like as soon as we figure something out a whole new issue feels our mind.

I'll repost soon after her visit with the neuro Thursday.