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!). 

Life Changing Surgery

Rayleigh Bug spent a week in the Children's Hospital in late November. Her seizures have progressed into some really nasty monsters. She's having around 15 a day, most of which are almost 2 minutes long and she holds her breath for the first 20-30 seconds. It's all very terrifying. Unfortunately, because of this seizure type, our Bug has had some regressions. It happened slowly, first she just wouldn't use her hands to hold her sippy cup but over time she reached a point where she wouldn't open her mouth for bites of food or sip out of her cup or a bottle. We were in a scary place, Buggie was losing weight and seizures were increasing. We scheduled appointments with GI and a swallow study with speech therapy to see what was going on. Too soon though, I was having to use a syringe to squirt high calorie formula into her mouth. The pediatrician set us with a goal of 1,000 mls a day until our appointments which were over a month away.

Then things got worse, if you can imagine. Rayleigh began vomiting a few nights a week. Usually small amounts after seizures but occasionally it would happen seemingly out of nowhere. I informed her pediatrician and were admitted to Children's Hospital and knew we were on track to get Rayleigh a feeding tube.

We spent one week at Children's. During that week the GI team ran a swallow study, upper GI study, and a gastric emptying study, they also went ahead and inserting an ng-tube (feeding tube through the nose directly down into her stomach) and started feeds to see how well she would tolerate the bolus feeds vs. continuous feeds. Ultimately, they concluded that Rayleigh is aspirating on liquids, and she is likely vomiting because her tummy gets too full too fast so when she has a seizure she loses control and it comes back up.

Rayleigh got a surgery date to get a fundoplication and a mic-key button g-tube. The fundo is a procedure where the surgeon will pinch a piece of the top of her stomach and wrap it around the opening to make it tighter, make it less likely for her to lose control and vomit after a seizure. This is necessary because each time she vomits up, she risks aspirating and that means it would go into her lungs and could cause pneumonia. Luckily, we caught this very early on and can help prevent that now! 

They sent us home for a week with the ng-tube and everything we needed to do continuous feedings until the surgery date which was 1 week away. 

Here we are, 1 week later.

Rayleigh had the surgery yesterday. The Lord watched over and it went perfectly. There are some rare negative reactions that we will need to be on the lookout for over the next few days and weeks but everything is going really well at this point! We are looking at going home as early as tomorrow, but likely Sunday. The doctors want to make sure she can tolerate the clear fluids, Pedialyte, that they have started her on this afternoon at a small drip that will increase every few hours and then overnight or tomorrow morning they will start formula feeds following the same routine. If she tolerates the formula well we will get to go home! 

Please continue sending your well wishes to Rayleigh. We are controlling her pain with Tylenol and Morphine and so far she is sleeping through most of her healing which is a blessing! 

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!

Our Experience with Banzel

Maybe you're thinking that the title of this should be "Bug's Experience..." but let me tell you, any time we make a change for Bug, we all go through it! You'll see what I mean in this little story.

Banzel is a medication designed to control seizures in combination with other medicines. Rayleigh Bug started taking Banzel on November 13th. We began with 1ml twice a day for one week, then 2ml twice a day for one week and then reached her goal dose of 3ml twice a day. She is also taking Clobozam/Onfi and Vimpat for seizure control.

Not long after she had been on the full dose did we start noticing mood changes. I mean, she hadn't been her happy, bubbly self since Lamictal months ago, which she stopped taking at the beginning of November - but this change was awful. I don't mean to be the gray rain cloud over all this but it was bad! She literally woke up cranky making whiny noises, irritable, kicking, uncomfortable, flailing, and such.

So we figured, "Ok, this is probably just her system adjusting to the new dose of Banzel. It will wear off as her body gets used to it. I hope."

2 weeks passed and we couldn't stand it any longer. Our little girl was not happy. BUT she had the best seizure control she had obtained in months! Before Banzel she was having 2-4 tonic seizures a day. A tonic seizure being where she would tense and curl her limbs in with good breathing or sometimes labored breathing and her eyes would look off, no shaking or jerks. Each tonic seizure lasted about 60-70 seconds.

With the full dose of Banzel in her system, Bug was only having a few tonic seizures a week and had started having absent seizures. An absent seizure for Rayleigh involves her looking off, usually to her left, for 1-2 seconds and then coming right back to. She was having about 2-3 of these new seizures a day after Banzel.

I contacted Bug's neuro and gave him our list of pros and cons and he explained that everything I was describing were side effects of Banzel. He prescribed us to lower the dose of Banzel from 3ml to 2ml twice a day and wait a few weeks for changes to be seen.

So we waited.

And we waited.

And we kept waiting.

I am very very very happy to report that her mood has MUCH IMPROVED these last couple of weeks! She's laughing, giggling, making eye contact, waking up and snuggling instead of kicking and she is just happy!

We're still not sure if it was the Banzel finally adjusting in her system with the smaller dose or if the VNS being activated had something to do with it but we are so grateful that she is feeling better!

So anyway, my advice to parents considering Banzel: The first few months are tough so make a glass of wine and let it pass and do whatever makes them happy (for Rayleigh during those first months we would drive around, the motion would momentarily calm her) and if you see seizure control then try and stick with Banzel and the irritability should wear off, eventually ;)