Thank You for Your Support

We recently did an interview with Dana from our local News 9!! Here's the segment that aired:

News9.com - Oklahoma City, OK - News, Weather, Video and Sports |

Since the segment aired we have had friends and family asking how they can contribute and help us get Rayleigh to Colorado and start the Charlotte's Web Realm Oil quickly. 

This led me to create a t-shirt fundraiser! 

The purple ribbon on the front represents Epilepsy Awareness

The support we receive through this fundraiser will help us cover the cost of moving, the Charlotte's Web Realm Oil which we have to pay fully out-of-pocket each month, and Rayleigh's medical expenses that will not be covered by Medicaid for a few months while we transition and re-apply in Colorado. 

We appreciate every single one of you for cheering on our girl through her journey!

Thank you!

Putting My Hope in Cannabis

Honestly, I don't know how to summarize everything on my mind into one blog post but I'll do my best to keep this short and simple and to the point.

Medical cannabis, Charlotte's Web in particular, is not only stopping seizures but it also healing the brain! And the kicker, Charlotte's Web does not get the patient high.

I grew up sheltered. I was a good kid that followed the rules. So I would have thought I'd be the last person giving my almost-4 year old daughter marijuana. That was before I learned the facts about cannabis. When your child is seizing every day and losing all of her motor skills and has so much brain damage from the seizures that she can't progress developmentally, you start to think outside of the box that the doctors keep you in.

Rayleigh has tried 11 anti-epileptic medications, the Ketogenic Diet, and has the Vagus Nerve Stimulator. None of these have given her seizure control past a honeymoon phase. But Charlotte's Web can give Rayleigh some relief! This natural plant that the Stanley Brothers have bred could be our answered prayer! CBD is the most medically beneficial component of the plant as has anti-epileptic properties and is a neuroprotectant.Charlotte's Web is very high in CBD and contains some of all components from the medical cannabis plant including a very small amount of THC (the psychoactive part of the plant), enough to help but not enough to get a child high. Here's a chart showing the benefits medical cannabis provides:

From Full Spectrum Labs

Rather than type out all of the facts I have learned, I'll just share some of my favorite videos about Charlotte's Web and medical cannabis benefits are below:






And of course the documentary by Dr. Gupta that got the whole country interested:


The results are AMAZING but Charlotte's Web is medical cannabis, and cannabis of any kind is illegal in Oklahoma, no matter how minute the levels of THC are. Because of the laws here, we will have to move to Colorado for treatment. And soon.

Moving a special needs family is not easy, y'all. We have to start by transferring her daddy's job, then switching insurance and benefits and needless to say we will have to find a new pediatrician, neurologist, epileptologist, GI doctor, neuro-opthomologist and PT/OT/Speech/Vision therapies. And leave behind family, friends and support that cannot ever be replaced in our hearts.

There is a meeting at the State Capitol on February 12th. I will post more on this issue then. For us personally, we are looking at moving to Colorado within the next 6 months to get Rayleigh started on Charlotte's Web ASAP and would like to be able to move back when it is legalized in Oklahoma. We shouldn't have to move away from everything and everyone for our daughter to receive medical treatment. 

I'll leave you now with the (paraphrased) words from a dear friend when we first met with some Oklahoma representatives at the State Capitol in October, "There is a plant, a plant that is all natural and can heal my child and save her life, a plant growing 8 hours away that I am NOT ALLOWED to give my child because of where we live!" - Hilary 

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! 

Way to Start the Day

I just wanted to do a quick post, this is my first post from my phone. Well, I guess I'll share my morning with everyone. Rayleigh woke up just before 6a like she has all week. We snuggle up, watch tv, read and I chat to her. Only, today she got the hiccups at 7 which led to a small amount of vomit that somehow made a huge mess. I sprang into action to get Bug into the bath and take care of her first, then onto stripping the bed for a wash and making the bed over again. At 7:30 my sweet girl had a 2 minute seizure and has now fallen asleep. 

I think I'll join her for a nap. Goodnight, y'all! 

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!

I've Been... Busy.

I know, many think that is a lame excuse. Heck, I used to think so, too. But is absolutely the truth. 

I think all moms, whether they are special needs moms, stay at home moms, working moms, moms of 7 boys or moms of 1 precious little girl, are always doing something. No, make that women in general. I saw last week on The Doctors that women are less likely to make time to do hobbies, take a bubble bath, or relax in front of the television because women feel the constant need to accomplish something to get ahead, to tick off the checklist. I don't know for sure if every women feels that but I can tell you that that describes me.

For me, there is rarely "spare time". From the moment I wake up I am taking care of something. Today was a treat, I enjoyed lunch and a quick shopping trip with my sister-in-law. It was much needed! But most days, when I drop Bug off at school I head to the pharmacy to pick up a prescription, or go buy baby food, call doctors or insurance companies, or come home and work on CutieBug party decorations. I will admit, my life is very routine. That's the way we need it. I don't think anything would get done if it wasn't so routine, so predictable.

Anyway, my biggest excuse is that if I have time to sit down and write a blog post then I should use that time to work on party decorations, or do some in-home therapy with Bugaboo. So, I compromised. I have Buggie snuggled up in the blanket on the couch next to me while I do this post before her dinner.

So here's a quick breakdown of the recent months: Bug's seizures are not controlled. She is having anywhere from 5-15 a day. It really varies. In the last week she hasn't had more than 10 a day. We did a VNS adjustment last month, same strength but pulsing more often. That helped a little but not a lot so almost 3 weeks ago we increased her Vimpat medicine by a half a pill. She went through her usual adjustment period, still kind of going through it actually, messed up sleeping pattern, random-seeming mood swings, all that jazz. But the seizures are going down so we will stick with it a bit longer and see what's really going on. 

I'll try and post again shortly. I'll just add it into my routine ;) 

Return of the Tonic Seizures

I haven't  posted in a while because everything around here has been busy and we have been in quite a routine and there wasn't really anything major to report but unfortunately, that did not last long.

Just over a week ago Rayleigh started having tonic seizures again. This is where her body tenses and her breathing slows drastically. Her face looks worried while it happens which is the most heartbreaking part. Her seizures before this were more like head drops, pauses and other 1-3 second seizures. These tonics last about 30 seconds total give or take. We use her VNS magnet as soon as we notice the seizure and that usually shortens the seizure or stops it all together but sometimes it doesn't seem to help with the seizure at all. Bug is having about 5 of these tonics a day.

When they first started it was very stormy here in Oklahoma and we attributed the increased seizure activity to the barometric weather pressures because it always seems to have some kind of negative effect on her seizures. But we soon realized, in between storms, that this was much too worse to be caused by weather changes. 

We spoke with her neuro and he said we may need to make some medication or VNS adjustments but first he wanted us to try using her Clonazepam PRN, 1 pill twice a day for 3-5 days. After 2 full days on the Clonazepam we noticed a decrease of seizure activity BUT her mood was inconsolable. She was literally irritable and uncomfortable all day long, so we didn't do any Clonazepam on the 3rd day and she started getting calmer and happier through the day and the next day. But today, she is unhappy again.

We've doing rounds of Tylenol/Advil and providing lots of stimulation by rocking, bouncing, swinging, and snuggling but everything is only temporary relief. Her neuro isn't back in the office until Wednesday and we see him then but I, being mommy, want to fix her now. Moms know that there is no worse feeling than knowing your child is hurting and you can't do anything about it.

I don't normally reach out for prayer request but we could use some now. Please pray for Rayleigh's comfort to return and for her pain to vanish - and pray that Michael and I can find a way to keep our girl happy until we can see the doctor about this. Thank you so very much :)