Thoughts of Grief Not Often Shared

Tonight I am sad. Tonight I let the tears fall. I try to keep this blog full of hope; an uplifting view of our journey with very few moments of despair typed and shared out. But tonight, my heart hurts.

Rayleigh is fine. Today was an ordinary day for us, but that doesn't mean that sadness and grief don't show their ugly heads. 

This morning I discovered that Rayleigh has a loose tooth! Michael and I were giggling and joking and playing with our girl - telling her that she's growing too quickly and that the tooth fairy will be watching and waiting! This evening I noticed that she actually has TWO loose teeth! When I found that second wiggly little tooth I smiled and told my Bug about it and then left the room and became frozen. Fear hit me like a punch to the gut, I don't know where it came from. Her growing up? Possibly swallowing a tooth? Will they grow back in? I have no idea where it came from. Looking back, it seems illogical and silly, random at best. But my heart was racing and I was wishing that I didn't just learn that my girl has 2 loose teeth. It's silly, I know. All kids lose their baby teeth, why did it freak me out? I'm still not sure. That feeling left as fast as it came, but it stirred up some emotions I had building up. Like how when a spouse leaves one dish out and suddenly you are fighting about everything that's ticked you off for months! 

Let me backtrack to shed some light on the little things that piled up on an already overwhelming, unsteady pile of emotions on my heart: Shortly before occupational therapy today Bug had a big seizure. She stayed awake and did pretty well at therapy, but was tired from the seizure and a little out of it so she wasn't able to utilize the full effects of that 45 minute session. No big deal. In fact, I left there proud of how strong my Bug is!

Then she had her second seizure of the day about 2 hours later in the waiting room for her swallow study. {A swallow study is when a person eats different consistencies of foods in front of an x-ray to see how well they swallow and if they aspirate.} Rayleigh did not get to do the swallow study after all the waiting because she fell asleep! The speech therapist was so kind and squeezed us in for another try next week. Prayers that we will be able to successfully do the test are so appreciated!! 

So really, she's only had 3 seizures today and enjoyed the day. I just wanted to share this moment, this feeling because every single moment of every single day isn't always smiles. Not for anyone. And this journey is hard, but I get Rayleigh, and that makes it so worth it. We read stories in bed and now my girl is drifting off listening to children's lullaby music. And I'm just a wreck wondering what the future holds and trying to make the best of every day with this beautiful girl.

Thank you for letting me share my heart tonight. I'm feeling better already. Now to close this laptop and snuggle up that angel!

So Many Changes in a Few Short Months

Our family has been very busy keeping up with lots of moving parts in this journey we are on! Since my post in July Rayleigh has started school, is completely off Banzel, now gets real food through her feeding tube instead of formula, is on a slightly increased dose of Charlotte's Web, had family photos done, went to Disney on Ice, has in-home nursing, went on her first field trip, and is getting a wish granted by Make a Wish of Oklahoma! 

Whoa.

Real quick, here are some of my favorites from this year's family photo session!

Family photos for us are bittersweet. We love love love capturing our beautiful girl in pictures to make memories that will last forever. On the other hand, it is one of those things that makes us painfully aware of her disabilities. Obviously, no one is more aware of her disabilities than Michael and I, but we are so involved every single day that it has just become life. A beautiful, meaningful life that we love belonging to. But several things in life make us think, "Dang, that was hard". For family photos, it was because we couldn't just sit her on the ground and tell her to smile, or pick any pose we like. Every single pose had to be thought through: "How will we hold Rayleigh?", "Can't do that, she doesn't have enough head control", "She's too big for that kind of pose but not able to do the older-kid kind of poses"... 
Luckily, we had a wonderful and very patient photographer who would allow us to get in poses we typically do with Rayleigh or ones I found online that I thought we could do. Some worked out great, others... not so much. Nevertheless, I am so pleased with this year's batch of family photos and am so grateful to have these memories! 


Now to the update: Poor little Rayleigh's body is still adjusting to the medicine wean of Banzel. It has been about 1 month since her last dose. We weaned very slowly and the wean went really well. We saw very little withdrawal, and when seizures would increase from withdrawal she would stabilize and get to her baseline after only a couple of days. She is still very tired after seizures and even when she only has a few a day, the post-seizure-naps can wreck up a day. We tried to take her to the science museum on Monday but as soon as we checked in she had her first big seizure of the day so we turned around and came home so she could get a good nap. This is not abnormal for our life.

After the final dose of Banzel we saw withdrawal symptoms come and go for several weeks. At this point, she has had 4 good days in a row so we are hopeful that she is fully stabilizing (knock on wood!). She is having less than 5 seizures on a good day, but still up to 10 of her bigger 3 minute complex partial seizures on a bad day. Two weeks ago we increased her Charlotte's Web Hemp Oil by a tiny amount, Rayleigh starts to show changes from the hemp oil at around 3 weeks so I'm excited to see what comes about - because, again, she has had 4 good days in row ;) 

School is going well! Buggie currently goes half days as we don't think she could tolerate a full day of activities right now. She loves the music, art, circle time, and of course being around people! 

First Day of School - Yes, she was asleep when we left home!

But she woke up when class was about to begin!

Her first field trip was last week and I think she really enjoyed it! It was a windy day at a Pumpkin Patch farm. Rayleigh got to pet different animals, pick out pumpkins and go on a hayride with her school friends!

I'll do a separate post on Disney on Ice and Rayleigh's Make a Wish. They are too much fun to squeeze into an update-post! I'll just leave you with this sneak peek picture from the day we met Rayleigh's sponsors! 

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!). 

Home Sweet Homa

Hmmm... Where to start? I guess I'll just dive right in. After months and months of Michael trying to transfer his job to Colorado we thought, "Well, maybe there's a reason this isn't falling in to place despite our efforts." 

That's the small thought that led to a grand discussion and ultimately, the decision to stay in Oklahoma. At least for the foreseeable future. 

Our decision was not made lightly but once it was spoken aloud, there was a wave of calm that went through me. It felt like I had finally released a breath that I had been holding in for a very long time. 

Rayleigh is the most important thing in my life. Do I think it would be beneficial for her to have different options in CBD oils and access to THC oil to use as a supplement to the CBD oils? Sure. Do I think the answer is to uproot and move to Colorado for their supply? Not right now. We have seen some great stuff from high CBD oil use. In fact, Rayleigh is currently taking Charlotte's Web Hemp Oil. She is still having 6-10 complex partial seizures a day, they are still wearing out her little body, BUT she is having random days of only 2 or 3 of these seizures. And, no joking, her eyes are so much more alert. The girl is AWAKE when she is AWAKE! We just recently increased the dose (you have to titrate your way up to an optimal dose slowly) and we have seen a little bit of movement coming back, mostly wiggling her arms or moving her head! 

So, I'm not sure if high CBD oil is going to be our answer for seizure control or not.
But I'm going to keep on trying until I have reason to stop. 

To everyone that donated toward our Colorado move: THANK YOU! You have such loving hearts. That money was set aside and has been/is being used to buy the Charlotte's Web Hemp Oil. Each bottle is $250 plus shipping, so your help is soo appreciated! 

Oklahoma recently passed a bill that allows only high CBD oils to patients under 18 with intractable epilepsy. Rayleigh fits the criteria (duh.) and has her neurologist's blessing. I've got some issues with the new law, the biggest being: How the heck are the patients to get the oil when it's still federally illegal for the providers to ship any form of medical cannabis outside of their state? 

{Charlotte's Web was classified as Hemp Oil this past year and is currently shipping to all 50 states under that pretense. All other high CBD medical cannabis oils that I know of are NOT shipping nor classified as Hemp.}

After Oklahoma passed the bill OU Medical Center announced that they will begin the Epidiolex trial. This is for a big pharma version of medical cannabis, it is very high in CBD and extremely low in THC. I have heard CDKL5 success stories from the clinical trials of Epidiolex in other states so I am going to contact the coordinator and inquire about getting Rayleigh into the study. I will not put her in the study if it is controlled with a placebo. Why would I take her off a for sure high CBD hemp oil to put her in a study with the possibility that she gets the placebo?

In closure, we have a plan with her neurologist to wean her Banzel (one of her seizure medicines). Once Banzel is out of her system we will start either Fycompa or Sabril. She's been on Sabril before with good seizure control but some side effects, she's never been on Fycompa and while it's only been available for about a year I'm hearing good things. Decisions. Hopefully the medicine that we decide on and the CWHO will give Rayleigh enough seizure control that we can get back to weaning Onfi (the monster seizure medicine). 

Thank you for your patience and love while we were in limbo about the move. 
Oklahoma, you have a strong hold on this family!

And now, some pictures from the past year!

Mixed Emotions

Ok, so tonight as I sit up late with Rayleigh, I have some things to get off my chest. This post is not necessarily about Rayleigh. It is about me. Her mom, the mom of a special needs child, the mom of a daughter who seizes every day, the mom who must move to an entirely new state to get her child the medical treatment she needs. 

I must admit, I'm not in the best of places tonight. I have been extremely stressed the last few weeks. When we first made the decision to move our little family to Colorado and try medical cannabis oil it was bittersweet. I can tell you that part of me was excited to get there and start this new adventure! A new home (smaller yes, but I prefer to think quaint), new friends, new things to do and see, change. 

Of course, missing family was and still is the forefront of our woes about moving. We are tight-knit and they are very involved in Rayleigh's care.

That woe is followed by establishing a new team for Rayleigh in Colorado. Y'all might not understand, but we LOVE her team right now. Her pediatrician, her specialists, her therapists, and her school. Oh, her school feels irreplaceable today. I talk to her teacher and the aide every day for just a few mins to discuss Bug's day and how she's doing. I have both of their cell phone numbers, I can contact them any time I need to and I feel so confidant knowing they are qualified to take care of Rayleigh while I'm away and that they are happy to have that time with her, and the other students of course! I pretty much the same feeling about Bug's pediatrician, she is so wonderful and calls to check in between appointments and always remembers what's going on with Rayleigh! The entire team genuinely cares for Rayleigh and I'm terrified that we may never get that again. 

There are undoubtedly positives to moving. I mean, it's not like we're moving to some terrible place! Colorado is beautiful, I've always loved that state. There are several welcoming families that we will meet and bond with and lean on in times of need. And of course, the state has the medical cannabis oil that Rayleigh needs. More great things: My very dear friend and her daughter (Rayleigh's very dear friend) already made the move to Colorado so we will be close again! AND big news y'all: 
Rayleigh's pediatric neurologist is moving to Colorado!!!

This is huge! Rayleigh has seen this neuro since the beginning, the first EEG, the first medicine, every hospital stay, every test, every seizure type. It's gotta be kismet. He is not moving there for anything related to medical cannabis, he got a teaching job there and will have a small practice, too. 

But still, it is difficult. Michael and I, and Rayleigh, all have so many friends here. I know, I know, we can make new friends, but that doesn't mean that we are happy to move away from the friends we have made here. 

I think I'm starting to sound petty. I'm just frustrated. The state of Oklahoma is letting me down. I have always LOVED the great state of Oklahoma! The people are strong and loving. But it's hard to feel that love when the legislators here are not willing to do anything to get my daughter the medical cannabis oil she needs. 

Maybe that's where a lot of this is coming from. Maybe this is some sort of "acceptance" period. Accepting that there is nothing I can do to change the laws in Oklahoma, not in a timely manner that would save Rayleigh. 
Accepting that the oil we need is not available in this state, causing us to move. Accepting that this doesn't have to be permanent.
Accepting that it might have to be and I have little to no control over that.
Accepting that the Federal Government of the United States is in no rush to legalize medical cannabis. 
Accepting that we are moving to Colorado. 

All of my sadness aside, I am excited to be in a state that provides better opportunities for special needs families. Nursing is very difficult to get here in Oklahoma. In fact, we were denied and in the process of appealing before we made the decision to move. Rayleigh, denied a nurse. But that really could be an entire post on it's own. Nursing is more readily provided in Colorado. Also, Medicaid programs and waivers seem to go into effect quicker (we did paperwork for a year before getting approved here, there it is around 3 months at most).

At the end of the day it boils down to this, we are moving because it is necessary for Rayleigh. We will make the best of the situation like we always try to do. 

We will miss our family, friends, and Rayleigh's team so dearly it hurts.

Thank you for your support.

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