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.

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 

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 ;)