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! 

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!