Thirteen Years

Thirteen years ago today we were hovering over our 8 year old daughter's bed, in the PICU at Oregon Health Sciences University Hospital, wondering if she would live through the incessant seizures she'd begun experiencing the day before. She was wearing a diaper because she'd wet herself with each tonic clonic seizure, and in her confusion Rachel kept tearing the diapers off, and asking where her underwear were. We kept explaining, but she just couldn't process anything that was happening.

Rachel would stay in PICU for two days, while doctors and nurses came and went, doing tests, taking blood, changing medications, doing whatever they could to not only make the seizures stop, but try to figure out what was causing them in the first place. We never did get an answer to the cause, and to this day have no idea why our precious child suddenly started having seizures.

Once the seizure frequency had slowed to the point that the doctors felt she wasn't in imminent danger of injury or death, Rachel was moved to a private room in the children's hospital next door, and we would be there for 7 more days. Rachel was given at least 3 seizure drugs while in the hospital, in addition to sedatives. Depakote caused psychosis, and made her see things that weren't there, and believe that her room had a good side and a bad side, and she would panic if anybody stepped into the bad side. One entire afternoon she said only "I love you" to everyone she saw.

I've never cried so much, or been so scared, at any other time in my life.

Once we had two seizure free days behind us, the doctor wrote us a bunch of prescriptions, gave us some information printouts, and sent us home with a child we felt like we didn't know anymore. I could write a book about everything that's happened since then, and even though they've been absolutely the hardest years of my life, and definitely nothing I would ever have imagined, we have survived, my marriage is still intact, and Rachel continues to persevere.

The fact that my child has to live with epilepsy absolutely pisses me off. I want to be all noble, and talk about how this has been a blessing in its own way, but it's not. My little family has been pushed to its limits, we've all been robbed of opportunities and options we would have had otherwise, and sometimes I just need to vent about the unfairness of it all. No, life is not fair. I've always known that. I was certainly not raised with any other expectation. Still, my sweet, sassy, bright as lightning 8 year old did nothing to deserve the 13 years of struggle, the thousands of seizures, the wagon load of drugs, the anxiety and depression, and the isolation that came with this condition.

At age 21, Rachel is still working to catch up with her peers. She'll probably never drive, or live alone. She can't go swimming without someone being there, and we are cautious about her even taking a bath. She's just now really beginning to feel confident about doing things on her own, away from home. We plan outings so that she can practice her skills, and push her comfort limits. Having Stewart by her side has given Rachel more confidence, but she still likes knowing that one of us isn't too far away.

Most recently, we've been able to reduce one of her prescription medications, with no increase in seizure activity, and she's even been able to better cope with the seizures she does have. Rachel hasn't had a full-blown anxiety meltdown in weeks, and though we know that she's not cured of them, we do feel better knowing that she's making progress. We credit her use of two different sublingual cannabis tinctures for her most recent progress, and we are so grateful to live in a state in which we have this option legally.

Thirteen years. I am grateful beyond words that we still have Rachel with us, that the seizures haven't taken her, but we are fully aware that each seizure she experiences has the potential to end her life. Many doctors still don't tell their patients about the risk of SUDEP, which I find unconscionable. Forewarned is forearmed. I might not be able to keep the seizure from happening, but I can take measures to increase her chances of surviving it if I know what the real risks are.

Even on my worst days, I can't help but be hopeful. I can't help but be impressed by Rachel's positive attitude, and willingness to keep putting one foot in front of the other, never letting us see it if she's having doubts of her own. She sees a really good psychiatrist, who is helping immensely, and we are doing what we can to support Rachel's efforts to mature and take control of her own life.

Thirteen years sometimes feels like a hundred, and yet it went by in the blink of an eye, with vague, hazy memories of doctor visits, medication changes, hours spent on the phone with insurance companies, pharmacies, and physicians. A kaleidoscope of images and experiences so vast that I can't imagine trying to bring order to it all.

There are so many things I wish I had understood better at the very beginning; that I hadn't been so shell-shocked and consumed with Rachel's daily care that I could have seen more clearly, in time to make a difference in her life today. Woulda, coulda, shoulda, yadayadayada. When we know better, we do better; I know that's true. I try to remember that I'm doing the best I can with what I've got, and I am grateful for all the people in our lives who support us every day. We have an amazing support system, and I know what a gift that is. I'd just love to be able to take our lives for granted, just one more time; to be able to assume that everything will be okay, and the universe is unfolding as it should.

-Kelly

MiyakoCon and Good Days

Big doings in Rachel-world today! A young woman with whom Rach attended middle school decided that she would start up a new anime convention, and today was the day for the first one. We learned about it just this week, and Rachel got very excited, but wasn't sure if she was up to going. She had a couple of seizures this week, and her confidence in her ability to cope had taken a hit.

Yesterday she announced that she really wanted to go, and was super excited, and she was going to just have me drop her and Stewie at the door. Everything went as planned, we made a stop at the ATM, and we arrived at the venue, enjoying the sight of all the young people outside who were posing for pics in their cosplay outfits and colorful wigs.

Rachel only stayed about an hour before calling to let me know she was ready for pickup, and when I arrived I found her deep in conversation with a young man, and they were exchanging Facebook info. Her cheeks were pink, and she had a huge smile on her face. I almost cried with joy. Rachel has so few days that include opportunities to meet new people, and make special connections that when it does happen it's remarkable.

I asked why she didn't stay longer, since it was obvious she was having such a good time, and she said that it was so busy, and bright, and loud, and she had already spend so much money, that she decided to leave while she was still having fun, and not push herself to the point that she panicked and then ruined the entire memory. That made me a little sad, but also very proud of her for being mature enough to recognize her limits, and know when enough is enough.

This has been a good day. :)

Rumination and Medication

On Monday the 15th, Rachel had a regularly scheduled psych appointment, so I had some time alone in the waiting area. After about 30 minutes Rachel brought Stewart out, and asked me to take him out for a break, and then I kept him with me for a few minutes, and we waited together.

While we were waiting, my mind was on many things, but having recently updated this blog, my thoughts veered toward what sorts of things we want to share about our journey.

The only major thing we've not shared here is that Rachel is a medical cannabis patient, and we started this treatment 3 years ago this month. We have tried pre-made tinctures and oils, and homemade products as well. All of them have helped to at least a small degree, but mainly with the rampant anxiety she lives with, and not so much with the seizures.

Our most recent change has been to begin using a sub-lingual with a 1:1 THC to CBD ratio, in an Indica strain, which is very helpful for the anxiety, and for helping with bedtime wakefulness. It was developed and the product created by the wonderful people at Oregon Microgrowers Guild. Rachel has been using it 3 times a day, steadily, for the last two weeks. In that time she's had one very small seizure, and though she's had some anxiety, she hasn't had a meltdown, or even a moderate attack.

We always have hope that whatever newest treatment we're using will be the one that makes the difference in her life; that it will make her life more manageable, and less stressful. The jury is still out on this tincture, but the nice thing about cannabis treatment is that there are so many options, and all of them are less scary than a new pharmaceutical treatment.

Rachel is still taking all of her prescribed medications, but cannabis has allowed her to wean off Klonopin, and we are hoping to make a reduction in her very high dose of Keppra.

This sub-lingual oil is in a healthy coconut oil base, and is kept refrigerated, so that's why it looks like it has white spots. The dosing is tiny, so there is a lot of room to increase. This 1 ml syringe contains 20 doses at our current level, and Rachel is dosing 3 times a day. Because of the low level of THC, Rachel is still able to concentrate at school, and doesn't feel "dopey" the way she does when she has to use drugs like Klonopin.

Please feel free to comment, ask questions, share knowledge, etc., but save your criticism. Rachel is an adult, and none of her treatments are pursued without her consent, which she is fully capable of giving. When you've almost exhausted all the prescription options, and you don't want to just sedate your child into oblivion, you get creative in your thinking, and your mind opens to trying something that humans have used safely for thousands of years. 

We believe that someday soon cannabis will be rescheduled at the federal level, and people all across America will have the option of treating their ailments with one of nature's most helpful plants.

Waiting For Rachel

Well, the post title pretty much sums up my life these days. The last couple of years have been so full, and I so wish that I had been better about updating here, and sharing all of the changes with you.

Sadly, Rachel and Jonah split up, but she enjoyed the time she had with him, painful as the end was. There was a lot of wisdom gained from the experience, and she grew in new ways as a result.

Rachel began taking early childhood education courses at the local community college, going half time, and taking Stewie with her, of course. She's currently taking a term off from that, and very much enjoying a Drawing class, while deciding whether to return to school next term, or devote her time to another opportunity.

Expect to see a slew of photos, and minor updates, while we continue our journey, and Rachel continues to expand her horizons. Here are a few recent images, taken at school:

Sometimes Stewart has to wait for Rachel, too. At the dentist, the hygienist's space is really too small for him to be in there, and every now and then he just needs a break from lying on a hard floor, or I'll take him for a walk and break for a few minutes, and we don't want to interrupt class to return him, so we have to wait a few minutes for Rachel to come get him.

Time Keeps Slipping Away

What a year it's been!

Shortly after my last post Rachel graduated from high school. She's our only child, and we've been through so much as a family in the last 18 years, but she is such a light in our lives that it seems like it all went by in a flash.

This whole last year was huge; senior year, Stewart came to live with us, Rachel's boyfriend came back into her life after moving back from Idaho, and then announced he'd be leaving for the Army in May. We crammed a lot into that 9 month school year.

Jonah gave Rachel a promise ring for Christmas, which was huge, and the kids spent as much time as they could together, in between school and dog training, before Jonah had to leave again. 

There was prom...

And a month later it was time to say goodbye, as Jonah left for boot camp...

He did great, and graduated, moving on to AIT in August...

We took a short family trip to the coast after Rachel's graduation, and we bought a one year membership to OMSI. Rachel planned to take a gap year before going to college, because we all needed a break, and because she and Jonah need to know where he's going to be based before deciding what the future holds.

Rachel and Stewart outside the Oregon Coast Aquarium...

October 19, 2013 will be the one year anniversary of Stewart coming to live with us. He has changed our lives in immeasurable ways. He is a wonderful companion to Rachel, loves to do his job, and is just a lot of fun. Rachel is learning every day how to be more responsible for herself, and taking on more duties around the house. 

We stay busy, we have fun, we laugh every day. It could be a lot worse, and we are grateful. 

-Kelly

They Did It!

On October 19, 2012 a wonderful dog named Stewart came to live with us, and to be a partner for Rachel, as she learns how to be an independent adult.

This is their first Hello

Over the next several months, Rachel and Stewie bonded over grooming, and cuddles...

We helped Stewart celebrate his second birthday with a peanut butter and kibble 'cake'...

Stewie even accompanied Rachel to a production of The Nutcracker...

As much as we loved having fun with Stewart, he was here to learn, and to work, so he and Rachel did lots and lots of training, every single day, everywhere they went... 

Still, there is always time for play, and Stewart is a guy that knows how to have fun...

So, Rachel and Stewart have bonded, worked, played, and practiced for the big day that they had their certification testing, where Stewie had to show off all his skills, and Rachel had to show that she knows how to get the most out of her partner...

They nailed it! Rachel and Stewart are now an official Certified Team. Soon Stewie will have his ID card to show off, but this doesn't mean the team is done working. They still train and practice every day, so that they both keep their skills sharp, and are confident when they go out each day.

We have all of you to thank for this amazing gift. Without your help and support, this whole process would have taken so much longer. With Stewart at her side, Rachel can go out into the world with confidence, knowing she has a loving partner, who will stay by her, and alert someone that she needs help in the event of a seizure.

Brett and I can never thank you enough for this gift to us, as well. We are forever grateful. <3

-Kelly

Okay, Mary, Here You Go!

I made a post on Facebook about a thing that happened today, and one of my friends said "Copy and past that into the dog blog!", to which I replied something to the effect of "but I'm sooo busy!" 

So, here's the post:

Today was a big day for Rachel and Dog. The trainer came to put them through their paces, in hopes of being able to give a 30 day notice for certification testing. They have just a couple of things to perfect, but overall are looking very good! The notice is going in, and the team will have 30 days to work, work, work on their weak points before the trainer comes and does a video that will be turned in to Paws for review. Our hope is that they will be certified before graduation, and we can have a big certification/graduation celebration.:)

Yes, this is a Big Deal, and we are both excited and nervous. Recently, another friend asked when we'd most recently updated, so I ran over here to look. Yikes, December 28th was over 3 months ago. That's a really long time in the blogiverse, but I know we have some folks who been following along from the beginning, and we owe to you to at least try and keep you up-to-date.

It would be so much easier to be excited about blogging if I could share more about Dog, and when the team passes their certification test, I'll be able to do just that, with tons of pictures, and fun stories.

Until then, here's a pic of Rachel and Dog enjoying a sunny afternoon, and some bonding time.

Training is never really finished. Even once they're certified, they will still have to practice commands, and do seizure simulations on a daily basis. Every day, until it comes time for Dog to retire. They will also be re-certified every two years, so must keep their skills sharp.

Rachel will graduate from high school in June, her boyfriend is going into the Army at the end of May, and she's working on her certification with Dog. This is a very busy and stressful time for all of us, but she's the one being graded. Rachel is holding up really well under the pressure, but has experienced a few more seizures than average lately. Fortunately, they seem to be much less impactful, and she's only had one anxiety attack in the last few months.

Dog has become a good friend, and a source of comfort and support for Rachel. He goes where she goes, though he won't be attending Prom next week. He's getting the night off as he hasn't learned how to dance yet, and Rachel happens to have a very handsome human date. I'm not really looking forward to trying to explain to Dog why he can't go, and keeping him from pacing a rut in the floor until Rachel gets home.

So, there's my big, long over-due update. I do apologize for the huge gap, and I would promise to do better in the future, but I think we all know that I can't be trusted, so I'll just say that I will try and remember to update at least once a month. Feel free to leave a message if you want to know something. I will get a notice, and get back in here. :)

-Kelly