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

Ants In The Pants

Here we are, on October 1st, and with any luck Rachel will have her dog by the end of the month. We haven't yet received a phone call confirming how things are going with training, or when the dog will actually arrive, and I'm going to be an antsy mess until we do. 

Rachel had 4 seizures over the weekend, and though they weren't really big ones, we still couldn't help but hope that having her dog would somehow help make the process easier for her. We are very much looking forward to Rachel having her furry buddy to cuddle up with when she feels lousy.

Once we get the confirmation phone call, and know that everything is a go, we can begin to plan, and shop, and prepare. We are really looking forward to that, because then it will seem real. Right now, it's still a probability, and not a given.

Thanks for your patience with my lackadaisical blogging style, but there really hasn't been much to share the last few weeks. We're just waiting for word. I will certainly update when I know more.

-Kelly

In Which She Rambles

This may be a rather stream of consciousness post, I'm not sure yet. Mainly, I just don't know where to start today.

Summer break has been good, but will be over with the first day of school, on Sept. 4th. In a way, I'm ready to get on with it, get it over with, and get this kid graduated. In another way, there is so much about to happen with her that it's sometimes overwhelming, and I just don't know what should be done first.

Rachel will be 18 in January, which means she'll be the one in charge of decisions having to do with school, and her education plans, etc. It also means that we'll have to prepare a medical power of attorney, just in case she's unable to make decisions for herself at some point, and we need to really consider the possibility of SSDI, though that can wait until she's out of school, and we get a better idea of whether she'll be able to maintain a job with her seizures and anxiety issues.

One of the problems we have is that Rachel's seizures seem to always be changing; frequency, type, manifestation, time of day, and so on. Always unpredictable. Just when things seem to be settling into a somewhat predictable rhythm, everything changes, and we're set off balance again.

Just this week, she's developed a new aura, where she feels like she's twisting to the side, and feels dizzy. Her right hand has also started to shake at the beginning of some seizures, which is completely new. Rachel has a left temporal focus, so right-sided movement is to be considered within the norm, but anything new makes me nervous.

Rach and I are in the habit of taking walks in the downtown park on a regular basis, and feeding the squirrels. The other day we decided to walk up the Derby track there, and we were making good time, and were almost at the top, when Rach stopped, saying it was hard to breathe. Usually I'm winded first, so I was surprised, and then I noticed she was blank in the eyes, so I got her steered over to the curb, and sat her down just before she began to cry, and the seizure was full-on. This was the first time I hadn't brought my entire purse (with meds, magnet, and at least tissues), so had nothing to wipe up drool with, and we both ended up looking as though we'd spilled water all over ourselves. Fortunately, she was able to walk again after about 10 minutes, so we came right home, and Rach had a long nap.

So far this month there have been 6 seizures, whereas last month there was 1. This in itself has become something of a pattern, but not one we can ever count on, of course. About the time we do, everything could change.

On the upside, we've received another $150 in donations! Every bit brings us that much closer to Rachel's dog, and I can't tell you how much having that help will mean to Rachel as she moves forward to adulthood, and independence. :)

-Kelly

School's Out For Summer!

Happy Summer Solstice, everybody!


I'm always torn about this day; on the one hand I love it because it's the official first day of summer, but on the other I'm a bit sad because it means that the days start getting shorter again. Why can't I just enjoy the first part, and not worry about the rest? ;)


School is finally out, and Rachel did quite well this semester! An 'A' and 4 'Bs'! We are very pleased with her performance. Rachel's anxiety levels are so much lower than they were last year, and that makes it easier for her to concentrate and focus.


Today we'll be packing up her school books, and getting them shipped back to Connections, so they can send out her materials for next year. Just one more year of High School. As hard as some of the last several years has been, it still seems to have just flown by. Our little chick will be ready to fly the coop sooner than we're ready for, I think. Really hoping she gets her dog by the time she graduates, so she can do some training, and be able to safely move on with her life.


I know I haven't written much lately, and for that I apologize (again!). The end of the school year was hectic, and we were enjoying a long seizure-free spell, which I really didn't want to jinx by saying anything about it. Sadly, that came to an end on Sunday, when Rach had a seizure. The rest of the day was fine, but at just after 5 a.m. on Monday, she had another, and then about 30 minutes after having her morning meds, she felt sick and needed to vomit, which caused yet another seizure. Vomiting and seizures really do not go well together, and can be very dangerous. Fortunately, she didn't aspirate, but quite a bit did come out her nose. We had hope that would be it for the day, but at about 5 p.m. there was yet another seizure. Epilepsy really sucks.


Tuesday was much better, but we stayed close to home, just in case, and there were no more problems. We finally determined that the problem might be with an antibiotic that she's been taking for an infection in her eyelids (I know, if it isn't one thing, it's another), so we've spaced out the time between her regular meds and that one, and made sure she has food on her stomach when she takes it. It seems to be working, but we'll be watching for any problems.


So, I think we're all up to date now. Oh! I almost forgot to share that we received a lovely donation from a couple of very special ladies. Shout out to Jen and Carol! We had the distinct pleasure of becoming acquainted with Carol just a few months ago, during a time when she was facing a serious struggle of her own. Sadly, she lost her battle a couple of weeks ago, but she reached out to us in a tangible way, giving her love and support, and never lamenting her own fate. She was brave, loving, funny, talented and optimistic. Her daughter Jen is a lovely reflection of her mother, and we are blessed to call her friend.


-Kelly

Mea Culpa/Stupid Human Tricks

I screwed up. Big time. As a result, Rachel suffered through two seizures yesterday, and I don't know yet if there will be more today, but of course we are really hoping not.


We have a weekly pill minder, which I fill for Rachel, me being the responsible adult who monitors her meds for her. We have a smallish, plastic tote, which contains all of the many smaller plastic bottles from the pharmacy and the vitamin section of the drug store.


Each week I sit down with the pill minder and the tote, dole out meds and vitamins, and supplements, taking note of which ones need to be refilled soon, etc. I don't know what happened with this week's filling process, but clearly my mind shut off at a critical moment, because I short-filled one of her seizure meds, which caused the blood levels to drop, and caused the seizure activity that we saw.


I am sick to my stomach about this, and have been on alert for more seizures overnight, though Rachel seems to have slept peacefully, and I will be getting her up soon. 


In more than 8 years of handling Rachel's meds, I have never made a mistake like this, and certainly wish it hadn't happened now. Brett has offered to double-check the tray for me each week, and reminded me that Rachel is almost 17 years old, and needs to be more aware of what's she's taking each day. I'm not too worried about that part yet, though it is certainly a skill she'll need to have moving forward.


So, I'm not asking for sympathy, but had to share what happened, in the interest of full disclosure. The drug plan we have in place works pretty well, or had been, except for the occasional break-through partial, which we just can't seem to totally control. I guess it's important to be aware of how close to the edge we are with control over the TCs, and know to avoid that line with more diligence.


-Kelly

Balance

Today was going fine, until about 3:30 a.m. Yes, a.m. We didn't even make it to dawn before a Bad Thing happened.

Brett had just kissed me goodbye for the day, and I had rolled over to take advantage of having the whole bed to myself, while he went out to the shop to enjoy his coffee, as he does each day before work. Minutes later, I heard a strange sound, and then heard it louder again, and realized it was coming from the monitor in Rachel's room. *insert really filthy word here*. I dove out of bed, grabbing for my glasses, and lurched into her room, to find her flat on her back, completely stiff, not breathing, eyes wide and dilated. I swiped her VNS, and pulled her onto her side, so she wouldn't aspirate, propped her up with a pillow, and ran out to get Brett before he left for work.


Rach came out of the seizure pretty quickly, but remained unconscious for some time, finally falling into a normal sleep after about 30 minutes, and then slept peacefully until about 7 a.m. Since Brett was already up and dressed, he let me go back to bed for a couple of hours (as Rach had experienced some insomnia and I didn't get to bed until after midnight), while he stood watch over the monitor, and then decided to go on into work when we realized that she was probably not going to be in imminent danger of more seizure activity. We have learned to be afraid of the possibility of SUDEP (Sudden Unexpected Death in EPilepsy), as these types of seizures are often the precursor.


As it happened, we already had a scheduled neuro visit set for this afternoon in Portland, so at least that was good timing on Rachel's part. We have a fabulous neuro nurse practitioner, named Bridget, and we got to talk with her for over half an hour, going over every single thing, and working on a plan of action for the short-term. We don't have a lot of solid answers yet, but we have some things to tweak and check out further, including the possibility of a battery or unit replacement of Rachel's VNS. 


Finally, we made it home from Portland just before 3 p.m., just sort of tired and bummed. As fate would have it, I opened Rachel's email, and found a donation from Deb, my friend-in-law, for $1500! Adding in bucket donations picked up this week, and a cash donation from a friend, we have a new thermometer total of over $7770.00!


This has been such an emotional day, with huge downs, and then a huge up. Sometimes the universe is able to balance the scales, but I wish we didn't test the theory quite so much. Rachel's back and neck are stiff and sore, and she's more tired than usual, but she's still okay, and still the really awesome, positive young woman she's always been. It's going to be another sleepless night for me, keeping closer watch, but that's a small price to pay. We'll keep this up as long as it takes to keep her safe, but we are really looking forward to having canine backup, and we're hoping it comes soon.
-Kelly

Big News!

In today's mail was the copy of a letter, sent to my California Mom, acknowledging her incredible donation of $1,000.00!! This is huge, and we are so grateful.:)


So far, we have earned, or had donated, over 10% of the needed monies, and if we include the grant from CHF, we've got about 20%. Seems like a long way to go yet, but we know we'll get there.


Rachel did end up having 2 more seizures since my last update, but they were smaller than most, and this month's 5 is a lot less than the 11 in September. We continue to hope someday she won't have to worry about them anymore, but in the meantime we look forward to Rachel having her Paws companion to help keep her safe.


Please continue sending good thoughts, prayers and positive energy our way. Every day I hope to get some news from Paws about Rachel's dog.


-Kelly

Donations & General Update

I love it when I can come in here, and give an update that we've received donations. Today we've increased the thermometer by another $99.90, which includes the check from Baja Fresh!


I am also aware of another two donations that I don't have final confirmation for, so won't include them until I do.


We have some wonderful friends who have been brainstorming with us on ways to increase funds, and Rachel has been coming up with a few ideas, too. I am a very amateur knitter, and she's wanting me to do a couple of simple projects that we could maybe sell on my Bonanza.com page, so we'll see what comes of that.


I haven't located our copy of our original application with Paws, but I'm pretty sure that it's been about 2 years now since the initial application. It feels like we've been doing this forever, even though we've only been in fundraising mode since late July. We have a long road yet, and I'm trying to have patience with the process.


We made a small medication increase this month, and Rachel has had fewer seizures than she did last month, which is fantastic. September saw 11, and so far October has seen 3, but there are still several days left, and who knows what will happen next.


She's plugging along in school, and is more independent in her study, but still struggles with impulsivity, and then feels terrible when she doesn't do well. We're working hard on learning to take good notes, something she never seems to have been taught in her regular schools. Along with writing in cursive, note-taking seems to be a lost art.:/


Thanks for checking in with us. I look forward to updating again soon, and sending that thermometer up some more.


-Kelly

Back To School!

I feel like we're off to a good start with the blog, and I hope to not lose that momentum, but Rachel's school year begins on Tuesday, and since it's a new experience for both of us, there will be a period of adjustment, and a lot to learn.


Rachel will be attending Connections Academy online, and as her Learning Coach, I have certain responsibilities to take care of each day she is studying. I'm hoping that once she gets settled into her new routine, I'll have more time to concentrate on other things.


I also wanted to let you know that, since the seizures of Tuesday/Wednesday, there have been no more. We have every hope that the tonic/clonics are now managed once again, though we do expect to continue seeing the partials from time to time. I will be taking Rach in to get a blood draw on Monday evening, so that we have a better idea of what her medication levels are. This can help her doctor make a more informed decision about dosages.


I will continue to update each time we get donation notifications from PAWS, and whenever we have a new fundraiser or outreach opportunity. Thanks for keeping up with us, and feel free to offer fundraising advice and ideas.


-Kelly

The Day After

Yesterday was a bad day. It wasn't bad enough to end us up in the hospital, but it was bad enough that we were reminded quite vividly of what those days felt like, and how much we don't to want to relive them.


I've always felt that Rachel's epilepsy was not a good thing, and I like to think that I don't wear rose-colored glasses, or else we wouldn't be in the process of getting her a Seizure Response Dog, but I have felt that maybe her seizures weren't really bad enough to warrant the dog. I sometimes thought that we were overreacting, and that she'd be able to eventually make her way without that assistance, and it was just a matter of time before things got better.


I had my bubble burst in a big way Tuesday night. Those nasty, huge, ugly TCs are lurking just under the surface of a chemical cocktail that holds them prisoner, and we never know when that cocktail might fail. Meds can lose their efficacy over time, people can make mistakes, and before you know it, you're staring at someone you love while they thrash their way through an electrical storm that takes place in their brain, and exhausts their body.


Opening up this blog to the eyes of potentially thousands of strangers is one of the hardest things I've ever done, but I believe now that it is imperative that we are able to help Rachel get this resource that will allow her to move more safely through the world. The dog won't be able to stop a seizure, but it will be able to alert that she needs help, and stay by her side until she gets it.


As her parents, the prospect of letting Rachel go out into the world on her own is frightening, but we recognize our responsibility is not to hold her back, but to give her the tools to go out that door with the confidence that she has everything she needs to be independent. 


Last night was better, and Rachel only had one partial seizure, at about 3 a.m. Believe it or not, that was a relief. It means that the med levels are coming back up, and we may have the leash on the TCs again. I'd like to stuff those suckers about 10 feet underground, and never see them again.


-Kelly

Harsh realities

Throughout the process of creating this blog, and keeping you all updated on our fundraising efforts, I've sort of intentionally kept the tone very light. It's no fun to read about doom and despair, after all, and I get that.


Today, though, it's hard for me to be upbeat, and this is a part of living with epilepsy. Whether it's yourself, or someone you love that has it, there will be bad days; days where you doubt yourself, your doctors, and your ability to cope.


Yesterday morning, Rachel missed her early dose of her medications. This is generally her lower dose of the same meds she takes in the evening, and the same meds she's been on for quite awhile now. Usually, I am all over her to take them on time. For the first time in at least a year, they got missed.


The result is that at about 10:40 p.m. last night, Rachel experienced a tonic/clonic (formerly grand mal) seizure, which hasn't happened in at least 5 years. We were scared, but realized she'd missed the meds, and hoped that would be the last of it. This morning at about 6:40, she had another one. 


These seizures go on for more than 3 minutes, with low oxygen, blue lips, bitten cheeks and tongue, and convulsions. Now we're really worried. We have emergency meds here at home, called Diastat, but fortunately didn't have to use them, and we really hope we're over this particular episode now. I have called her neurologist and they say to just wait it out, as it takes time to get those med levels back up in her blood.


It's incredibly hard to wait. We're exhausted, and scared. Brett is here to help me, and I am so grateful. We'll take turns being up with her, while the other tries to catch a little sleep. More than ever, it's things like this -stupid human error- that reinforce how much difference a Seizure Response Dog could make in Rachel's life. What if we weren't there? I don't even want to think about it.


-Kelly