Hope on the horizon!

I heard back from Olivia's neuro about our current issues (see last post for more specifics), and had several things to say. First off, we are taking Olivia back down to her previous dose of zonisamide. This is the med that we increased right after Olivia's most recent hospital visit and status seizure. Next, she said (for at least the 3rd or 4th time) that we need to "Seriously" consider more Dravet-specific treatments for Olivia, including a couple meds we haven't tried yet as well as possibly the Keto/MAD (modified Atkins diet) Diet. She feels that Olivia's current amount of daily seizures and status seizures (and possibly even her meds) are too greatly inhibiting her development.

Now, I have coined a term for all this based on my last two years of living and researching Dravet. I call it the "med change rabbit hole." It is such a guessing game and sometimes a giant muckety-muck when it comes to changing meds for epileptics, especially severe epileptics like Olivia. It is like the rabbit hole because once you go in, it seems like a long darkness that is seemingly impossible to get out of. And, you can VERY easily end up worse than better.

I have been praying A LOT about Olivia and begging God for guidance--pleading with him to make my instincts/intuition come through clearly and that they be RIGHT. I need something bigger than myself to help me fight this battle for Olivia. God is the one who has always been with me, so He is my natural choice.

I already knew (since the beginning of this Dravet journey) that the diet was something we would do at some point. So, here we are at that point. One of the most exciting turn of events is the growing use of MAD. It is, just as the name implies, a modified version of a ketosis-inducing diet. Just like all the meds, the diet-in any form-doesn't work for everyone. It is a huge life change and not something to be entered into lightly. But, the MAD versus the full Keto is a much more "do-able" option. It is simpler, has more palatable food choices and doesn't require the rigorous measuring that full Keto does. Additionally, I can follow the Atkins diet along with Olivia, so we can be eating the same things (which is a big deal to Olivia and just plain easier when it comes to shopping and preparing food).

I already have a great online support system for taking on the project of this diet. Many, many of my Dravet friends have been doing or have done this diet. So, they have paved the way for us. They know lots of tips, tricks and recipes. I have already received several helpful emails from one of my dear Dravet mom friends. She has even sent me some pics of approved foods she has found that are yummy treats her daughter can have. How great are my friends?? I love them so much!

We are without a nurse today, so I can't type much more as Olivia needs all my attention. I will write more when I have time. I am just feeling SO much hope in light of our new options, and not the rabbit-hole fear I have been feeling. That in itself is a thing to rejoice. Living in fear is such an awful thing.

Please continue to pray for my girl and for me to make wise choices on her behalf. I appreciate your prayers and kind wishes more than I could ever express. I hope that this finds you all enjoyably preparing for the holidays (and not stressed!).

Life in this moment...is bursting with HOPE, and as always, filled with more love than I ever imagined I would be blessed with. My precious, precious girl is the greatest gift and I get to celebrate that every single day. I am lucky enough to hear her sweet voice and get showered with her wonderful hugs and kisses. I am so fortunate to be able to hold her hand as we walk together. And, I get the privilege of helping her learn new things. I. AM. BLESSED. INDEED.

All my love, -H

Holiday cheer and not-so-much

Things are a mixed bag here in our world, as usual. I will start with the positive. Christmas season is here, and we are enjoying it. We have a lovely little tree up with tons of fun decorations for Olivia to look at (and sometimes fun for her to take off the tree, too). She has gotten to see several of the traditional holiday movies/TV shows. Her favorites are Frosty the Snowman and Polar Express. We also went to a holiday concert at a nearby church. MiMi came with us. Olivia absolutely loved it, and she was so well behaved. Last night, we went to look at Christmas lights. We finally got to see the well-known and popular Markwell Ave light show. It is an entire block of houses all lit up and synchronized to the music on a specific radio station. It was SO cool!

Now for the not-so-fun times going on...Olivia has been increasingly having behavioral and communication difficulties. It has really been going on since the last status seizure, but it almost seems like it has gotten worse overnight. The past week has been full of frustration, anxiety and fear. In fact, I'm not even going to be able to truly finish this post because she is building up to a meltdown as I type. I have no idea what is going on. I emailed my thoughts and outlined the issues to our neuro yesterday, and she promised to email me back today.

Please lift Olivia up in prayer that this is A) something I can fix somehow, and B) that it is temporary and not progression of the Dravet.

Wishing you all a wonderful holiday season!
Love-H

Recap of recent hospital visit.....

Dravet strikes again! This past Wednesday, Olivia had a status seizure. It started during her bath a little bit before 5p. Just as her nurse began rinsing the shampoo out of her hair, she went limp like a ragdoll. We quickly jumped into emergency mode, giving the rescue drug, applying oxygen and suction. This time was complicated by the fact that she was right out of the tub. We had to get her dressed in the midst of all this chaos. I had made the decision after the last status seizure to avoid 911 if at all possible. We have had so many bad EMSA experiences that I truly feel they are a detriment to us. So after administering the first dose of rescue med and getting her quickly dressed, we made a mad dash to the car. The nurse sat in the back holding Olivia, keeping the oxygen on her, and we gave the second dose of rescue med before leaving the driveway.

It was rush hour traffic. I drove like a machine. I put my flashers on and just laid on the horn the whole time. If I came up behind a car I would honk and honk and honk continuously while waving my arm for them to get over. Thankfully, this worked on most cars we encountered. It was like a scene out of movie. An extremely surreal experience.

We made it to the emergency entrance, ran up to the desk shouting "status epilepticus," and our nurse said, "open the door, NOW!" So, they did. They got us right back in to a room and started assessing the situation. We made it from the start of the seizure to Olivia laying on a bed in the ER in 15 mins!! We have NEVER made that kind of time when EMSA was involved. It just confirmed our suspicion that, when the circumstances allow, we can do a better job than EMSA has.

Once we got her into the ER, it was a complicated situation just like last time. The seizure type she was experiencing was difficult to define as well as difficult to determine if it had stopped. She wasn't having a typical Grand Mal (general tonic-clonic) seizure where the body is convulsing. Those are a lot easier to recognize as well as easier to tell when they have stopped. If the body stops jerking, you can assume the seizure has pretty much ended. No, this one didn't involve much jerking at all. The ER doctor told me we would pretty much have to have an EEG to confirm whether she was still seizing or not. If we don't know she is seizing or not, then how do we know exactly what to do next?? Well...we don't! So, she got loaded with SO much Attivan and Versed that they had to intubate her to protect her airway. The more of that type of med a person gets, the more likely it is that they will stop breathing on their own. Being intubated is a risky thing, especially for little ones. And, once they are intubated it is hard to get the docs to extubate (remove the tube). So, just like the last two times she was intubated, she fought the tube and wanted to breath on her own. But, they just wanted to keep her heavily sedated in order to keep the tube in. It is a horrible situation. They have to tube her because they have given her so much medication, but they have to keep giving her even MORE medication to keep the tube in. Arrrgh.

Thankfully, this time and last time, the PICU (pediatric intensive care unit) doctor was not afraid to pull the tube as soon as we got up to his floor. Oh how I wish we could just skip the ER and go straight to PICU. You would think the ER is the place to be in an emergency, but I do not necessarily agree---same as I do not agree that EMSA is any help to us in an emergency. My girl has such a rare condition that generalized docs are often lost. This puts so much pressure on me to make decisions regarding her medical care with little to no helpful input from the doctors at hand. What if I make the WRONG decision? How do I live with that? I cannot express the heaviness of these situations. My shoulders strain under the mantle of this responsibility. But, let me say that I am more equipped today to handle it than I was a year ago, even 6 months ago. I have worked hard to learn and understand as much about Olivia as I can. I do not turn away from the challenge. I grit my teeth and burrow through. I do this because there is no other option. I will not let my ignorance or inexperience cause her to suffer if I can help it in any way. I stretch my body and brain beyond the limits, so that she has the best possible chance to survive, to live a quality life. I am not special in any way. I am not superhero strong. I am a mother, plain and simple.

Our PICU stay was very calm this time. Olivia actually slept the entire night. We had the best in-patient nurse we have EVER had, so I was able to sleep a couple hours as well. She woke up bright and early calling for me, asking for high five. Haha. She was still able to walk, though she was wobbly. She did (and still does) have an upper respiratory virus--which almost certainly caused the seizure--so she didn't feel great but was still in decent spirits. We were discharged before noon. Olivia has been doing well since we've been home. She is still fighting this virus, so she tires easily and is battling a lot of congestion. But, it does seems to be on its way out.

The neuro recommended an increase in one of her seizure meds this time, and I have decided to allow it. It has been over a year since I have allowed a med increase, so I think it is probably time now. In the last couple weeks her daily seizures have increased almost threefold some days. Hopefully, this increase will bring it back down to her baseline of about 25 seizures a day or even less.

The main thing affected by this last big seizure seems to be her speech. She has been doing a lot of babbling mixed with some words, but she has also been sort of making up words that we haven't heard before. Just today, it seems to be improving, so that is very good news. Her ability to regain lost ground always amazes me. My biggest hope is that this always continues.

Sorry this is so long, but I had a lot to say I suppose. :)

Life in this moment is...two steps forward and 1-1/2 steps back, so we are still gaining ground!

Well, figured I should show my blog some attention, since July was my last post. We are finally into fall weather here, and that is a huge thing for us. Olivia can finally move freely about indoors and out---her preference being outside, of course. She tolerated the absurd heat of this summer far better than I could have imagined she would. Her seizure activity overall has been decreasing, or perhaps it's better to say it has been stabilizing. She has been the same happy girl as always, enjoying every drop of life. Her beautiful spirit is one of the greatest gifts I have ever been given. It continues to inspire me to keep trying to be the best person I can be.

But right now, I would like to tell you the results from her recent 48-hour, in-home video EEG. First off, let me say how much better it was to do a continual test like this in our home as opposed to in a hospital. It is a hard test to do, but at least she was in her comfortable, familiar environment with many of her usual activities to keep her occupied. I suppose it's because she is getting older, but she was so much more cooperative and tolerant of wearing all the electrodes glued to her head this time than the last time (which was done last summer, over a year ago). So, the main objective of a test like this is for the parent/caregiver to continually observe the patient and keep an extensive log of all known or suspected seizure activity. The electrodes are hooked to a box that has a button to push at or near the onset of any SZ activity. She wears a little backpack that holds this box.

I don't even know how many pages long our log was this time. I believe it was around 8. Even though that makes more work for the doctor as each event must be analyzed, the docs far prefer "too many" button pushes than too few. I learned the hard lesson last summer that too few button pushes leave too many unanswered questions. So we button pushed like crazy! :) And, our doctor was very glad. Olivia had quite a few seizures during the test (all very brief absence type), and the doctor estimated that Olivia has at least 25 a day. While that sounds like a lot, for her condition it is actually quite good. The fact that she is able to continue developing pretty much normally in spite of these seizures is a key point. It let's us know that we need to just keep doing what we are doing.

Olivia also recently had a follow-up sleep study, and it came back completely normal! No seizure activity was detected and no true apnea episodes. Her previous study (before her tonsils were removed) showed mild to moderate apnea, so we are very pleased with this normal study!

About a month ago, Olivia had a status seizure while we were at the zoo. It landed her in the PICU overnight, and they did have to intubate her. She has recovered very well, and I am so thankful for that. Those kinds of events are ALWAYS very traumatic, no matter how many times we go thru it.

I will try to update again soon! Just wanted to get everyone caught up on some of the recent happenings since my last post.

Love to you all!

Contemplation Confusion

You ever find yourself in the midst of mental/emotional turmoil and not know how you got there? Find yourself perseverating on intense thoughts or feelings beyond your control? Yeah.....me either. Ok, just kidding. Of COURSE, my answer is "yessssss indeed!" It's not new for me, really. I have always been a perseverator, over-thinker, introspection extraordinaire---call it what you want; just means my brain won't SHUT UP or shut down, sometimes. Lately, though, I have found my brain doing more of a quiet, constant churning. Not the usual shouting at me--where I must really bite into the thoughts that provoke me and conquer them. Nope, my thoughts are playing hard to get with me, and I would like to know why. Here are some theories I have come up with...(they aren't really worked out, so bear with the rough draft nature). It could just be the usual, run-of-the-mill stress that plagues my every breathing second--awake or asleep. Perhaps, it is the continual evolution of Olivia's condition? I find it interesting to be living out in real-time what I have only read about in regard to Dravet. Just like almost anything, when it really goes down in life, it isn't quite the same/not how you thought it would be when you imagined it or read about it. You can read all about a roller coaster and what it's like, but until you actually get ON one, you don't exactly know how it feels.

I have never had a kid before. I barely knew any children at all, frankly. I hardly knew anyone with special needs in my past life. I have never known a cherub-of-a-person like Olivia. I have never had to KEEP someone ALIVE. Ever. Let alone, constantly. I don't think I have this processed, yet. I don't know how to process it any faster. I don't think I or anyone actually can. In the same way I can't levitate myself to...well anywhere...I can't levitate my psyche to a more "processed" place just because I wish it to be so.

It's better. I'm better. Things are certainly BETTER. No joke. When I look back to the spring of 2010---geez louise!! Life is on-another-planet better. But it's all still weird and uncharted. It's unnerving.

Have you ever worn a pair of MBT shoes? Or worked out on one of those exercise balls cut in half thingys? I feel like that all the time. Always looking for my balance, some moments more off than others.

I have no idea what this blog post is really trying to say. I just know I have things swirling in my brain that I can't quite make out, yet. Like when you are hungry but don't know what for---but you know it's something specific.

If I figure it out, I will let you know.
Love--H

SPECIAL REPORT: VERY Exciting News!!!

Olivia has been approved for a grant through the Dravet Syndrome Foundation that will provide her with a Coolsport Cooling Vest and an Emfit movement/seizure monitor!!!! This is a huge, awesome, amazing, wonderful, LIFE-CHANGING gift!! http://www.dravetfoundation.org/pag.html

The Coolsport Vest arrived today and the Emfit Monitor is on its way. The vest is the best one available to help her endure the too-hot temps of summer. Some days are too hot for Olivia to even go outside at all (as the heat is a seizure trigger) and having this vest will allow her more freedom. This vest is not likely to be covered by insurance and costs $130 before shipping. http://www.coolsport.net/index2.html

The Emfit is a monitor for her bed that will detect seizure movements or if she escapes the bed. Olivia is at great risk for SUDEP and nocturnal seizures. This monitor will afford me more peace of mind at night as it will be able to detect and alarm during seizures that I could otherwise sleep through. This monitor is NOT covered by insurance, and it costs at least $600 before shipping.  http://www.emfit.com/en/care/products_care/movement-monitor/ 

Through this amazing grant program, The Dravet Syndrome Foundation is providing these two LIFE-CHANGING items to Olivia, FREE. They are able to provide grants such as this through the generosity of donations acquired either directly or through fundraising events. I strongly encourage you to donate, if at all possible, any amount, because it will go toward helping change the lives of other sweet kiddos like Olivia. There was NO OTHER way we were going to get these items as funds are so limited for us. This is truly a blessing I could never say "Thank you" enough times for.

Please visit The Dravet Syndrome Foundation at http://www.dravetfoundation.org/, to see the amazing things they are doing and how you can join them!!

My heart is SO full of love and gratitude!
-Hilary

Summer, Summer, Summertime! :o/

Summertime temps are definitely here in OKC! Dravet causes Olivia to be extremely heat/light sensitive. Some days/times are better than others, but we are certainly seeing the effects of summer. Just about any time she walks outside, she has a brief seizure. However, she did have one the other evening that was not brief, and we ended up having to call the ambulance. She managed to avoid the hospital, thankfully. She had been playing outside for a little while and was just getting too active--Bam!--I looked away for a second and when I looked back, she was down on the ground seizing. She did play outside yesterday for quite awhile in her baby pool and seemed to do quite well. The only catch was her nap afterwards---it was four hours long! And, it was only interrupted b/c someone rang our doorbell. So, it looks like even if she doesn't obviously seize in the heat/light, it is certainly wearing her out. We are going to continue making the most of the early hours of each day and getting her out while we can.

In other news, it's almost her 2nd birthday!!!! She turns the big TWO on 6/13. We are having a little party here at the house. I waited so late to get things planned that it might just be us here with a cake and some presents, but at least she will LOVE her presents. I can't wait to give them to her. She has a Wish List on Amazon.com, under the email: hray75@yahoo.com.

In order to deal with her increased seizure activity, we have finally increased her medication a bit. She hasn't had an increase since last fall, which is VERY good! But, summer carries such extreme triggers that it is apparent her previous dosage will not safely get her through. So, we started the new dose a few days ago. It usually takes a week or two for the side effects to go away when we do this. In the meantime, she has been quite a handful---more than usual!

I am glad to finally be out of cold/flu season even in spite of the difficulties of summer temps. Olivia still must be very protected from illness (as always--this will never change for the rest of her life), but it has been a great relief that not as many illnesses are swirling around the population. I tell you the cold/flu season will make you a bonifide germa-phobe when you have a compromised child. So, I am glad to get a little break from the extreme anxiety of that issue.

We are absolutely loving our nurse!! She has been an amazing help. The agency is working hard to find us a second nurse, so we can get our full approved hours. Please pray that the right person comes along to fill that position for us.

Well I gotta go. I am SO tired. Olivia got me up at 6:00 this morning. :o/ So, I am already ready to get back in bed!

Much love, -H


****Addendum:  We ended up not going through with the med increase (Keppra), b/c she wasn't getting any obvious benefit from it, yet she was experiencing too many negative side effects. It was decided to go back to her previous dose and just hold steady there.

Okay!!

Our life at this moment is...changing! We completed the nerve-racking process of being approved for home-health nursing. I got the call yesterday from the home health agency that we had been approved. I had been waiting on pins and needles, and I knew I would be emotional when I got the decision (approved or denied) but when she told me we were approved I literally fell to my knees right in the living room and began to weep. I couldn't even hear her talking anymore. I just thanked her and said goodbye. Ha. (I called her a little while later to have her repeat everything she said after "you've been approved!") Olivia wasn't quite sure what was going on. She doesn't really understand emotions other than the happy, loving ones. She generally laughs or just stares if someone gets angry, sad or scared, etc. Although, I do have to say, she is sloooowly starting to develop a bit in this area and that is very exciting for me. She responded to me crying by coming over and patting me on the back and even asked me, "Okay?". She kept switching sides, too. Patting me on one side then walking to my other side and patting me on that side. Then I gathered myself enough to realize I needed to help her process this moment more than I needed to experience the moment. So, I turned to her and smiled big and said happily that Mommy was VERY ok. And, Mommy was crying very happy tears. Then, I added some clapping and Yays, things that tell Olivia it's a happy thing. She immediately smiled great big and threw herself onto me in big, tight hug. So, we sat there hugging and laughing and me still weeping and Olivia still patting me and saying, "Okay!" Yes, Olivia, Mommy is SO very Okay!

And, now with this amazing turn of events, the nursing, Mommy will get to be even more Okay. I can't believe I am not going to have to do this alone anymore. I am in shock. I have had to push my body and mind so far in the past year that I thought surely both would snap, but they did NOT. Praise God, they did NOT. There is so much work to be done with and for Olivia and really tough days ahead. This nursing service seems to be coming at a really perfect time.

My mind is just swimming with all the things going on, but as usual, I can only seem to handle tiny updates at a time. I'm sorry about that!

I do want to ask for some specific prayers for sweet Olivia. She will most likely be having 2 more procedures/surgeries within the next 60 days or even less. Her hearing is still very, very low, so she will almost surely be getting tubes placed in her ears. Right now, she hears everything like she is underwater. Pretty awful and extra awful when you're trying to learn a language, so we will be taking care of that sooner than later. The other issue is far more complex. She suffers from sleep apnea, both obstructive (something literally obstructing the airway and stopping breathing) and central (the brain is "forgetting" to breathe). There is nothing you can do to fix the central apnea, but there are possible fixes to obstructive apnea. That is, IF you know what the obstruction is. Our problem is we don't know what exactly is causing her obstruction. We (the docs and I--not me, myself and I--ha) believe it is ultimately tied to her low muscle tone issue--just like SO many of her other problems. She will need to have an exploratory procedure done where they watch her throat in action while she sleeps. Please pray that all goes smoothly and that we find the proper direction for her care in this matter. Olivia having a compromised airway is a huge source of worry for me.

Well, I did say this was going to be short, didn't I?? I guess I got a second wind or something. :o)

I hope this moment finds each of you doing/feeling well, and I hope you can feel Olivia giving you a virtual pat on the back and hug around the neck.

All my love,
-H

PS  I am waaaay too tired to edit this, so forgive all spelling errors and missing words. Just use your imagination. :o)

Mother's Day!

To my Olivia: Today is Mother's Day, sweet girl, and I am so incredibly lucky to be YOUR mother. I feel that way every single day. I absolutely love it when you give me hugs and pat me on the back while we embrace. I love your sweet little voice, especially when say such words of kindness like "thank you" and "good day!" but extra-specially when you say Mommeeeee! :) I cherish your laugh!! And, you are SO funny. I never knew you would have such a sense of humor so young. You genuinely crack me up. We certainly need our laughs, because it's true, sometimes our days are pretty tough. But, you are tougher; stronger than anyone I've ever known. You have shown me what real strength is. You are teaching me what it means to persevere. 

My dear, sweet Olivia, to be your mother and get to love and guide you every day is the greatest gift I have or ever will be given. I cherish every moment up to this point, and I promise to continue to linger in our hugs and in our bouts of the giggles, because all I have is our life.....at this moment.

All my love forever and ever,

Mommy

Sooooo Sleepy

I reeeeeally want to update the blog, but I am SO sleepy!! Let's see if I can at least get out a few points of interest. Olivia managed to weather the higher temps that plagued her last week without having any emergencies or even big seizures at all. This is very, very good news. I am still trying to get a handle on her allergies again, but at least her high temps have come down. 99+ is the highest I have gotten for several days. This is high for her, but it is still better than almost 102.

Ok....that is all I can manage. I require more coffee to keep from constantly yawning.

-H

We began the home health nursing approval process today, which basically consisted of an initial meeting with the nurse case manager from the home health agency. She was very nice, and I really like the company so far. They are also our medical equipment company and have proven themselves to be incredibly efficient. I had to basically arm the nurse with loads of info about Dravet, our daily life, health history, and all that sort of thing. One of the things that was just running through my mind a moment ago (this is many hours later after the appt and, of course, my brain is still churning--ha), was the line of questions she asked me regarding Olivia's seizure frequency. It has most certainly increased and not surprisingly for the condition as it is progressive. But, the thing that struck me was when she asked if there was ever a day she didn't have a seizure. And, without hesitation, I said, "Oh no. She's never had a day without a seizure. Not since about 9:00p Feb 14, 2010."

...............................WOW............................

As the woman reacted and then made her notes. I just sat there quietly realizing the enormity of what I had just said. My precious Olivia has seized every day--EVERY day--for more than the past year. That's a lot. My guess is her average right now is around 100 a day, but I really don't know. They are way too hard to count. I am awaiting her recent EEG results, and that may give me more of a clue, but then again it's only a snapshot of time. So, all I can say for sure is that I know she is having a whole lot more than she used to, and like I told the nurse--Olivia never gets a day off.

I sure do adore my sweet baby girl. I am SO very proud of her. She is the strongest person I know.

COMING SOON: Updated report on development! Olivia has been doing some fun and exciting things in this area that I can't wait to share with you all!

Here's a little update on things: Olivia has been doing pretty well overall. We still ride the daily Dravet roller coaster of course, but we have only had one EMSA call lately and no hospital trips. So, we call that decent. She seems to have finally kicked the last of the winter illnesses only to have been relentlessly attacked by allergies for weeks now. Even allergies lower her seizure threshold, cause her to run a low grade fever and create such nasal congestion that it would impede her emergency medication. Allergies for pete's sake. I THINK I finally have it under control just as of today actually. Today was the first day I realized I hadn't used a tissue on her repeatedly all day long. Her doctor switched her from Zyrtec (once a day) to Allegra (twice a day) and she still is on her nasal spray, Atrovent (twice a day). I offer the details for any other Dravet mommas who might be dealing with the same issues, so they can know what has worked for us.

Olivia has been having increased daily seizures, which for her means pretty much a grab bag of all her seizure types excluding the generalized tonic/clonics (grand mal). So, she has been keeping me extremely busy for....well, gee, I don't really know how long now. I guess this last intense period has been building all year so far really. Of course, truthfully, Olivia has kept me way too busy ever since she was born!

SPEAKING OF!!! Duty calls......Must cut this update short. I will return with more info as soon as I can. Until then, take care!

Purple Power!

Life at this moment is....PURPLE!! Just in time for Purple Day! This Saturday, March 26th, is National/Worldwide Epilepsy Awareness Day, also called Purple Day. People all across the globe will be wearing purple in an effort to spread awareness of EPILEPSY, in all its forms. There are hundreds, at least, of fundraisers (such as raffles, bake sales, jewelry sales, gift basket sales, special discounts with proceeds going toward research funding, just to name a small few), Walks--like 5k for the Cure--, banquets and celebrations, and so much more. What will you be doing on Saturday to honor Olivia and her fellow warriors?? In the very least, will you wear as much purple as you can? And will you tell others WHY? You could even start right now! Olivia is fighting her fight right now. She fights every day. Every minute. Every second.

Life is this moment is, all over the place. The roller coaster of Dravet is literally up and down almost daily. I find myself so guarded against the disappointment and chaos that enjoying the fun, wonderful, positive, even normal moments is growing nearly impossible. I'm sure to give in to that, though, would be to fully give in to bitterness, fear, resentment, pessimism--everything that is the opposite of what Olivia and I need to stay strong against the monster of Dravet. But, how do you "stay strong" when you just aren't anymore? How do you yank yourself up by your bootstraps when they are now threadbare? Where do you go when you are at the end of yourself?

I have no idea.

I've decided to print out information to give therapists and other paraprofessionals regarding Olivia's condition, because frankly I worn out with flapping my jaws about it and feeling like I'm not heard or understood. So, maybe if they read the words of the doctor who discovered the condition, for example, they will become more enlightened. Here is just a tiny portion of what I've been reading the past hour:

"PROGNOSIS AND COMPLICATIONSThe outcome of severe myoclonic epilepsy in infancy is unfavorable. The affected children will persistently be affected with seizures. Partial seizures disappear and myoclonic jerks disappear or attenuate. Convulsive seizures are mainly localized at the end of the night. Fever remains a triggering factor and can still provoke epileptic status. Neurologic abnormalities remain stable. All patients are cognitively impaired (severely in 50%) but without deterioration after the age of 4 years (Guerrini and Dravet 1998). Many also have behavioral disorders, including psychosis. The mortality rate is very high, from 15.9% to 18% (Dravet et al 2002). The cause of death is variable, including drowning, accident, seizure, status epilepticus, infection, and sudden unexpected death." 

--Charlotte Dravet


This isn't new information to me. But, even after a year of living it and after 7 months of knowing what "IT" is, this kind of thing still makes me want to flail myself onto the floor and cry. And CRY. And CRYYYYYYYY.


Sorry to be a downer, but that's where I'm at in this moment.

Overdue Update!

My apologies for not updating sooner. Olivia's surgery went SO very well from beginning to end, the entire process. This is an especially amazing fact considering we had the surgery on the very same day--SAME TIME--as the 2nd-worst blizzard Oklahoma has ever seen. We stayed at the hotel nearby the hospital the night before to shorten the distance to drive (or even walk, I was fully prepared to wrap her in blankets and walk across the highway to the hospital if I had to!) on the treacherous roads. Olivia was having fun the whole time. She thought we were on some kind of adventurous trip. My car was completely blocked in by snow the next morning, but her father made it safely to the hotel in time to pick us up and get to the hospital in plenty of time. One of the most amazing things was her surgeon prayed over her before the surgery, which was a very comforting thing to me. Even though my friends couldn't be there with me in person due to the weather, they were with me digitally by text, email and Facebook!

In general, Olivia is doing so very well right now. She did catch strep throat last week, but it hasn't kept her down for long. She has only had one major seizure lately, and her emergency medication was able to stop it within 10 minutes! That kept us from having to go into the hospital. I did have had EMSA check her over as usual, of course, due to her stopping breathing during the seizure. For those of you not personally familiar with these kinds of seizures, you would be shocked how quickly a person turns blue when they cannot breathe. It is still one of the most terrifying things that happens in our life. And, when doctors or people try to say gobbldeegoop about how seizures just LOOK scary or how they are more scary for the parents, blah-de-blah-blah....oh my, my, my. Yeah, right. Come to my house and say that to my face after you see what I see. She doesn't just look scary like she isn't breathing.....she ISN'T breathing. I have seen so many seasoned medical professionals get nervous and shaky when Olivia goes into distress. If only I had the training and the equipment, I would just do it all myself. Ok, sorry. Rant over. Just went back in mind for a minute there to the beginning of this journey when we heard the standard line about seizures so often from people. I know there are families still hearing that today. We need to educate the public about seizures and epilepsy, because the misinformation in rampant. Hmmmm, I did say rant over, didn't I? :o)

Back to the part where Miss Olivia is doing really well! Her daily seizures have been on a near vacation the past few weeks--Yay!. They come and go just in a random pattern, so we are trying to enjoy the times they GO. :o) We are finally getting some warmer weather, so she has gotten to play outside in the yard a few times. This has made her so happy. She is having an EEG and sleep study done in the next two weeks. I wanted the EEG, so we have a baseline to go by in the event she goes into distress and is thrown into a terrible cycle. That way, if an EEG is done at that time I have something to compare it to. (Her last EEG was a year ago and was "normal") She is having the sleep study to determine whether she is having nocturnal seizure activity or not. This is common for her condition, and she has some concerning behaviors that suggest it, so obviously the test is warranted.

Despite all that she faces that could get her down, my sweet baby girl just laughs and smiles and causes trouble like any silly little toddler. I am SO grateful for that. I am SO grateful for HER!

And, In this moment, I am grateful for friends and loved ones like YOU.
My love to you all,
Hilary





P.S. I wish I could type more, but my hands (and all joints actually) have been just terribly sore lately. As soon as it's better, I promise to keep things more updated!

Surgery Scheduled....For Sure, Maybe.

We saw the head/neck surgeon Friday for consult. Liked him and his support staff very much! Got everything in order for surgery to happen this coming Tuesday at the crack of dawn o'clock. There is a bit of back and forth between hospital and implant company on price of the device, but SUPPOSEDLY that has been settled, and we are safe to assume surgery is happening. I am only half holding my breath just because I know the sting of disappointment. However, even if we run into a snag it will just be put off for a weeks--so they tell me. All that said . . .

We are moving forward and getting ready for the BIG day! She has to start an antibiotic on Monday for preventative purposes, and I already have her pain medication prescription filled and ready to go! I like how this surgeon thinks ahead. She gets a good scrub down bath Monday night, and that's about it as far as prep. It will be done outpatient (90-minute time slot). Hoping for a quick/smooth recovery and then home to take it easy, hopefully!

Going to keep this post extra brief, because it is naptime, I cannot keep my eyes open! Olivia's sleep pattern is all over the place these days. This girl knows how to wear her momma OUT!!   :o)

Woooooaaaaaahhhhh!!!

Our life, at this moment, just hit super duper FAST FORWARD!!! I just got a phone call from the surgeon's office, and we were offered an appointment for the initial consult as early as tomorrow! And. . . AND surgery as fast as next TUESDAY. YES. I mean five days from now. FIVE. Excuse me while I pass out for a minute.  Oh wait, I can't do that, who would watch Princess Sassysocks?? LOL.

Let me catch you up in the event you are wondering what in the world I am talking about. I had just recently (literally 6 days ago) given the go ahead for Olivia to receive a Vagus Nerve Stimulator implant (also called a VNS, by Cyberonics--if I were more techie, I would insert a link here for you, but you will just have to Google it, sorry!!). This implant is another form of seizure control.  It has quiet a few pros and not that many cons, but the biggest con would be it simply might not work for her.  For people battling intractable epilepsy, they often must look beyond medication to other treatments to help control their seizures.  This is exactly what we are doing, and by doing this so early in Olivia's life, we are hoping to keep the seizures from forming comfortable little paths in her brain that make it easier for them to travel around the older she gets. Now, once the implant is in place, it usually takes 6 months to begin seeing results.  So, when they saw Olivia's age and situation, they understood the need for early intervention and wanted to offer the squeeze in appointments (which are probably speeding things up by 1 to 2 months).  It's certainly exciting and scary, but I am on board!  A couple months can be a big deal in the world of Dravet.  Simply put, a MOMENT can change everything.  I'm praying the road is turning the right direction in this moment.

I will have more to write about it later, but considering it might be happening so soon, I wanted to get the initial information out there to friends and family quickly. And I'm not rereading/editing my post, so forgive my typos or missing words!!

I ask for your PRAYERS, PRAYERS, PRAYERS! 
My love to you,
Hilary

Bacon, Eggs and Toast, If You Please!!

This post is dedicated to ALL the Dravet Tiger Kiddos and their parents, and especially to one named Hailey who is deep in the fight right now.  I am pretty sure Hailey's mom won't mind me telling just a bit of her story, something that I think is a perfect example of how our Tiger Kiddos simply astound and INSPIRE us with their resilience.  Today in the hospital, after having had at least 14 gand mal seizures in a few hours time, with a smile Hailey asked for some bacon, eggs and toast!!!  This is also after already having been in the hospital for days and days, fighting through seizure after seizure and more meds than most people could ever imagine.  When I saw her mom post that story about Hailey, I couldn't help smiling, even chuckling a bit and telling God THANK YOU!!  I, of course, then thought of Olivia just days ago in the hospital after her Christmas status episode, and how despite MULTIPLE reasons to be either passed out or in a very understandably foul mood, she greeted everyone who walked in her hospital room with sweetest "HI!" and half-smile she could muster (half-smile b/c her face was either paralyzed or too weak, depending on what time of day it was).

This is a resilience of spirit---a resilience deep down into their SOULS that I cannot fathom.  I can only stand in wonderment of.  I can only be thankful to be so close to a person who possesses such a gift.  It is SO easy to focus on the terror of Dravet, because it is SO awful and for so many it doesn't take a day off.  But, I am taking this moment to honor the spirit of these amazing children (and teens and even some adults!).  All they have known is this fight, and yet they FIGHT!!  It isn't as if they had a normal life once and they fight to get back to that place.  They don't even fight for the same reason the parents fight--that parent/child bond, the thing you would literally DO ANYTHING for.  They fight because that's what is in them.  That is how they are wired.  They fight because the light inside of them demands to shine!  They literally fight for their lives, often!!  And AMAZINGLY, ASTOUNDINGLY, BEWILDERINGLY, WONDERFULLY, HEART-WARMINGLY.....when the fight has settled down for the moment, they look at you with a beautiful smile and ask for some bacon, eggs and toast!!!  (or something Keto diet-friendly :o))

So, in this moment.......I honor the warriors of Dravet.  You are all my heroes.

Chasin' Restoration

Our life at this moment is.....a little uncertain.  That seems absurd to even type.  Our life is nothing BUT uncertain.....ALMOST.  When it is uncertain, what can I look to for constancy?  What can I even hope to EXPECT?  Welllll, I CAN expect seizures.  :o(   I can expect LOVE.   Love comes to us from so many different places these days and in many different forms!!  I can expect restoration.....for both of us.

Somehow, sometime, some way.......we are restored just enough to keep on 'keepin on' down this bumpy path.  You know people often say/ask "I don't know how you do it!" to someone in a difficult situation?  (I often say that to anyone parenting multiples!!)  I am told that often, and frankly, I don't know either!!  I have told you before that there are dark days or moments of despair on this journey, and just when I think surely I have reached the end of my functioning---I mean, literally, I have had times that I thought to myself, "This must be it.  I have finally run of out 'gas' in my superhero mom tank."  Somehow, I find restoration.  The tank gets refilled.  It gets refilled, because it HAS TO BE.  It's restore or die.  Apparently, God knows of the heart promise I made to this child, and so HE delivers restoration to us in order to keep on 'keepin on'.

Just to be fair and for clarification, being restored in MY WORLD, does NOT in fact include washed hair, clean laundry OR a clean house--just for starters.  Not even does it include business affairs fully caught up (darn bills are always a couple days late, lately!), trash at the curb on the correct day, beloved friends called back when you meant to :o) (I LOVE YOU!), or fully stocked groceries...yada, yada.  BUT, it might include a clean baby girl :o), who has had all her meds on time (the apocalypse may come but Olivia's meds WILL be on time!!), plenty of sleep, lots of giggles, playtime with her toys, lots of cuddles, a walk in the fresh air if the temperatures permit, hanging out w/our newest family members the Magills or H & J, seeing my Hopelink ladies, and maybe clean sheets on our bed.  :o)

Olivia is restored time and again in an almost supernatural way--sometimes right before my eyes, and sometimes it is a more gradual process.  As worrisome as it is as her mother to wait patiently, God has been faithful to restore her each time she has been dealt a blow.  How thankful I am for that!!!  I like to think of myself as God's assistant down here when it comes to Olivia--LOL.  Sometimes, that means--while I'm waiting patiently, WINK*WINK*--pushing for therapies, braces, meds, etc.  :o)   But, as her body is depleted OFTEN by the unwelcome, permanent guest of Dravet, her spirit NEVER is. 

In the Dravet community, we call our kiddos "Tigers", and we are "Tiger Parents".  (Kind of ironic, since my school mascot growing up was the Tigers.)  Olivia IS a Tiger, indeed!!  I have much more on this topic coming in my next post about resilience.......stay tuned.


May you feel restored in this moment.....whatever that means for you.  ;o)