Dept of humanity

Going to my local dept of human services office (or as some might know it, the welfare office) always evokes a strong and uncomfortable mix of emotions and thoughts. It creates a clash of my middle-class upbringing and my current below-poverty-level existence. The multiple lenses I view life through are brought into stark disparity here. In most other places of my life, these lenses I've acquired, developed and cultivated throughout my life work together quite well to help me instantaneously see multiple sides to any given situation. But, here, for reasons I'm not fully sure of yet, this perspective I have now just highlights the internal conflicts I still have unresolved. 

If you have ever thought Sociology was an "easy" line of study, or unnecessary, then you don't see what I see. The big picture of our society is so insanely complex. There is nothing black and white about anyone or their situation. Untangling the twists and turns of each persons journey and understanding how they effect each other is pretty much an possible task. 

More later...I am crawling the walls here, waiting so long to see our worker. 

To Mother, on this Fall morning.

Gosh, I want so badly to drive to your house, to make that walk up the sidewalk and let Olivia ring the doorbell like she always loved to do. To see your grinning face as you open the door and tell us hello, come in. To watch as you and Olivia embrace in such a joyous and loving hug, then I get to hug your neck and kiss your cheek. Olivia immediately does as she always does, takes off her shoes and puts them in the spot by the door and quickly chases phoebe in an attempt to hug her. Phoebe is too excited and a little scared, haha, so we simultaneously try to calm them both down. She would then ask you to turn on Super Why as she secures her spot sitting at her little table. I love that you had a table there just for her. 

Gosh, I want to feel that safety and familiarity. Nothing is actually perfect there and yet everything is as it should be. Without you, nothing is quite right anymore. 

I search endlessly and futilely for that place of comfort. It is simply gone. Just...gone. 

Why can't I find something comparable, something to fill the gap? Why won't this emptiness fill in and why won't this pain begin to heal?

Do I need to stay near to the place of familiarity or do I move away? I still feel so lost, so confused about how to really move forward without you. 

Remember the good times, the bad times, the wisdom, the humor, the imperfections, the goodness, the ultimate gift of unconditional love and acceptance--the truest, most perfect act you ever did as a mother. But, none of it stops the pain. None of it changes the fact that you are simply gone. Just...gone. And, part of me is gone, too.

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