Friday, March 25, 2011
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.
Tuesday, March 8, 2011
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.
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.
Friday, February 18, 2011
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!
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!
Saturday, January 29, 2011
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)
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)
Thursday, January 27, 2011
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
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
Saturday, January 8, 2011
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.
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)
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)
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