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)

The Christmas Roller Coaster!

My sweet girl, Olivia, livened up the Christmas festivities for us and some very dear, long-time family friends of ours when she went into a status seizure at their house Christmas night.  She was sitting in the lap of one of the women looking up and off to the left (and was across the room with her back to me).  She wasn't really moving too much and just kept looking up at something.  After a few seconds, I asked what she thought Olivia was looking at--from my vantage point it looked like nothing but wood paneling to see.  She just thought she was looking around at stuff.  I waited a few seconds more, and Olivia was still stuck like that with very little movement.  I walked over to her and sure enough her eyes were stuck looking up to the left.  She was making a few very slow spacey movements like smacking her lips and kind of picking at her shirt with her hand.  I had seen a YouTube video of a seizure like this before, but had never seen Olivia have one.  Realizing that she had now been having it for several minutes without stopping, I began to feel the panic rising in my chest.  I had no specific protocol for this new type of seizure, but as I believed this was becoming a status event (in this case a continuous seizure), I just decided to treat it like all her other status seizures--which have all been tonic-clonic (grand mals).  I took Olivia and her emergency medication and went into one of the bedrooms.  One of the women there is also a nurse, my childhood friend Megan, so I called her to come in the room just to help monitor Olivia's respirations as I gave her the emergency medication, Versed.  I also decided to have EMSA called.  The emergency medicine appeared to have no effect, and the seizure was progressing to now involve tonic-clonic movements (the jerking/convulsing).  I was worried the medicine might not work because Olivia has had such nasal congestion from allergies, and her medication is administered in the nose.  Her neuro later confirmed that the congestion is most likely what kept the med from stopping the seizure. 

After a rocky episode with a couple of the EMSA workers (sometimes it's smooth sailing for us and sometimes we get those know-it-alls who don't really want to listen to the very important special instructions that go along with Olivia, PER HER DOCTOR.  But, that's a whole other blog post by itself.), we made it to the emergency room by ambulance with Olivia still seizing.  They got an IV placed, and proceeded to have to administer soooooo much medication it was bewildering.  But we had done this before, and I wasn't surprised it took so much medication.  Because she was having a status complex partial seizure (as opposed to her usual grand mal), the ER doctor was able to give the medication at a more steady pace as opposed to just snowing her with it.  By going the steady route, he greatly reduced the chances of Olivia having to be intubated.  I was totally on board, as long as it was safe seizure-wise, with anything that would keep her off of a ventilator.  I did NOT want to relive that experience.  Not on Christmas for pete's sake.  Not ever, actually.  Once is enough for us, thank you very much.  But, reality tells us we have more tickets in that lotto coming our way.

After a total of an hour and 35 minutes, her seizure was finally stopped.  And, I started to breathe again.  A little bit.  The bottom line for people who have the type of epilepsy that Olivia does, is that the seizures have to be stopped sooner rather than later.  The longer they go, the MUCH harder they are to stop, and of course more dangerous.  The docs wanted to keep her overnight since she'd had so much medication.  She woke up about the time we got to the pediatric floor, and she stayed awake the entire night.  The nurses couldn't believe she was awake after all those drugs.  I hated that she was awake, because I knew she had to be miserable, but I wasn't really surprised.  She is an ox.  She was experiencing Tod's paralysis on her left side, the side that had been seizing, for most if not all the night.  That was a new thing for Olivia, and another thing I had only heard about--thankfully!--from a dear friend, so I knew to remain calm about it.  I cannot tell you how invaluable the information and insight is that I have gotten from the parents of other epileptics and epileptics themselves.  Reading their blogs, watching their YouTube videos and reading web page forums has proven to be both life-saving and peace-preserving for Olivia and me.  I strongly encourage anyone with a story to share and the ability to share it, to please do so!!  There are people out there who need you.  People like Olivia.  People like me.

Maybe someone like you needs to hear this story I am telling now, so I will continue.  I am sorry it is lengthy, I will try to keep it on point.  As I said, she stayed awake the entire night.  She finally fell asleep about the time she normally wakes up (8:00a), and slept for several hours.  When she woke, the paralysis had resolved but her left side was much weaker than the right, though she was VERY weak all over.  She couldn't walk, couldn't really stand, but could sit up if positioned by someone---pillows had to be all around or a person nearby because she would easily topple.  She was still vocal and even verbal but mostly babble with a few of her words mixed in---lots of Ba, Ba, Ba, Ba or Da, Da, Da, Da.  Her appetite was strong but it was hard to keep anything down after all that medicine.  So, there was some vomiting for the first two days.  I just figured out to limit her liquids on an empty stomach.  Plus, while she was in the hospital, they gave her some Zofran (anti-nausea), which helped quite a bit.

By Monday, she was able to walk with assistance, was able to eat without problem and talking was improving even more.  The most significant thing still lingering was the fatigue.  She could only tolerate being awake a few hours at the very most.  She still does the extra-clingy behavior, too, that she has done ever since her very first seizure.  This amounts to her pretty much not allowing me to put her down AT ALL.  Sometimes, not even when she is asleep---she would wake up as soon as I put her down.  This is a hard thing to work around for a single person, let me tell you!  Plus, little miss isn't so little anymore.  But, I am trying to figure out little shortcuts for things all the time to keep life running smoothly, especially in these times when she is extra, extra high maintenance.  Every day since Monday, she has shown improvement in all areas.  She can walk by herself again today (Wed), but she is still more wobbly.  Her SMO's (ankle braces) have been such a huge help!  She is still a little more babbley rather than using her actual words--in contrast to what she was doing this time last week.  And, she still is more tired than usual but much better than she was Monday, for example. 

So, I would say she is pretty well on schedule for her typical bouncing back from a bad seizure and 2 weeks from now it will be hard to tell she is struggling.  Only I will be able to notice some differences, I bet.  I hope.  The biggest thing to suffer long term always seems to be language, but she is in speech therapy twice a week now.  So, I am very hopeful this will be a powerful tool against hits like this to her language ability.  She has already had two sessions this week, and I think it has been helpful to get her back into the routine.

I am going to end this post now, because I am tired of hearing myself talk--in my head of course.  I don't actually sit here typing, talking out loud.  :o)  And, because this post is VERY long.  There is quite a lot going on with my girl, so I will try to post again very soon.  Some very wonderful positive things to post......and some pretty heavy things to post.  (And just maybe my EMSA rant, too--ha) 

We shall talk again soon, my friends.

All bottled up!

I feel so lost and overwhelmed today......as I did yesterday, too.  Olivia had her 18-month-old check up yesterday morning, and her pediatrician (he is a neuro-developmental pediatrician, by the way, and I like him very much) spent a very long time talking to me about a few topics.  One of the biggies....FOOD.  Or shall I say, MILK/BOTTLE.  The bottle era is over.  She has been on a sippy cup for water for a very long time, but has staunchly dug in her heels when it comes to drinking milk out of her cup.  She had to know that would mean the end of milk in her bottle.  She would have been right.  After trying lots of methods over these many months to coax into the switch, I have conceded that cold turkey is the way to go--PAINFUL for everyone involved (and even passersby!) tho it will be.  Today marks DAY ONE of no more bottle ever again, and she is hating the guts out of today.  She angrily launches her sippy cup as far as she can anytime I hand it to her, clearly sending me a message.  This is so hard to do, but so necessary.  I do think she can handle it.  It just isn't going to be fun.

The doc talked about Olivia's need for boundaries as a child in general but also as a special needs child and, on top of that, a very strong-willed child.  We discussed the inherent proclivity a parent might develop to soften boundaries because of a child's special needs, and how that will truly have a devastating outcome on the child's personality and even on her development.  It was a wake-up call for me to realize that we are entering a new phase of Olivia's development, and I must revamp our schema.  As the doctor spoke, I felt the mantle of parental responsibility growing heavier and heavier.  In fact, several times I noted how I was sitting and changed positions because I was beginning to literally slouch down into the chair too much.  Of course, the entire time all of this was going on, Olivia was all over the room--happy one minute, crying the next.  The only thing that got her quiet??  HER BOTTLE.  *sigh*

Orthotics and Wishlists!

Olivia got fitted for some orthotic ankle braces yesterday.  They are called SMO's, for those of you in-the-know, ha.  Of course, I actually couldn't tell you what SMO stands for, so don't ask me.  :o)  I am sure the O is probably for Orthotic, but that's all I got.  I can tell you they will come up to slightly above her ankle.  She has been having a few problems with her walking.  One problem is balance, also called ataxia I believe.  We aren't sure what the cause is, since she has several potential causes.  Her condition itself, her medications, the after-effects of the big seizures, or even ongoing seizure activity (which we don't know that she has--but Dravet kids can have this) are some of the potential causes for the balance issues.  Additionally, she has a problem with her ankles rolling.  I believe this is what they call over-pronating.  (I sure hope I am getting all my facts correct--if anyone sees that I am not, please correct me in the comment section or message me!  Or, if you ever have more to share on a subject I am discussing, please share!)  So, the ankle rolling obviously adds to the balance issue as well as causes her to fall.  All of this makes her unsteady at times, but surprisingly, has not caused her to regress to crawling at all.  So, that is a big praise!

She is adapting to her situation by holding onto things to steady herself or reaching for my hand, but she doesn't often ask to be picked up--another big praise.  She still very much wants to walk and be independent.  Yay for that strong will!  It has a purpose.  She is more unsteady first thing in the morning and when she gets tired.  The rest of the time, it just seems random.  I can't seem to figure out a pattern or trigger to it.  Enter orthotics.  The hope is the ankle braces will support the ankle enough to stop the rolling and to afford her more confidence (the confidence that her legs won't be randomly giving out underneath her), yet that they won't be so restrictive to keep her from moving and playing as she is pretty much used to.  This is the plan, anyway.  We hope to have them in about a week, so I'm excited!

For those of you who have asked about gifts or were wondering about it.....I have started a Wishlist for Olivia on Amazon.com.  Here is the link to it:  http://amzn.com/w/109EOV0T8KJNA   If that doesn't work, you can search for it by the email address hray75@yahoo.com.  I am just going to keep the list going and updated.  That way, in the future for birthday, etc., it will be here.  It is also listed in the profile section here on Blogger.  This is just such a convenient thing--loving Amazon.

Well, for those of you that are also on Facebook with me, you might have noticed my little bear was very busy last night creating some extra work for me to do this morning (for those of you not on Facebook, she completely unloaded the bottom 2 drawers of her dresser out onto the floor of her bedroom floor--it was a huge pile of clothes.  And, she did it fast!!  haha).  So, I better get off the computer and get back to the chores of the day!  Or......maybe we will just go for a walk.  Somehow I think she might like that better than chores, what do you think??  :o)