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)

Hope doesn't always live here...

Life at this moment is....better.  Hope has been a fleeting thing for me lately---If I am to be perfectly honest with you.  And, that is what I aim to do here....be honest with you.  I don't aim to list all the details of my life in full, but I do wish to go beyond the surface of structures such as Facebook (which I love, by the way).  I want to share things here in this blog that sometimes might be uncomfortable for you or for me, but I do so with purpose not for exhibitionism.  Not in the least.  I am actually quite private, especially concerning matters of the heart and soul, and I respect the fact that others are as well.  However, this is an incredible journey I am on.  There are others on very, very similar journeys.  I believe with all my heart that there is value in the details of my story, sometimes the greatest value is in the hardest part to share.  That being said, it is hard to admit, but nonetheless true that HOPE has been a fickle little friend to me as of late.

I suppose you might think faced with a serious or tramatic thing in your life that you must at least never lose hope.  You can do a lot of things, just don't lose your hope.  That's not how it goes for me.  I lose it on a regular basis.  In fact, sometimes I wander into the kitchen to see if I left it in there.  Ok, now I'm kidding.  But, seriously, in the moments where despair has replaced hope, I do find myself wandering about the house more, searching for something.  Perhaps subconsciously I am searching for my hope.  Sometimes, I go to a store to look for the hope.  That used to work better when I was younger, but it doesn't work as well these days.  The budget doesn't really allow for it.  So, sometimes, the store is simply the grocery store and the items are simply the basic grocery list.  And, the end result is the satisfaction of having accomplished a necessary task---necessary to live and keep my child alive, so that is worth feeling good about.  Sometimes, I go searching for the hope at a doctor's office.  Eventually, though, I do find it.  I am relying on the professionals to help me figure out how to sustain it.

All I have to do is look in her face, though, to find my happiness....to find my purpose.  That's the easy part.  And the will to keep going?  That never leaves either.

May this day find you full of hope, and if it doesn't.....check the kitchen, maybe you will find your grocery list.

Monday morning for real

Life at this moment is.....hectic, as usual.  It never ceases to amaze how quickly Olivia can cause destruction.  We were sitting here this morning going through the usual morning routine (Sesame Street, milk in a bottle and some dry cereal).  In lieu of watching the Sesame Street for zillionth time in a row, I have taken to my laptop during these times (Good blogging time I'm hoping).  She hopped up and was dancing around to some singing--nothing unusual there.  Then, she started turning circles, laughing and doing little laps around her Dora couch, more laughing.  I was watching her smiling and talking to her when my Mom Radar must have kicked in....she was TOO HAPPY.  Hahaha.  I leaned forward to look at the floor beside her couch and SURE ENOUGH!  That turkey had somehow managed to dump a huge amount of her milk on the floor was marching it all around---hence the circles and laps with all the accompanying laughs.  I had to spring into fast action to get it all cleaned up.  What a mess she had made and so quickly.  Like I said, never ceases to amaze me.

In other news, I got a call from her pediatrician this morning.  He was reporting her lab results to me.  Her UTI has come back.  He said the good thing is the antibiotic they started her on Friday (for the ear infection) is the same one he would use for the UTI.  So, we are already doing what we need to do.  She will go back for a follow-up appt w/him in about 14 days.  She was quite a bit sicker when she had the last seizure (the one caused by her last UTI), so I'm still not convinced that this past one was actually caused by this UTI or ear infection.  But, truly so much of her condition is a guessing game.  This time in her life is when protocols and precedents are being set, so hypotheses and research are vital.  It does weigh heavily on my shoulders, though, that I might "guess" incorrectly or make the wrong decision.  Thank the Lord for that Mom Radar.  It is very useful!!

Well, we gotta get moving along.  Olivia is going to hang out with her friend Parker while I go get a flu shot.

Think we will get any snow tomorrow??

Sometimes you gotta stick with what you know

Ok, so I have to apologize for the switch-up on blogs, but Wordpress was not working for me.  Mainly it was not working because only the original post was showing up, but overall Blogger.com is SOOOO much easier and more user friendly.  My old blog was through this site, and like my title says....Sometimes, you gotta stick with what you know!  So, hopefully, we are truly off and running now. 

Testing Technology

I can even blog from my high-tech phone, so this is just a trial run to see if it really works.  I'm typing under the covers so the light of the phone doesn't bother Olivia.  She has become slightly photosensitive, which means in this dark room, the brightness of the phone becomes a seizure trigger for her.

Well I'm excited to see if this works, and....I'm running out of oxygen under here, haha.  So, I'm going to sleep.

Posted from WordPress for Android

*****NOTE:  this was originally posted through Wordpress, so we will see if there is a Blogger App, but since there seems to be an App for everything--I'm bettin' there is!  And, by the way, it sort of didn't work.  See a future post for more explanation.

Just start where you are....

Life at this moment is...a little stressful!  Olivia needs a nap, but you can't tell her that!!  Ha.  I spose this may not be the best day to start the blog as I have several things weighing on my mind and shoulders, so my positivity is wanning today.  But!  It has taken me the better part of a week just to get this thing up and running---not because it was hard technically, but because it was hard to find enough time all at once.  Sooooo, I'm starting it today no matter what!  Stubborn?  Sigh.  Very.

I wanted to post the link to a very informative website regarding Olivia's condition, Dravet Spectrum Disorder (a rare form of epilepsy). http://www.idea-league.org/dravet-syndrome

Olivia had a seizure (GTC-generalized tonic-clonic, formerly referred to as grand mal) while a occupational therapy this week, so we have been pretty low key since then.  This is such a worrisome time of year with all the illness going around.  Any little virus or whatnot can pose a serious threat to Olivia as they can potentially induce a life-threatening seizure.

Well, I would love to type more, but Olivia is about to dump an entire box of Elmo crackers on herself!!  haha