Archive for the ‘The Vista Diaries’ Category

As Vista gets older and is able to communicate more, we discover more and more about her and the weird and wonderful ways that her little brain processes things.

Our latest discovery is the fact that consequence or cause and effect part of her brain doesn’t work. It’s just not there. She has absolutely no grasp of one thing affecting another. You cannot use ‘if/then’ statements with her.

Think about how much of our parenting is based on consequence reaction.

‘Stop hitting your brother OR you’ll get a time out’
‘Eat one more bite of dinner THEN you’ll get desert’

or our personal favorite

‘If you take your meds like a big girl, THEN you get *insert anything here*’

Vista’s comprehends none of it.

And we’re not sure if that’s just the way it’s going to be or if it’s something we’ll be able to teach her.

Right now, we suspect that may just be the way it is.

So dear internet people, I, once again, need your help.

How do you discipline a child who doesn’t understand consequences?
How do you cajole a child into doing what you need them to do when they don’t understand ‘action/reward’?

Help. I needz it.

Sometimes I look at Vista and there’s this sense of awe and amazement that this little child is mine.

But as each day passes, she’s less ‘mine’ and more her own person.

Sometimes I have to remind myself to step back and remember that the way she reacts to things isn’t necessarily going to be the same way I react to things.

She has her own way of doing things.  And is definite about how her world is structured.

As time goes on, we realize more and more, that she’s not fitting into our world but molding us into what she needs her world to be.

And that’s not without it’s challenges sometimes.

One of our biggest frustrations has been around asking her to do simple things.  Every day tasks.  Using words she knows. And yet there seems to be no comprehension.

We assumed it was her three year old self being, well, a three year old.  Defiant.  Willful.  All the things a child that age can tend towards.

Until we did one of a speech and language assessment with her a few weeks ago.

Her verbal scores came back as expected.   She’s progressing wonderfully in her talking and ability to communicate.

Her receptive scores, those that indicate her ability to take in and process what we’re saying, were a surprise.

Despite the fact she knows the words, the meaning doesn’t always translate when you speak with her.

So when we we’re frustrated over her seeming lack of comprehension, it’s because… yeah… she really doesn’t understand.

Complete *headdesk* moment.

A neuropathway issue.  Apparently it’s not all together uncommon in kids with her types of brain malformations.

But now we know.  And that means we can start focusing on trying to rewire those pathways.  Because a childs brain is an amazing, changing, thing.

She may not understand us, but we’re slowly learning to understand her better.  And changing the way we do things to help her be who we know she can be.

We’ve started adding back in some signing, to see if visual cues help with the comprehension.  But beyond that, we don’t have a lot to go on.

So I’m turning to my brilliant blogging / twitter friends.

Suggestions on what you would do?  What you’ve seen work? What you think we could try?

Friends and family who live out of town have been asking for a Vista update.  So if you’re not in the mood for medical drivel skip over here where Kim is asking the craziest place you ever had a quickie.  Oh come on.  You know you want to share…

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Even though I haven’t been blogging and tweeting much about it, Vista has continued to seizure despite the meds she’s on.  She did really well on her first med, Clobazam, until a growth spurt rendered it useless.  She was on the highest dose do the decision was made to add a second drug, Trileptal.

After the Neuro prescribed the second med, they also decided they wanted to see her in office and reassess.  They’re very concerned at the amount of regression and behavior changes we’re seeing in her after her seizures.  So, getting her seizures under control has become priority #1 in her medical regime.

At that visit we also got V’s latest diagnosis:  Symptomatic Partial Epilepsy

Not a huge shock, since she’s been seizuirning for 3yrs.  What it means is she’ll have to go 2yrs seizure free on meds before they’ll try to wean her off of them to see if she might have grown out of the seizures at some point.

Unfortunately we haven’t made it two weeks yet.

V hasn’t done really well on the Trileptal.  The higher doses make her really irritable and the lower doses still aren’t controlling the seizures.

So, they’ve now added in a third med called Valproic Acid.  She’s only been on it a few days, so only time will tell how this one works.  We’re keeping our fingers crossed that third time is a charm.

The down side about the Valproic Acid is that she’ll need her levels checked.  This means the blood tests.  But really, if it controls the seizures, it’s worth a few needle sticks.

On the upside, since her last growth spurt she seems to have mostly outgrown her dairy allergy.  Yay!  Pizza and ice cream for everyone!  We still have to watch how much dairy she eats (too much will upset her tummy a bit), but all the severe symptoms are gone.

All and all, she’s doing not too bad.  She’s growing like a weed (my 3yr old is wearing size 6/7 shirts!), loving summer sun, and content knowing she’s an adored princess.

I’m pretty sure Vista’s therapists think I’m a complete flake.

We’re having to make the dreaded preschool decision for this fall.

And when you have a special needs kid, it’s not as easy as just picking one and going.

First there’s finding a place that will take ‘early entry’ (take them when they’re three instead of four).

Then we have to find a place that takes kids who aren’t potty trained yet. And that little criteria pretty much eliminates every preschool in our area unless Vista has an aide. Which at this point isn’t a given.

So at this point we’ve put her name in at both school boards (public and catholic) in the off chance she does get an aide.

But now I’m sort of backpedaling. I’m not convinced that putting her in preschool this fall is the right thing for her after all. She’s going strictly for the socialization aspect, but are there better arenas for that?

This past week of seizures has really made me reconsider. How are other kids going to react to a child who acts one way for a month then has a few seizures and has a complete personality change? Aide or not, other kids don’t react well to that sort of lashing out.

And Vista’s birthday party on the weekend was another event that made me rethink this whole preschool decision.

There were about 10 kids there (ranging in age from 2 – 10). These were good kids. Well behaved kids. Kids who weren’t wild and screaming and acting like idiots. Kids with LOTS of parental supervision. Ten kids is a VERY small preschool class. Only one school, in a small town south of us offers a class of that size.

And Vista lasted one hour with 10 kids before the meltdowns started. Before the pouting defiance started. Before she was miserable and overwhelmed. To the point where we didn’t open presents at the party because it would have been too much for her.
To the point where she didn’t even eat a piece of the special no-cheese pizza we ordered for her or her birthday cupcake because she was so stressed.

She latched on to her BFF, Gracie, as soon as she arrived and wouldn’t let her out of her sight. But Gracie isn’t going to preschool next year. So who would be Vista’s anchor in the sea of toddler chaos?

As much as Vista needs the socialization and to learn how other kids her age play, how much is she really going to get out of it if she’s completely overwhelmed with the situation?

So maybe we’ll keep her at home for another year and let her be a kid for a bit longer.

And maybe we’ll throw schooling right out the window.

More and more people out here are moving to homeschooling, sick of the bullying that goes on, sick of the substandard education that’s provided as a result of over-worked and under-paid teachers.

And Vista with her follower copy-cat mentality, poor coordination, but bright mind would be a prime target for bullies. I know. I was too. It ruined my early school years. I don’t want my child going through that.

What a choice. Schooling, socialization, bullying, questionable education vs homeschooling, butting heads, and losing my sanity.

Which would you choose?

It’s 11:30am and I just watched Vista crawl up on the couch in the living room and fall asleep.  I waited a few minutes then went over to her, gently picked her up and carried her to her bed and tucked her in.  She barely stirred as I walked with her down the hallway.

And now we wait for the chorus of “Oh man, your three year old naps?!?  You are so lucky!!”

But right now, I’m not feeling really lucky.

Because for us, that nap doesn’t mean she’s tired, that nap means her seizure meds aren’t working.

She had two seizures over the long weekend.  One on Sunday while she was out with her respite worker, Dorothy and her family.  Then, yesterday, we were over at her Dorothy’s house (as over the past year they’ve become very good friends of ours), and just before dinner she came and sat down next to us and had another seizure.

She seems to know when she’s going to have them as she always manages to be sitting down when she has one.  On Saturday, she crawled onto Dorothy’s lap, told her that her head hurt, then had her seizure.  I don’t know what her warning is… I suppose I won’t know until she’s older and understands enough that we can ask her to describe it.  But it does help calm the fear that one day she’ll have one while walking down a flight of stairs or something.

So here we are at today.  She slept for 14 hours last night after her seizure.  Which is how we confirm if it was a significant seizure or not.  Minor seizures don’t affect her.  But when she sleeps from 7pm to 9am (her normal sleep time is 9pm – 5am)…yeah, it tells me we have a problem.

And now she’s sleeping again after only being up for two hours.  Which means I probably missed a seizure while she was outside playing.  That’s three in three days.  And that?  Is not a good thing.

So here we are again.  Waiting for a call back from her neurologist and probably playing the medication game.

Part of me wants to sob in frustration.

Part of me is worried about the effects these seizures might have on her speech and motor skills again.

Part of me wants that magic cure, dammit. Something we can do so she’s not having to go through this anymore.

But mostly right now, I just want her neurologist to call back so I can find out what then next steps are to getting her well again.

Dear Vista,

I can’t believe it’s been three years already.

You’ve been through more in your three little years than some people go through in a lifetime.  And yet everyone always comments about how you still manage to smile through it all.

It’s such a special talent you have, that smile.  We can be anywhere, and you’ll find the grumpiest person and flash that special smile at them, and they can’t help but smile back at you.  You make the world a happier place.

I can’t even begin to tell you how proud I am of you.  It makes me glow inside to hear your doctors call you their ‘little anomaly’ as you do everything they say you shouldn’t be able to do.  Like walk.  And talk.  And never mind the fact that you already know your alphabet, numbers, and colors, and are trying to get us to teach you how to spell.  You soak up all the knowledge we give you and more.

I know this hasn’t been an easy road for you, but you’ve walked it with such grace for one so little.

I also know the road ahead is going to be filled with even greater challenges.  But remember, your daddy and I will always be there to walk it with you,  and to carry you when you get too tired.

You looked at me yesterday morning and asked “Can I be your baby?”  And I told you that you would always be my baby. My very special little baby, no matter how old you get.

I love you so much.

Happy 3rd Birthday, my little princess.

We were up bright and early this morning.  4:30am early. Which in my opinion is still night time.  No sun, no morning.  I’m all about simple concepts.

Bil tried in vain to convince Vista to go back to bed.  And she actually did lay down for a few minutes.  But the second she heard him leave for work, she came bounding into my room, flipped on the light, and screamed

“GET UP MOMMY”

I may have mumbled something about shutting off the damn light, and ungodly hours, and someone being Satan’s spawn.  But it’s all kind of blurry.

Eventually dragged my carcase from the bedroom to the kitchen, then crawled to the couch, hugging the precious bounty of a cup of caffeine and flipped up my laptop screen.

And the first thing I saw was this

My initial reaction, knowing Nic like I do, was …

Uh…WTF?!?

I figured maybe her husband had started slipping something into her coffee after her call to him the other day.

Turns out it was a total false alarm and she’s still crazy.  *phew*

But, in my sleep deprived state, the word rainbow stuck in my head, kind of like one those irritating songs that get stuck in your head.  Like going through the ‘It’s a Small World‘ ride at Disney Land and then you’re humming that stupid tune for the rest of the day and you want to repeatedly stab yourself with an ice pick to make it stop.  Hypothetically speaking, course.

Luckily I remembered seeing someone in my blog reader had made some really cute rainbow cupcakes the other day, so I spent half an hour flipping through old posts looking for this.

And because I’m a glutton for punishment, V and I spent the afternoon covered in cake batter and food coloring!

Now could someone please come eat them, because I can feel my ass getting bigger just looking at them.

I can admit when I’m wrong. Only because it happens so rarely. I mean, everyone knows I’m like the next Mary Poppins – practically perfect in every way. (Stop snickering or I’ll beat you with my umbrella)

Well, yesterday I was wrong, not once, but twice. I KNOW! Mark the day on your calendar because it will never happen again.

I publicly stated that I was sure that the EEG we had slated for Vista yesterday would come back as normal. Same as the other two had. I mean, for one of those, they had her hooked up for 24 hours and it was perfectly normal. Why would I have any reason to believe they’d see anything different on a half hour EEG? Especially since we weren’t able to get her to sleep during it, like they needed. All that sleep deprivation for nothing.  Can we say cranky? (Me, not her).

But… wait for it….I was wrong. What little bit of the EEG they were able to do came back abnormal, showing spikes of electrical activity coming from the back of her brain.

I’m pretty sure my jaw made a nice clunking sound as it hit the floor when her neurologist told me.

To say I was not expecting that is an understatement.

Which led to being wrong a second time in one day.

I was positive that we’d get the nice shrug from the neurologist accompanied by the words ‘Welllll… we don’t know.  Call us if her seizures get any worse”, as they sent us home again.

I got the first part right.  Does that count?

They used words like ‘odd’ and ‘unique’ to describe V’s seizures.  Yeah, my kid’s all sorts of special.  But I already knew that.

What they think is happening is Vista will have a seizure, which causes loss of speech, motor skills, and behavioral issues.  Then two to four weeks later she’s having another seizure that resets whatever the first seizure did and returns her to back to where she was before the first seizure. Did you follow that?  Let me put it in simple terms.  It’s like flipping a light switch on and off. And on. And off. And on.  And off…and…yeah, well, you get the point.

The problem is, we’re lucky if we see maybe a third of the seizures we think she’s having (which is why it’s taken so long to puzzle this out), because they happen at night, while she’s sleeping.  Which could be why she wakes up in the middle of the night screaming sometimes.  Ever wondered what a banshee sounds like?  Come for a sleepover.

At any rate…

The abnormal EEG combined with the level of regression from her last seizure had her neurologist concerned.  Very concerned.  Concerned enough that, for now, they’ve decided to put her on anti-seizure meds.

Luckily the medication they chose (clobazam) has fairly mild side effect.  Stuff like ataxia, somnolence, diplopia, and dysarthria. Don’t those sound scary? Let me translate: loss of muscle coordination, drowsiness, double vision, and slurred speech. So, in other words, she might act like a teenager on a bender. Yay.

The best part is, they told me this drug is part of the benzodiazepine family. Also know as? Anyone?
That’s right, my two year old is on Valium! I’m thinking we’ll try for Xanax by the time she’s three.

Sometimes I feel like, as a mom, I have these wonderful, magical powers.

Have a boo-boo?  One kiss from my lips makes it feel all better.

Crying over spilt milk?  One hug with my arms wrapped around you makes it feel all better.

Scratches, scrapes, hurt feelings, and insecurities are no match for my mommy powers.

But right now we’re battling sometime that can’t be fixed.

Vista’s brain.

Would it be ironic to say that it has a mind of it’s own?

Because some days it really feels that way.

We finally got her EEG booked for March 9th.  Yeah, a month away.  This will be her third and that’s 3 too many.  Believe it or not, out of all the tests she’s had in her life, these EEG’s are the worst, because it involves me holding her down while she screams and cries and screams as they attach the electrodes to her head.  After getting her all worked up, I have to calm her down enough to fall asleep.  And after sleeping for 10 minutes or less, I get to wake her up.  I end up going home after them and crying as Vista clings to Bil wanting nothing to do with me.  And I can’t blame her.  I wouldn’t like me much either after all that.

But what’s the most frustrating is that I know the test will come back normal.  Just like the last two.  So I have to put her through all that for nothing.  Or rather, so we can see the neurologists so they can tell us “Yep, everything still looks OK, other than her normal brain malformations.  We don’t know why she’s seizuring or why she regressed so much after her last seizure.”

Did I mention being a mom also makes you a psychic?

I had a long talk with Vista’s Speech and Language Pathologist yesterday as she put V through her paces.  She’s confirmed for me that it’s not uncommon for people to regress after every seizure.  It’s just something that is.  And will be forever.  As in, when she’s an adult and has a seizure, she will experience loss of skills.

I watched, as we talked, as Vista struggled with a toy that a month ago had been a breeze for her to play with it.  A toy whose ins and outs she had mastered.  Now, it’s like she’s seeing it for the first time.

It makes me sad for her.  It makes me frustrated for her.  It makes me angry for her.

And Vista is all of those things right now as she struggles to make herself understood.  She went from being a toddler who was well on her way to being at a normal speech level.  She was talking in sentences.  She was easy and clear to understand.

Now our days are filled with “I’m sorry, sweetie, I don’t know what you’re saying” and she screams the same garbled words at me over and over hoping that volume will make me get what she is trying so hard to communicate.  Words that only weeks ago, I understood perfectly.

How do you explain to a two year old that half of what she’s trying to say is now reduced to babble sounds?  You can’t.   How do you explain that even though she was able to open that door a few weeks ago, it’s going to take some time for her to learn how to do that again?

So the next couple of months will be spent trying to return her words and motor skills to her.  And trying to manage the frustration and anger, both hers and ours.

I’m hoping one day we’ll learn this dance.  One step forward, two steps back, side shuffle, side shuffle. This stumbling along, trying to figure out what comes next is making my brain and heart hurt.

Those of you that follow me on Twitter have probably heard about Sam.

Sam is Vista’s special friend.  And we’re pretty sure he’s a ghost.  Yeah, I’m living in a real life haunted house.

I can remember vividly the first time Sam showed up.  We we all  sitting in the living room and all  of the sudden Vista started to talk to ‘Sam’.  Sam was apparently standing right behind me as I sat on the couch *shudder*.   Vista was happily chattering to him and trying to hand him things.

Bil and I just looked at each other.  And decided she had an imaginary friend.  How nice for her.

But on the off chance, I called my mom and asked her if the name ‘Sam’ rang any bells for her.  As we ran through the family roster of the dead we came up blank.

I was still clinging tightly to the fact that this was an imaginary friend.  Perhaps, I reasoned, she’s talking about Sam from the Wiggles.  She loved watching the Wiggles at that point.  Perhaps she had just picked that name.  So, I put the Wiggles show on and when Sam showed up, I pointed to the TV and said “Look!  Sam!  Is that your Sam?”

I’m pretty sure Vista is going to be really good at that ‘OMG you are a complete moron’ look when she’s a teenager, because she threw that look at me and slowly explained to her idiot mother “Sam on TV,” pointing to the tele.  “Not Sam,” pointing to the other end of the room.

Well, fine.  Nix that idea.  But, I still wasn’t giving up on the imaginary friend idea.

Until the morning I went to get Vista dressed.  I conversationally asked her “Where’s Sam?”

She pointed to the floor next to her.

“Oh, he’s sitting next to you?” I said, very pleased with my deductive reasoning skills.

I got the ‘you’re an idiot’ look again and she patiently explained “No.  In ground…. buried there.”

I have to tell you, hearing your two year old tell you about someone being buried in the ground (they certainly don’t teach that on Dora or Sesame Street) is kind of a conversation killer.

So I changed gears.  Fine, Sam probably wasn’t just an imaginary friend if he’s buried in the ground.  So we played 20 questions with a 2 year old with limited vocabulary.

Q: Is Sam a boy or a girl?

A: Boy

Q: Is Sam a little boy like [cousin] or is he old like Daddy?

A: Like Daddy

Q:  Is he old like Grandpa or just old like Daddy?

A: Old like Daddy.

Alright, so we had a male ghost, somewhere in the 20 – 50 age range.

Q: Is he wearing a hat?

A: No.  He…  *at this point she started point to her forehead*

Q: Does he have an owie on his head?  A bandaid?

A: No…  *it took a few days, but we finally figured out that Vista was trying to tell us he was wearing a headband of some sort, after she started wearing insisting on wearing her hairbands around her forehead rather than to hold her hair back*

We continued playing these games.  Showing pictures, asking questions, guessing answers.  Near as we can tell, Sam is an adult male, Native American, ghost… who likes to swear.

Oh, did I forget that part?

Yeah, I came in one day to get Vista up from a nap and she was happily chattering to Sam.  And they were talking about ‘sunny beaches’

I sent Vista out of the room to go play in the living room, and turned to (where I thought) Sam was.  I gently explained to him ‘Listen here you son of a bitch.  You teach my daughter to fucking swear and I will exorcise your ghosty ass.  Are we clear?’

I’m assuming he got the message, because there’s been no more mention of sunny beaches or any beaches for that matter.

But then, a few months ago, Sam went away suddenly.  Vista explained he had gone to the mountains for a while.  I smiled and nodded like this made sense and figured maybe we were rid of our ghost for good.  Not that I really minded him.  I mean, he seemed to be friendly enough.  And Vista certainly enjoyed talking to him.  On days when he would chat with her as she woke up from a nap I could here fits of giggles.  But still.  A haunted house really doesn’t draw friends to want to come over for coffee.

Months went by, and no Sam.  Until about a week ago.

Vista woke up and started talking about Sam again.  I figured, not a big deal.  So he’s back.  Good for him.

But, something’s changed.  Or rather he’s changed.  He seems to want to be more helpful.  Which is nice… but, dude, it’s creeping me the fuck out.

The first incident was the other day when Vista and I were in the living room.  She was dancing around and I said “Should mommy put some music on so you can dance?”

As soon as I said that the DVD player turned on.  Now, that, in and of itself, I could ignore.  But we have one of those fancy players that also acts as a radio tuner and you can hook your ipod into it.  We have never use the radio part (because the reception is crap and while I’m pretty sure there’s something we could do to fix that, we’ve never bothered and just don’t use it), and very rarely use the ipod dock, so it’s always set to play DVDs.  Except when it turned on, it was set to a radio station playing music.

OK, I must have sat on the remote or something and accidentally turned it on.

Except when I stood up to look, I saw the remote sitting across the room from Vista and I.

I looked at V.  “Where’s Sam?”

“He just went outside”

“Yeah I bet he did.  Tell ghosty boy to quit touching Mommy’s technology”

I walked over and shut the DVD player off.  I wasn’t in the mood for dancing anymore.

Then the other day, I went to put Vista down for a nap.  She laid down in her crib and I was tucking her in asking her if she wanted me to put her white noise machine on for her… when her Winnie the Pooh music box turned on by itself.  Neither Vista nor I were anywhere near it.  And not only that, it’s not a little push button switch to turn on, that I could have hit accidentally this time.  It’s a slider.  And to put it on the song and setting that it was on the slider has to be slid down from it’s off position at the top, alllllll the way down to the bottom position.

I turned it off.

“Where’s Sam?”

She pointed to the end of her crib.

“Could you tell him to stop doing stuff like that please.  It’s creeping Mama out.”

I got a nod from her.  I finished tucking her in and let her sleep.

Oh, but the best was yet to come.

This morning I woke up to hear Vista chattering through the baby monitor (Yes, she’s 2.5 and we still use a baby monitor.  Don’t judge).

I looked at the clock.  7:00am.  Bil would have gone to work a few hours ago.  So it was time to get up and grab a quick shower before I went in to get her.

Until I heard a male voice respond to one of Vista’s chattering questions.

A voice that I didn’t recognize.

A voice that certainly wasn’t her father’s.

I went racing out of my room and threw open her door…. only to find her alone in her crib.  With no one else in the room.

“Hi Mama!”

“Hi baby.  Who were you talking to just now?”

“Sam….and my dollies”

Holy fuck.  Had I just heard her ghost over the baby monitor???  Are you fucking kidding me??

I’ve come to the conclusion we have one of two things going on here.

Either

1. Vista has a friendly ghost who watches over her and likes to make sure she’s happy.  And who now seems to be able to turn on things in the house and make himself heard…..or
2. I’m loosing my ever living fucking mind

I’m kinda leaning towards number two.