The Vista Diaries

Snow Day

snow Snow Day

It’s Genetic

I can remember sitting in high school biology and being fascinated by genetics.  All the weird traits that are inherited from one of your parents.

Did you know being able to roll your tongue is a genetic trait?  So is having dimples.

That second toe that you have that’s longer than your big toe?  You can blame that on your parents too.

Part of the interest, for me, came from being adopted.  These little dominant and recessive genes gave me a peak at two people who were, at that time, unknown to me.

Now that I’m a parent myself, genetic has taken on a whole new level of interest.

It’s fun to sit there and stare at Vista and catalog all the things that are ‘mine’ and all the things that are from her dad.

Blonde hair – definitely from Bil.

Blue eyes – well both of us have blue eyes, so it’s hard to say who her eyes look more like.

Her chin is definitely mine.  And so are her ears.

Since she’s been born, though, we’ve also been exploring genetics on a different level.  Scientists sit in a lab somewhere, combing through her DNA strand by strand, trying to find that one little piece of code that’s not just right.  If they ever find it, then it’s becomes Bil and my turn to have our DNA examined to see if the uniqueness that is Vista comes from one of us in particular.

As she gets older, though, we discover more and more, on our own, that has been passed on to her.

If you follow me on Twitter or Facebook, you know that V’s not been totally well lately and no one’s been able to figure out why.  She’s had a rash on and off, she stopped eating, has lost a lot of weight, and had one ER visit for fluids because she’d become so dehydrated.  The big discussion has been – are her new anti-seizure meds to blame.

The answer?  Maybe. Depends on who you talk to.  The ER doc says probably, the neuro says no, family doc say perhaps, and the allergist we saw today says probably not, but it is a possibility. Unless we take her off of them there’s no way to know for sure.  They’re working right now, though, so there’s no way we want to do that.  Taking her off means looking at brain surgery and we’re just not ready to face that yet.

More than likely she has some sort of virus that her body is fighting that’s caused her to lose her appetite.

And the rash?  Well she can thank genetics for that.

We found out today that Vista has chronic urticaria.  That’s a fancy way of saying that she’s super susceptible to hives.  Anything could make her react.  Being too hot, too cold, eating something that her body reacts too (not to be confused with an actual food allergy).  Or, like in this case, simply coming down with a cold, flu, or other virus, can cause her to have hives on and off for weeks or even months as her overwhelmed system tries to fight it off.

She can thank both Bil and I for this.  We both were like this as kids too.  I still quite often get hives on my arms from eating strawberries (not that a little thing like hives will keep me away from a bowl of strawberry shortcake).  And anyone who has ever had a drink with me has seen the ‘allergic flush’ that turns my skin red as soon as I have liquor (doesn’t keep me from drinking either.  heh)

The good news is that it’s more a pain in the ass than anything else.  And? It gives her another thing to blame us for, years from now, in therapy.

Rather than ask for donations to her therapy fund, I’d rather know – what’s your favorite trait that you’ve passed on to your kids? Or better yet…  which one are you going to get blamed for years from now?

 Its Genetic

In The Mirror

I lay out her new barrettes for her to pick from this morning.

“These ones mommy.  They match my shirt.”

I pick up the ones with pink polka-dots and clip them into her hair.  First one side, then the other, so her sides are pulled back and won’t fall into her face while she’s playing.  She hate’s having hair in her face.  But at least we’ve graduated from wearing hats all the time to putting barrettes in.

I adjust the one on the left so it’s more secure, and then look at her reflection in the mirror.

My heart skips a beat and I can feel the tears pricking my eyes.  She’s growing up so fast.  No longer a baby.  And hardly looking like a toddler.

She’s definitely a little girl now.  And all girl.  Pinks and purples.  Dresses are her favorite.  And having clothes that match are important.  Very important in her world.

Her blond hair and blue eyes tell me we’ll be in trouble when she’s older.  She has the same deep blue eyes as me.  People are always surprised when they meet us in person.  No, I don’t photoshop our eyes to be blue.  They simply are.

She meets my gaze in the mirror and gives me a big smile.

“You happy Mommy?”

“Yes, sweetie, Mommy’s very happy,”  I lie.

I can see the independence in her eyes.  I recognize it.  It is my independence.  And I know trying to keep her safe in a bubble with just make her fight harder to get out.

At three, I have a glimpse of the girl and woman my daughter will become, as I look back at my own reflection.

VistaSept2010 In The Mirror

Help. I needz it.

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.

It’s Her World. We Just Live In 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?

Steady As She Goes

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…

______________________________________

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.

Vatherbday Steady As She Goes

Preschool, School, Homeschool… *headdesk*

150x106 Preschool, School, Homeschool... *headdesk*
Image by Getty Images via @daylife

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?

 Preschool, School, Homeschool... *headdesk*

Here We Are Again

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.

1095 Days

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.

Rainbows and Unicorns

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

NicUnicorns 300x143 Rainbows and UnicornsMy 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!


cupcakes 300x248 Rainbows and Unicorns rainbow cupcakes Rainbows and Unicorns

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

 Rainbows and Unicorns

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