Vista

Holding Pattern

Warning: This is a boring Vista medical/health update and also a bit of a novel. If you’re not interested, you should go check out @Psychmamma’s pretty snow pictures instead icon smile Holding Pattern

Sooooo… yeah.  Way back in November I wrote about how Vista hadn’t been doing well.  I originally suspected her sudden weight loss, rash, lack of appetite, etc were due to the new anti-seizure meds she started at the end of October.  Of course, being just a mom, I was pooh-poohed, and told it was just viral.  I wasn’t convinced.

I really wouldn’t have fussed it too much, had it not been for the 10lb weight loss (which left her looking frail), and the fact she stopped having bowel movements altogether.

I finally took her into our family doc, who is awesome.  We decided to rule out EVERYTHING it could be, until the only option was the meds.  He ordered abdominal xrays checking for a blockage or obstruction, as well as a blood panel checking for diabetes, cancer, thyroid, you name it.  These all came back normal.  All of them.

It was time to call her neurology team and tell them she was still not well.  Every other possible explanation had been ruled out, and, as it was right before Christmas, I wasn’t buying a virus that had lasted two months, especially when all her blood counts had come back normal.

They agreed, and we decided to keep her on her meds over Christmas and bring her in early January to discuss options. Then the nurse mentioned that perhaps we could try splitting her med dose.  She didn’t think it would make a difference, but it would be something else to try until we went in to see them.

So, rather than the full dose in the evening, she now gets half in the morning and half at night.  And guess what?  Rash? Gone.  Bowel movements?  Returned.  Weight loss?  Stopped.  *poof*  All her symptoms magically disappeared.

We’re still not sure why she was reacting so badly to the full dose (she is still solid in her status as the ‘little anomaly’) but we’re just happy to have it figured out.  For now, we’ll leave things like this as they seem to be working.

Our project now is to get her to put some of her weight back on.   At 38lbs and almost 3’6″, she’s too slim for her big frame.

The other thing we had going on during this, is the first part of her pre-surgical testing (in preparation for the possible eventuality of brain surgery for her epilepsy).  This was a neuropsych evaluation that tested her IQ, cognitive abilities, and other brain functions.  We got the results right before Christmas, and the results were… interesting.

She has problems with impulse control (so telling her not to do something can actually make her do it.  Doh!) and executive brain functions (these are to do with planning, abstract thinking, troubleshooting, stuff like that).  These are consistent with her abnormal EEG and the spiking they saw in the back of her brain.

So, what does this mean?  Essentially, that V could be a danger to herself.  She can’t stop herself from touching a hot stove if her brain decides to do it.  It means, as we already knew, she requires constant supervision.  It also means that we’ll need to change some of the ways we parent her, because they’re not working and they’re not ever going to work.

The neuropsych team has written a recommendation that V have a behavioral aide with her, so I will be putting all the papers together tonight to get the application in place for that.  That will take some of the stress off us, I think.

They also recommended further testing.  When she’s older they would like her to have a MRI neuropsych eval, that would fully map her brain functions.   The next step, as far as the surgery goes, though, is a 5 day hospital stay, with her hooked up to an EEG machine and video monitored, while we pull her off her meds and hope she seizures.  Yay.  There’s no date set for this test, yet, and I’m, quite frankly, in no hurry to do it.

For now we’re in a holding pattern.  As long as her meds keep working for her, and we have no more adverse reactions, we’ll keep things as they are.  And keep our fingers crossed.

Happy Holidays With (Sensory) Kids

I originally started writing this as a post for how to deal with kids with sensory issues during the holiday season.

But then I realized, a lot of these could apply to all children.

I think kids have more pressure to perform during the month of December, than they do all year.

And by perform, I mean, play the perfect, well behaved, child.  Which we all know, for the other 11 months of the year, is the furthest thing from the truth.

So take a moment to realize that the planet is not going to self destruct if…

  1. Kids leave the table before the meal is finished.
    Who made up the rule that kid have to sit for the whole holiday meal?  Seriously?  Who?  Your great-great-grandmother’s third-cousin-twice-removed?  What is going to happen if the kids leave the table before the meal is done? Relax. It really isn’t the end of the world if kids don’t eat every last morsel on their plate.  And if your house is anything like ours, they’ve probably been snacking on goodies and treats all day and really aren’t that hungry anyways.  So, let them go.  Let them get up from the table once they’re bored and send them off to play. You know what will happen?  You’ll have a nice, quiet dinner with adult conversation, and without wanting to pull your hair out while they fidget and whine.

  2. Your kid doesn’t want to eat holiday dinner at all.
    It’s new food.  Different from what they’re used to.  That can be a huge deal for some kids. Do yourself a favor and bring along some of their favorite foods and snacks, so if they don’t want to eat the fancy turkey with stuffing and cranberry sauce, then can at least have something.

  3. They open one (or two…or three…) presents before Christmas Day.
    This is another of those ‘who made that rule’ questions I have.  I wrote about this last year, and we’ve implemented the same thing this year.  Christmas Day is out, the 12 Days of Christmas is in. Throwing a ton of presents and wrapping paper and lights and noise and family and the list goes on at a kid and expecting it not to be overwhelming?  Is simply not realistic. So instead, Vista opens her presents from friends when they are received, and her presents from us in the days leading up to Christmas.  Christmas day is reserved for stocking and Santa presents.  That is plenty.  The bonus of doing it this way, is it also gives her time to open and enjoy each present.

  4. There is no Santa picture.
    Malls are noisy, loud places during the holidays.  The lights, the music, the people. Do you leave the mall after a Christmas shopping trip feeling relaxed and renewed? No, of course not.  It’s hella stressful for adults.  So for kids?  Is it any wonder that they’re a complete mess by the time it’s their turn to see Santa?  And THEN we expect them to smile and hug a complete stranger in a red velvet suit.   Uhhh…yeaahhh… about that.

    If a Santa picture is really that important, take the money you’d normally spend on a Santa pic, pool it with some friends and rent a Santa suit for someone to dress up in.  Then take the pictures at home.  Sure you won’t have the sleigh backdrop, but you might actually have a smiling kid in the picture instead.

  5. They don’t wear that fancy $200 Christmas outfit you bought them.  And the same goes for the reindeer sweater.
    Lets face it.  Fancy dress up clothes are not conducive to being comfortable.  And they’re really not meant for playing in, either.  If it’s really that important that everyone see them in that ‘ZOMG! It’ll look SO CUTE on her’ outfit, then have them wear it to the party, but bring some comfortable clothes they can change into.  The other option is to find a happy medium.  V’s wearing velour pants (http://bit.ly/velourpants <-not any sort of affiliate link, just sharing a pair of comfy pants) with a sparkly top.  Cute, no?  Both are comfortable, but still dressy.

    VistaXmas2010 Happy Holidays With (Sensory) Kids

  6. Your kid doesn’t want to hug your aunt’s brother’s cousin’s daughter.
    Touching can be a big thing for sensory kids. And a lot of people (never mind just kids) don’t like strange people in their personal space.  Instead of hugs, try a handshake or the knuckle bump (or as V likes to call it ‘punch it out’).  Just be ready to throw yourself in front of Aunt Erma before she gets her sticky paws around your kid.

    I know for V, the other part of being around people, is that smell is a HUGE thing.  So someone wearing strong perfume? Forget it.  She won’t go near them.  The same goes for someone she knows changing their smell.  My BFF came over for coffee once and wore a different perfume than normal.  V wouldn’t go near her because she didn’t smell ‘right’.

    Another thing you can do is show kids pictures of the people they will be meeting, ahead of time.  This lets them prepare, and makes that uncle he sees once a year a little less of a stranger.

  7. They just want to play by themselves.
    New people, lots of noise, people wanting to pat them… Nightmare waiting to happen for a sensory kid.  We’ve learned to bring an iPad, or DVD player, and a set of headphones with us when we go places.  If it’s still to much for V, we designate a ‘quiet room’.  Somewhere she can go and sit by herself, away from the hustle and bustle, until she’s feeling ready to rejoin us.  When she disappears, we just politely explain that it’s a bit much for her, and she needs to wind down a bit.

The biggest thing is to follow their lead and pick your battles.  Nothing’s worse than spending your holiday arguing with your kid.  And if it means deviating from the norm so everyone ends up enjoying themselves a lot more?  Then do it.

Your sanity will thank you.

Who’s Your Daddy?

Part of Vista’s nature is her need to control her environment.

That means constantly asking me “Who we going to see today?”.  Over and over.  All. Day. Long.

It doesn’t matter if I give her the same answer over and over, all day long.  She still needs to ask the question.

The other question I hear all day long is “Who was that?” after every single phone call.

Now, I wouldn’t be the mother I am, if I didn’t take these opportunities entertain myself at her expense.  Because, really, that’s what parents are for, right?

So by the eleventy billionth time I’ve been asked ‘Who we going to see today’, rather than giving her the same answer I’ve been giving all day long, I’m more likely to tell her that we’re going to see the Stay Puft Marshmallow Man and after that the Ghostbusters might make an appearance.  Heh.

But I don’t only use these opportunities to educate my daughter on the finer points of ’80’s comedies.  It’s also the perfect time to discuss religion.

*I hang up after talking to Bil*

Vista: “Who was that?”

Me: “God”

Vista: “Who is your God?”

Me: “Excellent question. Daddy is.”

Vista: “Daddy is your God? Bil is my daddy God.”

That’s right. We’re teaching her to worship us as deities.

Hey, it worked for the Egyptians.

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

A Rose By Any Other Name

My brain wanders to weird places when I’m awake at 3am.  (Why, hello, insomnia).

It’s when I do some of my best thinking and come up with cool ideas, though.  That time when you’re half awake, half asleep, and you’re not worrying or focused on anything in particular.  All sorts of strange stuff pops into my head.  Like…

Have you ever wondered what you would have named your kid if you didn’t give them the name you did?

Vista was always Vista for us.  There never was another name.

But sometimes I wonder what she would have been if we hadn’t come up with that name.

Vienna?

Virgina?

(yes, I seem to have a small obsession with V names.  Don’t judge).

Or what about people you meet who don’t seem to fit their names?  Who do you think they should be?

My nephew, Sheldon, is like that, for me.  The name just seems to big for him.  And yet I can’t find a way to shorten it.  Shel?  Nah.  Don?  Definitely not.

Maybe I’ll just start calling him Bob…

Crazy Going Slowly Am I

Remember that song we sang as kids that went

“I am slowing going crazy.
1…2…3…4…5…6.. switch.
Crazy going slowing am I.
6…5…4…3…2…1…switch”

Yeah, that kind of describes my life right now.

Last night Vista finally did what I’ve been afraid she was going to do for a while, and aspirated on her meds.  That means her meds went into her lungs rather than into her stomach.  That is a bad thing.  A very, very, very bad thing.

And let me tell you… nothing induces panic faster than watching your kid turn completely blue.  She wasn’t able to make any sounds,breathe, or cough, which meant her airway was completely blocked.

I still get shaky just thinking about it.

I was able to get her breathing again with several abdominal thrusts, then bundled her up and took her into the hospital for a quick check.

(Let me insert a PSA here encouraging you to make sure you’re up-to-date on your First Aid and CPR procedures.  It can, and does, save lives)

Luckily she didn’t seem to sustain any injuries from the incident, so now we’re just watching for signs of a bronchial infection.  Wheee!

The biggest implication of this whole incident, though,  was that it means giving her liquid meds is no longer an option.

The risk of her aspirating again, overrides the need for the anti-seizure meds.  Which is saying a lot.

So I spent the day on the phone with Vista’s neurology team trying to figure out what to do next.

We went in and met with the therapist who is working with us to teach V to take her meds.  She said that Vista is ‘beyond her expertise’, and so we’re pulling child psychologists onto the team now.  The word ‘Asperger’s’ was tossed out and the need for an assessment to see if that’s what we’re dealing with and the reason we’re having so many challenges was raised. So that’s a third person who has suggested V might be Asperger’s.  We have a date set in November, now, for her to be screened for the Autism spectrum.  I guess we’ll see what they come back with then.

But that still left us with the issue of what to do in the mean time.

We went over every possible option with the team, including taking her off meds completely.

By the 5pm it had come down to 2 real possibilities.

Putting an NG tube in or switching her meds.

Neither option makes me feel warm and fuzzy.

For now, I think we’ve decided to attempt to switch her meds.  We’re going to try a med that has a pill I can crush and make into chocolates, like I do her other pills.

The med they’re considering right now is phenobarbital.  Barbiturates FTW!  I’m pretty sure my 3yr old will be a full blown druggie by the age of five.

I’ll find out tomorrow morning what the official decision from her neurologist and we’ll make the switch.

… Crazy going slowly am I.  6…5…4…3…2…1…SWITCH.

 Crazy Going Slowly Am I

Reality Can Blow Me

Every Wednesday morning, Vista and I jump into the truck and head down to the Parent Link centre in town for our weekly therapy group.

It’s an opportunity for her to connect with other kids and work on her social, motor, and sensory skills and it’s a chance for me to connect with other parents of special needs kids.

In the past month, we’ve added a bunch of new families to our group, as many of the kids from the spring group have moved on to preschool or kindergarten.

Many of these new parents are where we were two years ago.  No diagnosis.  No support.  Only the rock solid knowledge that there is something just not quite right with your child.

It’s a difficult place to be.  I know.  I remember.

With all the progress she’s made in the past few months, it’s easy to sit back and enjoy a sense of semi-normalcy.

Until, of course, reality butts in.

====================

We finished up V’s bottle of meds last night, so this morning I opened up the new bottle we had just picked up from the pharmacy.

I drew a syringe full and looked at it.  Hmmm…. that’s not right.  Vista’s meds are dark red.  This stuff is almost clear with a slight tinge of pink.  Was there water in the syringe that I hadn’t noticed?

I squirted the meds down the drain, grabbed a new syringe, checked that it was clean and dry, and tried again.

Still clear.

*shit*

I paced the kitchen waiting for the pharmacy to open.

Watching the clock.  Mentally calculating in my head how far I could push the delay in her meds and still leave enough time for 12hrs between her doses.

I finally got the pharmacist on the line.  And found out they had switched the brand of her meds.  They couldn’t get her normal ones, a problem at the source, no longer able to order the old brand, so they switched it to a new brand.

And. Didn’t. Tell. Us.

Shouldn’t be a big deal, right?  Only it is.

Each brand is formulated differently.

And that means switching brands in anti-seizure meds can be like yanking them off old meds and suddenly starting new meds.  Which?  Can cause major seizures.

I’ve spent the morning on the phone with pharmacies, trying to find someone who carries her old brand.

I have a call into our Neurology pharmacist asking what we should do.

I called our Neurology nurse and asked if she thought it might be OK just to go with the new brand (she confirmed that it was definitely NOT OK and that I needed to talk to the neuro pharmacist to see what he recommended).

I’m frustrated.

I’m angry.

My nerves and feelings are raw.

I’m back to grieving the child I thought I was going to have three years ago.  The one that was healthy.  The one that didn’t need three doses of anti-seizure meds every day to keep her alive.  The one that didn’t need therapy.  The one that didn’t know the inside of the children’s hospital like the back of her hand.

One day, maybe I’ll get to the end of that grieving process.  But not today.

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

How To Argue With Yourself

There are times when watching your kids is waaaaay funnier than any sitcom on the television.

Vista is a constant source of hilarity in our lives (when she’s not acting like demon hell spawn, of course).

We had a good laugh the other night after Bil introduced her to an iPad game that has a cat that you can interact with.  The best part is, it picks up your voice on the microphone, runs it through a filter, and then plays back whatever you say in this squeeky cat voice.  So to a 3yr old it’s like the cat is talking to you, which V was immediately fascinated with.

Until… she said my name.  Which of course the cat repeated.  And then the argument started.  But basically, she was arguing with herself, because all this stupid cat is doing is repeating what she says.  And, OMG, we just about died laughing.

Really, there’s no better way to explain this than to show you

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