challenges

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

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?

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.

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