Update

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…

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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.

Vatherbday Steady As She Goes

In A Good Place

While Vista napped this afternoon, I sat in my favorite chair in the living room, surrounded by a sea of scattered toys, jotting down updates and notes in her Care Notebook.

Next month will be her third birthday.

Three years of test results, assessments, letters from doctors, and all her Early Intervention visit records sit in this binder.

I have pages full of names and numbers for doctors, nurses, and therapists of all kinds. Lists of things to ask and review with her pediatrician at our appointment tomorrow.

It has been a hard fought battle to get where we are today.

But I finally feel like we are in a good place.

A place where we’re being heard.

A place where Vista is getting the support she needs.

When I noticed she woke up again with tremors, something she hasn’t had since starting her anti-seizure meds, I was able to place a phone call to her neurologists office, discuss it with them, and get her meds adjusted over the phone.

Thursday I’ll be attending a parent orientation session for a 9 week preschool child development treatment program that Vista’s been accepted into.  This will give us access to an Occupational Therapist, a Speech Language Pathologist, a Physiotherapist, a Child Psychologist, and a Social Worker, on a weekly basis.  These people will work with Vista and give her, and us, the tools we need to help Vista with some of her sensory and behaviour issues.

We’ll be working with this team and with Vista’s doctors to try and qualify for government funding so Vista can have an aide to help her at school.  She may qualify on a medical diagnosis because of her seizures, but that’s going to be a wait and see game.  I’m hoping it’ll go through, so she can go to preschool a few days a week in the fall.

And thanks to the wonderful people at the Calgary Cerebral Palsy Association, Vista now has a bike to ride this summer.  It’s wonderful to see her be able to do some of the peddling on her own as she squeals “Look at me, Mommy!  Look at me!”

I’m looking, baby girl, and I’m so proud of how far you’ve come.

V1 In A Good Place

V2 In A Good Place

V3 In A Good Place

V4 In A Good Place

The Good Doctor

Just a quick Vista update for those who care.

So… we had an appoint with our family doctor on Monday to talk about Vista’s inhalers and I also wanted to talk to him about some of her specialist flagging some of her behaviors as autism markers.

Visiting Dr.F is always interesting. First of all he is the ONLY doctor that Vista likes. She will let him check her, and even pick her up, with no screaming and crying. And then there’s the fact that Dr.F totally think the sun rises and sets with Vista. You see, she was his very first patient in his practice (in fact before he even had a practice). He was her doctor when she was in the Special Care Nursery (a step down from NICU), when she was born. And so he’s always taken a special interest in her.

I love the fact that she’s so relaxed with him. It makes a visit to the doctor so much easier. And I also like the fact that I feel like he listens to me and doesn’t dismiss me as a neurotic mother. That’s a rare and valuable quality in a doctor these days.

The first thing we discussed were her inhalers. And the fact that, yes, the doc at urgent care had prescribed her an inhaler that was way above her age range (thank you Dr. Lori for bringing that to my attention).  We confirmed that she doesn’t need to be on inhalers full time, but when she gets a cold, she’ll go on them for a week or two to keep her airways open.  I’m happy with that arrangement and it seems to work for Vista.

Then we talked about some of the autism makers we’re seeing.  Stuff like lining up toys, counting things over and over and over, and other OCD quirks she has.  He agreed that it was probably time to get her in for a formal screening, so he’s made a referral to the Children’s Hospital in the city.  He’s not overly concerned, especially because he’s thrilled with where she is with talking and walking in light of her brain issues.  He said  that any autism she may have would be mild and it may just be her quirky self.

Before we left, I asked him if he had received a call from Children’s Services back in December.  Surprise, surprise, they didn’t call him either.  That’s 3 names I gave them and they called none of them.  Unreal.  I still have to check with Vista’s pediatrician to see if they talked to him.  What I found interesting is Dr.F guessed within 2 seconds of hearing my story who it was that had reported me.  He’s asked me to gather some information about the CS investigation and pass it on to him and then he is going to file a formal complaint against the pharmacy (and pharmacist) who filed the report with CS.  I’m apparently not the only person who has had problems with that pharmacy.

I have to say, I came away from this appointment feeling good about where things are and very supported.  Having a good doctor, when you have a child with issues, can really make such a huge difference.

As we were walking out of the office, we ran into Dr.F’s wife who had brought him some coffee.  The Dr introduced us and his wife immediately looked at Vista and said “Oh!  Is this Vista Avalon?”.   I must have had a “how the fuck do you know my daughter’s middle name” look on my face because she started laughing and explained that Dr. F talks about Vista all the time and they both just love her name, so it’s always stuck with her.  Huh.

The biggest surprise of the whole visit, though, came with Vista gave Dr. F a hug before we left.  And not just one of her ‘I’ll sort of lean into you and let you touch me’ hugs.   I’m talking about an arms around his neck, squeezing hug.  Apparently even she knows a good doctor when  she sees one.

Still Alive

“…Now these points of data
Make a beautiful line.
And we’re out of beta.
We’re releasing on time.”

“Still Alive”
Jonathan Coulton

That pretty much describe what I’ve been up too for the past week or so.

Nic and I have been working like mad on our BlogHer@Home site.  What is BlogHer@Home, you ask?  Well, first you have to know what BlogHer is.  Simply put it’s a community for women who blog. Every year they have a big conference that sells out.  Tickets are coveted, flaunted, and fought over.  This year it’s the place to be if you’re in Chicago on July 24/25.

Well, Nic and I aren’t going to BlogHer.  And that sucks.  Hearing people talk about it constantly was a total bummer until Nic came up with the brilliant idea of creating BlogHer@Home.  So we whipped up a site, and have been working to get our BlogHer@Home gals some AWESOME giveaways (can you say 5 pairs of pearl earrings and a new laptop five times really fast?  No, me neither.  But I do know where you can win both those things for free!)

In addition to keeping all that straight, I’ve been helping Heather and Megan get their Friends of Maddie site up.  This is a wonderful charity dedicated to the memory of Heather’s daughter, Madeline.  Their mission is to provide support to the families of critically ill babies in an effort to help ease the transition into NICU life and to be an ally until the end of their child’s hospital stay.  As a mom of a child who was in NICU and Special Care, I know how invaluable this support can be.  If you have a moment, please take the time to visit and support this important cause.

I’ll hopefully have another post up soon, assuming I can find time to write and be in bed before 1am.

Hugs to you all for all your wonderful love and support.  It really means the world to me.

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