More Medical Maelstrom

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

I Hate It When I’m Wrong

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.

 I Hate It When Im Wrong

May I Have This Dance?

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.

Sept2009EEG 300x199 May I Have This Dance?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.

 May I Have This Dance?

Follow Friday: Yeah, I Know It’s Sunday

My Follow Friday post was bumped when Vista got scheduled for an early Friday morning CT scan, late Thursday afternoon. This came about after talking to our family doctor about some regression we were seeing since her last seizure. Apparently regression can be a sign of a stroke, so they wanted a scan to make sure that wasn’t the case (and it’s not… the scan is fine as far as we know). Now we’re just waiting for them to schedule an EEG for her, which, I can tell you right now, will also come back normal.

As we pulled up to the hospital Friday morning, though, Vista chirped from the back seat “Oh! The hospital. We go see doctor?”

My heart broke a little. No two year old should recognize the hospital from the outside of the building. No child should know that pulling up to a hospital means a doctor is involved.

And it made me think of all the reasons she’s been to the hospital and all the different doctors we’ve seen there in the past two and half years.

Some of those reasons have been as a result of her brain issues. But a lot have been because she was born to early and the fact that her system just wasn’t developed enough to handle all the things it needed to.

And so this Follow Friday is dedicated to Heather’s Maddie, who was also born to soon. And it’s dedicated to my friends who are walking in Maddie’s memory to raise money for the March of Dimes, so that one day no child will have to deal with endless doctors visits because of complications from prematurity.

  • Messponential - I love Colleen. Her and I talk almost every day, even though we live a country and two time zones apart.  I cried when she told me that this year she’s not only marching for Maddie, but for Vista as well.  If you’d like to support Colleen in her walk, too, you can  click here.
  • Adil320 - Ally is one of my roomies for BlogHer this year.  I’m also dragging her to get inked with me while I’m down there (just don’t tell her husband that I’m a bad influence, kai?).  In addition to Maddie, Ally is also marching for her close friend’s baby girl, Natalie Diana, who was born at 31 weeks.  You can read more about why Ally’s marching, and support her, on her March for Babies page
  • Mom2snk - Meredith and I first met through our husbands (yes, we’re both SharePoint widows).  And in a weird, 6 degrees of separation twist, found out she’s also friends with Colleen.  She’ll be joining Colleen on April 24th in for the Jacksonville Friends of Maddie

If you make one $5 donation this year, I would encourage you to consider the March of Dimes.

mfb logo 174x55 Follow Friday: Yeah, I Know Its Sunday

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.

Just call me Dr. Mom

I’m beginning to realize that last winter we really lucked out.

Vista was for the most part healthy and didn’t come down with a lot of colds or sickness.

This year… *sigh*  Is a different story.

As soon as she gets over one cold, we get a week off before she starts getting  sick again.

Bil and I are so over it.

v asthma spacer Just call me Dr. MomThe whining,  the hysterics every time she sneezes, the being up all night because her nose is runny and that is an absolute crisis in her world.

And with every round of being sick has come a round of croup.  Except I don’t think it’s croup.  I think  it’s the start of asthma.

So with this latest round of sickness she’s back on inhalers.

There are a few things you learn very quickly when you have a child who is chronically ill.  That is to trust your instincts, trust that you know your child better than any doctor, and that doctors are not infallible.

I spend a large part of my days, when something new comes up, reading medical journals online.  Researching, cross referencing, eliminating possibilities.

When Vista was little, and her doctors insisted that she was fine and just slow to develop because she was a preemie, this research got them to agree to do an MRI (against their better judgment – they were just humoring me, you understand).   But mother’s instinct didn’t fail me and the doctors were shocked when her scan revealed a brain malformation and missing pieces.

And when I suggested when she was only 3 months old, that she might have a milk allergy, which was summarily dismissed by all her doctors… well, I should have listened to my mother’s instinct then.  By the time she was a year old, her GI specialist grudgingly agreed that she might have an *mild intolerance*.  Months of food diaries and elimination diets revealed a severe milk allergy.  Bad enough that she couldn’t even eat beef and a kiss on the cheek from someone who had just had a drink of coffee with creamer in it would leave an angry red mark on her skin.

Now I’m preparing  to do battle on the asthma front.

This time I have my own experience to draw from, though.

As a kid, I was diagnosed with croup over and over.

I had chronic bronchial infections.  There were years I was on antibiotics 11 months out of the year.

But it wasn’t until I was a teenager that a doctor finally shook his head, handed me an inhaler, and sent me for asthma testing, which confirmed  the diagnosis.

See, the problem was, even in the midst of an asthma attack, I don’t get the tell tale bronchial spasms that are what most doctors use to diagnose asthma.

After Vista’s coughing attack at Christmas that left her breathless and blue, we found out she doesn’t get bronchial spasms either. But the attack she had was a carbon copy of what my asthma attacks used to be like.

So, now, once again I am researching, reading, and preparing to make my case before the judge doctor.

I Need A Holiday From the Holidays

I have a few more posts coming in my relationship series, but I need to put them aside for a bit while I figure out how to proceed.  Like I said earlier, the posts aren’t writing themselves, like I’m used to, and with V being sick I simply can’t focus like I need to on such a touchy topic.  So you guys will just have to suck it up and wait.  Bloggers prerogative and all that.  Sorry.

So, Christmas.

Yeah… that was interesting.

We did end up successfully doing our 12 days of Christmas with Vista.  It worked well and allowed her time to process each toy.

We still had a few presents on Christmas morning and then her stocking.  That took 3 hours to open everything, but we let her go at her own speed.  Even that, though, was too overwhelming and she was pretty much in constant meltdown from noon on Christmas day on.  By the time she went to bed that night Bil and I were completely done in.  In a serious way.  I think next year we might just skip Christmas day, altogether.

The 26th we briefly considered hitting the Boxing Day sales, then came to our senses.

Bil’s assesment of the day ahead:

bilxmas I Need A Holiday From the Holidays

He was kidding…. I think…

After spending the morning dealing with cranky mccranky pants (aka our daughter) we figured the sooner we headed over to my parents the sooner we could make them look after her and we could sit and have a break.  Cause we’re awesome parental units like that.  So, we packed up the big pickup truck *cough* rednecks *cough* and hit the highway.

Vista had a bit of a cold and cough and we had another croup flare up in the days before Christmas.  We decided we would take her into our family doc in the new year as this is her 3rd go round with ‘croup’ in a month in a half.  Vista, however, had a different plan.

As we left our house to make the hour drive to my parents house when Vista started coughing…and coughing… and coughing… and oh fuck… she can’t catch her breath.  Do we pull over and call an ambulance or gun it to the nearest medical facility?  We veered off the highway and took the back roads the Urgent Care facility in the next town.

As we rushed from the truck into the medical center, Vista’s cough had slowed enough that she was at least not blue tinged anymore.  I had flashbacks to my own experiences with croup as a child.  These coughing attacks were eventually diagnosed as my signature asthma attack.  Yay genes.

And we walked into see a huge line of people.  Crap.  The debate.  Head back to the hospital ER in our town, stay here, or take her into the Children’s hospital in the city.  We decided to take our chances and wait it out here. I called my mom and told her we’d probably be a bit late for dinner.

However, when you walk in with a coughing child with dropping pulse-ox stats a funny thing happens.  You get bumped to the front of the line and get to see a doctor right away.  Two inhalers and instructions to follow up with our family doctor later and we were on our way again.  So much for making it through the holidays without a visit to emergency.  Vista is nothing if not consistent.

When we finally got to my parents house, my dad took Vista and my mom went and made me a stiff drink.  Because there are some days when it’s required and my mom, for all her quirks, gets that.

My youngest brother and his wife finally arrived with my nephew (how we can come from an hour away AND stop at emerg and still get to my parents house ahead of them when they live in the same neighborhood as my parents, I’ll never understand).  I had the sad realization that my nephew who’s now a year and half old isn’t a baby anymore.  *sniff*  He’s completely lost that cute, chubby, baby look and marched straight into toddlerhood.  I told my SIL that she needed to get with the program and have another baby for me to cuddle.   Because, really,  we all know it’s always all about me.

After required snuggles, we let the kids open their presents from Grandma and Grandpa (or Manna and Putta as Vista prefers to call them.  We’ve tried to correct that.  And she can say it properly.  But she’s adamant about those names.  *shrug*).  Can we say spoiled?  I think my parents went and won the lottery and forgot to tell us.  They even got Vista a gift certificate to the high end shoe store where we have to get her footwear, so her next pair of shoes are completely paid for.  Yeah, I may have teared up a bit over a gift certificate to a shoe store.  Just proves that I’m sensitive.

Heading back home in a semi-turkey induced-coma, we had to pull off on the highway again after V had another coughing / asthma attack.  Nothing wakes you up and gets your adrenaline pumping like your kid having trouble breathing.  Thank goodness for rescue inhalers.  But since then, she’s been good and we haven’t needed to use it at all. So, yay the inhalers are working.  Boo that they’re probably working because she has asthma.

All in all a good Christmas.  But really?  I am SO ready for a holiday now.

I’ll leave you with this daily dose of cuteness… Vista the ballerina (oh, and yes, she insists on wearing a toque in the house at all times.  And usually mittens too.  We got her to take off the mittens to open presents, but the toque?  Not a chance.  I promise you, we keep the heat on in the house.  Really.)

 I Need A Holiday From the Holidays

Paging Dr. Twitter

Shot Paging Dr. TwitterPeople who don’t use Twitter don’t get Twitter.

It’s a powerful beast.

And I’m not even talking from the ‘social media’ perspective.

I’m talking from the perspective of a mother.

The day Vista managed to get a huge sliver in her finger that I couldn’t get out , I mentioned it on twitter and immediately had a dozen suggestions on different tricks that might make it easier to remove.  And it worked.  Sliver removed without crying and fuss.

The day we took V to the hospital for yet another round of gastro issues, I twittered it.  I was overwhelmed with support from mom’s who had been there with their kids.  Who walked me through different meds.  Who twittered me about different procedures the docs might suggest and what they all meant.  The pros and cons of each.  They offered phone numbers and then sat there on the phone offering support while we waited to be seen in the ER.  And most people just offered support, good thoughts, prayers.  All of which meant so much.

On Monday night of this week when I mentioned V had spiked a sudden fever and a cough, Dr. Twitter pronounced it Swine Flu and advised me to get some Tamiflu for her.  I should know better than to doubt the all powerful Dr. Twitter.  I put it off til she got worse on Wednesday.  Took her into the local ER and walked out with our Tamiflu prescription.

Then yesterday afternoon, I mentioned on twitter the wheezing when she was breathing and the barking sound she was making when she cried.  Several experienced mom’s popped up to tell me Vista had croup and I should take her in.  I brushed it off, attributing the symptoms to the flu (yes, silly me…. I’m a slow learner).

Later that night, after V decided to drop a soup can on her big toe (why yes, it’s been the week from hell.  Thank you for asking), the first place I went was twitter.  I was informed by the Mom’s Who Have Been There Done That that the toe would need to be x-rayed and then the nail would probably need to be punctured and drained.  Guess who was right again?

We bundled up Vista, took her into the ER.  The nurses took one look at her and said “She has croup”.  We explained that we weren’t actually here about that.  That we figured it was probably the flu and we were actually here to have her toe looked at.  After they picked their jaws up off the floor we were informed it was lucky we brought her in because of her toe.  The wheezing (stridor) we were hearing when she was at rest was NOT a good sign in terms of croup.  The doctor refused to do anything about the toe until the croup had been looked after for fear of getting her upset and sending her into respiratory distress.  So she was plied with steroids and popsicles to take care of the croup.  Later, as per the Twitter consensus, her toe was x-rayed (verdict was no visible break) and after a quick puncture of the nail we were on our way home.

Time and time again, my friends on twitter have been there for me.  With advice, recommendations, personal experience, and support.   I have learned that doctors give you REALLY funny looks when you say “My twitter peeps think this is the issue”, especially when it turns out they’re right on the money.  But I have learned to turn to these people first.  They are my rocks.  My support.  They are what keeps me going when I just want to sit down and give up.

So, to     

To all those amazing people who are constantly there for me, there’s only one thing I can say.

Thank you.

Wordless Wednesday – Neuro Appt

Neruoappt1 272x300 Wordless Wednesday   Neuro Appt

Neruoappt3 300x201 Wordless Wednesday   Neuro Appt

Neruoappt2 300x230 Wordless Wednesday   Neuro Appt

It’s About Bloody Time

I’m doing the happy dance right now.

We finally got the call today that Vista’s been assigned to a neurologist and we go meet with him on Tuesday (Aug 11). It will be so nice to finally get some of our questions answered. Like could her hydrocephalus be affecting her balance. Should we be concerned about her seizures. Are their any concerns about her bumping her head due to the existing hydrocephalus and brain malformations.

This appointment has been a long time coming. We’ve known since Vista was 6 months old that she had a neurological issue. It took us until she was 18 months to convince the doctor of that and get him to order the MRI. We finally got the MRI in March, results in April and have been waiting, waiting, waiting, since then to get into see a neurologist.

As much as I love the free (most of the time) health care in Canada, if we were in the US we would have seen a specialist months ago. So, say what you will, but give me the option of private health care.

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