Slam Dunk!

I guess its not really cheating if you're not playing against anyone...

Right?

It's coming!

Spring is coming... here's how I know:

The snow is easy to clear from the driveway.

And we don't really need our winter jackets anymore.

In fact, my daughter seems to think it's short sleeve weather.

Oh spring... hurry please! We can't wait for you to come.

And in other news...

I'm going back to school. Yes, I am. I made the decision to do so before Finn got her ASD diagnosis and am now just a little bit intimidated by the whole thing, but I'm gonna give it a shot anyways. I've been wanting to go back to school since I finished my degree 10 years ago. The time now seems right. Or at least it did before autism was named at our house.

I could say it's just a name. A word. But it's not, it's more than that. ASD means extra time running around to different programs and such, trying to get her as much help when she's young as we can. It means learning how to parent her and lots and lots of research. But it also means that she will likely qualify to go to school full time next year in kindergarten instead of the typical half day. That, coupled with the fact that their new school will be only 1 km away instead of the 15 through some of the most ridiculous traffic for a small city known to man that I am currently driving, I'm hoping that this new endeavor will turn successful.

It will be a long haul since I'm starting from scratch. I don't plan to talk about it much on here, but it's what I'm doing. Part of me is very excited. I just got my first assignment back this morning (I'm taking everything by distance right now) and I got a 90%. Oh yes I did. I haven't lost my touch. Too bad it's just an introductory English course and since I already have a bachelor's degree and since I grew up speaking English it's probably not really anything to be all that proud of. But still, it's a good start. It does take a little something away too though that the assignment doesn't even count toward my final mark.

Ya, I think that part's pretty funny.  90% on an assignment that doesn't even count. Way to go Amanda! Awesome job.

And that, besides being another year older, is what's new with me.

(Oh, the crazy hair. Do you see that rat's nest? That what happens when Finn sleeps. Seems one of the way she comforts herself is by rubbing her forehead against her pillow.

Ask me how much fun that is to comb out on a daily basis.

Real fun, I tell you. Real fun.)

Clean, clean, clean

As I cleaned the bathrooms yesterday, Finleigh decided that she needed to help. So, I gave her a cloth and she followed me around helping.

"I help. I help!" Was her refrain.

And then we would sing, "Clean, clean, clean."

We must have been at it 45 minutes or so when I began to think about how very normal this exchange was. I felt like I had a little friend beside me as we sang and she followed simple instructions. This was how I had always thought it would be like having a little girl.

I was enjoying myself, despite the fact that I was cleaning our old, crumbling and rusting bathrooms. The exchange was so normal and pleasant that I even started to think about how ironic it would be that as soon as she got her autism label, she would start improving so much. 

Then I made the mistake of asking her to do something that she didn't like and all hell broke loose. We were back to square one. Oh ya, that's the Finleigh I know and love.

But, she's growing up. This glimmer of normality, this new found desire to help tells me so. Hopefully we can get her some good behavioural therapy and we can learn how to help her work through her emotions in a more productive way. Because a day without a breakdown or 12? How great would that be?

The most boring post ever...

It's been just over a week since we were given Finleigh's ASD diagnosis and I will admit that I'm still processing this.

In the meantime, I've been busy running around trying to make sure we get everything for her that we can. There was a lady in from the big city on Tuesday to observe Finn for a speech device. Then I met with her and Finn's learning team for an hour to discuss her recommendations.  We'll hopefully begin testing them in the next few months after another meeting at the end of March.

As well, I've been to visit the provincial support for children with disabilities.  She's been intook.  Is that what one would say as the past tense of "intake?"  We'll hopefully know in the next few months exactly what services she will qualify for... though she will be on a wait list of at least 6 months for the behavioral therapy they offer. I felt very irritated as I sat there trying to justify why my daughter deserved these extra services. There I was with a copy of the 2 page diagnosis, but she still needed to know exactly what our daily life is like.  As if were it not severe enough they wouldn't help my daughter.

Oh to be independently wealthy and be able to fund everything she needs on our own.

I'm still waiting to hear back from a few phone calls I've made. I guess I'll have to call again and get pesky.

We've been working on the sleep thing.  It's getting better after more than doubling her melatonin dosage as per the doc's suggestion. Which has been awesome till I couldn't sleep last night.  Guess I was too rested? Though more likely too stressed.

I've finally bit the bullet and scheduled a dentist appointment for Finn.  I know it's not good to have waited that long, but I've definitely been procrastinating on that one.

We apparently qualify for some sort of tax break now, I need to get the paperwork done for that, but that requires our doctor to fill out forms.  I'll get to it.  Soon.  I'll try anyways.

It's been a busy week, but next week the kids have the week off and I'm looking forward to some downtime.

This winter just seems to be dragging on.  We have at least another month until we can reasonably expect more mild weather to really take hold, but I'm ready for it now.

In fact, I think I'm ready for a trip to the Caribbean. Yes, that would be quite wonderful thank you very much. Quite wonderful.

Did that just happen???

I'm Canadian.  Therefore I say "zed" instead of "zee" for the very last letter of the alphabet.  It's not that I really like saying "zed", I mean, it doesn't even rhyme in the alphabet song (what should I sing?  "next time won't you come on my sled" or "next time will you color me red"?) or half of the other letters like "zee" does.  I actually find it kind of annoying.  BUT, I'm Canadian, darn it! We may over all as a country be easy going, but we cling to what little shared heritage we have very stubbornly. "Zed" is one of those things.

The thing with raising a child with severe communication problems is that you're often left wondering if what you heard is really what was said.  Like this morning...

Finleigh singing part of the alphabet: q r s t u v...

And then she stops.  Just stops.

So I continue: w x y zed.

Finleigh: zee

Uh, did that really just happen?  Did I get corrected by my daughter? I think that maybe someone's been watching too much American TV.

Or maybe I was hearing things.  Anything's possible.

Just when I think we're making progress...

Oh rainbow licorice.  Have you seen the kind that I'm talking about?  By Twizzler's? I personally find it to be quite gross, but my boys LOVE it.  And I suppose it may have some education value. You know, for teaching colors.  (Though I'm not sure that all the sugar and phony baloney colors and flavors really are worth the educational benefit).

So I was handing some out to the kids and after the boys told me what colors they wanted, I asked Finn which color she wanted.  "weww-o" she says as she grabs a yellow one. (Score 1!) She takes a bite and proceeds to pretend the licorice is a snake.

Yes, you heard me! She PRETENDED that her licorice is a snake. (Score 2!) They must be working on the "S" sound at school.

After another minute, out of nowhere, she starts crying, bangs her head purposely on the table and runs to the kitchen to throw her licorice into the garbage can. This is followed by a few more minutes of stomping around and crying. (minus 5) 

And just when I thought we might have a normal moment.

Happy Birthday Finn

Finleigh turned 4 on Valentine's Day.  With all the distractions of getting a diagnosis and traveling and then dealing with things when we got back, I haven't even had time to talk about it.

We had a quiet little family gathering to celebrate.  My sister took a few photos of the cake part of the celebration...

It's hard to believe it's already been four years since she came into our lives, and yet I can't begin to imagine our life without her.

A Diagnosis

So, we have a diagnosis, of sorts.

First, let me just say what a pleasure it was to go to these assessments.  Everyone there was so caring and attentive and treated us so well.  What a wonderful departure from what we're used to in the medical system where we often feel like a number to get through. These people looked our file before we even arrived and knew what they needed to know.  That was really nice.

A lot of terms were thrown around during our time there... "disorder" not delay.  Finn's learning and behaviour is disordered.  "Dysregulated".  Her emotions are dysregulated.  "Gorgeous".  Don't forget that one... she really is the sweetest little thing.  And we got this one too... "I dunno".

One of the neurodevelopmental pediatricians that saw Finleigh really isn't sure what's going on with Finleigh physically.  We'll be seeing the Sr. physician in her department in June.  With 30 some odd years experience, he will have hopefully seen what Finleigh has before.  Some possibilities?  Congenital Stiff Man syndrome or dyskinetic cerebral palsy. But these were not given to us in writing and are still up for discussion.  Hopefully we'll know more in June.

She does have a severe communication disorder.  A suspected severe motor speech disorder (suspected since she didn't let the speech pathologist see enough to be a definite). Her adaptive skills are at about the 24 month range. They couldn't test her IQ because she wouldn't let them.  Severe emotional behavioral dysregulation.  She has self abusive behaviors. She's impaired in social interaction and communication.  She has increased muscle tone and decreased range of motion.

No big surprises there.  Though kinda shocking when you see them all written together like that.

So, the diagnosis?  Autism Spectrum Disorder.

The good news in all this is that we finally have a name for it.  Not that it's adequate because it doesn't really explain everything that is Finleigh, but what it will give us is more support.  I can't tell you how excited I am to have that extra help.  Behavioral help.  Speech help.  Recognition that this is more than a simple delay.  That's good.

We're also sad.  It's not a fun diagnosis.  It's hard to believe in some ways, yet not totally unexpected since it's been in the back of our mind for months now.

So that, my friends, is that.  It's what we know and now we move ahead to try to get her (and us) as much help as we can possibly get.



 

Beauty

There are some beautiful people in this world and if one is lucky, they'll be allowed to have interacted with a handful of these people throughout their lives.  I'm not talking about outward beauty, but instead that glow that comes from a person's soul, you know?  They just radiate love and compassion and... well... beauty.  This year, we've been blessed enough to know one of these people, Finleigh's educational assistant, Lindsay.  Or Miss K as Finleigh knows her.  I knew from the second I learned she was going to be her EA that it was going to be a good year... and it has been.

Finleigh will be turning 4 in 3 days.  It's hard to believe that it's been four years since an emergency c-section changed my life, but it has been and I'm constantly grateful for the miracle of her life.  Miss K knew this and decided to give Finleigh a birthday present.  Now, I'm not a big proponent of giving children lots and lots of stuff on their birthday, but a few thoughtful gifts is such a great thing.  After school today, Finleigh opened her pink bag of gifts from the loving Miss K.  A teddy that she can dress because she's so stylish, a toy that she loves at school, a video.  My goodness, I couldn't believe it. What a wonderful thing to do.

I'm touched beyond words and it's not the gift that I'm touched by... it's the person.  The gift was an outflow of her and was thoughtful and wonderful. But really, it's the love and understanding and grace that she showers on my little girl everyday that really touches me.  Gift or not, I would say the exact same thing about her.

I will miss seeing her everyday next year since we're moving schools and won't have the privilege of working with her, but I can promise you that I will make sure we keep in touch.  People like her are too rare to lose.

Might be my favorite doctor appointment yet...

As I mentioned the other day, Finleigh had an appointment with the developmental pediatrician yesterday and aside from running really, really late, I found that it was really good.  One might even say great.  We got no answers, but what we did get was a promise to do what they could to find out what it is Finleigh might have.  No one's ever said that to us before.  In fact to quote him, he said, "We'll get this figured out soon."  I'm not sure what soon means, but I hope we have the same definition of soon.

We'll be heading down to the big city in the (hopefully) near future to see a bunch of different teams concerning motor, behavioral and psychological and after each of them assesses Finleigh, they will discuss her and hopefully come up with... wait for it... an answer!!!

Can you imagine, actually having a name for what Finleigh has?  Besides "Global Developmental Delay of Unknown Etiology"?  It would be heaven, regardless of what it was.

His first comment about Finleigh was that she was a puzzle.  Yes, yes she is, we responded.  We chatted for awhile.  We talked about the tube feeding.  We were in the very first specialist appointment ever (aside from our own pediatrician) where we didn't feel rushed, even if he was running very behind.

His sense?  And of course, he can't tell us anything concrete until the proper assessments have been done, but he seemed pretty confident.  His sense is that Finleigh has oral dyspraxia.  It seems to fit, but then really many of the other things that have been suggested to us (or she's been tested for) have seemed to fit too.  So I won't get too attached to this one, but compared to some of the other possibilities we've been faced with over the years, this one is okay.

I have a feeling this is the one.

Oh, and he's pretty confident she's not autistic (which is actually his specialty) but we'll do a formal assessment to rule it out anyways.  And he also doesn't think her intelligence is as behind as it seems (big smiley face for me on this one).

Ya, I really do think this just might be my favorite doctor appointment yet.

Treehouse or bust

I woke up this morning to the TV on in my room.  And a little girl trying to kiss my face off.  Pretty sure she wanted me to wake up.

I'm a heavy sleeper.  I missed quite a bit of what my daughter did in my room this morning.  Her backpack, that's all ready and packed with her school supplies for school, had some of it's contents strewn across the floor.  And she'd turned on the TV.

The TV is too high up for her to reach, so she needed to use the remote control, which was on my bedside table.  As the world slowly came into focus this morning, I was surprised.  I wasn't so much surprised that the TV was on, because the power button on that remote is pretty self explanatory.  What I was surprised about was the channel it was on.  I'd gone to sleep with the TV on channel 17 (yes I like to fall asleep to the TV when Brian's working nights and there was a cake decorating show on) and I woke up with the TV on channel 44.

44 is Treehouse.  An all preschool channel.  Now my question is, did she know she was turning the TV onto Treehouse?  Or was 44 just an easy channel to change the TV to?

I don't know.

And what does it say about our parenting if she did it on purpose?  That my child who can't talk, or who falls apart at the smallest misunderstanding knows how to turn the TV onto Treehouse?  And that she knows it's on channel 44?

Why yes.  Yes, we do watch a lot of TV.

(If I didn't know my child better, I might think that excessive TV watching might be why she's not talking yet, but I know it's not.  That I can say for sure.  Had we not a TV, would she be further along?  Perhaps. Or maybe I'd be in a mental institution right now.  It's hard to say.)

Or maybe, her coming into my room, searching out the remote control, turning the TV on and then changing the channel to the default channel in our house was just a fluke.

Right? It could happen.

Simple

It's often the simple interactions that I long for with Finleigh.  I can live with her not talking yet because I really do believe that she will one day be able to carry on a conversation with me.  That will just take much patience.  At least this is what I hope and pray.

Though I do wonder sometimes, even when she does talk, will she be able to communicate her emotions effectively with me?  

She does show me love.  She hugs me and kisses me and snuggles me when she's looking for affection.  And when she's feeling happy or sad.  She "woohoo's" and jumps around when she's excited.  She sings when she wants to.  She helps and follows simple directions.  These she does on her own.  On her own terms.  If she wants.  When she wants.

As a parent, you learn to adapt to your child.  You interact with them as you need to to get through the day.  But sometimes, you have a moment of sadness.  Of loss.  Of wishing that your child would just allow you to celebrate with her when she has a small victory.

Like this morning.  Finleigh had gotten into the bathroom upstairs and had managed to spread toothpaste all over herself.  As I was cleaning her up, she pointed to her eye as she looked in the mirror and said, "Eye.  Eye."  I smiled at her and said, "You're right Finleigh, that's your eye!"

A simple enough exchange.  One that would usually elicit a prideful clap or smile from a child learning to talk.

Instead, it turned into a full blown tantrum.  She did not like what I had to say.  My encouragement seemed to be a discouragement or painful thing to her.  The way I would naturally show my daughter love is not often allowed in our relationship.

And that, sometimes - when my guard is down and I allow myself to think what could have been - breaks my heart.

ENT - It's fun to visit specialists!

I've been trying to get Finleigh in to see an Ear, Nose, and Throat Doc since March.  Her expressive speech is in the 1st percentile and she always has slightly abnormal results when she goes for her audiology tests.  She hears in the normal range, but she always seems to have negative pressure in her ears.  I wondered if they could be related.

Probably not, according to the nice ENT we went to visit last week.  And, of course, I knew in the back of my mind that it couldn't possibly be that easy but I hoped that some tubes or a little procedure would suddenly fix all our problems.  Ya gotta hold onto something to get you through the day, right?  Finleigh is, however, going to get an ABR.  This will measure her auditory brainstem response.  Which will tell us - I think? - if her brain is registering what she's hearing.  She has to be put under.  It's booked for the end of October.

That's the short version, so if you're just interested in the abridged version, stop reading here.  But if you'd like to hear all the dirty details and my emotional response, settle in.  You might be here a while:

If you have a young child and have an appointment, you may want to avoid booking an appointment for just before lunch.  If you can at all help it, which you can't when you've been waiting and hoping for months and you're from out of town.  Why, you ask?  Well because in my experience, doctors (especially specialists) run late.  Like ours did the other day.  By almost an hour.  So when you book for 11:50 am, eating before hand could be a good idea.

We weren't really thinking.  I was so focused on getting to the appointment, I didn't plan and bring food.  Or drinks.  Or anything to entertain the kids (which I've given up doing anyways because my girl is rarely distracted by what I bring).  I did happen to have my iPod in my purse, which helped keep the boys quiet, at least.  To top that off, we'd been up since 5 am.  We had to turn in the motorhome we'd rented that morning and we were 2 1/2 hours away from where we had to drop off the stupid thing AND we had to clean it before we dropped it off.  It was a very long morning.

Hindsight tells me we should have changed our plans, but in our infinite wisdom, we figured we could do it.  And we did, but not without a run to the cafeteria by Brian for drinks and a pretty major meltdown by my daughter 10 minutes before we were finally called in.  So, of course, she was in perfect shape to have her ears looked in and examined.

The appointment went fairly well.  He cared what we had to say and I'd brought in some copies of speech and audio testing that she'd had which ended up being useful.  The boys were really good and the doctor even commented on it.  That's always really nice to have happen.  He looked in Finn's ears.  They look normal.  He said her results were relatively normal for children due the size of adenoids and things like that.  He said the only thing we could do was have an ABR (see above) done.  If that came back unremarkable, then the only other thing he could think of to do was get in to see the developmental pediatrician.  I told him we'd started that process.  He told us we were on top of things.  I told him that we're trying really, really hard.

The only other thing that I remember from that appointment, besides Finleigh's copious amount of crying, was when I commented on how behind her speech is.  "Compared to what?"  He asked.  "You're boys?"  "No.  Compared to everyone." And then I pointed out her speech therapy testing.  No dear doctor.  I'm not just another overly worried, competitive parent.  My daughter has real issues.  


He then filled out a form and sent me across the hospital to the audiology department to book an appointment for the ABR.

As we walked over to audiology, I was feeling pretty good about things.  No, we didn't get the simple fix I was hoping for.  But we were still going to have more investigation.  We'll learn a little something more about our little girl.  Even if it isn't the problem.  And we've done anesthetic before... it's not such a big deal.

We turned to the corner to where the audiology department is and the corridor was blocked off for construction.  Which meant that we had to walk all the way around to the other side.  3 tired, hungry kids.  2 tired, hungry parents.  1:30 pm (or thereabouts).  As we walked past the cafeteria, I suggested to Brian that he stay with the kids and feed them while I go to make the appointment. (Which turned out to be an adventure in itself because he forgot that they only take cash and so after ordering the food and having it in hand, had to leave it with the cashier and walk to the bank machine, get cash out and then go back to pay for the food, all the while carrying our 30 pound daughter who despises strollers and walking by herself unless it means she can wander away and get into trouble).

When I reached audiology, the receptionist told me to sit down and they'd be right with us.  I found this weird but figured that maybe there was someone else who booked the appointments.  So I sat down for a couple minutes and after thinking about it, went back up to inquire if I would need my daughter for this.

"Yes."  She replied as if I had two heads.

"But, I thought I was just supposed to book an appointment.  The doctor told me she'd need to be put under."

"Well, they always try doing it awake first to save you the anesthetic."

Errrr... okay.  I guess that sounds reasonable.  "I'll go get my daughter.  I'll be right back."

I do the quickest walk I can without running to get back to the cafeteria.  Grab my daughter who's about to take her first bite out of her grilled cheese sandwich, grab an onion ring (oh yum!) and carry my eating daughter back just in time for her to get into playing with a toy when we're called in... for a regular hearing test.

Yes, you heard me.  All that for a regular hearing test.  You know, the one we've had at least a half dozen times before.

I stopped her after the first test and inquire about the ABR.  She then told me that she strongly recommended that we don't do that and explained why.  I honestly don't remember much of what she said.  The only reason she could see to do it was as more of a way to rule things out.  But that was why we were here. Didn't the doctor write it on the form?

"Nope," she said.  "He just sent me a blank form."  She flipped over some piece of paper that had been stapled on top.  "Oh, here it is."  Her demeanor immediately changed and then we walked back to reception and we made our appointment for October.

The whole exchange left me wondering if we really should be doing this test.  Are we putting Finleigh through unnecessary testing?  And yet if we don't do it, won't we always wonder?

It was a long 2 1/2 hours, but then we got to go to my sister's house and collapse, which I was glad for.

And that was our fun visit to the ENT.

Finleigh + Photo Booth

Sometimes a simple thing turns into an upsetting event:

We get a similar reaction with Skype.  

Check out other Wordless Wednesdays or Special Exposure Wednesdays over at the 5 Minute for Moms group.

All grown up... or trying

One of the biggest challenges I'm finding right now with Finleigh is that she thinks she's all grown up.  I know this happens with lots of kids.  I'm pretty sure in my fuzzy memory I remember my boys trying to push their way into independence.  But then, I also remember refusals to dress themselves and wanting mommy to do everything.  So maybe I'm just imagining things.

But right now, my 3 year old in a 2 year old's body wants to be 3.  Or even 4.  Which would explain some of our challenges right now.

For example, she's all but refusing to sit in her booster seat anymore for meals.  She wants to sit right up at the table.  Which is fine when she's willing to sit still, but her attention span doesn't last through a full meal.  Sometimes it doesn't even last through 3 bites of food.  And she's messy, so that doesn't help.  Gosh, I'm going to miss being able to strap her in.

Speaking of messy.  She won't wear her bib anymore.  She may let me put it on, but it doesn't stay on for long.  Extra laundry anyone?

She wants to ride her brothers' bikes.

She wants to help me bake and cook and anything else that could possibly cause injury in the kitchen.

She wants to walk by herself on the road and in the stores.  And no, it doesn't count if she has to hold my hand.

She wants to blow her own bubbles, which usually results in the entire container of bubble liquid all over the ground.

She wants to put the DVD's in the player (which would be great if they didn't go in her mouth first).

She wants to take her own food from the packages or dish herself up at the table.  You can imagine how well that works.

Given how behind she really is, who am I to hold her back?  So I try, within reason to give her what freedom she needs.  Except for when she's endangering herself.

Even if it is extremely and grossly messy.

Ugh.

But, I suppose this is a good sign.  She's maturing.  And if she wants something, she'll work hard to develop the skills to get it.  And don't get me wrong, I DEEPLY want her to do all these things.  Like yesterday.

Now, to convince her to want to talk.  Or use the toilet.  Or sleep during all those ungodly hours that right now she doesn't.

Liar, Liar. Pants on Fire.

The conversation:

Me to Finleigh after she's walked upstairs with her diaper off and poo smeared down her leg and after I've given her a piece of my mind as to what I think about her taking her diaper off.

Me: Did you go poop?

Finn: Ya.

Me:  Did you take your diaper off?

Finn: (Looks wide eyed and shakes her head).

Now, I know that as parents we're supposed to be mortified when our children lie to us, but I was dancing inside.  Is it possible?  Could it be?  Has Finleigh met that milestone where she understands how to lie to get out of trouble???

I mean, this is a big deal.  Here, read this:

Indeed, bright kids—those who do better on other academic indicators—are able to start lying at 2 or 3. “Lying is related to intelligence,” explains Dr. Victoria Talwar, an assistant professor at Montreal’s McGill University and a leading expert on children’s lying behavior.

Although we think of truthfulness as a young child’s paramount virtue, it turns out that lying is the more advanced skill. A child who is going to lie must recognize the truth, intellectually conceive of an alternate reality, and be able to convincingly sell that new reality to someone else. Therefore, lying demands both advanced cognitive development and social skills that honesty simply doesn’t require. “It’s a developmental milestone,” Talwar has concluded.

To read more on this topic, go here.

Now, of course I did the responsible parent thing and told her that she did indeed take off her diaper and dealt with it as best I could.  But my friends, my daughter can lie.

There's not a prouder parent out there right now than I.

* Thanks to Sharolyn for the picture.

Cucumber, meet Finleigh

Please, dear God, make this phase (which should have ended a year and a half ago) end SOON!

My daughter is incredibly busy.  Into everything busy.  I can't sit and do anything busy.  Almost never stops busy.

For example:

Finleigh opens the fridge door, grabs a cucumber, brings it over to me and says, "cu, cu".  Which I assume means "cut".  I think this is strange because she doesn't usually eat cucumber, but who am I to refuse a kid a healthy snack?

So I slice up half the cucumber, put it in a bowl, call the boys over and the kids have a cucumber snack.  Or rather, the boys have a cucumber snack.  Finleigh has lost interest by this point and is off to bigger and better things.  I wrap up the remaining half of the cucumber, put it back in the fridge and head off to do whatever it is that I deem important.

The boys finish their snack and go on their merry way.

Finleigh then reenters the kitchen, pulls out a table knife from the cutlery drawer, retrieves the cucumber from the fridge and goes on to, "cu, cu".

Don't believe me?  I have photographic proof.

And from the other side.

Oh. My. Word.

What on earth is a mama to do?

Ewwwww

Looks innocent enough.

My little girl indulging her addiction.  Drinkable yogurt.  Oh yum.

But seriously?  EWWWWWWW!

And yet, so very hard to stay angry at that.  It is just a little wipe with the cloth after all.  Right?

Check out Special Exposure Wednesday.

Props to my sister for these pics too.  Oh I love it when my sister visits!

Game Changer?

Okay, so I may have the camera equipment, but I don't have the skill that my sister has.  This is my sister's work.  And there are many more that have captured by daughter just as beautifully.  This is Finleigh being mischievous.  Look at her hand about to turn off the light.

I've been going back and forth about whether to write this post or not.  Even now, I'm not sure that this will be posted.  But my pediatrician suggested that Finleigh may have something that quite frankly feels like it would be a game changer.

We know that Finleigh's delayed and there's probably something else going on there.  But I've been quite content to go around in my little mommy fog and believe that she'll one day, hopefully grow out of it.  She's bright, everyone says.  Look at her eyes, there's a light there.  A sparkle.  She's so curious and determined, she's bound to catch up.  I don't care if it takes longer than the average kid, as a parent I still have a picture in my head of a happy, healthy, well adjusted, contributing member of society person when she grows up.  Emphasis on the happy and healthy part.  Even bigger emphasis on the growing up part.

So, when her doctor pulled out a pamphlet on a degenerative genetic disorder that's incurable (though partially treatable) and rare (1 in 100,000), I wasn't real... uhh... happy?  Please, may I just live in my mommy fog?  False hope or not.

Long story short.  Finleigh is going to have her blood tested for MPS 1.  She may or may not have it, though she ticks a lot of the boxes.  If you'd like to read about it, check out this or this link.

We've been through this before.  Genetic testing.  Waiting to find out if she has this or that problem or syndrome or disease.  But this time feels different.  I have a knot in the pit of my stomach.  What if this is the one?  It explains almost everything.

Almost, though not quite.

It freaks me out.  I go between utter terror to complete denial.  From thinking that this is it for sure to knowing for sure it's not.

I don't know when we'll know.  It could be months.  But when I find out, I'll be sure to let you know.  Until then, I suppose we're back to regularly scheduled programing.