Monday, February 27, 2012

Disney-Universal Part 1

I didn't post over here at all for the last week and a half, because I was getting ready for and taking our family to Disney World and Universal Studios Florida.  It was crazy...bad and good.  Memorable for sure.

I guess you could look at the post over on my family/personal blog as Part One, as I have more to say over here...truthfully, probably tomorrow...

Part 1

But I figured that I better I don't get overwhelmed!  :)

Tuesday, February 7, 2012


We spent the first 5 years of Elise's life praying that she would gain weight and get ON the stinkin' charts...and now, we are a little concerned about her activity level and snack intakes.  The doctors are not concerned yet.  They assure me that she is still in the healthy range, but she is certainly edging up to the top of the bracket.  She is still growing up and they aren't worried about her increase in weight.

I am not concerned for now.  I am concerned about the habits that are being formed.  I am pushing the high protein  snacks, getting away from the highly processed carbohydrates.  I am trying to get her into the habit of exercise now, so if and when she needs to, it will not be a foreign torture. 

This has been difficult.  She is not terribly coordinated.  She does not follow rules well enough to jump into typical peer sports.  She can run, and run she does in Target and down the halls at school...on the road in our neighborhood?  Not so much.  So I've been trying to figure out how to up the energy output.

Our golden fall-back, is actually a sensory discovery.  She LOVES the input that she gets bouncing on the trampoline.  She'll jump just like a crazy thing for quite a while.  So that's what we are doing here at home.  But she needs the rest of us, one thing gets boring after a while. 

I've considered joining a pool, as a family, just for her...but they none of them are close by...

Today I stumbled on a surpise.  I turned waaay up the tunes on my phone while I was cooking...and Charlotte was lured in like a moth to a flame...and we commenced to jump around like crazy people.  And Elise was lured in by the crazy that was going down.  And she joined us in the jumping around like crazy people.  For 45 minutes.  No lie.  Really?  I've been worrying for 6 months?  And it's under my nose and FREE and IN MY HOUSE!?!?!?


Tomorrow I have a date with iTunes.  I'll be uploading all of the songs that Elise particularly loves from all her movies...and Voila!!  We have a workout!!!! 

I'll let you know how it goes.... 

Monday, February 6, 2012

Happy Heart Day!!

Happy 9th anniversary of Elise's Open Heart Surgery!

This is the day I was given my baby back, and the Downs became a side story in her life. I cannot believe it's been that long. And the 3 month, 6 pound pixie has become a force of nature that brings joy through like a steamroller!!



Just getting better!!!  :)

Saturday, February 4, 2012

Linkity Split Day

My Special K's Choice

A funny and striking perspective on Autism:

Another jewel in my favorite subject, the idea that disability is a natural part of life and is a blessing, despite the struggles:

New parent alert, in case you want to go over and welcome this gorgeous family to The Club:

My hero Stephanie Hubach is releasing a new study for Special Needs ministering:!resources

I am struck over and over how great the blog Flappiness Is...what great resources, and what an overarching message it has for all of the special needs community:
the one that lured me in:

Oh, and in case you missed it, Smile as Big as the Moon was amazing!  If you get a chance, buy the DVD, this isn't the best link, but it's the first that I've found with the real, actual team picture featured:

And that's all for today!  Have a great weekend!!!!

Wednesday, February 1, 2012

Breathing Easier

This is the embodiment of HOPE.

I really mean it.  You make look at it and see a bunch of medicine.  But frankly, a lot of our life results in a bunch of medicine. 

This are preventative measures against Elise's chronic croup and breathing issues. 

Croup tends to be a standard childhood passage.  In infancy.  Very few kids get it past the age of 2 or 3.  A few will drag it up to 5, VERY few will succumb to it after then.

As a history, if you don't know us, here is the short version.  If you know us at all, you know that Elise sounds sick for a good 5-7 months of the year.  She gets a bark-y cough and sounds like a hardcore smoker about once a month.  We try and head it off for a couple of days and sometimes we win, sometimes we call it in, sometimes we wind up sitting in the waiting room catching whatever the "IT" virus is so the doctor can tell us that is is exactly what I told the nurse it was.  I send her to school when the doctor says to, after we treat each bout of croup.  She will loop the standard croup, to bark with congestion, then a wet cough, then will be clear for a week or two then begin again.  She typically starts in September or October and then plays this game through April-ish.

This year she started The Loop early,in August, but took off some time in November so I was lulled into a false sense of security.  SO when she started off this year with her usual, but it never went through the usual went from croup to wet coughs and congestion to croup, with no down time at all...I got a little concerned.  PLUS it was interfering with her surgery...or lack thereof (2 cancellations) the second cancellation, the ENT referred us to the pulmonologist.  We've not been to a pulmonologist since Elise got RSV and then vaccinations for RSV when she was under the ripe old age of 1.  Despite 9 full years of The Loop, every time I asked any of our doctors about it having an underlying cause, they blew it off. 

Note to all you mamas out there.  If you suspect an underlying cause, ask more specialists more specific questions, ask specialists that specialize in the area you question, because you probably know!!!!!

I promise, I am returning to the subject at hand....OK.  So, Elise was stuffy, but no croup or really good coughs at the doctor.  Which, isn't that always the case??  I figured I would be sent out with a "Yes, you are crazy.  Kids get sick"...and all that.  But, despite the fact that she was all clear, they decided to x-ray her chest anyway.  Usually, she hates being x-rayed, but they had her stand up.  She felt MUCH more in control...we'll beg for that in the future...for everything.  I mean it.  Feet on up.

Thankfully, he insisted on the x-ray, because we discovered that although possible that she has had scarring due to multiple intubations, it is not restricting her airway.  She has evidence of bronchial asthma.  What makes this interesting, is that most asthma is esophageal in nature.  What this means, is that she has the inflammation down into her lungs, but not in the upper airway.  Which explains why most of the medicines have not fixed the problem, and have prevented other doctors from catching this. 

The sad part, is that this is the kind of asthma I have.  I was an ancient 24 year old before we caught this...which explained my chronic bronchitis, bronchial pneumonia, pneumonia, pleurisy, etc...but, as with my daughter, I had all the consequences treated, but none of the underlying problems treated.  Since I got an inhaler, I've not gotten pneumonia.  Not once in 12 years.  Crazy, huh?  But even knowing this, I failed to push the doctors hard enough, because it was ONLY croup...*sigh*

I came home with 2 inhalers, one bottle of daily tablets, and a little extra prednisone for bad days...And while it is a little daunting, Elise is cool with one of the inhalers.  The 2nd inhaler, has a crazy bong-looking thing for delivery.  It has a bear on it.  Now, I always thought it was stupid to make pediatric packaging for anything other than size.  I take back every negative thing I've ever said.  Elise will breathe her inhaler ONLY after she sees the bear breathing his on the tube.  No lie.  I love that bear.  I love the stupid guy who thought that'd be a good idea in processing.  Because it is brilliant.

Now, I have a huge hunk of hope that this will fix our monthly fight with the ICK that rules our winters.  I really believe this will make a huge impact on Elise's breathing.  I am excited.  Reservedly, but honestly excited!!!

Please pray with me that it is the miracle I hope it is!!  :)