January 19, 2012

I'm not sure where to start... 

I guess here's a good place.... Sometimes I wonder if other parents of children with special needs feel and think the way I do.... every Cardiology appointment Im honestly 100% hopeful that they will look at me and say "Conner is all better, he is cured!! His heart is perfect and he's a healthy, playful, and will live a long life!" I honestly with all my being hope with all my might that they will say that to me.  I know they wont, but day dreaming on the way down to his appointment kind of gives me a little more hope.  Until they say.... what they said today...Based on the ECHO today,  they found that his pressures are in the 70s, they were in the 50s six months ago. He 80-90% systemic vs six months ago he was at around 40%. This means that his conduit is narrowing and its narrowing by the valve.  This means that they most likely cannot fix it with a stint (they can but it would make the valve either leaky or leave it completely open.  I think that would in turn cause pulmonary hypertension), so the hope is to fix it by ballooning it. If they cannot fix it in the cath lab (by stinting or ballooning) then he will require open heart surgery this year. 

Conner has continued to hold his own and do amazing at showing the world how courageous he really is. 

Your Scar ( I got this poem from another heart mom)

Sometimes I have those "moments",
When I think...life's just not fair,
Then I think of all you've been through,
And I see the scar you bear.

A faded line right down your chest,
Made with such careful precision,
We wanted you to have a chance,
Could there be any other decision?

And so I trace that "perfect" scar,
Made with the utmost care,
And I realize there is purpose,
Behind this scar you wear.

What have you taught us?
You've taught us how to face a storm,
(Some things are just out of our hands)
Life has no handy guidebook,
(Things don't always go as you've planned)

People come into our lives,
(Sometimes it is just for a season)
But God brings them into our lives,
(And I know that He must have a reason)

Normal, uneventful days,
(The kind that we always hoped for)
These are the days I say, "Wow God",
We just never know what lies in store.

If I can place a feeding tube,
Without even getting distraught,
Perhaps, maybe, I might be...
Much stronger than I thought.

It's okay to be afraid,
And it's alright to cry,
It's okay to feel lost sometimes,
It's even okay to ask...why?

You face life with courage,
(Knowing God set you apart)
Every little thing you do,
You do with all of your heart.

No crystal ball exists for us,
(To see us through each strife)
We only have one wish for you...
An ordinary life.

You've taught us to love one another,
(Helping eachother to cope)
You've taught us compassion for others,
You've taught us to never lose hope.

You already have quite a story,
Which you can someday share,
And I can see it's beauty,
Behind that scar you wear.

January 5, 2011

Where to begin....

We are all moved in and settled into our new place! We love it here!  Conner fell sick on November 28...after about two weeks of fevers, several doctors visits, one overnight stay in Childrens Hospital and one more visit to the ER showed that he was having runs of EAT because of the Rhinovirus yep you read that correctly! A simple cold virus triggered his EAT...And nope he hasnt outgrown it.... sigh.  His heart rate got to 240.  At some point in there it was determined that Conner had MONO.... I know right!??? Well the Monospot test came back positive but the antibodies came back negative. He fevers for 2 weeks straight and then fevers here and there for another two weeks. He is so much better now!

Christmas was amazing!  Auntie Crystal and Uncle Dave came over and we had a visit for Auntie Sarah too!
New Years was simple but fun! :)  Leo and Alex really enjoyed their two weeks off but were excited to go back to school too!


I will update more later :)

Until then hugs!

Also could everyone remember to say prayers for all the little ones in the hospitals...the parents by their bedsides... and we must not forget all the little Angels... and their parents hugging their little ones with their hearts....

Heart Hugs,

Jessica