time is funny that way.

Look at their faces?  It’s joy.  Simple joy.  It snowed.  They are happy. Simple as that.  They see it for what it is, a moment.  Time travels by in moments for them.  They enjoy them or they don’t.  One moment to the next.  Time in a child’s eyes.  What a gift.  Unfortunately you don’t realize what a gift it is until you are no longer a child and you wish you could go back and just enjoy the moments.  Time is funny that way.

This was a few weeks ago when we received our first snowfall.  Down it came, in the middle of the day.  I was sewing, it was snowing.  Was it already time for winter?  Really?  Time just goes by so fast.  It doesn’t wait.  It just goes.  If you’re not ready, it won’t wait for you.  It has ticks to tock, that time.  You have to go with it, you can’t go against it.  Time is funny that way.

I found myself looking at recent photos on my computer this morning.  Trying to look at life just being life, time just passing, a day in the life if you will – rather, what life was like before Thursday when life changed.  I couldn’t help but look at this picture differently now.  Look at that smile on his face.  Look at my daughter catching snowflakes in her mouth.  That’s what the first snow is when you’re a kid.

They don’t look at the first snow fall and think, “Wait.  Not yet.  I still have to put the garden to bed.  The lawn mower away.  The pots in the shed.”.  No.  They think.  “SNOW!”.  And there is joy.  It’s simple really.  And now I see it.

The first snowfall IS exciting.  It’s beautiful.  It’s simple.  It’s a moment.  And I guess it’s better I found joy in that moment later rather than never.  Luckily I was able to capture that moment in time with my camera, look back at it today, and appreciate it for what it was.

Thanks Nikon for doing that for me.

Now time is doing it’s thang and if I don’t get tickin’ I’m going to miss a meeting in a half an hour! Yep, time is funny that way.

thankful

This little prince of mine has me counting my blessings daily.  We went in for lots of procedures on Thursday and came out with a new and improved outlook on life.  Every day is truly a gift just in case you have started to take them for granted!

I routinely try and coordinate several procedures to take place while Young Flanagan is under general anesthesia, it just makes sense.  This past Thursday we had a lot of things coordinated to take place…

*GI was coming in to perform an Upper Endoscopy and take some biopsies – this went well.  She also put a PH probe in place.  This went well until he woke up.  It only got worse as the hours went on and by 5pm that night, he had ripped the thing out of his nose.  Little did I know it would be a blessing in disguise.  Instead of a scheduled overnight in the hospital, we would sleep in our own beds on Thursday night – and that was something that would be more than needed by then!

* The Oral Surgeon was coming in to remove some baby teeth that never left when their permanent replacements arrived – this too went well and his teeth are in great shape so says the doc!

* The ENT came in to remove an infected ear tube, clean out his ear canals and take some molds for hearing aids – also went well.  We are all looking forward to what Young Flanagan does with his new and improved hearing when it arrives!

* Cardiology came in to perform an Echocardiogram per the Neurologist’s order as we are still trying to figure out what is causing the TIA-like episodes he’s been having since April.  Remember this nightmare….   I had no idea Thursday morning that this simple procedure would be solely responsible for changing my perspective.

Typically with Young Flanagan, most of the tests we’ve done since April have come back normal and we walk away with…okay it wasn’t that so now what do we think it could be?

What we learned on Thursday is something we thought we had avoided all this time.  A heart abnormality.  They say 50% of children with Down syndrome are born with a heat defect.  My ongoing joke since autism entered our life was that we traded heart defect for autism!  That was funny up until Thursday.

Young Flanagan has an Atrial Septal Aneurysm.

It is not a typical heart defect associated with Down syndrome.  Of course – nothing we do is normal!  He does have several pinhole size holes known as an Atrial Septal Defect, or ASD – this is one of the heart defects associated with Down syndrome.  The cardiologist is not overly concerned with those pinholes at this time.  The Aneurysm is the problem.  What that means is that the wall that divides the two upper chambers of the heart, the Atrial Septum, is floppy.  Whenever there is increased pressure whether he coughs, sneezes, has a bowel movement, etc… this floppy portion creates a windsock that then pushes to the other side.  So if there is pressure on the right side, the windsock pushes to the left side creating a recess where blood pools and clots.  Whatever is gathered there is then thrown out and heads to his brain.  So if there are clots there – they go to his brain.  This is creating the Transient Ischemic Attacks or TIA’s that we have suspected have been occurring since spring.

Now you know why I am thankful.

If you are interested in following us on this journey, pop on over to our CarePage and say hello.

Now if I don’t go to the store and buy a turkey, we’ll be having a very non-traditional dinner on Thursday!

run turkey’s run…

I spy with my little eye…

…TURKEY’s…

20 of them in fact!  Run Turkey’s Run!