Sunday, March 5, 2017

Heart Month/Trisomy Month

February has ended and March has begun.  (I'm told it happens that way every year, who'da thunk?)

Anyway, the effort for education and advocacy continues.

Still, today, in this country, families are told that their babies with Trisomy 18 and 13 won't live, can't live.  And some can't.  But other babies without trisomy also sometimes don't live, for a variety of reasons.  And many, many babies with trisomy are living.  

Then parents are told told that IF their baby lives, it will be awful, horrible, painful, a terrible existence, worse than death.  And that breaks my heart.

So that brings me to my goal for March.  Let me show you what life is like with Aaron.  It's not awful, horrible, not usually painful, and certainly not a terrible existence.  I've said before that if quality of life is measured by how much joy you get from life, Aaron's figured out the secret.  He's got it made.  It's not all roses, but whose life is?

This week has been a good week, a really good week for him.  I'm told that often it takes several weeks for a heart to fully respond to a new medication, and I think we're finally seeing some really awesome results here.  He's used less oxygen and been more playful than we've seen in a very long time.

There is a glitch of course (isn't there always?)  Remember back to the beginning of February when I talked about the blood in the trach?  Well, that resolved fairly well and I thought we were done.  But then on Thursday, it came back.  And it wasn't in response to suctioning.  He was gagging and retching, and suddenly, there was a lot of blood in the trach again.  A couple of catheters full of fresh, frank blood.  No bueno, at all.

So tomorrow he's going in for (hopefully) a quick scope of his trachea.  The concern is that it sounds like the trach is wearing away at the inside of his trachea, and since there are arteries in the area, well, 'nough said.  We need to make sure.

But still, he is so, soooooo happy!!!  So we're going with that.

Day 26. Inspiration. When I can't find my way, when I need more than I've got, I look to God and the Temple and remember how much He has already given me. 









Day 27. Joy. If quality of life is measured by the joy you find in the journey, Aaron has the best life of anyone I know. 








Day 28. Love. What else can I say?





Day 1. Life is beautiful (just like his shirt says).




Day 2. Trisomy awareness. Sleepyhead is NOT a morning person. But if you want a late night party, he's your man! 




Day 3. Trisomy awareness. "Hope is being able to see that there is light despite all the darkness." Desmond Tutu







Day 4. Trisomy awareness. Busy Saturday for this kid. A trip to Costco and to soccer to cheer on one of his favorite players! 






Day 5. Trisomy awareness. Got my smiles on for church! Happy Sabbath everyone!








The fight for the right to life is not the cause of a special few, but the cause of every man, woman and child who cares not only about his or her own family, but the whole family of man.

Mildred Fay Jefferson

2 comments:

  1. Fingers crossed that it's a quick fix. His smile makes me so, so happy!

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  2. I love reading your updates. I'm sharing your page on mine with the hopes that T18 kids and their families get the support they need!

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