Sunday, November 28, 2010

Happy Thanksgiving!

 I hope you had a nice Thanksgiving.  We were able to celebrate another "first" this year.  Harlie was able to eat her first Thanksgiving meal - ever!  She sat at the table with us and ate what we ate for Thanksgiving.  What an amazing blessing she is - in every way.

Here she is with Tom...

 And me.  It occurred to me that we (as in Harlie and I) have hardly any 
pictures together.  I must correct that!

Getting ready to eat her first Thanksgiving meal.

This is Harlie's drink bottle.   

 I know it is a little nontraditional - but it works.  It allows us to squirt milk in her mouth instead of relying on her to suck from the straw.  She can suck, but she can only get a little at a time (she hasn't learned how to take consecutive drinks from the straw yet).  This helps her get in the volume she needs without completely tiring her out.

Well, I left it at home!  We went to my sister's house for Thanksgiving this year.  She only lives about 15 minutes from me.  But no one felt like driving home to get it, so Tom went all MacGyver and created his own squirt bottle from a Mountain Dew bottle, bolus tubing and painters tape.

And it worked great!  

The big moment!!!


Every day I am more thankful than words can express.  Every day I look at her and feel so blessed that she is with us and happy and thriving.  So many times in her short little life, it could have gone the other way.  And not a second goes by that I don't remember that, and thank God for letting us keep our sweet little girl.  

Another reminder of my feelings (and reality) came the day before Thanksgiving.

Wednesday afternoon, I learned of the passing of a little boy from the trach board (an internet trach support group).  He was six years old.  I found this trach board when Harlie was just a few months old.  And his mom was there, offering her advice and support, while sharing her adorable, smart and spunky little boy with us.  While I never met them in person, I did know them.  And I feel his loss.  And I can't stop thinking about him, his family and how they are dealing with everything right now - and how they will continue to deal with his loss forever.

Back in February, we almost lost Harlie.  Over an infection.  That got into her blood stream and pumped through her heart.  It was too much for her heart to handle and it stopped.

She's fine now.  In fact, she's great!  But that's the thing with a child with complex medical issues and abnormalities.  She's at a higher risk for anything to take it's toll on her.  Something that could be a blip for a healthy child - lands Harlie in the hospital.  Don't like the flu shot?  Eh, a healthy kid will most likely be okay if you turn it down.  Not Harlie.  I don't have the option to skip such precautions with her.  The risk of the vaccine is way lower than the risk of the flu itself.

It is HARD to have a medically fragile child.  I am always very aware of her complexities.  I know her heart doesn't function normally.  I know that it will eventually "run out of gas" and she will need a transplant.  I know what her oxygen saturation levels and heart rate are and that they are NOT like a typical child's.  I know she doesn't have five lung lobes like everybody else.  I know she has a hole in her trachea, leading straight to her lungs, making her way more susceptible to bacteria and infection (and drowning).  And I know that she still has more surgery in front of her, with increased risks there, too.

And that is why I never take her - or anything she does - for granted.  And why I feel so blessed to have her.   And I hope and pray with all my might that I will get to feel that way for many more Thanksgivings to come!



Gretch said...

Sounds like a wonderful Thanksgiving!! I love the pic of you and Harlie!! I too have very few pics of Celia and I,,I am always the one taking the pictures and boy do I regret it!!

Ann said...

I almost checked the "boo hoo" box because this post made me misty eyed. It's so awesome to read how awesome Harlie is doing and all the progress she has made. I loved all the pictures, especially the one of you and Harlie.

Hope you have a fabulous week!

Tanya said...

Happy Thanksgiving!
Love the makeshift straw cup. Meaghan used honey bears. The tubing we had could be worked right through the hole in the cap and the bears are really cute.

grandma said...

I hope and pray along with you...that she continues to thrive, learn and experience the joys of her loving family.

Heather said...

Happy Thanksgiving to you too! I am so happy to hear that Harlie had such a great day. makes me smile just a little bit more today.

B-Mama said...

Great post--such inspiration from your home to ours. Thank you! Praise God for such a beautiful little girl. Glad you all had a great Thanksgiving!

Donna said...

Great post Christy. Love that Harlie had her first Thanksgiving meal! We called Alex's "Thanksgiving in a Bucket" after it was all pureed!

Susan said...

Every bit of what you said rings true! We must be thankful for the moments we have together and all the blessings we do have. I love that Harlie got to eat her Thanksgiving this year. Though I did freak a little about the colorant bottle. With the juice it looks quite real. Yikes. Loved Tom's invention. Necessity being the mother of...

Allie said...

So beautiful, so wise, so profound, so smart.
And Christy, you're not bad either...