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!