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Showing posts from June, 2015

Radio silence and playing secretary

I've been pretty quiet lately. It hasn't been completely intentional. It's been a pretty wild & busy summer by our family's standards. There have been some really awesome things that have happened, like when I was invited to fly across the country to speak at a sales meeting for a large company that manufactures many of the products that we tubie families depend on to keep our kiddos alive & thriving. That was a great experience for me. Like, really great. As it turns out, I love public speaking! I always have, but give me a topic that I'm passionate about and I really REALLY love it! That is something I really hope to have more opportunities to do in the future.

We also got to have my mom come and visit while I went on my little mom-cation for my speaking engagement. She held down the fort while Donny was working and she even got to experience the joy of re-inserting an accidentally dislodged G tube while I talked her through it over the phone. I was so pr…

The dad who also feeds Raya

I think have done a great injustice on this blog. I think I've made it sound like I'm the one who does it all. I'm not and I don't. I'd be lost without this guy:

We were kind of just babies when we got married. I don't think we really had a clear picture of what we wanted out of life, but we knew we didn't want life without each other.
I chose well, and I like to think he did too. We make a good team. The kinds of challenges we have faced in the last 5 or 6 years have tested us in ways we had never been tested in. I think we have also found joy in places we hadn't found it in before though, and I think we have gotten better at being happy in whatever our circumstances happen to be. We've learned to lean on each other and to trust in God and His plan for our family.

I am a stubborn person. Too stubborn for my own good much of the time. Remember how I make it sound like I do everything? That's because I TRY to do everything. Sometimes I can manag…

Aspiration.

Until I entered the world of parenting a child with medical challenges, the word "aspiration" meant a goal or something I hoped to become. I probably had heard of the other definition but I had no experience with it. (or at least I didn't think I did. In retrospect, I'm pretty sure Ashtyn has had aspiration pneumonia before but I digress...)

According to Merriam-Webster, definition 2c of "aspiration" is: the taking of foreign matter into the lungs with the respiratory current. That is the definition we are dealing with this week. It's not Raya though...

I've known since Piper was born that something was not right with the way she swallowed. Her suck-swallow-breathe coordination was not good when she was a newborn. She squeaked. She coughed. She held her breath. She refluxed. She sounded rattly and wet. At 2 weeks old, she got sick with nasal congestion (another sign of trouble) and when she drank bottles while she was sick, she turned shades of blue…