Update (from K)

Hi, everyone!

My mommy apologizes for leaving all of you in a state of suspense regarding my status. She has been pretty busy taking me to appointments/ therapy, hanging out with A, learning how to be a combination nurse/ respiratory therapist, teaching a Bible study, google searching medical journals, managing my home health nurses, thinking seriously about cleaning our house, learning how to be dairy-free (more on this later) and sitting down every once in a while to watch 24 with Daddy. (Really, she reads while Daddy watches, but whatever. They’re both happy.) Anyways, I guess we’ll cut her (some) slack for not blogging lately.

So, I’ve been making lots of progress lately! I’m getting much stronger and hitting some big physical milestones– I can hold up my head, roll from side to side, kick stuff, reach for stuff, and pull on fun things like earrings and hair. I still have to wear my splints, but I get lots of breaks during the day so I can move around. As one of my therapists said, I am no delicate flower. I am very strong. Sort of like Katniss or Wonder Woman (sans hotpants, plus diaper).

I particularly enjoy watching Big People. My mom is a favorite because she’s so pretty and wonderful. My dad is always great to watch because he’s basically like MacGyver. Also, I love watching Little Big People like A– she’s always doing something fantastic like disciplining her baby dolls or making castles out of couch cushions. If I like you, I’ll give you a wide, gummy grin. If I don’t like you, well… you’ll know. Also, I’ve recently discovered that Peek-a-boo is both confounding and hilarious. (Seriously– where do you go during those few seconds?? I hear your voice, but you just vanish a la David Copperfield.)

I’ve found that the best way to fluster my parents and nurses is to spit up. Typically, it works best if I time it immediately before we go somewhere or right after bath and trach care. But, it seems that the Big People are catching on to my plan. My mom has even started a dairy-free diet to see if that keeps the milk down. She seems to miss cheese, but Aunt Jessica has given her some dairy-free tips that help her stay on track and keep my food milk-protein-free. I guess I’ll have to work on a new plan if this diet thing actually works.

Oh– by the way– my vocal cords are working. My parents took me to a new ENT a couple weeks ago; he stuck this camera down my nose (bad) and said he saw some movement in my vocal cords (good). I could’ve told everyone this before, but this dang trach keeps me from being able to say anything. (Contrary to popular belief, my vocal cord paralysis is not what keeps me from making noise. It’s the trach, which sits lower than my vocal cords. The bilateral vocal cord paralysis kept me from being able to breathe, which is generally considered important. Hence, the trach.)

So, since we saw some movement, we are working toward attempting decannulation. (A fancy word for “get this thing out of my neck so I can breathe through my nose and mouth.”) Again, in the medical world, breathing is mostly thought to be a priority, so decannulation will not happen quickly. Everyone wants to make sure my lungs are safe before taking out the trach, and I appreciate this gesture. The ENT wanted us to do a few things before we go back to see him. Here’s the list of steps we have to take:

  1. Increase my reflux meds. Result: I guess this works, if I don’t spit it up. Haha!
  2. Complete a Swallow study to check for aspiration. Result: Unknown. They put me on this table with this giant x-ray machine above me and put my mom in the corner so I couldn’t see her and then all these strange Big People were in my space. Then, they expected me to actually swallow something that tasted like sugary chalk. I don’t really like stuff in my mouth anyways, so forget that! I didn’t aspirate, but I only swallowed approximately one drop. Shows them not to do terrible things to me!!
  3. See a pulmonologist. Result: Great! He and my mom and nurse had a great chat, and my lungs look fabulous. Mommy and Daddy feel hopeful after that appointment!
  4. Check in again with ENT. Result: TBD. We go on Wednesday!

For obvious reasons, we are hoping that I don’t have to have this trach for very much longer. We will see! I’ve surprised everyone before, and I hope to do it again soon. It is really the best policy to keep all Big People on their toes at all times.

Love, K

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