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July 11, 2019

Right now we have a drunk-sleepy baby.  She has been refusing a nap since early afternoon and she is so tired she's goofy.  So... happy and playful!  But should have gone to sleep hours ago.  

She's had a decent day, in between grumps.  They tried to get her in the playroom for some coloring but she wasn't very happy.  She was just smacking things and throwing markers.  So that didn't last very long.  Then OT tried to do a session with her - they tried to get her to handle some small objects, I assume for fine motor control, but she wasn't cooperating.  The doctor came back today and let us know that they are looking into PT toward walking - so it sounds like that's moving forward at least with options.  

Her team has commented that they are very happy with her non-verbal communication progress.  She's great at pointing at things she wants.  She's getting real good at clapping - she's starting to clap against her left hand again, but if she's really excited, she'll clap against her thigh or belly so she hears it.  And they're happy with her very obvious yes and no (everyone loves her sassy no-finger).  The next goals with speech therapy are to communicate ideas (rather than just "I want" pointing), and participate more in make-believe play with anything going toward her mouth, like a tea party, being a bonus.

I was ambushed with a trach change today and it did not go well.  At all.  I thought it happened yesterday, but apparently not.  So when I got down here this evening I had about 30 minutes with her and then we had to do it.  It went very poorly.  Well.  That's not true.  The trach change went fine - *I* did very poorly.  After that episode a few days ago, and seeing what she looks like without air... I just wasn't ready to go anywhere near it.  I had been making progress with the changes, but now I'm back to feeling like this is a loaded gun and it's pointed right at her head.   They said I needed to put it in (rather than pull it out) - and that just wasn't happening.  I'm nowhere near ready to actually be responsible for getting her airway in.  So it took way too long to even get me to agree to remove it, and I completely freaked out.  Even with her just lying there ready to go, all I could see was her face turning grey and her gasping for air.  I was convinced she'd die as soon as I pulled it out.  I don't even know how I ended up doing it honestly.

As all four people waiting for me to do something were telling me that everything would be fine, and that this is the best place for an emergency, and they were here if something went wrong... I realized I just don't trust them.  My experience with everything, for years now, has instilled a deep-rooted distrust of medical professionals.  I like them just fine, as people... I just don't believe them.  Because when they say things will be OK, people die.  Or they don't die when they're supposed to (obviously I'm OK with that scenario... but they were still wrong).  So when they told me to pull the trach out, and that "everything would be OK", I just panicked.  

So... it was awful and I never want to do it again.  

But now it's over and she's laying here content and exhausted.  She's back to drunk-sleepy smiles, so hopefully she gets her bath and goes to bed.

Pic tonight: She did a full side-turn to avoid the nurse!  And she's done it several more times today =) So it definitely appears to be a re-learned ability.  And video in comments of drunk-sleepy Julia <3 

YouTube: . .

. ********** ~~ Julia Adams ~~  ***********    ************ Official Links ************* *************************************

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Chordoma Foundation:

If you're new and want to know what's going on, my first post about Julia was on October 31st. You can find them all on my Facebook page or Julia's website <3

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