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April 12, 2019

Another good day for Julia.  Vitals are fine.  No vomiting at all.  She's really fattening up again!  Which is great to see... I posted a picture after her halo was taken off back around Christmas, and she was skin and bones.  You could see every rib =( Now she's plumping back up in the belly and legs - it's really nice <3

We were told they expect her MRI to take place sometime next week.  I'm already nervous.  I mean... how could it possibly be worse?  It can't, right?  It HAS to be better?  She's just improving so much... We don't have a date, but sometime next week.  And ophthalmology will visit again on Monday to take another look at her right eye.  She's been scratching at it, and it's been tearing, so they want to see what's going on.  It's most likely just dry because she can't really blink it very well (they do put drops in often, but they only do so much if you never fully close it).

She had another PT session today.  Look at her sitting up and waving to daddy in the picture!!! She HATED it at first, but calmed down after some long hugs.  They really just sat her up for 30 minutes, and let her do what she had to to learn to balance herself and get comfortable again.  So they have to support her back (so she doesn't flop backwards), but she's not collapsing down on herself or something (if that makes sense).  She is doing a pretty good job holding her head up on her own, though it's clearly a struggle after a while.  And she was trying really hard to lift her right arm.  She kept managing to get it just high enough to tug on Reed's shirt to pull him close for a hug <3 Her left arm stays down at her side so far, but that's not surprising given limited rehab.

The 30 minutes of PT knocked her out for HOURS.  Like, 8 hours.  She barely woke up to complain during a diaper change, and then she was back out.  They even deflated her cuff again for a whole hour, but she didn't make any noise because she slept through the whole thing!

Oh, and last night after my update, she FaceTimed with Aunt Charlene and cousins (12 year old Kinley, and 8 year old Joshua).  They sang to Julia for like, 45 minutes, and she LOVED IT.  They sang all the nursery rhymes and toddler songs they could remember her watching on YouTube before she was sick.  She tried to sing along, and smiled, and moved her arm like she was dancing.  Every time they stopped she'd mouth, "more!"  She kept them going until she couldn't hold her eyes open any longer <3 It was just the sweetest thing ever... especially these two kids spending so much time singing silly songs to their little cousin <3 

*******And a quick update on me [Edit, OK, kind of a ramble upon re-read].  *******

My discomfort (I hesitate to call it pain at this point), is still there and consistent.  I didn't get around to my HIDA scan this week because I was just too busy.  And it's not getting worse.  I was pretty sure it was in no way anxiety related, because in general, I feel fine - like I'm handling everything pretty well.  I know what a panic attack feels like (like a heart attack for me), and this is nothing like that.  So I disregarded anyone's suggestion that it could be that.  

But today... definitely changed my mind.  Reed never calls me.  Like, not allowed to call me.  In our entire relationship, I think he's called me like, 5 times. He texts me if he needs to tell me something.  The ONLY time's he's called since October have been with very bad news - bad test results, bad MRI, and the last time was in January to tell me Julia was literally dying.  And I remind him kind of regularly to NEVER CALL ME unless it's urgent - because I freak out.  

Anyway, I woke up this morning and saw a missed call and voicemail from Reed.  To say I panicked is a complete understatement, but I can't think of a word to describe what actually happened.  I instantly listened to the voicemail, and within about 12 seconds, I realized he butt dialed me. I could hear him talking to her in the background, clearly nothing going on.  No big deal right?  NOPE!

I realized after this how wound up I am.  I THINK I'm handling everything fine, but I'm clearly not!  I must feel "OK" as some sort of defense while coping with my father's passing (and my cat, and my home-life changes, and Julia's diagnosis...) or something.  Because I keep telling everyone I'm fine... and I really believe I'm fine.  I feel fine.  But this physical reaction to LITERALLY 12 SECONDS of "worry"... like - it wasn't anxiety at that point, since I KNEW it was a false alarm.  So this was after the fact.  This was a reaction TO anxiety, or something.  But (TMI) I instantly broke out in a sweat... like, sweating from every inch of my body (which was a very unusual sensation), and had to run to the bathroom to puke, and then I had awful stomach cramps, and had to pace around downstairs for 45 minutes, in between running to the bathroom with diarrhea (sorry) and trying to get my heart to stop pounding.  I swear I could hear it.  I paced back and forth, I walked outside, I turned on music... I almost called my anxiety buddy (Hi Alicia), but I didn't. 

Like, this seriously messed me up.  12 SECONDS(!!!) between, "OMG why did Reed call??" to, "Oh, no big deal", and it wrecked me for nearly an hour.  

CLEARLY I have pent up anxiety, or PTSD, or stress... or something.  Something that I'm just not aware of until I come across POSSIBLE bad news.  And then it feels like 6 months of terror just instantly comes to the surface.   Anyway, that was the long way of saying perhaps this unknown pain IS anxiety/stress related.  Since it just doesn't sound like anything else.  I've never experienced it before, but I now realize I'm super wound up, even though I "feel fine".  I'll continue testing to rule things out, but I guess this one is back on the table.

But seriously... I'm fine.  

(I kind of laughed while I typed that.  But I mean it.  .... I think.)

Anyway!  So one pic is Julia sitting up!  And the other two are how she's put herself down for a nap the last 2 days - with Tiger right on her face =)

. . . ********************************* ********** Official Links *********** (These are here because of scammers) *********************************

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Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): || Coupon code: danaboyd

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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Dear ones,

I praise God for Julia’s progress! And continue to pray each day. I also pray for each of you and your son. Thank you for your sharing about your 12 seconds.... hour and clearly still as you were writing. I’m praying more for you both now It’s good that you are sharing and not stuffing. You are not alone. God is with you and praying that He continues to put the needed people in your path. Love and hope, Mary (friend of Reed’s cousins...Andrews)

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