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June 16, 2019

Julia had a sleepy day today.  Vitals are all getting back to normal nicely, though she's been pretty barfy.  They've upped her meds several times but it's not really doing much.  This happened the last two rounds of chemo and should get better in a day or so.

She's been going through really happy times and pretty grumpy times.  Like, last night after her bath/string change she was the happiest happy toddler ever!  She was giving out smiles, and high fiving everyone (apparently even the respiratory therapists).  And then times like this morning she's soooo grumpy and miserable and slaps and scratches.  With my very limited toddler experience, she appears to be more frustrated than anything (like scared / angry / in pain).  And I'm sure her belly hurting doesn't help.

After her bath last night, Reed picked her up so the nurses could change the sheets and she spider-monkey-clinged again (and even got that left arm up on his shoulder - she was determined!)  So he sat down in the chair and she nuzzled right in for a VERY content nap.  She's getting more and more time out of the bed every day between cuddling and coloring =)

We're going to ask if PT and Child Life can arrange a time for Gabriel to join Julia in the play room, possibly on Wednesday.  It's my understanding that they don't normally let siblings use that room - it's not a daycare and I can see that being abused.  But hopefully they can work something out.  It's just so difficult with him being in her hospital room.  Everything in his reach is some life-saving button or cable, and they're nice bright, toddler-attracting colors.  And of course holding him still is like, the worst thing in the world right now... so it's an experience!  It would sure be great if experts were able to help contain him in the toddler-safe room next to Julia <3

~~ (Not Julia related at all) - My dad ~~

In honor of father's day, I wanted to share a few memories of my dad =) I could write a novel about him, but while driving home I just figured I'd share the first 5 memories that came to mind:

- One year, our friends couldn't make it to our birthday party - it was winter and it had snowed.  So instead, our dad helped make sledding trails down our hill and then put his engineering skills to good use by building an awesome snow tunnel to sled through.  He then carved paws on all sides and constructed this big dog head so it looked like a giant sphynx.  It was pretty much the coolest thing ever, and lasted for like, 2 weeks.  [Edit: I say 'our' because I'm a twin, for those who don't know.]

- When I was an angsty teen of ~13, I bought Marilyn Manson's new autobiography and wanted to meet him at a book signing.  My parents initially reacted as expected.  My dad said "he'd think about it" over the weekend (which I figured was code for "I'll say no on Monday").  But Sunday night he called me into his office and the biography (no short book!) was filled with colored tabs.  Apparently he had spent the weekend reading the whole thing, and he highlighted particular words and phrases.  His deal was: if I could tell him what they meant, he would let me read the book and meet Manson.  I couldn't... since I was 13.  So he kept the book and I didn't end up going.  I always thought that was a pretty cool way of handling a teenager with questionable interests =)

- Shortly after I graduated, dad bought me the most enviable car ever - a $400 Ford Taurus from like, the 1800s (he did what he could!)  I REALLY wanted to drive to Georgia to see my boyfriend who had just finished basic training (we live in PA).  My dad knew my car wouldn't make it there and back, and asked how I planned on getting home.  I said it would make it.  He said he'd see me down south in a week.  Well, I made it down there OK, but only about 45 minutes back before there was a lot of black smoke =) My BGF (Best Guy Friend - did I just make that up?  Probably not, but I'm taking credit) Manny left his Army station in NC to come get me from Georgia, and then dad drove down to pick me up from NC without so much as an "I told you so".

- My favorite trip by far was Yosemite ~7 years ago.  We were climbing up the Mist Trail (something like, 900 steps [don't quote me] right next to a waterfall).  It was supposed to be a nice cooling mist, but we had gone after like, 3 weeks of rain, so it was pretty much hurricane-ice-steps.  Dad had all his expensive hiking gear and camera equipment, but he was having such a fun adventure it didn't bother him at all.  In fact, he yelled over the roar that he wished he was dressed as Gandalf because it would make people happy!  This amazingly positive attitude is something he literally kept until the very end.

- And then finally... renting our office space for our business in 2013.  Dad rented shared office space for a long time, and when that business moved out, he worked out of his basement for several years.  Just with many factors, we never thought actual office space was in the cards.  But we met an amazing realtor, and she worked her magic and got us qualified; and I remember the look on my dad's face when we opened the door and realized the entire floor was meant for us.  For him, it was seriously a renewal on life.  His business was everything, and for the first time, it felt official-official.  We ran the business together, often just the two of us, for years - staying there until he was too sick to work... and then he continued to work for several more months because he was stubborn!  (Shout out to U-neek for continuing to care for all Brad's IT clients <3)

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I was going to write something about Reed, but it's getting late I don't want to rush it when I finally talk about him.  So I'll just say that I agree with everyone who says he's father of the year.  There's no front or anything he puts on for the camera (he'd actually prefer there be no camera!)  He really is a man of unlimited patience and is as selfless as they come.  Not a single time have I seen him get overwhelmed with either of our babies.  He's never woken up after a sleepless night in a grumpy mood.  He's never rolled his eyes at having to change another diaper after finally sitting down.  He's never lost an ounce of his cool as a temper tantrum dragged on to half-an-hour.  He has lovingly and happily tended to Julia literally around the clock since Halloween and there is nowhere he'd rather be (other than of course at home cuddling with two healthy, pain-in-the-butt toddlers!)

Someday I'll write about his unique personality.  He definitely has some things about him that make him different.  Mostly in a good way <3 

~~

Sharing a collage of last Father's Day, and then 2 pictures I put together for Reed: monthly pix with Julia and Gabriel (in comments). And a video of Julia in comments, with an added clip of my father-daughter wedding dance.  Dad picked the song because he said he liked watching Beetlejuice with me when I was a kid.  (He HATED to dance, and had to drink like.... all the scotch to get out on the floor!)

Mammogram tomorrow.  Hopefully nothing awful.  It they say I have cancer, I'm having them cut everything off from my eyeballs down.  

(Oh, and Nick and I saw Aladdin and went to Bahama Breeze in honor of Father's Day <3 The seat next to us was empty <3)

Oh right! Sharing Sunday (man this update is long.  Is anyone still reading?)  If you are, in addition to sharing ANY needs in the comments, please share a picture of you and your dad, or any dad in your life.  I would LOVE to see some father love in the comments today!!


YouTube: https://youtu.be/io4einLhqMM

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


Julia's *only* pages:  Website: juliaadamscancerfund.org Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe: gofundme.com/juliasfightagainstcancer


Julia's *only* fundraisers:  T-shirts: https://bit.ly/2MQc0lF |  https://tinyurl.com/y55lh988 Children's Book: https://amzn.to/2CTTN2S Jewelry: https://etsy.me/2E1mR8i

Tumbler: https://tinyurl.com/yy6oamph

Car Magnet: https://tinyurl.com/y4nxr3lr


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


Chordoma Foundation: www.chordoma.org


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




Reed and Julia <3




Reed and Gabriel <3




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