top of page

June 14, 2019

Julia had a really good day today!  Her vitals are great.  Her heart rate is coming back down into her normal range of 120-140.  No vomiting for several days in a row!  In rounds they decided to switch her Clonidine medicine from an arm patch to through her J tube.  This allows them to start weaning over time.  This medicine is used to treat high blood pressure (which started due to the pressure on her brain stem / her nerve pain medicine, which she's been off of for a bit).  So that's great news that she's doing so well with a lower blood pressure that they'll start to get another drug out of her system.

Reed is home today to visit with his favorite little guy =) The nurse has been with Julia all day and said she's just been a happy little girl! (Took really great naps without daddy there to distract her.)  She asked if Julia wanted to color, to which Julia did her yes-bounce-nod.  And then she asked if Julia wanted to get into the highchair to color - more yes-bounce-nods  .  But then the nurse went to move her and the 'no finger' came out in full force!  Abort mission!  But she was content as soon as she was settled in her chair =) She colored for about 45 minutes and had a real good time.  She's doing a fantastic job holding her head up, and even tilting it forward to lean over her coloring - it's such good PT for her.  And we have a new Peppa activity book, a magnetic activity kit, and a home-made felt activity board that we are going to start using with her in the highchair - they are perfect!  Thank you to her loving Facebook family <3 

Picture tonight is of a VERY happy-with-herself baby who turned her arm into a colorful masterpiece.  Matching happy video in comments =) 

And I wanted to share two gifts she just received (and for every gift I share, there are several that I don't - I need to get caught up and share ALL the love <3).  Catherine sent her a beautiful Peppa pillow case with Julia's name on it.  But besides that... I'm super blown away by her branding!  The pillow case, card, card envelope, and even shipping label, down to the colors, fonts, and perfect handwriting.  Even the stamps look like they were applied by a machine!  Catherine - your packaging perfection is appreciated =)

And the SWEETEST picture was dropped off last night.  One of Julia's long-time followers, who is 14, drew this picture of Julia when she found out her dad was traveling to Philadelphia for a conference <3 He woke up at 6am and found it sitting on top of his suitcase =) So he hand delivered this to CHOP just for his daughter.  I mean... dads going out of their way for their little girls is obviously something close to my heart right now <3  It's beautiful - the picture, the daughters, and the family.  This picture is getting framed and is going right on Julia's wall <3 

(I don't tag people just to respect privacy - but if it's ever cool with you guys, just say the word and I'll get you tagged!  I did try to find the pillow case organization, but I'm not confident it's the right one because the logo is different.  Happy to add a link if I have one.)

And an update since people asked - my diagnostic mammogram appointment is Monday.  I should know results immediately since technically they are looking for something.  So hopefully nothing exciting to report Monday night.   Happy baby video in comments <3




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

Julia's *only* pages:  Website: Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe:

Julia's *only* fundraisers:  T-shirts: | Children's Book: Jewelry:


Car Magnet:

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

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

193 views0 comments

Recent Posts

See All
bottom of page