top of page

March 11, 2019

She was up ALL NIGHT, until 8am, with vomiting, so she and Reed are very tired today.  Things seem to have slowed down (a little) and she's finally getting some relaxation, but she's understandably grumpy.  Poor little girl with a belly ache on top of everything else =(   Her vitals are stable: heart rate 140s, ET high 40s, BP 105/76.

My sister sent me an interesting suggestion that I believe was commented on my post last night (I didn't see it myself) -- but I believe someone said that after their eye surgery, it made them vomit to have both eyes open at once.  And it's interesting that Julia's vomiting really started just a few days ago, when her right eye began to open.  We have no idea the quality of vision, if any... so if it's swimmy or doubled or otherwise making her dizzy, it could definitely be causing the nausea!  And since she's only 2, she'd have no reason to try keeping it closed.  So they recommended an eye patch.  The staff is getting approval for it (apparently the 'skin experts' need to approve anything taped or otherwise... touching her... which is weird because they don't need to approve her headbands).  But whatever, I guess.  I think tonight they will try the patch for a while and see if that has any effect.  But it was a really interesting suggestion!  Things like this would never even cross our minds if Julia didn't have a whole world of knowledge and personal experiences helping her out <3 <3

She started her third round of chemo today.  That will run for 5 days, and then she will get her boosters.  [Actually, kind of unrelated, I just remembered I want to bring down my "shot blocker" to Julia - I didn't realize her boosters were shots, and she gets them in her legs for like, 6 days in a row!  She hates them =( I had picked up this thing on Amazon months ago and it is AMAZING.  It is super cheap and works great - me, Reed, Charlene, my 12 year old niece, and my coworker have all tried it... you seriously feel nothing or almost nothing.  And it's like, $5.  Since I'm bringing it down for Julia, I thought I'd recommend it to all Julia's Facebook friends in case you have kids (or yourself - no shame) who hate shots.  Amazon: ]

She also started her new elemental formula.  The idea is to use this for 7 days, during chemo, and then switch to something with more robust, plant-based nutrition, made with real foods.  I really hope this has a positive impact on her recovery =) She also has a few vitamin patches (a more effective delivery system while chemo messes with her gut) but those are being held up in the pharmacy.  Apparently 'another team' needs to look into them.  They have one more day to approve them before I stick them to her anyway.

Speaking of... I just wanted to say that our hospital and doctors are really fantastic (other than that one jerk doctor that we don't have to see anymore... I'll be sure Julia sends him Christmas cards every year as she grows up.)  ANYWAY.  The entire staff is amazing, especially the nurses, who are seriously wonder women... and a single wonder dude.  In addition to being endlessly knowledgeable, calm, and compassionate; they've been so receptive of passing along all the suggestions we get from your comments (and sometimes we get a lot!)  The hospital has their own steps to follow for figuring out what's going on, but when we've requesting something specific, they seem to be very happy to do it.  From the post yesterday, we requested they check for a bowel blockage with an x-ray.  It did show some blockage, but then Julia had a giant poop, which was great (Edit: and another - go Julia!)  And they confirmed Julia's shunt was re-checked after the MRI, but they're checking it again for pressure relief and proper drainage.  And they jumped right on the eye patch suggestion, so something should be done tonight or tomorrow =)   I'm really hoping that between all these suggestions, they find the cause of the vomiting and can give her some relief.  

So that's all for Julia tonight.  She's sleeping soundly in between her barfing in the pic <3 ...And I just got news today that my first trach class is this Wednesday.  Uuuugh.  

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

Julia's *only* website: Julia's *only" Facebook page: Julia's *only* GoFundMe: Julia's *only* official fundraisers:  T-shirts - | Jewelry: 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

421 views2 comments

Recent Posts

See All



Hello. I have been following Julia’s story since right before you got the really bad news. I wait for your updates every day. My daughter is just a couple of weeks older than Julia so this really strikes my heart. Anyways I have been reading about all of her vomiting and how consultation is a possibility since that’s happened before. My daughter also deals with constipation problems. She is currently taking 2 daily laxatives. One of them is miralax and the other is senna. The miralax may not be something you want to do with Julia as it is not natural. However the senna is a natural laxative and it apparently tastes great bc my daughter takes the syringe and…

bottom of page