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May 24, 2019

Some good times and some grump times today.  This poor girl and her snot =( It was really frustrating her today - they actually stopped the HME breathing sprint early because she was so miserable from the mucus.  She has to work a bit harder while on the HME... and it was just too much with constantly coughing and gagging.  They sent a sample of her mucus away for testing, just to see if there are any allergens.  It's likely the cancer/chemo/meds/trach/inactivity, but they just want to make sure there is nothing they could be doing.  They are also adding in a med to help dry her up.  Really hoping for some relief there... she is handling this intense chemo like a champ, this is really her only misery.  

Speech therapy stopped by and attempted to work on communication.  Opinionated baby.  She was NOT interested.  They pulled out the picture board with all the things she could ask to do, and she just kept pointing at "stop" and waving goodbye.  LOL!  I shouldn't laugh... but it's kinda funny.  She knows what she wants, and it's NOT speech therapy!

So OT came in later and she had a really great time coloring <3 They colored with her for quite a while, and then just left the table for her since she was having such a great time!  She colored for HOURS, and dozed off several times mid-scribble.  She even has a new Peppa Pig coloring book from a Facebook friend =)

Right now she's... playfully unhappy that Reed's talking to me on the phone instead of paying FULL attention to her, so she keeps chucking her tiger at him and then laughing and waving.  Like, actually chucking.  And her aim is improving.  It's adorable.  Oh, and every time Peppa comes back from cartoon break she points and says "Peppa! Peppa!" and wiggles all over the place.  Seriously, if we could just get the snot under control... she'd be a happy 2 year old... cancer, surgery, chemo and all.

And I just wanted to mention the trach strings since so many people ask: The trach itself is only about 2 inches long, and it's like... a little flimsy floppy rubber straw with a stopping plate in the middle.  All that's in her throat is seriously only an inch or two (I know some people picture it as like, 10 inches of tubing in her throat - not even close!).  So this little floppy thing needs to be secured to her neck somehow, and that's generally done with velcro ties (sometimes called strings).  These attach to the stopping plate through a hole on either side, and then they wrap tightly around her neck and velcro together.  They are tightened so you can only get 1 finger underneath (that's tight!), but they have to be like that so this short trach doesn't fall out.  Because while she can breathe without the vent, she would struggle greatly without the trach, as there would be nothing facilitating the air entering/exiting her lungs (and the open hole would interfere with mouth/nose breathing).  These ties need to stay dry to protect her skin, so they need to get changed daily, or any time she barfs/drools/snots.

In my trach training, I've now changed the strings several times while someone else holds the trach in place (it's quite the process).  My next hurdles are holding the trach while someone else changed the strings, and then a full trach change.  I'm nowhere near that.  

Picture tonight - Reed looked over around 3am to some commotion and saw this!  She got that little leg all the way out of bed and reached for daddy <3 And BOY was she happy with herself! And short video in comments of some coloring.  Since it's so short, I added a second short clip of them just being brother & sister.  This was August, so she's 20 months (2 months before we brought her in), and fat brother is 9 months <3 


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*********** 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:

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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