December 4, 2018

Julia had her first day of physical therapy today.  It went really well.  They got her to fully sit up, and other than a little adjusting, it didn't seem to cause her much discomfort (I was sure the pins in her head / surgery locations would hurt, but they really didn't seem to).  The PTs were fantastic with her, which is impressive since she's only 2 and pretty much doesn't listen to anything.  They had her sit on the edge of the bed, reach for her pacifier, kick her legs, push back against what they were doing, etc.  She got to get a BIG LONG HUG WITH DADDY!! OMG she loved it!  Her heart rate dropped to the lowest it's been all week, she was sooooo content.  She didn't want to let go =) 

The moving got her to start coughing up a LOT of junk.  It went all over Reed.  Her coughing up what's in her lungs is still what the doctors/nurses are most focused on.  There are several reasons she might not want to cough right now - sore throat from the breathing tube / surgery location pain in her mouth / the halo restricting her from doing a normal cough motion.  Whatever the reason, she's making it very clear she's not interested in coughing.  But she needs to cough to get the stuff out!  So she's on a machine once in a while that forces her to cough (she hates it), and she still gets regular breathing treatments/suctions to clear out her throat (she hates those).  She doesn't cry, she just protests by sealing her lips shut.  And she's on a good amount of oxygen just due to the lung junk, so you can see in the sleeping pic that her lips are hanging open funny because a pretty strong current of air goes into her nose and out her mouth at all times.

Her voice is getting stronger.  We got one "dada" and a million "no"s.  She's starting to play with her fingers like she used to, so that's fantastic to see.  During a breathing treatment Reed was asking her to show him some numbers and she held up fingers.  And she was doing the whole "daddy finger / mommy finger / baby finger" responses when asked.  

Medically, her fever is already back down.  The surgery locations on her thigh and belly look great.  I haven't seen the one on her spine, but Reed says it looks the best of all of them.  It's about 4 inches long, and goes from the base of her neck to the bump in the back of her head.  Her hair was shaved in just a small strip around the location.  She'll remain in the PICU for at least a few more days for observation and then they will figure out what to do with her.  My guess is it will be on the oncology floor, since she'll be doing treatment anyway.   But in general, most kids go home after brain surgery / even while getting chemo.  She only needs to stay because we can't transport her in a car seat due to the halo.

So she's doing as well as she can today.  She'll be doing PT every day and I'm sure her daddy hug is going to be the highlight.

And since you're all reading this... I just wanted to say that I've never had to be on the receiving end of support, so now I'm seeing it from this side for the first time.  With my dad's cancer fight, I kept mostly to myself and was strong for him.  I handled all his phone calls, medical arrangements, and the entire business while he grew increasingly ill.  Most people didn't even know he was sick.  I was preparing myself for months for his passing.  So when the time came, I was completely spent emotionally.  This diagnosis with Julia couldn't have come at a worse time - I've got nothing left. 

That's one reason I share what's going on every day.  I can't do it myself right now, after doing it for my dad for 6 months.  So it's really a relief to come on here and just write everything I know, because I feel like I'm sharing the burden with a whole lot of people who are in a better emotional state to handle it.  And it really helps.  

Everyone has been so generous with our GoFundMe.  Every donation, no matter the amount, directly translates into Julia's care and surviving these next 3 months, whether it's a car payment or a tank of gas... every name I see on that list has given us a gift that is allowing us to be there by Julia's side 24/7.  The food support has also been amazing.  I never knew why "food trains" were even a thing for people dealing with trauma, seriously.  But now I know why they exist.  Reed hardly leaves the hospital room, and I'm usually getting home from Philly at midnight, and my choices are Wawa or McDonalds for the 10th day in a row.  We've had people drop off home cooked food to my office, which I bring down to Reed, and I see more have signed up.  And my neighbors... you guys... they are amazing.  They put a cooler on my porch and they just drop off entire meals for me.  I can't even believe it.  Reed and I have eaten every plate of food we've been given!

And so many others are supporting us with their time... my sister developed a website for Julia and she copies my daily updates so people without Facebook can see them; Alicia handles the GoFundMe and published a freakin' book; and my sister-in-law is watching my son 24/7.  She actually said we can do "trail sleepovers" as my house once I'm ready to take him back!  Even those of you whose "only" help is sharing my posts... I've been contact by friends-of-friends-of-friends who have either been there, or can vouch for a doctor, or who know of a resource at CHOP, or even just have cute ideas of how to decorate her halo.  I'd never be in touch with these people if you all didn't keep liking and sharing my posts.  Julia's story is reaching more and more people, and complete strangers are reaching out to help us.  

So I can't say thank you enough for just constantly being involved in this.  This really sucks, and it helps so much to know we're not doing it alone.