May 12, 2019

Not quite sure how to write the update tonight. I feel like I should have been happier today, considering Julia is still here when she wasn't supposed to be. But... today was just not great.

Charlene said Gabriel was fussing all night and has a snotty nose, so of course I couldn't get him. Julia starts chemo again tomorrow, so there's no way we can risk germs. So other than a few seconds on FaceTime, I didn't even see him today.

I did spend most of the day with Julia... but I'm just not feeling very optimistic. Reed looks at everything she can do now and sees progress and success. I look at it all and see everything she's lost and how much she suffers.

Her nurse the last few days has been wonderful. She arranged a private session in the playroom with Child Life. It took a few people to get Julia all disconnected and into her stroller; we wheeled her down to the playroom and the Child Life specialist had Peppa'd it out. Julia smiled real big when she saw the Peppa sign on the door. I wanted to just be happy for her... but omg... it was awful. It took 3 people to maneuver her into the chair, all her equipment was beeping, everyone was tangled in cords, she was crying, her trach kept disconnecting so she'd start panicking and gasping for air. All the professionals were so calm, but I was freaking out. I wanted to just run out of the room. It was awful. All this so she could attempt to color.

It hurt her to hold herself up. It hurt her to have her head flop forward. She couldn't lift her left arm. She as getting frustrated with her right arm. She kept wrinkled the paper and dropping the markers. She cried at every toy we put in front of her.

Honestly I feel like a fake for the picture collage I put together. I sorted through dozens of pictures to find a handful where she isn't crying, because I don't like to write depressing posts. But I guess here we are. She did smile once... when asked to. And Reed thinks she enjoyed coloring. She did shake her head 'no' when we asked if she was all done or wanted to go back to her bed.

She's doing a really good job supporting her head. We think she got tired or sore shortly into the session - she kept drooping to one side. We tried several things to adjust her in relation to the coloring pad - I think in the future we'll try an easel. But Reed put his head down and she rested hers against his and seemed more content. She readjusted her position on him / in her chair a few times completely on her own. She can sit up nice and straight for a few seconds but then slowly hunches over.

She had barfed and drooled all over herself so she needed a bath, which I did. And then we had to change her strings, which I did. I've mentioned it in comments a few times, but I don't know if I've said it in a post. I injured my back almost 3 years ago, while I was pregnant with Julia. It got worse and worse as the pregnancy progressed. I eventually walked with a cane (when I walked at all) and started sleeping sitting up in a recliner. I stopped using the cane about a year ago, but I still sleep in a chair. I haven't been able to lay in a bed in almost 3 years. I've made progress in many areas, but one thing I still can't do is lean over. Leaning forward unsupported is one of the worst things I've ever felt, and I've literally had an organ rupture. Leaning over is so awful and hurts for so long after... that I simply never do it. I've never once bathed either of my kids. Literally never. I would sit in the bathroom while Reed did it, cheering them on from the toilet seat, laughing with them pretending this was totally normal... but there was no chance for me to get in that position.

When Julia was 2 months old, I still had a brand-new car that I LOVED. It was my perfect car - sleek, black, fast. Once Reed went back to work, I had to take Julia to her first doctors appointment. I had to bend over to get her carseat into the back of the 2-door Honda all by myself. It hurt SO BAD, that as soon as I left, I dropped her off with my dad and drove to the dealership. I traded my car in for something larger with 4 doors that was higher off the ground. He asked what color I was looking for and I said I didn't even care. I was so angry I was trading in my car that I didn't even look. But I knew there was no way I could ever do that again, and I was going to need to drive with her the next day, so the car had to go. He ended up picking silver.

I remember one day I really deluded myself into thinking I could take Julia swimming (for the first time). She was maybe 8 months old. I brought her to my gym and it took an hour for me to get us both in bathing suits with her little arm swimmies. I went out to the pool - they had this great infant area that was like, 4 inches deep. All I wanted to do was sit in there with her. I remember sitting in the chair, surrounded by, I don't know, a hundred+ people... and feeling super alone. I was ready to swim. Julia was ready to swim. And there was literally NO WAY for me to lower myself into that 4 inch deep water. I had an injured back and was pregnant with Gabriel. If something happened, I wouldn't have been able to move to her in time. I would likely have gotten stuck myself. Part of me wanted one of the women to just read my mind and offer to help me. I wanted some capable person to take my daughter swimming because I couldn't do it. So, we just sat there and watched all the other kids swim for a while, and then we left.

(Side-side story: this is what the first 9 months of Julia's life looked like - me not being able to do things a normal mother could. And then Charlene (my sister-in-law) showed up.)

My point of sharing all that was... Julia's care, which I now have to do, requires being bent over her (fully-raised) bed for a long time. Several times a day. Every day. For... how long? Forever? Who knows. And because she's mobile and squirmy now, one hand has to contain her, and the other has to do the work. I only have two hands, so there is no third one available to support my back. I barely made it through bathing her. I had to sit down several times during the string change, and even then I couldn't finish.

After that I sat on the couch for about 45 minutes trying to breathe through the jackhammer in my spine. Once it's triggered (or whatever happens to it), only time makes it go away. So I waited until I could walk again, made sure she was sleeping, and then I just left. I got McDonald's for my fancy Mother's Day dinner (anything that didn't require walking was fine with me), and have been sitting here rotating ice packs for the last several hours.

I do know that when my back hurts this bad, everything is worse. So I'm sure I'll wake up tomorrow and not be so depressed about how this day went. Julia IS ABLE TO color. And I know that's a miracle in itself. I just need to get out of the funk I'm in so I can see it.

I'll add a video from her coloring session to the comments.

YouTube: https://youtu.be/Vp-OaCQW3_4

. . . ******************************** ********** 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 Children's Book: https://amzn.to/2CTTN2S Jewelry: https://etsy.me/2E1mR8i

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