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January 2, 2019

Short medical update today. All vitals are stable, no more vomiting, no more snot-gagging, breathing is great. She had a CT scan (halo stayed on), and they will be taking another tomorrow to make a final decision. They want to compare images one day apart for some reason. ...Reed isn't always the best at getting details. So she will go down for a second CT scan tomorrow, and they will make the final call about halo/interior stunt.


She did do PT today, but Reed was at lunch so didn't hear much other than she was really tired. She has slept the majority of the day. She wakes up and starts frantically waving her right hand in Reed's direction - that's the only way she can say she's up and wants daddy! So he goes to her side and holds her hand as long as she wants, and they usually end up watching cartoons. She's regularly "asking" for them now (looking all grumpy until she's asked if she wants cartoons). And then she's super content. Among other things, we can't wait until she can get out of the bed and start doing things toddlers like to do! She had just started getting into coloring right before this happened, and what a change even that will be to laying in bed staring at the ceiling.


Hopefully more steps forward tomorrow. But she really is showing great improvement from the infection, and mentally from the stroke.


That's all the medical news I have today. Now I'm just going to ramble for a minute:


~~~~~


A lot of my friends and family ask how I'm getting by. My dad just died, my daughter has to overcome incredible odds to see her third birthday, my baby boy is being watched full time by another family, and I come home to an empty house. It sucks, I'm not going to lie. Like, this is really awful. And the reason I'm coping "so well" at the moment is the unbelievable support I'm getting from everyone.


Honestly, I never intended to write an update every day. SO MUCH just happened right at the beginning, and this was the fastest way to keep everyone in the loop. Then I started getting messages when I didn't update... and I realized people care. And now I have complete strangers waiting daily for Julia's updates. That is CRAZY to me. Honestly, I keep thinking I'm going to make a post and people are going to realize they don't actually care about this baby they don't know, and I will stop getting the interactions, comments, and messages. That hasn't happened yet, and I just want to let you know that I read everything, and I look at all your shares, and I read those too. I REALLY APPRECIATE the few minutes you take to read these and hit the heart button or whatever. I didn't realize how much I would be looking forward to this every day, but I do. So thank you! It is making a difference.


I also wanted to show how thoughtful everyone is being... Of course I would much rather NOT be living this literal nightmare, but seeing all the good in people is just nuts. I can't even list all the nice things people have done for my family recently. There's been money, and food, and gift cards, and Christmas presents, and "thinking about you" texts, and rides, and housework, and books written, and kid-drawn art, and gift-wrapping events... I've tried to keep notes just to properly thank everyone. Just in the last two days 3 amazing things showed up, and I wanted to show you all the unbelievable support I'm getting. All these little (and not-so-little) gestures are what has allowed me to function like a normal adult these past 6 weeks. So I want to give three quick shout-outs (pictures below):


First, my coworker left a gift bag sitting on my desk, and in it were finger puppets for the "family roll call" Julia does. I set aside Daddy, Mommy, and Baby, and I can't wait to show them to her. She is going to LOVE them.


Then a complete stranger was so touched by the picture I shared several weeks ago of Julia's hand holding Reed's finger that she DREW IT! LOOK AT HOW AWESOME IT IS!! She matted it and sent it to me, and now it's framed and on my wall. This is seriously something I'm going to cherish forever. I think about her spending so much time leaning over her drawing, getting every part of Julia's hand perfect... a baby girl she doesn't even know. When it showed up, I just sat there staring at it comparing it to the original photo on my phone. It's unbelievable.


And I'm not going to tag (most of) my guildies, because I don't think they'd like that, but I have to say something about the card I got in the mail today. For those who don't know, I played an online game called World of Warcraft for a looooong time. Reed and I ran a guild for years - (that's pretty much a group of people from around the world who get together at the same time to play the same game). We've played with some of these people for 10+ years - never having met them in real life. I stopped playing when I had my kids. Reed was still playing up until he had to leave the group early when I told him Julia was in the ER. Today I got this card in the mail. It took me several tries just to read it because I was so overwhelmed! This is from a GUY, first of all, who spends the majority of his free time in a video game slaying internet dragons (I love you, Cat)... He got thoughts from many of our long-time online friends, printed them out, glued them in the card along with their gamer names, and then even wrote an amazingly awesome (Warcraft appropriate) message. This is the sort of thing *I* do, and I know how much thought and effort goes into it! This is just another reminder that the gamer community is amazing, and the relationships you build there are 100% real.


So I had to share those. These are the kinds of things coming into my life right now. The people I know, and those I'm just meeting, are so amazing.


Thank you for all your continued nice gestures. This.... trial, is going to get harder, not easier. Julia's going to get sick. There are going to be complications. There will likely be side effects. And a good outcome isn't certain. So if you have it in you, know that your daily interactions with my posts are so very much appreciated. And these unbelievable gifts being given to my family are just unreal... It's impossible to fall down when so many people are holding you up.




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© 2020 - all photos in blog copyright Amy Largent. Please do not use them without permission. Thank you. 

Meet Julia Adams
I'm 3 years old and I have a rare and serious form of childhood bone cancer. I'm doing my best to beat it, but my family needs your help!