a day.

TMI ALERT! THERE BE TALK OF BLOODY VOMIT AHEAD!


The Backstory

The day before school started back from Christmas break Zoey started telling me her eyes hurt. I knew it was legit, but when you're working with a 7 year old it's hard to know exactly what that means. The first day she really complained about it I called a doctor, because there was something very unnerving about the way she was describing it and acting, but, the doctor didn't have any openings that day and by the afternoon she was acting fine, so I let it pass. Later she'd tell me, "It still hurts, I'm just learning to get used to it now."

The next morning she was acting funny when she woke up, said her stomach hurt, but she got ready for school. I thought maybe she was just hungry so I convinced her to take a bite of breakfast but that sent her running to throw up. Aside from the one tiny bite of breakfast her stomach was totally empty,  but she dry heaved so hard she was vomiting up mucusy blood (not straight blood or I would have taken off for the ER). Of course this was terrifying for her, Mia, who happened to see the whole thing and me.

As soon as the Dr. office opened I called and the (dumb) office was like, oh yeah we don't have space for you today . . . uhhh okay cool, thanks guys, very useful. But while I looked for a different doctor to see I got a call from the nurse who was like THEY TOLD YOU WHAT? (Which I'm learning is usually how it works. Just don't ever talk to the office, go straight to the nurse. #lifelessons)

Everything checked out fine at the doctor so he thought maybe she was having a lot of anxiety about going back to school.

On and off throughout the week she'd throw up in the mornings and then be completely fine a few hours later. I thought maaaaybe it was possible she was anxious? But she was also excited and WANTED to go to school on the days she didn't throw up. She also threw up on Saturday and Sunday when she didn't have to go to school.

I KNEW something was actually wrong. I started worrying about diabetes with headaches, eye pain, nausea, but she didn't show some of the more typical symptoms. (Didn't stop me from obsessing over it though!)

One night our Relief Society President brought over a kit so I could test her blood (which...poor Zoey letting me learn to use that on her) but it did test fine, so I started to obsess a little less about that.

We went back to the doctor and he said everything was checking out fine neurologically (and I realllllly wanted that to be true) so he suspected she was dealing with migraines. It still just felt off to me, but I thought it was possible. I also thought maybe it was cyclical vomiting syndrome (which can be related to migraines), because the symptoms all seemed to fit.

We started doing things like giving her a high protein snack before bed and making sure she got to bed on time and the vomiting seemed to ease up.

BUT

On Friday she was like...I've been copying off my friends' work because I can't see the board (she'd passed an eye exam just a couple months before) but I learned if I cover my left eye I can still see things!

Then on Saturday I was reading with her and realized she was holding the book RIGHT up against her eyes and really couldn't read all of a sudden. Then I realized she couldn't even see big things a few feet away. Somehow this didn't totally freak me out? I was just like OH GOOD ONE MORE THING TO MAKE ME FEEL LIKE CRAZY MOM AT THE DOCTOR (selfish much? I know...). The BIG SCARY in my mind was . . . all of this sounds an awful lot like a brain tumor. Thoughts I'd been fighting for weeks.

I got her an eye appointment for Monday. I'd been having regular panic attacks over this for 2 weeks straight so I just continued to feel really on edge and like something was really up, but tried to suppress it and get to a doctor.


Monday
Monday morning we went to the eye doctor at Sam's Club (who is now one of my top favorite people in the world) and I was one step away from psycho panic. He started talking to Zoey and doing some tests and figured she was faking it so she could get glasses. He showed her all the biggest things and would ask her what she saw and when she said nothing he was like. . .riiiiight. When she started to consistently not be able to see the three foot E five feet away with her left eye, he got serious. Then as he continued the test he started to get more and more bothered and decided to dilate her eyes.

Once her eyes were dilated the doctor quickly was like, I can see something is putting pressure on her optic nerve. With the history of morning vomit he was like, you need a brain scan ASAP. He couldn't order one so he got us in that day at a nearby ophthalmologist.

I called Adam to come meet us and he was able to grab a coworker to come give Zoey a blessing. Zoey was in full panic mode (and she was not alone...we were all a huge ugly crying mess) but after the blessing she really calmed down and was just like, I'm fine! I'm not actually blind guys! I continued to be an absolute disaster. All the worst of worst case scenarios were running wild in my mind.

The ophthalmologists did some tests and sent us right over for an MRI and lumbar puncture at the Children's Hospital near us. We went to the hospital, got a room and we sat. AND we sat. AND WE SAT. For about 7 hours. In a very very freezing room on very hard awful chairs. While mentally going through total what if hell.

We were just grateful they were willing to squeeze us in for the MRI since we'd been told it was unlikely they could get us in that day. Obviously they felt like it was an emergency situation enough to get us in that day though (which did nothing for my nerves).

Finally they did the MRI and Zoey was just amazing. She was perfectly still, without any sedation. Even though she told us later she was freaking out about being packed into the tunnel and the noises being really loud. We couldn't help but be proud of how awesome she is.

After the MRI....More waiting while they reviewed the results.

Finally a doctor came in and was very nonchalantly like, "Good news bad news. No masses in the brain lahdidadidahblahblahblah"

And we were like shooting off cannons in celebration and who even cared about the rest of what she said because THERE ARE NO BRAIN MASSES! Whatever else was going on, was like Christmas morning compared to the what ifs.

They did diagnose her with Optic Neuritis, with her left eye much, much worse than her right. It's really pretty treatable, but the big question is, WHY? She's super young to have this happen and doesn't really fit many of the other categories for it. Over the next two weeks we'll be waiting on test results to consider many awful things, mainly MS and something called NMO but I can't remember what the real name for it is (and I am staying far away from the google machine THANKYOUVERYMUCH). Or it could be another autoimmune disease, or, if we're just really really lucky, it's a fluke, they find no reason and it was probably triggered by a virus. So, I like to joke that we're just praying we get no answers. But, like, I'm not joking...we really are.

Also, in her doctor's defense, even the eye doctors all thought things looked very normal from the outside. The extent of the damage kind of hides in her in ways it doesn't normally.

Post diagnosis, there were more hours

Then a lumbar puncture. That garbage is awful. Poor, poor Zoey. If I had to pick one thing she's hated the most about this whole thing, it would be that whole experience. They have a group called Child Life at the hospital that works with the kids through the crappy stuff they have to go through, and the child life specialist asked her if she'd like to listen to music during the procedure. Her choice: Sam Cooke. Because Zoey is actually secretly 65 years old. I've always said she looks like she should have been born in the 50s and now I need no further evidence that this is true.

Sam sang us some Change is Gonna Come (which felt very appropriate since this was all on MLK day.) While Zoey became probably scarred for life. Maybe I'm scarred for life? Probably both, with a little extra her way.

The doctor and nurses all appreciated her good taste. One told us she kind of felt like she was at a swanky dinner party, not a spinal tap. I wish Zoey felt that way. . . (Also I wish I could take some credit for Zoey being ridiculous cool, but she accidentally discovered her friend, Sam, on the Alexa)

This all wrapped up around midnight, when they stuck Zoey and me in an ambulance (finally I got to sit on a seat that wasn't hard plastic!) And shipped us off for a 3.5 hour drive to Little Rock for treatments.


And where we are now

We're still unanswered, it will probably be a week or two before test results come back. On Tuesday morning Zoey saw a pediatric ophthalmologist and we found out she was pretty much blind blind AND color blind. Even if she insisted she wasn't (on both count. "Guys, I'm NOT blind, I CAN SEE") They're now giving her a high dose of steroids every 6 hours and I'm VERY pleased to report that every day she's gotten some of her vision back. Today she could pass more of the color tests too. Before the treatments she could see about 3-5 inches from her face only. By Wednesday she could see the clock across the room and a TV with her right eye. Today her right eye could see some of the 20 line with her right and she could see the doctor's fingers five feet away with her left. As long as they're seeing improvement, we're going in the right direction. And that's just so so great. The steroids definitely have their side effects. The most fun one being she's pretty ragey, but I can't much blame her. I'm willing to let her pretty much get mad at anyone she wants.

She's also just really homesick and lonely to be around kids her age. She interacts with them and they have an awesome kid's room and they do so much to help the kids feel okay here, but it's still so isolating. We also realized she's had times where she's been away from us, but being away from Mia and Sam has been the hardest thing for her. Which...is actually great news, because sometimes as parents it's hard not to feel like your kids (maybe just my kids?) hate each other.

And we're so grateful.

Can I just shout it from the rooftops how absolutely, unbelievably grateful we are right now? We are SO SO SO SO SO SO SO grateful that right now we're not worrying about all the things that could have been. We're in the neurology unit at the children's hospital and to walk around and see so many little ones who are in worst case situations is just devastating and my heart is so full for the parents and for all those who didn't get the good news we did. I can't help but feel a little guilty, but also, just so grateful for our own miracle.

We're grateful to feel more aware of how lucky we are to be parents and have these great kids. We always said it and thought we knew it, but really, just nothing else feels like it matters right now.

We're sooooo grateful to family and friends who prayed for and with us and walked a really hard, awful day with us so we weren't alone. We had so much support and it made all the difference. My parent's drove out the next morning to help us with the other kids so Adam could come down to Little Rock and be with Zoey too (which has been really amazing, since she's made it pretty clear she's a little sick of my face being in her business. Except when she wants to snuggle, then I'm acceptable.) Our FrakesFriends went from watching our kids while I took Zoey to the eye doctor to crisis parenting them and keeping them overnight.

Our ward has been incredible. We've had so many offers to help and everyone has been more than willing to jump through hoops to do anything they can for us. We've even had several people offer to DRIVE TO LITTLE ROCK to bring stuff, which is niceness at a level I can't begin to understand. Our Bishop and his wife got us a bag of snacks to take on the road and it had seriously kept me alive for all the times I forget to eat during cafeteria hours. He also reminded us to pack a bag before they shipped us off, which sounds pretty obvious... but honestly neither Adam nor I had even had one thought about actually having to do things like wear clothes or brush our teeth, etc. It's amazing how helpful a suggestion can be when you're in crisis mode. Our Relief Society president has been great, and been along for the ride the whole time (From diabetes crisis Becki, to Worst Case Scenario Becki, to telling me she had to live at this hospital for 10 weeks so when I think I feel like I'm in a prison and need to escape I just remember I do not have to be here for 10 weeks and then it feels a little better...)

People have sent Zoey gifts and videos and helped her feel loved and remembered. It's really just amazing to see how charitable and good human beings are. I would never want to relive Monday, but I don't ever want to forget how amazing people are. And basically we need to write ALL THE THANK YOU CARDS. (Which, I apologize in advance I am SO BAD AT because I write them and then fail to send them...there are literally 20 in my kitchen cupboard waiting for addresses. (I'm sure I just bruised my mom's soul a little when I admitted that, sorry Weeze). But I will get to it!


And maybe someday I'll add pictures more pictures to this, but for now, you get The Text Wall of Dreams and this picture of Zoey completely sound asleep, sleeping, as she always does, with her eyes open.

She's a little goofy, but we sure love her and are happy to keep loving her goofy self forever more.