Halloween photo: Emma is with her sister, Ella (bald man), and her cousins, Bella and Amelie, ready to go trick-or-treating. That's one benefit to her size, she will be able to trick or treat forever! This was the first year that the rest of the kids didn't dress up. Instead they handed out candy. (We're a little late, but we'd love to see your Halloween photos!)
UPDATE TIME
If you're short on time, Emma is doing great and continuing to improve. :)
GUT UPDATE
We’ve continued with the same approach to heal her gut. She’s off almost all of the gut medications they had her on. The last one is Linzess, and in the last month or two, she's gone from 290 mcg to 145 mcg and now is on 72 mcg. Goal is to be able to get her completely off of it. Same with her feeding tube.
She still can’t taste very well, can’t smell, and can’t feel hungry. So, she eats on a schedule. Putting food in her mouth, chewing it, swallowing it is very satisfying to her. And when she feels full, it's more like a normal full feeling now. We kind of wonder if she might have lost the sensation of hunger because of how long she felt sooo hungry (back when we couldn’t get her help) and wondered if her mind ended up protecting her from it by blocking that sensation? Or not. Maybe it’s just part of whatever went wrong.
EYES
Emma’s eye disease has been stable, but they’re no longer able to fully correct her eyes. So, they’re switching her to scleral lenses, which should protect her eyes even more, too. This is a lens that they fit to her eye. She’ll go in for the first round of fitting soon.
PAUSING DOCTORS
Months ago, after learning about the medical abuse Emma experienced, palliative care recommended we give Emma a break from seeing doctors. Give her time to recover somewhat and see if we can reduce the stress. So, we’ve only been going to necessary appointments like ENT, hem/onc, cornea specialist, eye doctor, palliative care, and primary care. She’s maybe only had 10 appointments this year in total. I think that’s less than she’s ever had.
It’s been extremely challenging to recover from the abuse she experienced over those 10 months (took so long to understand what was happening because of trust), specifically when it comes to moving forward and thinking about how her care will go in the future. Time has helped some, and we’re hoping it will continue to do so, but it feels like a huge mountain to climb. The main issue is with knowing, now, how easily the system can fail when a crazy person is at the top & that when/if it does, it can fail to the point of threat on her life. We're hoping time can help heal a lot of this.
But having this break has helped us all (though, seemingly very slowly) switch from protective/stress brain to feeling like life is returning more to normal, and as it does that, other things become easier to do again.
BUCKET LIST
Initially the hope was to take off and go on adventures, marking things off a bucket list we were about to make. But, when my big sister’s health ordeal started (found unresponsive, multiple mini-strokes post cancer treatment, and a severe infection in her hip), and she began her very difficult journey to recovery, it pulled our focus for a while. I watched my baby sister’s kids for her, as she went to the hospital weekly to help, staying over night, trying to give our sister’s husband a break, at least a little bit. But then she (big sis) caught a fungal infection, which is a risk to Emma. And since my youngest sister and I (and our families) live together, we all had to stay clear, to try to keep it from spreading to Emma.
So, months into this year, we found ourselves back to the bucket list. And, as we were talking about where we could go and what we could do, and as it began to feel more real, Emma discovered she felt panicked about the idea. It was on an RV trip that her gut issues started, so she didn’t want to travel.
It took a little while to figure out what to do instead, and how to take advantage of this time (which we hope will last for decades), but we ended up realizing we just need to do everything local for now. Go to events, concerts, movies, amusement parks, dining. So, that’s what we started doing. We went to Medieval Times, which they loved. Twenty One Pilots in concert, which was amazing. Movies, which are always fun. Six Flags Over Texas, which was terrifying. And what might be Emma’s favorite, going to restaurants to eat. We have more plans for the future, too. Everyone has loved it. To all of you who have helped to make this possible...thank you soooo much.
THE REST OF US
In many ways, life pauses when big health issues happen. Access to normal things is gone. Whether due to circumstance or lack of bandwidth and time. And it can feel odd, when life calms down, to realize that's all still there, waiting, and undone. So, this year, we’ve been trying to refocus and catch up on those things. To really settle in more in our new city and grow our social network and go do all the normal things.
While we have Emma to care for, we have childhoods to provide for all of our kids. This topic here, about what it's like to navigate a sick child in combination with raising healthy ones, is a HUGE topic and something I've wanted to talk about more for years. But it's too much to share in a simple blog post. So, I'll just say that our other kids are our little heroes. All the things they've gone through. Such unique lives that we wish they didn't have to have lived this way.
This year we've enjoyed them experiencing their first dance together, learning to drive, getting first jobs, T2 graduating a year early. (He just turned 18?? How did this happen?? ) It's wonderful to see, but it's also heartbreaking, as parenting seems to be. And then maybe a little more so because of how unexpected and restrictive Emma's health has been over the years and the dreams that too often had to be sat aside, or altered, and then feeling like we ran out of childhood when we still had so much more we wanted to do. This will hopefully fuel deliberate, special experiences as a family for the rest of our lives.
ETSY STORE
Last year we started a couple Etsy stores. We threw them together in a flurry because we didn't expect Emma to improve like she did. Now that we've had more time, we've dropped down to one store (here) and added more stuff to it, only this time, everything is drawn by us (vs using commercial use art). Our goal is to hopefully (eventually) grow it into something that can help fund our adventures, to make up for time lost, as well as to maybe offer a little job for Emma to do & help her feel more independent. So, if you ever need a way to gift money or candy to someone, be sure to remember us! :)
And that's our update! I'd say I'll try to update more, but every time I say that, I seem to do worse. Life is currently wonderfully busy. One day it won't be, so we're trying to soak it all in and recognize these days as the "good old days." Thank you for being here over the years and supporting our family. It has helped more than I can say!
Love,
All of us
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