happy new year

Hello, again. It’s been a while! I hope everyone had wonderful holidays and are enjoying the new year.

I’ve tried to write, many times, over the past few months, after everything over this last year, after this last decade+, and it’s been a lot to sort through and figure out how to whittle down into something as simple as words.

When people have reached out to ask how we’re doing, I haven’t known what to say because “fine” isn't the right answer, but "we're doing awful" isn't the right answer either. More that we've been in that place you go to after trying so hard to keep everything from falling part, but then it does anyway. One where you take a pause, catch your breath, and figure out how to rebuild from here. It's not just her GI issues, and the lack of proper care she's received, it's what it's meant in relation to everything she's been fighting for since she was seven, and the loss of the future she was always chasing and always dreaming of. The future we were all hoping for. We're also trying to glean what we can from how things went, at the hospital, in an effort to try to make sure something like that can't repeat itself again. It's hit some of the deepest emotions, the ones connected to her having a life-threatening disease, and it's tapped into that ocean of grief.

I have a lot more to say about all of this, but the words aren't there yet. And, now that this year is officially over, I feel more of a push to come out of my shell, a little bit, and at least post something and get back into the habit of writing.

emma update

It’s been a few months since Emma’s last hospitalization, and it's been a rollercoaster of ups and downs, as her GI system seems to work better than it does other times, while never working even sort of close to normal. She’s done everything she can do to avoid going back because she never wants to go again.

The more solid the food is that she eats, the worse things get (as in, her system starts to move much slower, she struggles to eat, she backs up, and laxatives barely do anything), while the more liquid the meals are, the better it is (as in, we can keep food going in, her system seems to be able to keep things moving more easily and laxatives are more effective). And, sometimes, we can’t figure out what the rhyme or reason is with it, beyond wondering if she simply can’t tolerate certain textures and types of foods, like meats and fats, even in pureed form.

As of a few days ago, we discovered that there is a significant difference between pureed foods and liquids, when it comes to her body being able to function better. So, she's been doing amazing with the liquid by mouth + formula in J tube, and we’ll probably be sticking to liquids for a while and hoping it'll make things more consistently stable.

moving on…and moving

We left the pediatric hospital back in August and moved on to the new hospital system. It’s the first time for Emma to step into the adult world. Our hope is that we’ll find a wider variety of medical professionals to choose from and hopefully find someone with some answers.

Initially, we tried to establish care at a hospital near our home, about 15-20 minutes away, but then we, unexpectedly, decided to move. If anyone remembers my sister, Ani, who came with us to transplant, years ago, she moved down here from the Washington area, back in July, to live close and help out. They ended up staying with us for a bit while her family looked for a new home. Only, they were so fun to live with that none of us could imagine her family moving back out. And, so, instead, we all decided to move into a bigger house together, about an hour away. One where all 11 of us could comfortably fit. It has a mother-in-law suite, and several bedrooms, and it works pretty perfectly for us. So, we moved. (We come from a family of nine girls, so living with a lot of people is what is normal to us, and, thankfully, our husbands enjoy it, too!)

Here's a little snapshot of handing out presents at Christmas:

With how consuming this past year has been, when it comes to Emma’s health, alongside the usual busyness that a lot of children bring, having additional adults around to help carry the weight of that, has been tremendously helpful. Plus, their family is a joy to be around. They make everyone’s life better simply by their existence.

But moving has meant that we have needed to re-establish care, again, right after barely establishing care somewhere else! Luckily, most of the doctors we had set up, we hadn’t had the time to actually meet yet, so it was a fairly easy switch over to the new location. It just meant it would take even longer to see some of the doctors. Like, even now, we still haven’t seen them all. I've made a list, and she has 14 doctors to see, so it's quite a lot.

We still have palliative care through the children’s hospital, and we still have her PCP and new GI doctor at the previous new hospital location (we’re trying to switch GI to current location), but, otherwise, everything else is in Dallas now, at one of their biggest hospitals. So, hopefully that means we'll meet people that see a variety of things and might have some answers. Thank you for caring about our family, and Emma, and thinking and praying for us all of these years. It means a lot. We send our love to all of you.

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