So there's this little lady who has my heart. She is small, has wild hair, and is quite strange. She is pretty fantastic.
I'm being a touch selective in photos shared because to her family, it's nothing to see a messy mouth and hands, but soft stomachs may not appreciate all her photos.
I want to share some of the incredible story of Roxana.
Roxana and her brother, Danilo, joined the Chapin's family about 5 years ago. This kinda makes her my niece! She has autism, and one of the most unique personalities I've seen!
Roxana has an additional diagnosis; Rhumination syndrome. Basically, this is means repeatedly and unintentionally vomiting without effort, generally soon after meals. This is not the same as bulimia nervosa as it is effortless, and generally unintentional.
In Roxana's case, she would vomit often without a sound, and begin to hyper fixate on the texture of what she brought up. For her, it was soothing to touch and play with it. She would pull it out, and spend lots of time self soothing with regurgitated food. Autism and Rumination syndrome are an intense combo.
As you may imagine, there are a lot of health issues that come along with repeated vomiting.
Roxana could experience damage to her esophagus, damage to her teeth, and damage to her fingernails as her hands were constantly in her mouth or wet with stomach contents. For Roxana however, the biggest problem became her weight loss.
This has been a years long struggle, and I am only summarizing it. But imagine you are a parent and your child can't stop vomiting. First, you would go to your pediatrician, right? They might say she will grow out of it, or give it time- all kids vomit. It's easy to misunderstand that this is not occasional or how others kids vomit while acutely ill. Let's say they take you seriously. Now you try some simple meds to calm the stomach. They don't help, but you have to give these things time.
To be clear, that's true. Treatments need time to see if they work.
The first line meds didn't work, but they took a few weeks to now work. Now it's time for some labs. No parasites, nothing obvious. More meds to try.
Now your doctor sends your daughter to a specialist. They also start at the beginning, with the basics. None of the typical issues or treatments work, and months are lost.
A few more weeks and this isn't working either. Your is rapidly moving from underweight to malnourished despite your best efforts. This is the state her parent's lived in for nearly 2 years. (I refer here to her parents of the last 5+ years who love her, and have fought hard for her life).
Now it's a new gastroenterologist. They too, start at the beginning with the basics with Roxana. Again, this is not wrong of them as they need to know her for themselves. But even more time is lost as some of the same treatments are tried to no avail.
This doctor is different though, she is not going to dismiss this, even though it's not typical. She holds Roxana, even though her hands are wet with vomit, and a million changes of cloths can't keep her shirt clean. She begins tracking Roxana's specialists and connecting the dots that are typically separated here in Guatemala. She hears Stevie and Carissa's concerns. Around this time also, a compassionate dietitian working in the states begins consulting with us to help find solutions as well.
Roxana has food restrictions, medications, therapy practices, and so much love. Still she vomits.
A few more appointments down the road and her weight keeps dropping. Referrals to neurologists, behavior specialists, more specialized neurologists, holistic medical specialist, and so many others keep the Chapin family running with appointments and exams, sometimes multiple the same week.
It was an exhausting time taking her to just one appointment. Remember, Roxana has autism changing routine is hard and sitting in a chair or playing with a typical toy is not an option. If I would accompany her, we would spend Hours and hours pacing halls. She would often need to lay flat as this is soothing to her at home and she grows agitated the longer she can not. At that time however, Roxana got so low on energy, that she couldn't pace like that, and would let me hold her-- but not while sitting! Her hands would be wet, and despite that mornings bath, she might get vomit in her hair or mine while she hugged my neck. They were great hugs!
When you treat illness, you naturally begin with the most probable, least invasive treatment, and work from there. So it took time to get to an endoscopy, where a camera is sent into Roxana's stomach through her mouth, and a very small child is put under anesthesia. This revealed a possible explanation- H. Pilori. It's an evil little sucker that could explain much of Roxana's vomiting and weigh loss.
We were so excited to heave a reason! This whole process was a rollercoaster of exciting possible solutions, and agonizing failures.
Treatment on this one was 6 weeks. It made little long term impact and she kept losing weight.
Things were getting desperate. We feared for her life.
Roxana was now quite malnourished despite every intervention imaginable.
Some friends in the states helped financially, and Roxana was hospitalized to place a g-tube, and receive nutrition though an IV for a time. This too was a very hard decision as her surgeon stated plainly, her case was very challenging, and he and his colleges did not know if it were best to place a feeding tube directly to her intestines, or to her stomach. One would involve much more potential for complications, and include life long use of hard to find formula, and the other could prove innefective, calling for a repeat surgery later. The g-tube was chosen allowing her meals to pass directly to her stomach.
This really bought Roxana some time.
For the first time in ages, her parents could take a breath of air.
A friend here donated her daughter's old feeding pump when ours burnt out. Roxana was on some pretty special formulas however, and this proved incredibly challenging to find in Guatemala. Please imagine what it feels like they day you run out despite trying for weeks to find the formula. You pray you are making the best choice, and give the next most sensitive formula you can find, only to watch your child begin to vomit again. This has been grueling.
Our US dietitian friend found and sent dozens of cans, and many friends volunteered space inter bags to bring them down. It takes a village, yes?
Roxana did well as long as she could get this one specific formula.
Well, she did well until she didn't anymore.
Around Christmas time, Roxana again took a turn. Her parents noted at first just a mouthful, but it grew to full vomiting rapidly.
This felt crushing.
Despite everything, all the appointments, all the formula, all the work trying to save her, she was vomiting again.
And this time she lost ground very fast. She had lost all energy, and mostly just wanted to lay down.
Her gastroenterologist, who has been pulling for her for a few years now, made a dramatic call to cut all feedings and formula, except a few, small blenderized feedings specifically formulated for Roxana by her US dietitian. The plan was to increase this every 2-3 days until an appropriate volume was reached. Initially, Roxana would of corse loose even more weight. but this was a desperate time.
It took time, but eventually Roxana's blender bottles increased to have enough calories to meet her resting goal. Then her low end catch up goal. Then Roxana was getting all the calories she needed to meet her full catchup growth goal. As anticipated, she initially lost weight, but over the next months, she then gained a few ounces, next gained many ounces, and finally she gained a pound in a week!
Roxana is finally at her weight before vomiting started, a few years ago. She still has so so much ground to catch up, and she is still considered malnourished. But Roxana has started to smile again. She has started to spin in circles again, and get into trouble again!
She has really been though it. So have her parents. So have all those who love her.
We praise God for how far Roxana has come. She has twice come back from when we feared for her life. God has provided people in her life who are her family. Others who care for her and provide competent and compassionate care-- people who love her, and fight for her. Also a village of folks who chipped in here or there to help meet her needs with a physical resource, financial, or prayer.
She is a fantastic, spunky, quirky little girl, and I am so grateful God has placed her, and her family in my life.
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