One Year Later- an Update on Faith

It’s been a while since I’ve published a post here; 2019 was quite a year for our family, and many have asked about Faith and her health so I thought I’d update you a bit on how she’s doing. For more background information, read here and here.

These past few months we’ve been reflecting back on what our life looked like one year ago and I’d describe it as fearful and uncertain. We weren’t sure what our future would look like: if Faith would be dealing with a chronic illness her entire life, if mobility would always be an issue or concern for her, if our family plans and her life would be dictated by her illness. Only God has the answer to those questions but I’m so happy to say that it has not been the case for us so far!

Diagnosis

Faith’s original diagnosis (after several hospital stays and misdiagnosis) was Juvenile Rheumatoid Arthritis (JRA) which is an auto immune condition causing inflammation in the joint, usually affecting several joints. After a repeat MRI, the Rheumatologist diagnosed her with Chronic Recurrent Multifocal Osteomyelitis (CRMO) which is a bone inflammation condition. It can spread to other areas but so far it has only affected a few bones in her foot. It is also an auto immune condition, has similar symptoms as RA and is treated similarly. We continued the path of treating her for inflammation and she’s been in remission since last spring! Praise God!

Treatment

For treatment, she had an initial round of steroids, when she was completely immobile, which drastically took the swelling and pain down. Since then, she’s been on a daily, very low dose of Naproxen (Aleve) which we will will start to wean her off of in the next couple of months. We have also been treating her naturally with diet, alternative medicine (supplements, chiropractic, essential oils, light therapy), and prioritizing overall health for our entire family.

We have found that a major trigger for her is gluten; if she has just a small amount she spikes a fever and complains of not being able to walk. For that reason, we have become very strict eliminating that from her diet. Our family has been gluten free since before this when we found out that Charles had a sensitivity as a baby, so we all eat the same which makes things easier for everyone. We limit other inflammatory foods as well, especially our sugar, which we have noticed runs our bodies down and everyone’s just more prone to be sick in general.

We’ve also ensured our life at home is as organic and toxin free as possible. We’ve always focused on eating as clean as possible, growing our own food and prioritizing organic, grass fed, pasture raised food, but over the past year we’ve made this a non negotiable and become quite strict on it, at least when we’re at home. We’ve become even more careful to avoid toxins as well which has helped our entire family. I’ve personally always had an issue with allergies and sensitivities to chemicals, so it only makes sense that her little body, already having an immunity issue, would also react negatively when exposed to fragrances and toxins on a regular basis, so eliminating this has been a priority in our home.

Family Life

As far as her feelings toward it all, she has always been such a trooper and still is. She takes her medication and supplements without complaint (mostly) and understands the need to have a diet that may look a little different than others around her. I think it definitely helps that her whole family is in it with her. We all go through similar wellness treatments for our own health so I’m sure that helps her not feel singled out. Our chiropractor even gives the other kids “tickle adjustments” if they don’t necessarily need an adjustment so no one feels left out. She’s amazing. 

Faith will occasionally say “remember when I couldn’t walk?” but other than that she doesn’t really talk about it much. I think she knows that the different measures we have to take is helping so that may be a small reminder to her but other than that, its not really a topic of conversation for her. I’m so glad she’s been able to move on from it! She still has had a great interest in medical care since her hospital stays and all of the doctor visits. It’s pretty hilarious, there’s not a day that goes by that one of us or her dolls are not getting a “blood test”! She is definitely our brave one at the doctor, that’s for sure.

Thank you everyone who has prayed for her and for checking in with us to see how she is doing. It helps so much having such a loving community. It’s so good to feel “stable” with this condition, we are praying that as we wean off medication that our natural efforts will sustain her remission and we’ll be able to maintain it long term.

I don’t know what our future holds, but I thank God every day that she is well today and can be a normal little girl, running around, dancing, playing in the mud, swimming, climbing trees with zero pain. We really don’t take it for granted, even just having the ability to walk. We lived in a state of fear for quite some time and have learned a lot about fear and uncertainty. It’s a part of life, sure, but we don’t have to go at it alone. God is always with us, always for us, and always has our best interest in mind. I don’t know what I’d do if I didn’t have that truth engrained in me and have the community around us to pray us through anything we are going through.