Family Life

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.

Family Life

Update on Faith

Thank you all for your kind words and encouraging us through everything we’ve been experiencing with Faith and her rheumatoid arthritis diagnosis. It’s been about a month and if we have learned anything these past few months since all of this started, anything can change quickly, so we of course, are always on or toes. This past month has given us a lot to swallow, a lot of changes, and a lot of trusting God. More on that, but first, where we are today with Faith, medically for those who have been asking…

(For background on this, visit my first post here)

Since we received the diagnosis of rheumatoid arthritis, we’ve had a complete diet overhaul with the guidance of a functional medicine nutritionist, to identify triggers for her. They suspect some food sensitivities and deficiencies that we are testing for but have not received final results as of yet. She eats really well, but even healthy foods may be contributing to inflammation. It’s going to be a trial and error process, but if we can at least figure out the diet side of this and work on healing her gut from all of the antibiotics she was exposed to, that’s a start.

About a week before Christmas, Faith had another flare up, still only in her foot. We had not been on any medication at that time and started some homeopathic remedies and saw some relief, but ultimately had to put her on an anti inflammatory medicine. We noticed that it still was not improving after a few weeks and that the flare started looking very different than it had ever looked before. Instead of overall swelling and redness, she had a large, red, bulge on the instep of her foot, no where near a joint, and the rest of her foot looked normal.

We feared that this was not rheumatoid arthritis and something else so on New Years Eve (always on a holiday or weekend, always) we headed to the pediatrician to get their take on what we were seeing. They agreed that it didn’t look like arthritis and said this was over their heads, it looked like a massive infection to them (different spot than the previous infection). They advised us to go to VCU hospital but was then able to get us into the orthopedic that day. The orthopedic also agreed this didn’t look like arthritis but wasn’t sure that this was an infection either. It thankfully didn’t appear to be spreading rapidly like before, which was good news, but after an X ray didn’t give us much information, he ordered another MRI.

The MRI wasn’t able to be scheduled for another 2 weeks and her foot was worsening. We were told that we needed to have a very low threshold for taking her to the ER, so we tried red light therapy (stay with me here). We were terrified of another hospital visit if we didn’t get to this quickly and we were just waiting to have this MRI. We had read about red light therapy and thought we had nothing to lose so we did it and noticed DRAMATIC improvement just after one treatment. We continued it for a few days and her swelling went down an entire inch (I know, she had more than an inch of swelling on that little foot) and the redness shrunk a few centimeters. It didn’t completely heal it but it kept us from the hospital while waiting for further testing, so I call it a success.

She had the MRI…our 4 year old laid completely still during that loud, scary, test for 40 minutes. She is such a rockstar. And unfortunately the MRI was not as conclusive as we’d hoped, but I somewhat expected that. I’m thankful, however, that something serious wasn’t glaring at us, but it’s very frustrating still not knowing exactly what’s going on with her. One thing it did conclude is that she has fluid in multiple joints and her bone is being compromised. It’s either a rare infection, fungal or bacterial, that is hard to treat, or rheumatoid arthritis or another chronic inflammation disease.

Our next step is trying a steroid as a diagnostic tool, which we’ve been so hesitant to do, but our alternative is surgery to biopsy the fluid. Unfortunately, any natural or homeopathic remedy that we’ve been trying is not working quickly enough and we don’t want her to have long term bone damage. The doctors have been hesitant to try steroids in the past in case it’s an infection as that would suppress her immune system fighting it and make matters worse. Now that her foot is better than it has been since the initial flare up, if the steroids make things worse for her, we more than likely won’t have to rush to the ER as long as we are keeping a close eye on it. If her foot improves on the steroid, that will indicate a chronic inflammation disease like rheumatoid arthritis. If it doesn’t improve or worsens, we’re looking at an infection.

So that’s where we are today- trying a steroid and so far she seems to be somewhat improving, which points us back to RA, but only time will tell. She has been limping or not walking since before Christmas so we just want to do what we can to get her better AND figure out what’s causing it. I admit, it’s been a rough few months. We’ve been trying to create some sense of normalcy for our family but it’s so hard when we have this constantly over our heads. Not just the worry about what’s going on with her, but parenting a 4 year old who is in long term pain, but still needs to follow rules, have discipline, etc. And also parent her twin sister who is not in pain but feels the need to be treated the same, claiming she has random, convenient “foot pain” too. Just managing their limited understanding about all of this, and their frustration, has been tough a tough situation.

I think the only thing that encourages us is that we know this is not forever, we are completely in God’s hands. Whenever I’m in doubt or having anxiety, scripture is poured over me. I’m reminded….

Nothing is impossible for Him if we have faith (Matthew 17:20-21).

He is the vine, we are the branches (John 15:5). He carries our burden, not us.

He gives us strength when we put our hope in Him (Isaiah 40:31).

To cast our burdens on Him (1 Peter 5:7).

To not worry about anything (Matthew 6:34).

That He will give us rest when we need it (Matthew 11:28).

Thank you everyone for praying and encouraging us. We are confident that we’re on the right track in figuring this out and hopeful that we’ll receive clarity soon. I also really appreciate everyone who has reached out with ideas about possibilities or remedies you’ve heard of or have experienced personally with these types of symptoms. It makes us feel like we’re not alone in this process. Thank you so much!

 

Adventures in Parenting, Family Life

Insert Coffee Here

I have another grocery shopping story for you. This should really just be a series because my most ridiculous parenting moments are somehow always at a grocery store. Maybe I just spend way too much time gathering food for our family, either way, here‘s my previous post if you’d like to read it.

I used to be in a pretty good rhythm about going to the store with the kids, but lately, with all the chaos in our family and lack of routine, I’ve been either going at night after the kids go to bed or ordering online for delivery or pick up. This particular time I convinced myself we can do this. We can go to the grocery store. I completely psyched/caffeinated myself up, used my most patient, pleading voice with the girls preparing them for our trip, and had our list and coupons ready. We were golden.

Side note: when I was in my 20’s (before marriage and kids, and before grocery delivery and pick up) I despised shopping during the day because the parking lot would be full of minivans and mothers with uncontrollable kids every where. Little did I know that I’d one day be one of those mothers. I wish I understood then that getting there may have been all they could do that day. It may have taken every fiber of their being to just make it to the store. I should have extended grace to them, or considered it my ministry to give an extra hand to overwhelmed mothers at the grocery store.

Back to the story I thought I’d never be writing…

Everything was going so great! (famous last words). I had the baby in the cart which is always a delight because he’s just the king of our family and knows it through and through. The girls listened really well, stayed close by and only threw in a couple extra things into the cart that we didn’t have on our list when I wasn’t looking, and it was produce so who could argue?

I had a completely full cart when Faith’s foot started to hurt. Lovely. So in the cart she goes, on top of all of the groceries.

I have to insert here that when we go to the grocery store, I don’t know if its the fact that I have twins, an adorable smiley baby waving to everyone or the sheer pity that I’m shopping with 3 young children, we attract a lot of stares and comments. It’s probably a combination of all of those things, but I just accept it and move on with purpose, racing to get through the check out line before someone loses it.

The rest of the trip went well, June went into super helper mode since Faith was immobile and Charles was still happy as could be. After we checked out, the girls asked to see the rooster. At Wegmans, there is a rooster that comes out of a barn every hour, on the hour, and the girls look forward to it every time. Whenever I tell anyone without kids about the rooster they look at me like I’m crazy, or they’re wondering how they could have possibly missed a barn and a rooster. It’s not a real rooster, just something I’m sure they added to the store to simultaneously help and hurt parents, especially those with children who can’t tell time.

Waiting for the rooster on another grocery trip in which I decided to attract even more attention to the ridiculous chaos by adding a gigantic balloon. I’ve clearly lost my mind.

I looked at the clock and we had 3 minutes, sweet, perfect timing. So I parked us in front of the barn to wait for the rooster, which is conveniently in front of the coffee shop. I felt as though I needed a reward for this excursion, or at least a pick me up to make up for all of the energy that this trip just drained out of me. So I grabbed a cup while we waited.

What was I thinking? How was I going to carry a cup of coffee, push and unload a heavy cart full of groceries under 4 year old Faith, effectively steer 4 year old June walking (you know if you have anyone under the age of 5 that “steer” is an appropriate and very useful verb here), and handle a baby who is obsessed with grabbing every cup in sight? This is not going where you think its going. You think I’m going to spill the coffee don’t you?

You’d think wrong.

We’re chugging (pun intended) along through the busy entrance, I’m successfully avoiding all the baby swats for my hot coffee cup when JUNE decides she can’t walk. What.

Her foot hurts from when she dropped a cup on it 15 years ago and you know, the pain comes back whenever it’s convenient for her, and I must give her sympathy because we’ve had a long drawn out foot saga for her sister and we can’t leave June out.

So what do I do? I beg and plead with her more than I’ve ever begged in my life, short of getting on my knees in the entrance of Wegmans, because that would have certainly looked weird, right? So I do something that DOESN’T look weird, I offer her a piggy back. I’m rolling my eyes right now at the sight of this- this had hot mess momma written all over it. How did I think we’d make it to the car in this state, all while CARRYING A CUP OF COFFEE???!!! Who did I think I was? A celebrity? Carrying a cup of coffee like its an accessory? Like I have an extra hand? I wish I had a picture of this to show you, I’m sure someone does because it was that much of a spectacle.

Thankfully someone had pity on me and offered to push the cart of 2 children plus groceries, while I carried my 4 year old and cup of coffee- not spilling a drop.

I haven’t taken them to the grocery store since….

 

 

Family Life, Random Thoughts

A New Year

I’m a sucker for newness; I love a fresh start, new possibilities and opportunities. I realize that not everyone operates that way, Charlie and Faith, in particular, are much more thoughtful and prefer advance warning when something is new and then ample time to adapt. I have a hard time remembering that sometimes. I’ll have a day when I wake up, rearrange all of the furniture in the house, go some place we’ve never been, and then make dinner using all completely new foods and wonder why they are so uneasy. Meanwhile, June and I are in “what’s next” mode. It’s so great that God made us different because their hesitancy when something is new slows me down when it’s necessary and my fast paced, always looking for the next thing pushes them out of their comfort zone a little. Charles…well, he just goes with the flow no matter what we are doing with very little complaining (unless I’m cooking dinner of course, he saves all of his complaining for then). I just love that child.

I think everyone can appreciate the newness of the New Year and want to set goals for themselves. I recently heard somewhere to not set New Years resolutions to FIX something because you’ll almost always fail- to set a goal, and the habits will follow. I think of things I want to do or goals to work toward all of the time, but if I write it down and publish it for the entire world to read, it has to happen right? So here are a couple of my goals for the coming year and some of the habits associated with it.

1. Goal: Vary my personal knowledge

I haven’t always loved to read, in fact, I absolutely dreaded it in school. I was queen of cliff notes for book reports. I never read for pleasure until college, when I had some health issues so I had to take a semester off and somehow I started picking up books for fun. Since then, I’ve read a portion of a book, probably almost every day and crave it. I have complete ADD when it comes to it (which I need to work on) because I’m constantly reading at least 5-6 books at a time. I can’t get enough of it and want to encourage our kids to love books as well, which I believe starts with the parents reading.

Some of my current reads, not including a couple novels I’m working through

What I’ve found though is that I am what I consume. If I’m reading all about functional medicine, diet and autoimmune diseases, that’s all I’m talking about (sorry guys, been a bit consumed lately about Faith’s diagnosis). If I’m digging into the Bible and reading about living Biblically, I’m more positive and encouraged to live more like Jesus. If I’m reading about living in the woods with limited contact with actual humans, I might start feeling a little depressed and sorry for myself. That’s the power of reading and stories, they really affect you as you invest yourself in them, which is amazing, but also important to be mindful of.

For that reason I want to ensure I’m varying what I’m reading and to do that I want to start purchasing a new book every month for myself, different books, novels, short stories, non fiction -all different subjects and authors, pushing myself out of my reading comfort zone. We go to the library weekly and I’m always putting books I want to read on hold, but there’s something to be said about actually owning a book for yourself. I see the importance for the girls when they get a book they get to keep “forever and ever”. They are in awe that they don’t have to return it to the library and show it to everyone who enters our house.

Personally, there will be times that I’ll come across a book I want to read and the library either doesn’t have it or there’s a long waiting list so I just shrug it off and forget about it. So, if I’m in the habit of purchasing a book every month, I’m able to gift myself a new book when I’m actually interested in it and I get to read it over and over (and write and highlight and do whatever I please) gaining new perspective and knowledge each time I, or anyone in the family, pick it up.

2. Establish a Daily Routine

I’ve read and heard from multiple sources that consistency and routine is essential for young kids. I’d argue that it’s also essential for adults, but this past month has put us in survival/Christmas/birthday/get through the day with as little crying as possible (for everyone) mode. With everything going on, routine has been thrown out for the most part. I guess that’s normal around the holidays, but I’m ready to establish a routine again even though part of me loves the freedom. It will look a little different than in the past since we are home much more than before and less mobile because of Faith’s condition, and I feel like I run a restaurant cooking all day every day trying to battle this disease with diet (more details on that to come). This has been sort of a blessing for us because we needed to slow down as a family, spend more time at home, but with that, we still need structure to our day or the girls will ask if it’s time for lunch at 9:30 am and ask to watch TV all day, and I’ll just keep losing my patience with the constant fits they throw every time I tell them no.

Planning the days and weeks also prevents me from getting to the end of the month thinking “oh whoops, all those homeschool activities I wanted to do this month have to be done this week!” I’m learning to give myself a lot of grace in this area, especially recently, but I still want to be intentional with our time together, even if it just means an established reading time every day.

I have other long term goals that I’d like to work toward but these are my immediate habits I’d like to adapt, I’d love to hear some of yours! Also, are you a sucker for change like me or prefer consistency?

P.S. Please send me your book recommendations!

Family Life

Faith

Our family has been through a lot in the past couple of months, so I’d like to take some time here to fill you in on what’s been happening with our little Faith, what’s to come, and how to pray for us. I truly believe that prayer changes everything, and God is in control of every single detail of our lives so thank you so much for praying and caring so much.

We’ve received so many questions about what exactly happened, and because this case was such a mystery to us and many doctors, I’ll provide a lot of details in case the details of what we went through is helpful to anyone else who finds themselves going through something similar.

In the middle of the night on October 31, Faith came into our room screaming saying “my foot doesn’t work really well”. She couldn’t put any weight on it but there were no more symptoms, no injury that we could recall and her foot looked identical to the other, just extreme pain. The next day she spiked a fever, redness started to appear on the top of her foot and she was in even worse pain, especially at night, all night. The following day we were at the pediatrician with an infection, cellulitis, in her foot and were given antibiotics to prevent the infection from spreading as it can very quickly with this type of infection. Antibiotics weren’t helping so days later we were admitted into the hospital with IV antibiotics for 4 days. They feared a bone infection which can be very serious so she had an MRI. It showed no bone infection, just cellulitis so we continued IV antibiotics until she could walk and then she was sent home with oral antibiotics. Faith is tough y’all, I’m absolutely blown away with her courage. She didn’t understand fully what was going on but she became everyone’s favorite patient because she was so sweet and tolerated everything so well.

A week after finishing her antibiotics her foot swelled and a fever crept up again. The pediatrician put her back on the same antibiotic (clindamycin-a very aggressive and yucky antibiotic) and after 6 days on it, still the same symptoms. We were sent back to the hospital fearing that a bone infection was either not picked up on the MRI or had developed since we were there before. She went back on IV antibiotics, this time a different, stronger one- vancomycin, and started to show some improvement. She received a bone scan of her entire body (our child laid completely still for 15 minutes, amazing) to see if a bone infection showed this time, as well as rule out any other scary cancers like leukemia. The bone scan came back clear, Praise God! But what was causing this pain and swelling? We saw so many doctors there and they all seemed stumped. Three days later we were discharged with a prescription for a NSAID and instructions to follow up with a Rheumetologist.

We don’t have autoimmune diseases in our family; and except for the occasional sickness, we are relatively healthy, eat very well (organic, vegan and gluten free- a diet we adapted a few years ago to combat chronic issues I was having), so we were skeptical. We met with a pediatric rheumetologist and he confirmed that she has Juvenile Rheumatoid Arthritis, an autoimmune disease. Her immune system is essentially confused and attacking her own body. There’s no telling exactly how she got it, it could have been her body fighting cellulitis. She could have not had cellulitis at all and this was the arthritis all along (which drives me CRAZY because of all the antibiotics that she was on to treat what we were told over and over was a very serious infection). It could have been a prior infection or illness that she experienced but her identical twin, June, did not which would explain why she had this and not June who has the same DNA. But he was confident that he could treat this and she’d be fine, just put her on long term anti inflammatory drugs and steroids when she needs it and no one will ever know she has this. I couldn’t handle the idea of putting our sweet (almost) 4 year old on so much medication and so I asked if there were any environmental causes or dietary changes that we could make to alleviate the symptoms instead of medication and he didn’t seem optimistic about that approach but agreed that we could try no medication for now and see how she does.

This appointment was about two weeks ago and she has seemed very stable, not worse or better but she is still limping and her foot gets tired occasionally. It’s truly heartbreaking seeing a child who loves to run around and explore to refuse to go outside because she’s afraid her foot might hurt. We do understand that this could be a lot worse and consider it a huge blessing that we are able to treat this hopefully before it becomes debilitating. We are working very hard to get to the bottom of this to get our sweet girl back to normal. In addition to our own constant research, we are working with a great dietitian who practices functional medicine and specializes in autoimmune diseases. We are looking at our diet primarily, nutrient and mineral deficiencies, that may be making symptoms worse for her as well as working on healing her gut after all of those antibiotics. And most of all we are praying for wisdom, healing, and direction.

I’m constantly reminded that God has His hand in this and He will guide us, give us peace, and that His love is never failing.

“”Though the mountains be shaken and the hills be removed yet my unfailing love for you will not be shaken nor my covenant of peace be removed,” says the Lord, who has compassion on you. ”

– Isaiah 54:10

I don’t think I’ve lost faith that God has us in the palm of His hand and loves us through every circumstance, but I’ve wondered why is this happening to Faith, why has our family been so rocked these past couple of months with hospital stays and doctor visits stressing and separating our family, and why now? Oh and why add in a stomach bug shared by our family during her second hospital stay, a baby who decided to stop sleeping, and extreme separation anxiety by everyone? It has taken me a while to see anything positive in this situation and I’m usually an optimistic person.

I recently thought about the what ifs- what if the opportunities and commitments we had in November didn’t fall through before all of this started? We wouldn’t have had the time to dedicate to getting Faithy better.

What if we didn’t decide to homeschool our children? She would have missed at least a month of school, all while June would have gone to school which would have made things really complicated and would have pulled them apart even more, isolating Faith.

What if we are going through this NOW and looking at diet triggers and changes so that we can avoid a more serious illness LATER in our family? What if this started now instead of when she’s older and I have less control over what she eats?

What if my husband and I were not on the same page about any of this? Thank goodness this experience has only brought him and I, as well as our entire family, closer and given us all a greater appreciation for all that we have and especially our health.

“For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord. As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.” -Isaiah 55:8-9

I’m starting to think that God has used all of this to remind us that He IS in control, no matter what we do, read, or treatment route we decide to take. I started looking back over the past couple of months and really saw how He ordered our steps. He timed all of this during the holidays, a natural season of thankfulness, celebration, and a time of reflection so it’s been very hard to forget His amazing love and sacrifice for us by sending his Son to the world.

“She will give birth to a son, and you are to give him the name Jesus, because he will save his people from their sins.” -Matthew 1:21

We are so grateful for this community, our family and friends who have helped us so much through this time by praying with us, listening to our concerns, encouraging us, offering advice, cooking for us, helping with the kids and just loving us so much. I can’t say thank you enough for all of you!

I hope you all have a wonderful Christmas and time with your family. I will try to keep you updated as much as possible about how things are going. Thank you thank you thank you for all of your prayers!