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!