I’m packing up Christmas today and trying to tidy the house. I needed a silly happy picture to add here to cheer up this post a bit. I’ve dreamt the last two nights about packing boxes. We have to move out of this sweet little home and we don’t know where we’re going yet. God knows, and it is all in His hands. So it’s a bit bittersweet, our last Christmas in this house that has held some very dear and difficult years in our family story. But we look to what’s ahead and we fix our eyes on eternity’s shores and we smile. We’re just pilgrims here, anyway.
I wanted to write a quick post to update you dear loved ones on where we are with Phoebe. I’ve posted a bit about her health here and on other social media outlets, mainly because I have felt that God has called our family to live this story openly. To share as much of the process of it and the aching unknown of it as we can because, friends, this is life! So much uncertainty! It would be far more comfortable for me to share with you all the tidy finishes and the nice happy endings, but so many of you are in the middle of your own unknowns. So many of you are facing unfamiliar terrain, loss, grief, hurts, bad news of your own. Those of us who have lived just a little measure of time here on planet earth know what it means to suffer. You just can’t get through life here unscathed.
I don’t know what the end of this story is going to be. It hasn’t gone at all like any of us expected. Even her medical team is finding her case to be perplexing. That’s never encouraging. How will God work this out? How is He going to provide for us? What is His purpose in this? Purposes, rather, because I know He is working on so many levels. Why has He entrusted this to us? I don’t know. But I believe He wants us to make Him known in it, to share how He is caring for us, how He is carrying us, how He is sustaining, how He is providing, how He is meeting us and satisfying us even in this painful reality.
I hope that brings hope to you, dear reader, in your own aching unknown.
Phoebe was diagnosed with celiacs disease a year and a half ago, after feeding issues and growth issues since basically day one of her sweet life. It was a relief to finally have an answer, scary and difficult as that answer was. We have continued to wait for the response to the gluten-free diet that we should have seen with Phoebe, but it hasn’t really come. She has had spurts of growth, then she will lose weight again. She has spurts of a better appetite, then she will refuse foods and seem more tired. She has basically all the same symptoms that she had at the beginning. People kept telling us to be patient, that it can take 9-12 months for the gut to fully heal, but we passed that mark and Phoebe seemed to take a turn for the worse. We recently had more blood work done and her results showed a fairly elevated level of antibodies. This would normally indicate that she’s been ingesting gluten somehow. However, without belaboring details, we are 99% confident that she has not. Thus they wondered if the tTg could be inaccurate and ordered another endoscopy and colonoscopy to also check for Crohn’s disease, another autoimmune disease. We just received her results a few days ago. The doctor found blood speckled all through her stomach and small bowel, which she believes is irritation from stomach acid. The other parts of her body seem normal, but her small intestine is showing severe active celiac. This is terribly discouraging to me, because her body is acting like she is ingesting gluten, and is attacking itself as if it is, but she isn’t.
At this point, we wonder if she is experiencing a cumulative build-up effect of eating trace amounts of gluten which is allowed in gluten-free products. We will probably pull out all grain and dairy from her diet and see if she improves. The difficulty with this is that phoebe is the pickiest eater ever, and she has never really eaten meat or vegetables. We do regularly work with her on this, and have also worked with a feeding team in the past to help her, but have never made much progress. She will try very hard to cooperate and it usually ends with her gagging and then vomiting. Grains and dairy and fruit are the bulk of her diet, and to take more away is very hard for a 6 year old. We fear that she will just stop eating, as she has done in the past when we tried going grain and dairy free. If this is the case, we will start a feeding tube. If she still does not improve on this diet, then we will have to begin steroids and immune suppression.
This news has felt devastating because we have worked so hard and sacrificed so much in the past year and a half and it feels like we’ve made no progress. Of course, we have made a lot of progress, but in my heart I was hoping we would be seeing improvement by now rather than still grappling with unknowns.
So this is where we are. No clear answers yet but at least a direction to pursue. For those of you who want to pray along with us–pray for us as we break this news to Phoebe. Pray for her to be willing to let go of a lot of her new favorites and learn to like other things. Pray for this route to bring answers very quickly as I don’t feel we have much time to wait for improvement. Pray for wisdom and guidance for us and her doctors and dietitians. Pray for provision for us. Pray for me to be joyful and focused and lighthearted as we move forward, rather than weary and heavy as I feel right now. Pray and watch with us for healing, total and complete.
So many of you love my girl so much and so well, and I can’t tell you what that means. We will keep you posted as we go!
God is our refuge and strength,
a very present help in trouble.
Therefore we will not fear though the earth gives way,
though the mountains be moved into the heart of the sea,
though its waters roar and foam,
though the mountains tremble at its swelling.