Katie Update –
We are thrilled to see that Katie’s new medication is doing its intended job of raising her neutrophil count, giving her body more ability to fight infection. We have moved to doing the injections three times weekly, instead of daily, and will continue to track her counts closely.
We are pretty sure that her fever last weekend was part of her body’s response to the neupogen, but are thankful for our Unexpected Journey to KC. Besides being a faith-building experience, we feel like it also put us ahead of where we would have been otherwise in figuring out Katie’s response to the new med. We are also thankful to have found that Dr. Max’s idea of giving Claritin an hour before the neupogen has successfully headed off both fever and bone pain.
A wonderful benefit of Katie having higher neutrophil counts is being able to go off of the antibiotics she has been on for the last few months. (Those of you who know me know how hard that has been for this mama!) And to hear our high-level specialist doctor talk about rebuilding Katie’s microbiome?? Glorious!
Once her neutrophils have been stable for a while, we will next be going after the anemia. In the meantime, we also are waiting to hear news from the National Institutes of Health about our genetic picture.
Thank you for praying for and loving us!! We appreciate you!
Our trip to Children’s Mercy made Jesus’s words in Matthew 6 real to me in a deeper way than they have ever been before. Especially the part about food.
I think that for both Katie and I, the scariest part of hearing that we were going to need to go to Kansas City by ambulance for a 48 hour admit to Children’s Mercy was the thought of being hungry. When you have a special diet out of medical need, and home-cooked food is really the only safe way for you to know that you are getting what you need, the thought of an unexpected hospital stay several hours from home is terrifying. We both truly thought, “We are going to be soooo hungry!!!”
We live in the United States of America. While I have never been what Americans would consider “upper crust,” I have also never truly worried about going hungry. Not getting the food I’d like best? Sure. But not having anything I could eat without it making me miserably sick? No. And yes, I realize that, even in that, our concern about food was a very 1st world worry. Wanting to have food that doesn’t make us miserable is different than facing starvation, I get that. Nonetheless, this was the most concerned I have ever been about going hungry.
And wow. Did the Lord ever come through!
From moments after we arrived at Children’s, the Lord used friends old and new to bring us “safe” food. We didn’t just avoid going hungry – we feasted!!
In the words of Rich Mullins, “He will watch over you and He will watch over me, So we can dress like flowers and eat like birds.”
Thank you again to the many of you who have been part of God adding “all these things” to us (both in KC and in coming days). Our hearts are overflowing with gratitude, awe, and joy. May you be awed as He returns those blessings to you, packed down, shaken together, and running over!!!
~~~Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing? Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? And which of you by being anxious can add a single hour to his span of life? And why are you anxious about clothing? Consider the lilies of the field, how they grow: they neither toil nor spin, yet I tell you, even Solomon in all his glory was not arrayed like one of these. But if God so clothes the grass of the field, which today is alive and tomorrow is thrown into the oven, will he not much more clothe you, O you of little faith? Therefore do not be anxious, saying, â€˜What shall we eat?â€?or â€˜What shall we drink?â€?or â€˜What shall we wear?â€?For the Gentiles seek after all these things, and your heavenly Father knows that you need them all. But seek first the kingdom of God and his righteousness, and all these things will be added to you. â€œTherefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble. ~~~ Matthew 6:25-34
Kerrygold butter, raw honey, and coconut oil. Making even hospital coffee taste good, even without an immersion blender, for…. well, a good 5 minutes now. Maybe I’m having myself a first here. 😃
Thank you, Becky and Shawna, for the means to this yummy (even unfrothy) beginning to my day. 💜💗
Katie’s temp went down on its own, without breaking the official fever barrier. Her pain also decreased before the Claritin arrived (eased further with the Claritin). She got unhooked for a shower and a short walk around the circle on our floor. We are now enjoying some quiet time watching ice dancing.
*I’m surprised I didn’t actually say anything about Jonathan’s arrival Sunday evening! Such a relief to have him with us!
We’ve mostly been in waiting mode today, and had some wonderful company this afternoon. 💜
Katie’s temp is on the rise, but not over the official fever threshold at present. She is in a lot of pain from the neupogen at the moment, and we are working on getting some relief for that. Please pray for some comfort for her, and for a clear picture with the fever.
THANKS AND SUCH –
Y’all. We are just blown away. Humbled. Overwhelmed in all the best ways. Our God is indeed the Great Provider, and He is using YOU, our precious friends and family, to provide for us in so many ways.
I know that those of you who have helped financially would groan if I started naming names, so I won’t. But thank you.
Those of you who have brought/are bringing food and company – thank you.
For the encouraging words and prayers – thank you again!
For loving Katie and us – you have our hearts. Thank you.
We were so blessed to have food delivered to us by loving hands just after we arrived last night!
Tracy, one of my dearest, most golden friends, who does *not* like to cook, cooked and brought us a warm and yummy supper!! That is such love, and means the world to me. Thank you, Trix! 💜💜💜💜
And Melony, a new friend whom I’d only met once before, called me while we were on the way and asked if she could bring me some groceries. In just a few moments on my rapidly-dying phone, she “got it,” and brought lovely fruits, veggies, pork rinds, and even some safe chicken sausage we enjoyed for b-fast this morning.
We have a couple of friends bringing up food for us today as well. Such a blessing! I really had been afraid we would go hungry while we were here, due to our special needs. I wasn’t counting in how well we are loved!
About our food specialities, I’m linking to a post that summarizes what we’re doing and has some helpful graphics. I’ll also attach a graphic in the first comment that is a pretty good summary.