Phoebe gets all dolled up to go get labs drawn. She looked so cute, i thought you would all want to see.

Phoebe has o get labs drawn 2-3 times a week as a part of managing her sodium.

-nathan

Here’s my beauty….sorry it’s a little late :/ She’s doing great!

She looks so pretty with eyelashes. I am a little shocked every time I look at her because it’s been so long since I’ve seen her with eyelashes and eyebrows, it almost looks as if she’s wearing make-up! And this is where you want to see a picture, but I don’t have one at hand. I promise I will get some pics up by tomorrow. Life has been blissfully busy lately. We are so thrilled to have a life away from the hospital and ER runs and Phoebe feeling poorly, we have been making up for lost time. Each day after we finish school, we are working on setting up the farm. We have had a great turn-out of people showing up to volunteer their time and energy to help us get started. The end goal is to have a training center for third world agriculture along with homesteading skills workshops and family camp weekends.

We are blessed to have a great church body and wonderful friends to come alongside of us during this new season. Some of the sweetest fellowship happens while preparing garden beds or pulling weeds. The boys have enjoyed the influx of families and kids coming to play and we are slowly but surely beginning to see the vision become a reality.

Phoebe has been feeling great and often comes to sit in her lawn chair and watch me in the garden. Her stamina still isn’t 100%, but she is making progress. Her feet often hurt because of the way she walks these days. She lost quite a bit of muscle in her legs during her sepsis episode and it has caused her to have knock-knees and over pronate. In other words, she puts her weight on the inside (arch) of her foot and it causes a lot of discomfort. We are looking into getting her another pair of orthotics that fit lower on the ankle but address her over-pronating.  

Her kidneys are still dumping potassium and her liver still sustains some damage, so please pray for those two things. Life is sweet these days, busy and full of activity and all of the things we usually take for granted. Joy is in the small things that make up a life and we are soaking it all in.

Thank you all for praying for Phoebe and continuing to ask after her,

~Amey

Phoebe had a 15 minute seizure this morning and temporarily lost movement on her left side. She had a hard time coming out of it. At the ER now.

MRI results from yesterday came back clean! What a bittersweet morning! Rejoicing together in the ER… It’s been that kind of day…

-nathan

We just returned home from a long day at the hospital. Phoebe did well in her MRI and came out of the anesthesia pretty well. Unfortunately, by the time the MRI was complete it was 7pm, which means we won’t have the results until tomorrow. Her headaches are becoming more infrequent since we started treating her with antibiotics for the double ear infection and that brings a lot of encouragement. We expect great results tomorrow and will keep you posted as soon as we know.

Thank you all for thinking of us and praying for Phoebe, she had a great day.

~Amey

Phoebe has an MRI in Dallas tomorrow afternoon. It was originally scheduled for May 14th but she has been experiencing some headaches so they moved it up. We spent Saturday morning in the ER with her with a fever that ended up revealing a double ear infection. I am praying that the headaches are just part of the infection. This will be her first post-treatment MRI, please pray for clear scans.

Caught Phoebe looking out the window this morning…I wonder what she dreams about…

-nathan

She sparkles everywhere we go, like sunlight glinting off snow. People ask, or stare until I feel obligated to answer their curiosity. I don’t mind really, I rather prefer that people ask why she has a tube in her nose or why she’s bald with a big squiggly scar on her head. It seems silly to ignore the obvious in these encounters. And her joy commands attention wherever she inhabits space, so it’s not as if she can be ignored. I’m so proud of her and how her struggle has only magnified her happy spirit. She elicits empathy from everyone she meets and her life proclaims “If I can do this, YOU can get through anything!” And I watch people respond to that message, often moved to tears by the revelation, and I feel like a steward of the most incredible gift a Mom could possess.

She walks through the snow, “I am CRUNCHING this snow!” she says. We have a had a beautiful time, save a little altitude sickness and a cough or two. We are staying in an incredible, 3 story cabin overlooking majestic mountain peaks blanketed with powder. In the mornings after breakfast, the boys take to the hill beside our cabin with their plastic sleds or build snowmen or have sno-ball fights. Phoebe and Deacon play Candyland or hide-and-seek or build snow castles with beach buckets and shovels on the porch. Nathan and I sip coffee and enjoy God’s artistry through the huge floor-to-ceiling windows and make plans for the day and plans for life. Make-A-Wish has outdone themselves with this trip. They sent us a huge box on our second day here with a S’mores kit, a snow-castle kit, a “how to make snow ice-cream” kit and a snowman kit. Last night they sent us up the mountain in a sleigh, drawn by beautiful Belgian horses to a yurt (yes a yurt!) where we dined on a homemade meal with live music from a solo guitarist. Half way through dinner Averic left the yurt to go outside to port-a-potty and he rushed back in saying there was a fox outside. We all went to look, and there, maybe 5 feet from us, was the most striking little fox in the snow waiting for the waitress to give him some food. She calls him “my fox” and feeds him regularly and he often makes and appearance at these dinners.

I can’t fully relay what I felt when I saw that beautiful creature up so close, so trusting of us, but it was a supernatural encounter. It was a gift. A lot of little gifts this week have added up to one big God-orchestrated trip for us. The one last parking spot up close to our destination that we seem to get every time on the busy Main Street in Breckenridge. The owner at the Twin Moose yogurt shop who gave the kids T-shirts and showed Phoebe her puppies on her iPhone, the way her love emanated towards our girl and our family. The lady at the 5 star ski-lodge who heard about our family and gave us a day pass to have our own private movie theatre and swim in the heated pool in the snow. A home-school Mom who is a photographer who heard about us and offered to take family photos for us on the mountain and with the horses. So many people, so much goodwill and we feel so taken care of.

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Today we will visit the children’s museum, go ice-skating and ride the gondola. Tomorrow we will pack up and prepare to head back to Texas. Phoebe misses Matilda, her cat, and Sadie and Howdy, her dogs. This has been a dream vacation for all of us and we have been so blessed every step of the way. Phoebe’s health has been excellent and her sodium levels seem to be doing great. Not ONE trip to the ER for labs, and THAT is an accomplishment! Thank you, people of Colorado, Make A Wish, friends and family who have stayed at our house to care for our animals and plants and baby chicks, friends who loaned us snow-gear…thank you for making Phoebe’s wish come true. She got to see snow, play in snow, SWIM in the snow, sleigh in the snow, throw snow-balls. It has been awesome.

He is good to us, Amey

Our day started at 4am and we are off on our Make-A-Wish adventure to Colorado.

Please disregard the post about Phoebe being in the hospital (if you receive e-mail notifications) we accidentaly posted an old-post. Thanks!