The Results Are In

Being Ellie's mom is more joy-filled than I can express in words. The reminders of the Lord's faithfulness, gentle teaching, and loving care truly abound and multiply every week. I see His care for us in providing for our needs, encouraging our hearts through His Word and His people, and giving us the undeserved gift of our daughter who genuinely blows us away with her sweet and sassy personality, determination, and remarkable development.

Part of my job in caring for Ellie has meant and will continue to mean hours on the phone and in medical waiting rooms. More often than not, I have struggled with feeling like these monotonous waiting games waste my time, and the the inefficiency of these systems can be frustrating to say the least. What is God doing in the midst of my 20th call to the Pennsylvania Department of Human Services? Is the doctor running an hour and a half behind, throwing Ellie's schedule for a crazy loop, truly forging patience, perseverance, and character in my heart? These little inconveniences are regular invitations to submit to these opportunities to mature instead of missing the chance to grow in these virtues.

A couple of days ago, I asked the question: "What if someone told me that my life's calling from God is to talk with insurance people over the phone and go to doctor's appointments? Can you do these things for God's glory?" In reality, that is my calling. So often we think of "calling" as a grand, life-long accomplishment when it is actually made up of our day-to-day moments. Any of these things I do as Ellie's mom is something the Lord has set before me to complete with faithfulness. I love this quote from The Gospel Coalition in a recent article called "Choose What You're Impressed With:"

We should be impressed with self-control over self-aggrandizement, gentleness over power, faithfulness over platform. (emphasis mine)

My platform in this season is the customer service line, the waiting room, the changing table, the physical therapy session, and the tummy time blanket. Four years ago during college when I agonized about which platform to pursue upon graduation, this was not what I had in mind, but it is right and it is good. I am humbled by these opportunities to practice faithfulness with what the Father has entrusted to Chris and me.

On Wednesday in the waiting room at Children's Hospital, my eyes were opened to the people around me as I sought to sit in the waiting room with faithfulness. I mostly listened to the hardships of two different families and shared that Eliora's name means "my God is my light." I held her inches from the face of a 6-year-old girl named Hope who can only see a few inches away, wondering if she had ever truly seen a baby's face before Ellie's. On my other side, I rejoiced with a mom whose son is four years out from his battle with leukemia. And I prayed a silent, "Thank you, Lord. You have been good to us."

He is always good, even when our circumstances or feelings seem to say otherwise, because His character is not dependent on light and momentary afflictions or the broken understanding of our own hearts. That said, we have reason to celebrate after a couple of full weeks of appointments - not simply because they are over (for the next six months), but because of the reports we have been hearing from doctor after doctor.

Last Tuesday Ellie had her renal ultrasound. I heard from her pediatrician yesterday that both kidneys look great! On Monday we met with the neurologist, and she told us that Ellie is at risk for abnormal brain structure due to her diagnosis, but this would not change anything other than having more information about her. We will not pursue getting an MRI at this time since that would require anesthesia and there are no concerning symptoms of seizures that her other Cri du Chat Syndrome (CdCS) patients have shown. On Wednesday the ophthalmologist took a good look at her eyes and ruled out cataracts and any other immediate issues.

There is also a pretty significant plot twist regarding Ellie's little feet. For those who may not know the full story, Ellie was born with her feet pointed out and up. The hospital staff took some x-rays and diagnosed her with Congenital Vertical Talus (CVT) bilaterally that day. We met with two different pediatric orthopedic surgeons in Louisville who confirmed this diagnosis and explained that treatment would entail serial casting of both legs and then surgery. At first we were told this would begin at two months old, then only for 4-6 weeks around this point in her life right before surgery at 6-9 months of age. For months we have been gearing up for these uncomfortable weeks and expected to begin the process relatively soon after seeing orthopedics on Friday.

When our doctor entered the room, he took a quick look at her and stated his disagreement with the CVT diagnosis. You can imagine my shock. He ordered some x-rays which confirmed his opinion that Ellie's talus is actually oblique in both feet. This is good news in the sense that it is less severe. When Chris's mom and I asked him how that changes the treatment plan, he explained that he would have casted her at birth but does not believe that would be beneficial at this point - we "missed the window" (can you imagine a 5-month-old missing any kind of window?!). Instead he proposed putting her feet in braces when she demonstrates an interest in walking, which will most likely be two or three years from now, and surgery to lengthen her dorsal cuneonavicular ligament on the top of her foot at 5-6 YEARS old. For now, he said, there is nothing to be done.

To summarize, this is a better diagnosis but a completely different treatment and timeline than we were originally told. To think that we missed our opportunity to help Ellie's feet develop in a more functional direction because of the misdiagnosis in Indiana and Kentucky frustrated me and caused me to face some unspoken fears I have tried to ignore. It is still difficult for me to wrap my mind around trying to teach Ellie to walk on her feet as they are today, especially as she will have even more difficulty due to the CdCS.

For several reasons, Chris and I decided to ask for a second opinion to confirm this new diagnosis and seek clarification about treatment moving forward. Yesterday I met with a different orthopedic surgeon who agreed that Ellie's talus bones are oblique and invited us to follow-up in six months so that her feet can be monitored. He suspects that her feet will somewhat self-correct and that she will not have pain when weight-bearing. He also had an earlier timeline in mind for surgery, more in the 2-3 year range. We appreciated the invitation to be seen again in six months instead of leaving her feet alone for a couple of years, and we had a better conversation with this doctor that answered our questions and confirmed that this is a better prognosis.

Ellie will no doubt struggle when she is ready to attempt walking, but we are so grateful that she does not have CVT as the outcome for those surgeries is, we are recently learning, not the best. Medically, Ellie is in great health and we are so grateful to have ruled out many of the organ defects that often accompany children with CdCS. Thank you all for your prayers as we have explored her internal health; we are blessed!

Moving forward, we are beginning weekly physical therapy and occupational therapy to work on motor skills. Ellie is showing some delay in these areas and presents with weak muscle tone, so these sessions use a home-based coaching method to equip us to help her develop to the best of our abilities. Hopefully we are heading into a season of more routine, and I look forward to focusing on these skills with Ellie.

A quick hilarious anecdote: tummy time is still not Ellie's favorite, and I actually had a dream last night that a doctor called CPS on me because she felt we weren't doing enough tummy time with her! My mommy guilt tends to manifest in dreams, apparently.

Thank you again for praying for us and encouraging us through this journey. Please join us in praising God for so many good reports! At this point, these are our prayers:

• Medical assistance from PA and IN to be approved. We believe God will provide one way or another, but we are still praying that these crazy application processes will reach an end (and hopefully a favorable outcome) soon!

• Helping Ellie develop and strengthen her body and mind using the tools we have.

• Praying those little feet in the right direction! We worship a God who heals through medicine and sometimes through unexplainable, merciful answers to our prayers.

Blessings, friends.