May 29, 2010

while pinny sleeps.


Thank you so much for all your support & prayers. We could not imagine walking this journey without your love and kindness. Here is a quick update:

Pinny continues to have seizures. Everyday varies- some days she has none, other days three, four, five. She is just precious and our love for her continues to grow more and more each day. My mom has been with us since before Pinny was born. She helps me with feedings, cooking, cleaning, laundry, shopping and in general, has been here to dry our tears.

Pinny is currently diagnosed with having a rare genetic disorder (NKH or glycine encephalopathy) and is being treated aggressively even though this diagnoses has not been verified by genetic testing. We feel this diagnosis is wrong and are fighting hard to prove it. Jer has contacted three top specialist that work with NKH patients and invited them to view her online health record. Two of the three physicians replied saying something like "it is unlikely she has NKH, but not impossible. Are you sure the spinal draw was uncontaminated?" Any drop of blood (even microscopic) in her spinal fluid can throw her amino acid numbers off and show up incorrectly. Yesterday, she had another lumbar puncture to hopefully disprove the diagnoses.

We have an appointment with one of the best pediatric geneticist in Chicago this Wednesday and are scheduled to go to Cleveland Clinic sometime this month for a second opinion. These appointments could not come more quickly. We want answers and we wanted them yesterday!

Below are some prayer requests as many have asked for more specifics. We covet your prayers and fasting on our behalf. Here are a few of the current things on our hearts:

-Speedy acceptance into the Cleveland Clinic

-Heart would not despair
-Strength for each day

-Balancing a demanding job & Pinny's health concerns
-Wisdom in making decisions about future

sleepy saturday.

May 26, 2010

cleveland or bust.

Looks like we are headed to the Cleveland Clinic next week for a second opinion. We will keep you posted.

pin, elsie & nora.


We have been so blessed by the love you have all shown us. The outpouring of texts, emails, voice mails, notes, comments, visits, meals & prayer/fasting on Pinny's behalf has left us humbled and grateful. We are so appreciative of all the ways you have shown us love.

Just wanted to say thank you for walking this journey with us.
Much love.

May 24, 2010

pure talent.

mom the hero.

One month ago today, my mom flew in from North Carolina to be by my side pre-delivery. She has not seen her house or slept in her bed since that day. This past month has been the toughest time in our lives and she has walked this journey with us. We can't imagine how we would have survived without her.

There are no words to express our gratitude & thankfulness we feel to her. She has loved me and Jer with kindness, gentleness and selflessness. She has loved our little girl without fear and with her whole heart.

We pray and trust that one day Pinny will get to hear the story, told by her Grammy, of how the Lord healed her. We know she will have to re-tell it again and again.

We love you and thank you, mom!

May 22, 2010


jer the brain.

I always thought my husband was smart but now I KNOW he is smart. My love and respect for him has increased immeasurably through this process. He is a leader and a fighter.

He has spent the last week researching on behalf of our lil' girl. He is retaining knowledge, questioning authorities and driving me nuts by using words like "glycine cleveage." Jer set up a 'Google Health Record' for Pinny complete with detailed documents, test results and videos. He bought medical journals and contacted those who have written them to view her online health report. We now have those who are most familiar with glycine encephalopathy (one at Johns Hopkins, one at Cincinnati Children's and another from University of Colorado-Denver) on our case.

We are waiting for more test results before moving forward in pursuing a second opinion. Please pray for wisdom!

May 20, 2010

our pin stripe.

meeting great grandma.

three-legged stool.

Dave and Betsy Corning, dear friends of ours, came over Saturday night to pray over Pinny and our family. Dave offered insight and a proper perspective that has set the tone for our approach in handing this situation.

He shared that we need to be 'balanced' on a three-legged stool:

- God is sovereign and in control so I can have confidence.
- God is good so I can have hope.
- God is holy so I am accountable for my actions.

May 19, 2010