May 29, 2010


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


  1. Scott and I are continuing to pray for you all, for healing and answers and peace. It looks like you have contacted the experts in the field, and I pray they may be able to help. Your dedication, faith, and love for God continuously inspire me. Finally, I LOVE looking at Pinny's pics, she is such an adorable lil' girl! Love, Nancy B.

  2. You have all of my prayers for each of you specifically. That is a great medical facility...praying for the "rare talent". I know its easy to despair but I keep remembering your 3 legged stool...and God LOVES impossible situations, so we can all have confidence.

  3. Thanks so much for the specifics of your prayer requests. This is so helpful.

    Pinny is absolutely BEAUTIFUL and I love seeing these pictures! I know this is a difficult road to walk but how great to be a part of the Body of Christ with so many walking the journey with you!

    Please know I continue to pray for you guys DAILY!