NKH

God is so good! Mike and I are so glad to finally have a diagnosis. We had feared (and prepared for) the worst case scenario. Although NKH can be very debilitating, there are meds that can at least partially treat it. And, Ellie Kate was diagnosed earlier than any other in the history of the hospital. Altogether, this hospital has treated 6 children with this disorder - only one other baby who is two and was just recently diagnosed. Currently, two other children are being treated for NKH, and their symptoms and problems vary. Ellie Kate's presentation is much calmer than any of the other two patients they are currently treating.

If you look this up online, it can be a scary thing. But, the doctors here have been extremely positive - since we have an early diagnosis, can now treat it early, and because Ellie Kate is doing so well. She could lead a completely normal life, and of course, that is what we would choose for her. But, there could be some disabilities as well that could arise in the future. God is so faithful, and we trust Him to prepare us for any road we may have to go down. For now, we will be in close contact with a metabolic specialist and pediatric neurologist in OKC - both whom were recommended by the specialists here.

Today, Ellie Kate is doing great! If you had seen her there at Baptist Hospital, you won't recognize her now - I guarantee it! God has performed a miracle, and I am convinced He isn't through! Ellie is breastfeeding, crying, moving, trying to focus, responding to pain, breathing on her own - all things she wasn't doing back in OKC. I give God all the glory for this!

This morning she had a follow up EEG (brain scan) and some urology tests as well. The doctors assure us that we will be going home soon, now that we have a diagnosis and now that we won't have to do the biopsies. Isn't that a huge praise?! Again, I give God all of the glory.

We have been so blessed by all of you. I was loved on this week by my dear friend Debbie Stroupe who flew all the way from Arizona to be by my side! So many of you have prayed, stopped by, called, emailed, sent cards, etc. Each of you have been a blessing to our families.

Whenever we have a for sure departure date, we'll let you know. THANK YOU for continuing to pray for Ellie Kate. God HAS healed her and IS healing her so that we will all know how powerful He is. He still heals people today, and He is more powerful than we could ever imagine.

All our love,

Ryan

Isaiah 43