April 17, 2006

Dear Friends and Family,

I hope you had a blessed Easter!  We had a great Easter, but spent the holiday in the hospital - much like we did with Christmas, New Year's and Mike's bday.  OU Children's Hospital has been great.  As Mike posted earlier, the facilities are pretty outdated, but the staff is incredible.

As for EKM - most importantly, she is no longer in pain.  We are so glad that we made the move from Baptist to here if only for that reason alone!  No more hours of crying, screaming, and painful movements.  Though sedated, EK is able to have moments of alertness.

These past few days have been precious.  We know we are limited on time, although unsure of just how limited we truly are.  We have had a lot of family time and have been taking many pictures and videos of our darling girl.  Ellie is still have seizures - quite frequently, although the severity of the seizures has decreased dramatically.

Right now the plan is to seek out all options we have concerning EK.  She is still not tolerating her feeds, but is receiving nutrition through her main line (located now in her chest).  Doctors have changed meds and her tummy seems to be much more comfortable.  We will continue to consult with the professionals here until we have sought out every possible treatment and remedy.  We have now though come to the conclusion that Ellie's NKH is rapidly progressing.

Another crazy thing happened to us this weekend as well - our hot water tank busted in our house!  The funny thing (well, funny to us) is that the hot water tank is in our attic.  Soooooo, our attic and ceilings have flooded!  We will have to replace ceilings,walls, cabinets, and possibly some furniture due to the destruction.  God is good though because Mike's parents happened to be at the house while it happened, and we were able to turn off the water before it caused damage to the entire house.  Thank goodness for home owner's insurance!

Ways to Pray:
1. That EKM will continue to be at peace and not in pain
2.  Pray for wisdom for the docs
3. Pray for us that we would have peace and wisdom
4.  Pray that we would be prepared for the future
5.  That VERY SOON our family would be reunited and we can go home (wherever that might be, just not in a hospital!!)

Thank you so very much for all of your prayers, love, concern, calls, notes, hugs, etc.  You are such an encouragement to us!  We love you all dearly.

Ryan
Is. 43:10