The starting line

Email sent on 3/23/11
We didn't know at the time this was the start of a long marathon.

Hi, family,

I only had the energy to call mom yesterday but I wanted to let you know what we found about Evelyn on Monday and Tuesday. We're startled and worried and would appreciate your prayers.

• Evelyn's in stage three chronic kidney disease (50% function). They're not sure the cause yet but we have another appointment the end of April so we'll be investigating for a while. They'll do her blood work again to see if reducing the protein in her diet (i.e., removing cow's milk from her diet) reduces the stress on the kidneys. At this point, the doctors are saying this is most likely as good as it gets for Evelyn and that all the work we are doing is to maintain her kidney function, not so much to improve it. We're fortunate in many ways because stage four usually means kidney dialysis and state five usually means transplant so we're thankful for where we caught it.
  
• She's anemic, which is another indication of the disease. Her body is probably not producing the hormone that signals the body to generate enough red blood cells. Most likely, we will start giving her shots of the hormone next appointment and then they will teach us to administer them every couple weeks.
• The most critical issue at the moment is her growth, a bi-product of the disease. Since our largest growth spurt is from 1 - 3 years old, which is entirely dependent on caloric intake, and she has a lot of catching up to do, they want us to consider a G-tube to help us tackle this (installing a feeding tube into her stomach). We've switched some things in her diet (lowering protein, raising fat and carbohydrate). She's not very excited about rice milk and she misses yogurt but I'm persisting.
  

Her prognosis is not good but I want to maintain hope and belief that things will be better than expected. We're just really tired. We've been living an emotional roller coaster. We'd appreciate prayer against anxiety and doubts that God cares (because in my mind I know He does but I feel myself slipping into despair that I'm going to lose my baby). Prayer for thankfulness and peace, that she'll eat really really well and that I wouldn't fixate over every bite and sip. Wisdom in decision making and hope for the future (no matter what is in it for us).

I'm sorry for not calling each of you individually I'm just feeling really worn out. I'll resurface very soon and call each of you.

Love,
Julianne