TB and TBD

The nurse at the Living Donor office (the people who coordinate Keith's evaluation and surgery) called today and let us know that Keith came back positive for TB. That only means he's been exposed and it doesn't mean he can't donate. They just need to do more testing before we know more.

Prayer requests:

• Please pray for Keith's TB result to be a false positive and that he is able to donate (otherwise we have to start from square one looking for a donor).
• Evelyn is deteriorating quickly. Her blood pressure is still out of control (9 months of two blood pressure meds has done nothing to move her numbers).We will get the official approval for surgery Sept 12. Pray that they will schedule surgery as early as possible (October). If her labs do not improve in the next couple weeks we may have to consider dialysis, which is not the best option because it introduces complications before transplant.
• Protection from illness, particularly for the first 3 months after transplant, when Ev is most vulnerable to rejecting the kidney.
• Marilouise and Ada feeling secure and loved in all of the chaos.
• Smooth business operations while Keith is recovering (if he can dontate).
• Patience and sanity. It is difficult to watch your 2 year old struggling and be powerless to do anything more.

Thanks to all of you who continue to remember us in your prayers. We are SO grateful.

A summer of fun and anxiety

With the knowledge that time is short before we have another tumultuous season in our lives, I tried to pack in fun memories with the girls while trying to make progress in kindergarten. Trips to the Children's Museum, Home Depot, the park, family reunions, the beach, on the bus. Staying home for silly times in the backyard. Sorry there aren't more pictures to catalog the wonderful times we've had but sometimes I'm enjoying being with these super special girls that I forget to take a picture.

Taking a break from kite flying at the park with ML's best friend Luma and brother Mana.

Never waste a good slide! Share with a friend.

Creating wardrobes.

ML and mommy gave away water at a triathalon.

Teaching Ada to walk.

Teaching Ada to drive.

Having mommy time.

Riding a horse at camp with Grandma and Grandpa.

Pool fun with cousins.

Awareness

Some of you have asked whether Evelyn or Marilouise know what is happening. We sat down with Marilouise in June to have a full discussion about Evelyn's illness. I pulled up youtube videos to show how kidneys function. We ask her every once in a while how she is feeling. Sometimes I get interesting answers. "I can't wait until she doesn't have to have shots anymore. I don't like hearing her cry." Sometimes I get "I'm fine" when asked how she's been feeling lately.

Evelyn is very familiar with discomfort and pain (daily shots, headaches and flu-like symptoms from high blood pressure and high levels of toxins in her blood, frequent vomiting, monthly lab draws, IVs, catheters). She hasn't known anything else. After the initial pain of a large incision on her stomach I think she is going to be happier than she has ever been. I'm not sure she is able to comprehend that future joy.

I did overhear a completely spontaneous conversation between Ev and ML ("My kidneys are broken"), which sadly sounds a little scripted when I was able to capture it in video. Still pretty sweet.

Match made in heaven

Email sent 7/24/11

Dear family and friends,

I'll begin with an apology for not communicating more in the past few months with all the people who have loved us, prayed for us, cared for us, and walked with us through the various trials and triumphs these past couple years. In May, we went to Evelyn's routine check-up at nephrology (the kidney doctor). Sadly, her condition had deteriorated more than any of us had anticipated. The doctor decided that it was time for us to enter transplant preparations. We were taken by surprise, as we had anticipated and communicated to some of you that we would probably be looking at the transplant process in Spring 2013. We decided not to send out a mass email because we didn't have any details to share, besides anxiety and ignorance. Instead we waited until after Keith and I were evaluated for donor compatibility in early July. Yesterday, the living donor clinic called and informed Keith that he is a good match. We are very excited as well as scared. This is what we have been waiting for and dreading.

We'll continue to communicate as we know more. Pray for us as we feel overwhelmed by the upcoming surgery (potentially in November) and the post-transplant medical lifestyle.

Love to all of you,

Julianne and Keith

Marilouise, Evelyn, and Ada Claire

"Mommy, I'm going to war"

I'm still wrestling with the meaning behind this statement and corresponding uniform.

When you can't beat chaos,

create more, of course

Birthday cake for ML 2012

Moving up - here come kindergarten