What a busy summer this has been!  We began by going to Kansas City's KU Hospital for Jeremy's donor evaluation.  It was a long day of tests, but we received good news that not only was Jeremy approved to donate again, but his cholesterol, blood sugars and blood pressure were the best they have been in years!  He has worked very hard to get his body in great shape to benefit Joe and his own recovery.  I am very proud of him.

Fun fact:  tradition in transplant circles is to name the donated organ and make t-shirts!  The kids decided to name Jeremy's kidney "Steve" from Cloudy with a Chance of Meatballs 2.

Jump forward a few weeks and Children's Mercy finally agreed on a surgery date, early August.  We will need to go back one more time prior to surgery for pre-op, but otherwise we are ready. 

All the planning and scheduling has come together so well.  Friends and family and neighbors have generously offered so much help.  We are so thankful.  It has put my mind and heart at ease.

As we think through our needs for the next month, Jeremy had a great idea.  We could use some meals to keep in our deep-freeze for when Jeremy is home post surgery with the girls and when we are all back home.  Some would also be helpful before then too as we have many appointments to keep. These can be small meals for 2-3 people and some larger for all 5 of us.  Joe's appetite is so unpredictable right now, so I have no ideas.  He eats a lot of Ramen Noodles (low sodium and drained)!  After surgery he can eat anything again, but until then we try to limit potatoes and cheese.  He is so adapted to this diet now, that he monitors his intake himself.

What is most important to us now is your prayers and encouragement.  We are all trying to take this one day-at-a-time. Thanks for taking the time to read this and please pray we feel God's grace as we journey along this road.

Back on the road to transplant

We went to the Kansas City Children's Mercy Hospital last week for extensive evaluation again for Joe.  His kidney function is now at the magical 20% function required for transplant.  After about 12 appointments in two days we believe Joe will be approved for transplant.  The nurse is now referring Jeremy to begin his testing again like he did last year.  Jeremy will have to go to the KU hospital for evaluation because they will do his surgery to remove the kidney.  We hope to go to KU within a few weeks.  Once Jeremy's testing is finished and approved for transplant the teams will book the surgery.  Our hope is that it will happen some time this summer, but it may be early fall.

Joe is not feeling great, but does okay most days physically.  He is really battling anxiety, not surprising for a child facing such a difficult surgery and life-long reality of strict medicine regime and continued medical treatments daily.  We really hoped and prayed the medical treatments would not be necessary after transplant, but the doctors do not believe that will be so for Joe.

We have learned that Jeremy will be in a separate hospital than Joey which is best for him, but hard on me to have my two favorite men in pain in separate locations.  Jeremy's oldest sister has agreed to sit with him while he is in the hospital.  This takes a huge weight off my shoulders! He is expected to stay in the hospital 2-3 days, but will require 4-6 weeks to recuperate.

On a happy note, I received a call from the Oklahoma Make-A-Wish foundation yesterday and they have approved Joey to receive a wish!  We will meet with volunteers soon to interview Joe and find out what his "wish" will be.  I am excited for him.  My prayer is that his "wish" will enable him to forget his worries for a while and be a kid.

We know God works all things for His good for those that love the Lord.  We believe He will use this trial to strengthen our son's faith and the faith of our whole family.  I am thankful His mercies are new every morning!

This is a picture of Joe, Emma, my sister Jennifer, me, my brother-in-law Greg and Jeremy at our favorite diner, Town Topic.  We love to eat breakfast here before going to appointments!  This time we got to bring Jen and Greg with us. :)

February 2014 Update on our son

God has been so good to give us about a year without much concern over Joe's kidneys.  We were even able to reduce some medicines.  Joe's kidneys maintained their function around 27-28% for this last year.  However, in January we saw that changing.

Last month, we noticed his function had dropped from 28% to 23%.  I began to notice more fatigue and difficulty sleeping for Joe.  He will also have days that he has no desire to eat.  Joe has lost 4 pounds in the last 2 months. The nephrologist said that if the function did not come up we would need to make contact with Children's Mercy Hospital in Kansas City again.  Unfortunately, his function dropped another percent, to 22%.

We saw our kidney doctor on Monday in Oklahoma City.  He believes it is time to go back to Kansas City and prepare for transplant.  He estimates we have about 6 months, before Joe gets real sick.

This is hard for us all to take in and process.  Jeremy and I have really struggled this week having to face this reality again.  Joe has taken it very hard.  His anxiety is really high.

I have called Children's Mercy and I am waiting to hear back from them on when we need to return to renew Joe and Jeremy's evaluation for transplant.  I assume we will go sometime in March.

Will you pray with us for our son's anxiety and overall nervousness to go down, for Jeremy and I to take each day calmly and with peace so we can help our kids deal with this stress and for Joe to not feel like so poorly?  We trust God with our son.  We trust God is holding us in His righteous right hand (Isa 40:31).  We know He has good plans for us (Jer 33:11).

Thank you.  We can use all of your encouraging words and support until we can get our "feet back under us" and are ready to fight.