Sheriff Sarah

Sheriff Sarah

Wednesday, April 28, 2010

Back Home

Patty and Sarah arrived home early this afternoon. It's easy to tell that Sarah really misses being home. Aside from the fact she loves her siblings dearly, and vice versa, she is all smiles and laughter. Of course, she is normally happy but these last couple visits to the hospital have been a little more trying for her. She's not crazy about all the poking anymore and she gets very restless in her room.

Her tacrolimus has been raised to the highest point since started on it. She gets 2 mg in the AM and 1.5 in the evening. This means her immune system will be even further "asleep" and she will be more susceptible to catching even simple colds. So, we will have to make sure she doesn't get around a lot of folks who are actively ill. This whole dance is a delicate balance between protecting the liver and keeping her from getting sick. It's a rollercoaster without the fun, but just as much excitement.

Thanks for your continued prayers. It would be nice to not have any rejection episodes for a few months.

Saturday, April 24, 2010

The Road Goes Ever On

Is this beginning to sound like a broken record? We just learned that Sarah has a very mild rejection. This is the 2nd time out of four that the biopsy has confirmed some form of rejection. While I normally would like to have 50-50 odds, I'm not really digging this. Patty and I are fully aware of this new "normal" we reside in but its beginning to grate on me like nails on a chalkboard. My frustration level is increasing and I don't like the person it has made me at times. Obviously, PTSD cannot be underestimated. Somehow I must have believed I could handle the stress and continual "surprises" like it was nothing; however, that is not the case. I would ask that you please remember me in your prayers, that God would restore balance and sanity to my daily life and that I can be the father and husband that He has called me to be. But enough about me.

As for Sarah, the biopsy results dictate a return to Children's for the steroid IV for four days. The good times keep on rolling. Based on her history the past six months, the docs prefer to not mess around with ANY form of rejection. This is understandable and a testament to their care and concern for Sarah. We continue to be ever so grateful for the doctors, nurses and other staff at Children's. Our road would be so much more difficult if we didn't live in such close proximity to such a hospital. I may be frustrated but we know several families who have had to travel from out of state to Children's for long stays. They have other children who must come with them or stay home with the spouse. I wouldn't survive that scenario and praise God that He has provided those families with super human strength.I ask that He continues to do so.

On the sunny side, they aren't noticing a fatty liver, which had been a concern the last biopsy. You have to take the wins where you can. Sarah seems to be doing fine otherwise. Her personality continues to grow as does her body. She is a shining light to all she meets and such a charmer. All our kids are cuties but Sarah's unique situation has made her a walking testament to God's grace.

It is also a difficult time this weekend for us. While we are celebrating the 1 year anniversary of Sarah's transplant, we are remembering the donor family and the grief they are re-living for a different type of anniversary. This sobers me when I being throwing a pity party. Our life would be missing a vital piece if Sarah were not with us. I can't imagine losing any of my children at any time in my life. So, even though things aren't always cherry pie and whipped cream here, Sarah's life alone is a constant reminder of so much. We have found that this is all part of God's plan. Our older kids are learning a great deal about compassion and other things. That will serve them later in life and has already made itself visible through Arianna's faithfulness with praying at school and Katarina constantly praying at meals that Sarah's tummy would get better.

I know this is a very lengthy post and an emotional one but I can't hide where I live. This is what our lives contain at the moment and hopefully this will show other people they are not alone in what they are experiencing. If we can encourage other families struggling through serious circumstances, then I willingly accept the craziness and instability of our own situation.


Friday, April 23, 2010

Happy 1 yr Transplant Anniversary, Our Sweet Girl

We are finding it difficult to believe today is the one year anniversary of our little sweetheart's liver transplant. Those of you who know us and have been following our journey know what a hard road it has been for our family and we are eternally grateful for God's mercy and your tremendous support and encouragement. Sarah continues to pass milestones as she grows just like any other child. While the specter of rejection always looms, it has taught us to truly cherish the moments we have with Sarah, Arianna, Caleb, Katarina and all those who are precious to us.

Happy Anniversary, Sarah! May this be the first of many thanks to the gift of life from the donor family. God, please continue to bless and heal that family. While our year has been difficult, it is nothing compared to living with the loss of a child.

Kirk and Patty

Thursday, April 22, 2010

Another Day, Another Biopsy

Sarah's liver labs jumped slightly Thursday and so, guess what, another biopsy will be necessary Friday morning. Patty has to have her there by 7:45am for an ultrasound and some lab work. The biopsy is scheduled for 11am. Please pray Patty and Sarah have a good morning together, that someone can come and visit them at Children's and that the results come back negative Saturday for a rejection.

As always your prayer and support are cherished.

Sunday, April 11, 2010

Help Make The World Aware of Biliary Atresia-Join the Campaign

Facebook | Help Make The World Aware of Biliary Atresia-Join the Campaign: "Every 12 minutes another name is added to the national organ transplant waiting list. Nationally, nearly 17 people die each day waiting for a transplant. The need for donors has tripled since the inception of the waiting list"

Saturday, April 3, 2010

Twins with Biliary Atresia need liver transplants NOW

I can't even fathom what this family is going through right now. Please keep them in your prayers. They have been waiting almost SEVEN months for liver transplants.