Head Full of Mush

Quote of the Week: Blaise Pascal

2012-01-21T21:49:00.000-08:00

I love a good quote so to help me post more regularly and (hopefully) to make you stop and ponder life at least once a week. This time, from one of the greatest minds to ever live. Pascal was brilliant and lived far too short of a life. Renowned as a mathematician, he was also a philosopher.

"As men are not able to fight against death, misery, ignorance, they have taken it into their heads, in order to be happy, not to think of them at all."

Living a Dream When Your Life is Anything But...

2012-01-12T21:14:00.000-08:00

A dear fellow liver mom and true warrior, Erika White, whose 5-year-old daughter, Emerson, is terminally ill maintains a blog detailing the ups and downs of her family's life as Emerson battles to live another day.

As I've contemplated my own New Year's goals and dreams, I read Erika's January 11 entry. It's pure magic. But don't let me spoil it. Read it for yourselves and disseminate it as widely as possible. THIS is what life is about, people. Life is precious and the days we have are numbered. Treasure them - really, treasure each single minute you have.

New Year, New Challenges, New Decisions

2012-01-02T17:10:00.000-08:00

Happy New Year to all my blog followers! I trust your Christmas was exceptional and full of joy, love & laughter. We enjoyed the closeness of family & watching our kids' eyes light up with each new gift they received. Despite the goldmine of gifts, I'm grateful my children know the true Reason for the season.

Inexplicably, yet another year has passed. I'm beginning to believe my prayers back in my childhood (and especially during school!) for the days to pass quickly has been realized the older I get. Didn't we just have Christmas? Didn't we just celebrate all the kids' birthdays? Didn't I just turn (gulp) 44 years old? Coming to grips with the fact I can't stop the continual march of time is one of those issues I need to surrender to God in 2012. Seriously, it's sometimes very difficult to watch things change so much in a seemingly short stretch of time.

With a new year brings new challenges and not just letting go of my pointless battle with time. I'm nearly two months into a new job and that brings its own challenges & adjustments.

There's the challenge to keep Sarah healthy, as best we can. She's made it nearly six months in between clinic visits and we are grateful. She's battled colds and coughs throughout but nothing that's warranted additional labs or hospital visits.

How about the challenge of keeping up with three kids' homework and involvement at school? I was able to spend the first two months of the school year volunteering and sharing time with all three at school. A joyous time, to be sure. Now, the trick is to keep up with spelling tests, handwriting, science projects, book reports and everything else!

Or, the challenge of setting aside time for my marriage? We all know muscles atrophy over time if they are not utilized every day. Marriages can do the same. The challenge this year is to make the time (not find the time) to nurture my marriage every week, whatever form that takes.

And decisions? There will be plenty to make this year. Finally complete my degree or not? Take substantial writing courses to hone my craft and create publishable work? Visit Disneyland or put it off another year? Perhaps the last decision is one my children find very important but you catch my drift.

All of us have things awaiting us this year. What are the challenges or big decisions that face you this year?

Embarking on a New (Job) Journey

2011-11-15T08:00:00.000-08:00

My recent foray into the job market, brought out of necessity by a layoff, can best be described as feast or famine. Early on things seemed promising and I flattered myself into believing I'd easily land a new position prior to my mid-July layoff date or shortly thereafter. I had some interviews in March, April and May and then three in one week in July but no offers. I joined a career group and rode the wave with some other career seekers and last week signed an offer letter with Panasonic Avionics. I started the new job yesterday.

But the road was not easy and confounded me at times. I did everything I knew to do regarding networking, LinkedIn, and trying to engage people at companies of interest. Things heated up late last month when I received calls for three interviews, all with local aerospace companies. I received an offer from the first one and was ecstatic. Then I received another offer. Honestly, I'd never been so popular in all my job seeking days. I believe the position I accepted is with the right company, for the right job at the right time and I'm grateful and blessed. I'd prayed for a position to come before the holidays. I could bore you with my insights into the lessons of patience, perseverance and warding off frustration but suffice it to say the experience was well worth it.

I was able to spend untold hours with my kids, including attending one field trip with all of our school age children. I was able to get them ready for school and drive them to & from school each day. I was able to spend most of the summer with them. Precious time not to be overlooked. I'll remember this time fondly and the fact I was looking for a job will always be secondary to the memories created with my family.

But now it's time to get back to work.

Three Years Ago...

2011-11-14T07:00:00.000-08:00

It was on this day in 2008 that we heard the words "biliary atresia" for the first time. I can remember it like it was yesterday. Sarah had visited her pediatrician for her two month appointment and for some reason, the doctor didn't like the fact she was still jaundice. She ordered complete labs and Patty waited at home for the results. I was finishing my second week at a new employer when I returned home. Patty was just completing a call with Dr. Gan and she looked at me and said, "We need to take Sarah to Children's ER right now."

I still remember the looks on our other three kids' faces. Patty had planned a pajama movie night and was getting them all settled in with some popcorn. We called my parents and took the kids over, pajamas, popcorn and all. We didn't know it would be almost two weeks before we returned home. I'm recalling those days and the singular focus of Sarah's well-being and it brings great pain to my heart. It's not only because Sarah was diagnosed with a life threatening disease. The time I lost with the other kiddos; not being to explain what was happening; completely consumed in life at Children's through the Kasai. It's only God's grace that they weren't traumatized by our absence. My parents moved to Washington for the sole reason of sharing life with their only grandchildren and watching them grow. This proved a major godsend through the entire ordeal. But I digress...

When we entered the E.R. that evening, we had no clue what was in store for Sarah or for us as a family. When we were greeted by the staff - "this must be Sarah!" - we knew things were far from normal. I clearly remember the first time I heard "biliary atresia" uttered by one of the E.R. docs. I immediately ran a search on my laptop and didn't like what I saw. In fact, when the doc saw my face,she said something to the effect of "Do not read that out loud." I remember being in a fog most of those first ten days at Children's Hospital. Over the next couple of weeks, I'll be reflecting about the days that changed our lives forever.

Celebrations and Transitions

2011-09-26T07:41:00.000-07:00

Sunday we spent time with some dear friends sharing communion and a meal. One of the couples will be moving out of the area and it was a time to share stories, laughs and food before they leave. It’s a difficult time for me, personally, as they’ve both shared in many aspects of my life and my family’s life. A new chapter begins for them and I can envision great things ahead of them. I’ll miss them but realize God has bigger plans in mind for them. Their willing hearts to serve wherever they go are inspiring and I hope someday to reflect that same heart.

One week ago, my wife and I celebrated our 12th wedding anniversary. It’s amazing to consider how much time has passed and all that’s changed in our lives. Four little munchkins invaded our home at different stages over time, each one a beautiful addition and challenge. Somehow I’ve gotten older and my hair grayer. I’ve worked more jobs than I’d care to admit and have been laid off twice. I went from dreaming of writing to actually developing a habit of writing daily. We’ve survived Sarah’s illness and transplant. Through it all, my lovely wife, Patty, has stood with me, sharing this journey through life.

So, yes, it’s a time to celebrate. I’m celebrating the friendships that will change but not end. I’m celebrating a marriage I hope endures for another 40 years. I’m celebrating my kids growing, learning and their creativity & resourcefulness. It’s also a time of transition as we look to the future. Yes, I’m searching for a new job but there’s also the stories I believe I need to tell through my writing. There’s watching my oldest child begin the 4th grade and realize she’s growing ever closer to becoming a young woman. My parents and in-laws are growing older and their health is no longer at an optimum level. I would never say I’m experiencing a midlife crisis but it’s definitely time of change. So the question is this: Do I choose to embrace that change and what’s behind door #1, relying on God to lead me along His path for my life? O do I choose to lament where life may be headed and take my chances with door #2? It can be frustrating and challenging in certain moments but I think I’ll stick with door #1.

Back to School

2011-09-12T14:55:00.000-07:00

Fall is almost upon us. Leaves are beginning to change color and fall from the trees. Summer is getting in those final gasps of warm weather and our children have gone back to school. Our summer weather got such a late start in the Puget Sound, it really seems like we hardly experienced summer at all. Once it began, though, the weather was glorious and my family had ample time to enjoy it.

As I've noted recently, I'm in a transition of sorts. I wouldn't call it a mid-life crisis but at 44, some people may take it for one. I consider it more of an opportunity for change and growth. In some ways, I'm headed back to "school" as well.

I have a lot to learn and I will be the first to admit it. Just three short years ago I found myself out of work following a layoff (are we seeing a pattern here?) but it seemed different. This go around, I'm determined to land a new career squarely centered on my strengths and interests. As fall brings changes galore, so has this job search. I'm considering a full-blown career change into the medical field but would also like to engage in some writing classes. Lord knows I need the help!

I'm learning --- slowly, perhaps --- that life is more than just working a 9-to-5 job. I'm looking for fulfillment in a few different areas. One of those is completing due diligence about the formation of a non-profit to assist families of seriously ill children; specifically, families with liver diseases. There are many organizations already out there that offer financial assistance and even housing. Our idea is more about emotional and physical help based on our experiences in the hospital. I will delve into this in a little more detail in a future post.

Then there's my writing, which is taking on a different nonfiction-focused edge. There are three books screaming to be written, including one picture book. I have an essay idea or two burning a hole in my pocket, and that doesn't count the one I wrote about Sarah's initial diagnosis that I still hope to land somewhere.

So, leaves begin to fall, the kids are in school and I get to learn new lessons and step forward in faith into a new beginning with my career, my writing and serving others. What a fabulous season to reside in.

Summertime Fun

2011-08-29T14:55:00.000-07:00

Well, look at the time --- it's nearly September! Can you believe how this year has flown by? It's at this point I would generally joke with my co-workers about how many shopping days remain until Christmas, but I'll let you figure that out on your own. I find it hard to comprehend the speed with which the years continue passing. I wish I could slow that train down --- and with it, my kids growing up --- but it's impossible. Better to enjoy each day for what it's worth and look forward to the blessing of another day.

Sarah's fighting off a cold or something right now and we're hoping she won't need labs. As we approach her 3rd birthday, we've been reflecting back on the past couple of years; the opportunities gained and lost. We're watching other liver families struggling with serious medical complications and others who have lost their children. This cycle is endless. We never knew that when we became part of this community how much exultation or sadness would become part of our lives. For those of you battling: we continue to stand with you through whatever crisis you're fighting. We're knit together by liver disease and you are never alone.

But this is summer, time for taking in some rays, family vacations and lots of fun, right? Yes, it can be that and we've experienced our own fun days this summer, including the christening of our new backyard fire pit last night with marshmallow roasting. Summer is for making memories and I've been blessed to enjoy some time with my kids I normally wouldn't have if I'd been working. If you're going to be laid off, summer is the perfect time, I suppose. We didn't get to do everything I would have liked but we did make it to Rockaway Beach, down to Oregon to visit some friends and up to Diablo Lake in the North Cascades.

Even amidst the joy of sharing time there comes the pressure of finding a new job, though. And the fact I put my writing on the shelf probably didn't help me. But I've resolved to resume writing and am full of fresh ideas and new twists on stories already underway. It's a priority to finish some projects this year and I am refocusing on those efforts.

With school set to begin in a week (aw, c'mon REALLY?!?) I will have more dedicated time to work on those projects and to also spend some one-on-one time with Sarah. Might even work in some coffee dates with Patty. Now, that is a novel idea! Three kids in all day school --- where has the time gone, indeed!

Why the Long Silence

2011-07-12T21:03:00.000-07:00

I just looked and I haven't made a blog entry since May 9! Wow, my apologies to the loyal readership. There have been a couple of reasons for the silence:

1) not much to talk about as Sarah has been doing great

2) I've been immersed in training my replacement at work and spending a lot of time on my job search.

As for #2, my last day at my current employer is Friday, July 15. It's hard to believe I originally learned of the layoff back in late February and the time has finally arrived to depart. I spent three days last week in Wisconsin insuring the new team is ready to go, and answering last minute questions. I'll be honest: this last month and half has seemed very surreal. It's been an interesting road to reach this point, to say the least.

We received even better news regarding #1 today: Sarah's labs looked so great at clinic that she doesn't have to be poked for THREE months. And get this, no clinic for SIX months if she stays healthy. We are sending out HUGE prayers that will be the case. We couldn't have done this without you and your prayers. We know this is no coincidence. Sarah has been enjoying a steady time of trouble-free days and we are grateful.

In the meantime, I hope to update the blog more frequently (where have you heard THAT before?) but no promises. A man has to know his limitations, after all. :)

"Normal"

2011-05-09T14:10:00.000-07:00

At Sarah's last lab visit, she reached a milestone. Her liver labs ALL came back within the normal range. WAHOO! She still tested for EBV, but the number was so low, it rated as "negative." You may wonder how we can take so much joy from normal readings. Simply put, this is the first time we can remember that Sarah's had normal labs across the board. Ever.

So we pause for a little cheer and a sigh of contentment. Those days seem to have been far and few between the past two years, but in truth we have experienced more than our share of blessings and those continue even as I await for a layoff in July.

Remember to celebrate daily, whether it be a baby's new tooth, a child's joyful personality, a friend's wisdom, a word of encouragement or happy medical news about your liver child. Make it a point to look for those tiny grains of happiness, contentment and thankfulness among the chaff in life. Treat every day as if it were extraordinary. Because, really, isn't life just that?

HAPPY BIRTHDAY, ARIANNA!

2011-05-06T07:27:00.000-07:00

My oldest daughter turns 9 today. Some days I lament how quickly my kids are growing but I know God has great things awaiting them as they grow in faith and maturity. It's my privilege to be their father and to guide them on this journey.

All Quiet on the Homefront...but Prayers Needed for Others

2011-04-13T07:48:00.000-07:00

We returned from our vacation to Medford, Oregon Sunday night, stopping by Children's for Sarah's labs to save a trip. At her Tuesday clinic visit, everything went smoothly. A couple numbers increased a little but nothing alarming. Dr. Murray decided to leave Sarah's tac dosage at .5mg twice a day for the time being since she appears to fighting off EBV again. Our next clinic isn't scheduled until July - let's see if we can make it the full three months between appointments this time!

While things are going well for us, others are need of prayer. Chloe received her 2nd transplant late last week and while early indications are positive, I'm sure her family would appreciate your prayers. Then there is little Annabelle Phillips who hasn't left the hospital since she was born last July due to heart issues that necessitated a heart transplant. She waited three months for her heart and late last week, received her gift! Her mother says the heart is working well but she may have an infection, so please remember Annabelle daily. It can be a long road post-transplant and I expect even more difficult for a heart recipient.

When Life Throws You Unexpected Disaster

2011-03-13T20:22:00.000-07:00

The earthquake and subsequent tsunami that wreaked havoc in Japan this week has me thinking a lot about life in general. It's so easy to see the devastation and simply tune it out. After all, we're treated to daily doses of bad news: murder, kidnappings, starvation, war, and disaster. We've become such a visual culture that many of us have become numb to the pain around us, whether close to home or in a far off country.

My mind had already been pondering our lives a bit more following the New Zealand earthquake. It jars us to see "modern" countries with strong, earthquake resistant buildings suffer such destruction as occurred there. This isn't Haiti or Indonesia where thousands can be killed in only a few moments. But an 8.9 earthquake? It's difficult to fathom the power of something that large.

As many of my readers know - especially those who've followed our adventure and our dear liver famiies - our lives were forever changed over two years ago. In an instant. Our baby girl was diagnosed with biliary atresia; a disease we'd never heard of. But what about those whose lives are changed, far more tragically, in just a moment.

The moment that incredible 8.9 earthquake subsided, a tsunami of incredible force slammed into Japan. Even many of those who'd heard the warnings had little time to evacuate and escape the tidal wave's deadly force. All that they knew, maybe even their own lives, disappeared in just a few minutes. How do you deal with the loss of your home, your city, your loved ones? How do you prepare for such a thing?

Only God can comfort you during such destruction and pain. There is no other. And while your question of why it happened might never be answered, the one thing you have to hold onto in that moment is Jesus. Everything else of earthly value is gone. But He will never desert you.

I like to think I'm prepared to die any day. If I get in a fatal car crash or something like that, I'm ready to go home. But what about being at work when a massive earthquake strikes the Seattle region? What if I can't make it home or contact my loved ones? What if I survive and they don't? Am I ready for that? Are any of us?

You've seen me write on Facebook and on this blog how important it is to express your love, your gratefulness, your heart, to those most precious to you. Each day. Every day. Because when the day comes when you or they are no longer on this earth to talk to, will you hold close the treasured memories of those last words or the regret of things left unsaid?

One of Those Days

2011-02-28T08:17:00.000-08:00

Happy Monday!

Ok, so it will be one IF we can keep from heading to Children's for yet another liver biopsy. Sarah's temperature hit 101.4 last night but I'm hopeful it will drop today. She is definitely trying to fight off a cold. She's congested with a runny nose and a little fussy. Since she's rarely ever fussy, we know she's not feeling well.

We have some urgent prayer issues today. We learned that a friend associated with liver awareness just found out his wife has a brain tumor the size of a grapefruit. She is scheduled to have surgery tomorrow. Please lift the family up in prayer. This was quite a shock to us.

Keep Austin Wright lifted up in prayer as well. He continues to have off and on issues with his new liver or internal issues. This little guy is such a blessing and possesses such a joyful spirit. Please remember him, his sister Makayla, and his parents, David and Courtney throughout this week.

I learned last week that my job will be eliminated in the coming months and moved back to Wisconsin. It will be another time of adjustment but I'm hopeful new doors will be opened. I've been considering changing careers for awhile and this may be the catalyst for doing exactly that. I've been sitting on whether to complete my bachelor's degree since Sarah's birth and subsequent medical issues. It's likely I'll move forward now (no, for real this time!) after some starts and stops and pursue a degree in the medical field or something health/mental health related. I just can't see myself doing the type of work I've done for the bulk of my working life (customer service/sales support). That may emanate from what I've witnessed through our journey with Sarah but I find myself drawn towards serving those in need, like the liver families we've met.

God knows where the road will take our family but we are excited about the future. May you know His peace and will today and everyday.

Do We Just "Survive"?

2011-02-24T19:00:00.000-08:00

I'm hoping to get back into a regular blogging routine soon. In the meantime, some miscellaneous thoughts crossed my mind in the past few days and I'd like to share them. I've been watching some friends walking through difficult times. Some of our online liver friends have received the gift of a new liver. Most are thriving and it's a blessing to see the little ones restored to health. Others have struggled but are moving in the right direction.

I also follow two families whose little ones are faced with unbelievable challenges. These little ones, Annabelle and Bowen, have serious heart issues. Little Annabelle is a beautiful girl, about seven months old, who hasn't known life outside the hospital. She is on the transplant list for a new heart. Her parents have three other girls. Many of you who've experienced health issues in your family can easily relate to the daily, maybe minute to minute, stress this family is under.

Bowen is a sweet little man who has a rare heart condition called HLHS. He's the son of Matt Hammitt, lead singer of Sanctus Real, one of my favorite bands. The family is gearing up for the 2nd heart surgery in Bowen's young life this coming Monday. If you're not following Matt's blog, you should be. It's incredibly candid and transparent - http://bowensheart.com/. Both these families need our prayers and support.

In light of these desperate situations (and those many of you have experienced), do we consider it a success to just "survive" in our daily lives? Or do we fight through the pain, the frustration, the desperation of our circumstances, reaching for the promise, the encouragement we can find on the other side, by reaching out to others? I'm not trying to ignore honest feelings and pain. Please don't get me wrong. I've walked this road, I'm still walking it, and it's no fun. But in the midst of it, do we miss some of the blessings that could come our way by being too consumed by hopelessness or concern for our kiddos?

Pain is a real part of every life, not just those watching their children battle life-threatening diseases. So many of you are my heroes. You are such role models. Not only do you love your children, facing uncertainty with grace and determination, but you extend an open hand to others, to join them in their own pain journey.

I salute you. Let's continue to lift each other up; to carry those with heavy burdens and loss; to join arms and stand together so that no one feels alone. Together we can accomplish much. To carry a burden alone is too hard.

Back Home after Negative Biopsy Results

2011-02-11T20:02:00.000-08:00

All is well in Kraftland. Patty and Sarah arrived home this afternoon around 4pm. Sarah's labs had improved this morning even without intervention and the biopsy (though late in coming) returned negative, as I suspected they would.

Now we just need to make sure no one catches Katarina's cold. Sigh.

Operation: Thursday Biopsy

2011-02-08T19:43:00.000-08:00

Ok...so you can tell I'm tired of boring blog titles. Time to spice it up a little.

I'd prefer nothing be spiced up when it comes to hospital visits but we just try to roll with the punches. Having officially "struck out" on waiting three months for our next clinic visit (this is our third try and third failure to make it that far), Sarah is set up for another liver biopsy Thursday morning.

The festivities get under way with labs prior to 730, an ultrasound right after and then her biopsy about 915-930. Her AST level is over 300 which has caused some concern. The EBV level came back at 4500. The transplant team is a bit confused about this increase since she is on the minimum dosage of .5mg twice per day. Her immune system should be awake enough to do a better job of fighting it off. The only time she's been on a lower dosage is when we had the adventure during her last rejection adventure.

We appreciate your continued prayers. We're covered for childcare which is a major blessing. Just hoping the hospital stay is one night.

So Much for Three Months...and some Thoughts

2011-02-07T10:11:00.000-08:00

That's three months between clinic or any other visit to Children's (besides labs). Not going to happen. Patty took Sarah for her monthly labs last night and, yes, you guessed it, her numbers have risen. Probably enough to warrant a liver biopsy though we still need to confirm that with Dr. Horslen.

This has become old hat for us and we try to keep things in perspective. While this entire exercise complicates our lives for a few days, like getting kids to and from school; figuring out where they need to stay if a hospital stay is needed - this is a reality we live with and we are grateful.

Grateful, you say? Yes. Our dear liver friend, Austin Wright, has been in-house at a Navy hospital and then UCLA for six weeks. We rejoice with his family that he received his new liver (via a loving uncle) but then there was some bile leaks. Through it all, he's been a trooper.

Or our dear little friend, Chloe Chaput, who may or may not be looking at the possibility of a 2nd liver transplant. Remember these two families in your prayers. They could both use a long break from hospital visits themselves.

When I say I'm grateful, I mean it. Things could be so much worse. We still have Sarah - full of life and mischief, laughing, running, talking. Isn't that what it's all about?

My New Writing Blog

2011-01-26T06:28:00.000-08:00

A quick note: for those of you interested in my writing pursuits, I've started a blog devoted to entirely to writing with a little parenting thrown in, from time to time. Please hop on over to the blog and follow me! I would appreciate it and if you could spread the word, that would be great.

http://swingsandkeyboards.blogspot.com/

Cruise Control

2011-01-20T15:53:00.000-08:00

The blog has been quiet because, well, things with Sarah have been quiet. All is well in the Kraft household for the moment, and hopefully that continues for many months. Sarah had some virus that made all her fingernails peel but besides saying "owie" and continually pointing them out to us, they didn't seem to bother her.

At the last clinic visit on Jan 11th they cleared her, once again, for 3 months between clinics. We take her once a month for labs and as long as the numbers are okay, we won't have to see the docs until April - which, coincidentally will be her 2 year transplant anniversary. It would be cool if we could reach that milestone without any issues.

Moving Forward in 2011

2011-01-03T14:27:00.000-08:00

I hope everyone had a truly wonderful Christmas and New Year's. I know it was a great time for my family and provided some quality down time. After getting our Wii connected a couple of days ago, I'm sure our house will never be the same. We've never owned a gaming system before and I've never even played games on the new-fangled systems out there. Our first weekend with it was a hoot and I'm looking forward to many more fun times playing with the kids.

While it's difficult to believe another year has arrived, I'm optimistic about what 2011 brings. On the personal side, I'm hoping for a little more normal in our "new" normal as far as Sarah's liver goes. A few less hospital trips and biopsies would be welcome.

I'm humbled to watch my children grow, year by year, into wonderful people. I'm looking to continue to focus on leading by example and instructing them through the life of Jesus and the Bible. They really are amazing kids if I do say so myself.

I'm going to focus more on set date nights with Patty, dedicating the time necessary to nurture the most important relationship apart from God. I'm looking forward to engaging in a Bible study with two friends for accountability and growth.

You know I couldn't go an entire post without mentioning my writing. This fire has been fueled the past three months to the tune of 75,000 written words. One manuscript is complete (less the editing "ring of fire" I will now be passing through) and I've nearly completed half of the second novel. My goals are modest - continue to write at least 25,000 words per month and complete three more novels this year. I'm going to begin querying in March and hopefully can land at least a smidge of interest from agents or editors at the two or three writers conferences this year. When December rolls around, I'd like to say that an agent has offered me representation.

What about you? What are your dreams, goals or expectations for 2011? Think lofty, but also be realistic.

ACK! Strep is in the House

2010-12-14T07:19:00.000-08:00

Here's hoping that you all had a wonderful Thankgiving and are enjoying the Christmas season.

As for us, 2/6 of the Kraft household has strep throat. Fun times! Right now Patty and Caleb are on anti-biotics and I have a sore throat coming on. The three girls haven't shown symptoms yet but it'll be hard for them to avoid it since strep is so contagious. Still, we are praying they miss this round. I'm just hoping everyone is okay by Christmas.

Other than that, Patty and Sarah returned home last Friday afternoon. Our weekly lab visits have resumed so we will be headed down Wed night for those.

May you all be blessed this Christmas.

Acute Liver Rejection? Going once, going twice...

2010-12-07T12:09:00.000-08:00

I just spoke with Patty and Dr. Horslen is 99% sure Sarah is having acute liver rejection. This isn't completely a surprise. She has been off her anti-rejection med for several weeks now, in order to fight off the EBV. From what Dr. Horslen has said, they are more concerned with the EBV, and what it can do/cause, so they would rather eliminate that and deal with a rejection if it comes.

The biopsy could come back tomorrow and show negative (PLEASE!) but Patty and Sarah are going to be admitted for at least tonight and then tomorrow will reveal if its going to be the full meal deal of 4 days.

Sure, it's frustrating and I would be lying if I said it wasn't. What bugs me the most is that tonight is Katarina's first Christmas concert as part of her preschool class and Patty will be missing it. This is when I need a blasted video camera! Guess I'll have to add that to my Christmas list.

Thanks for your continued prayers. Patty is feeling a little bit under the weather and is exhausted. Please lift her up and that Sarah would not be fussy during her stay at Children's.

Merry-Go-Round

2010-12-06T20:22:00.000-08:00

So I'm the one who actually gets the call this afternoon from Marsha in transplant clinic that Sarah will need another biopsy (yes, I know, hard to believe, huh?) Tuesday morning. It appears the EBV has been vanquished because now her liver numbers have risen - AST 356, ALT and GGT in the 100s.

Our tired girls, Patty and Sarah, head down very early for a 730 ultrasound appt followed by an 11am biopsy. In all likelihood they will head back home in the evening to await biopsy results which won't come back until probably noon on Wednesday.

To say we are a bit "finished" with all these tests is an understatement. Sarah's been poked and prodded in the past few weeks more than she has been in a long time and the continual up and down, bad news, good news has worn us all down.

Still, we're optimistic that the biopsy will come back negative. They plan to being tacrolimus again Tuesday night and if necessary, prednisone on Wednesday, IF there is a acute rejection. Again, we're just praying for NO four day hospital stay. We'd like to make it through the holidays without one if possible.

We would be nowhere without your support and you are all so appreciated.

A Very Brief Update

2010-12-03T09:03:00.000-08:00

Sarah's EBV level has decreased to 95 according to her last lab results. Patty will take her again Sunday so we can know by Tuesday night if they have truly reached the "negative" level. In the meantime, the docs had originally prescribed her valcyte to help ward off the EBV but since that is now so low they have taken her off that med. She is still not taking tacrolimus so basically there is nothing external to fight the viral stuff or rejection.

I have to admit I'm a bit hesitant to not have Sarah on SOMETHING but according to Dr. Reyes, this is the best avenue to take until they can verify the EBV has been eliminated. They would then place her back on tac next week.

Your prayers for Sarah's health to not be compromised further during this short stretch would be appreciated. She seems to be feeling better but continues to cough intermittently.

All Clear!

2010-11-29T18:09:00.000-08:00

We finally heard back regarding Sarah's biopsy results, thanks to Patty's continual calls and Marsha badgering the lab.

She's all clear! It's nothing but sometime of viral infection or reaction to the meds they put her on for the EBV. We're all relieved. Sarah has clinic tomorrow and they will likely put her back on tacrolimus, her anti-rejection med.

Thanks everyone for your continued prayers and care.

Thankfulness...and awaiting more biopsy results

2010-11-25T20:39:00.000-08:00

I started to write a blog entry about all the things I was thankful for yesterday but the document was accidentally deleted. Instead of attempting to recapture some of the words, I'll keep it short and sweet.

I'm thankful for my wife, Patty, an incredible woman who makes this life of adventure worthwhile. Without her, it would be a dull and lonely amusement ride. You're the glue that keeps us all partially sane amidst continual insanity and chaos.

I'm thankful for the four blessings God has given us: Arianna, Caleb, Katarina and Sarah. They have been resilient time and time again in the face of adversity. I cherish each one of them for the gifts God has imparted to them.

I'm thankful for both sets of parents, who have been available without question in time of need. It's a blessing for our kids to know their grandparents and share precious memories.

I'm thankful for the Body of Christ whose face has shown the brilliance of our Savior time and again in the constant turmoil of our lives the past two years. We are so grateful it's difficult to put into words.

I'm thankful for God unlocking the talent of writing within me. It has released so much from my life and has been a balm as I walk through Sarah's health issues.

I'm thankful for the writers I've met the past two years who have become dear friends; and for the friends, both near and far, who have shared their hearts, concerns and hurts through the years.

I'm thankful for our other family: those who have children with liver issues. These liver families have become part of our own as we share in rejoicing amid triumphs and crying in times of trials. You are precious to us. Some of you have become very close to our family and we dearly love you. (I think you know who you are!)

----------

Sarah update:
Tuesday was clinic day and fortunately the snow had subsided enough to allow Patty to safely travel to and from Seattle Children's. Because the rash on her body and face had gotten so out of control, they took a chest x-ray. Then Marsha, our transplant coordinator, at the urging of the main doctor ordered a biopsy of the skin on her back. Sarah was able to get right in for that, partially due to the weather, I'm sure. So again we wait...probably until the Monday. Why a skin biopsy you ask? Apparently some of these rashes can simply attributed to the viruses she is attempting to fight off and will eventually go away as the EBV dissipates. However, there is also something called graft vs host. While this primarily occurs in bone marrow transplant recipients it has a 15% chance of occurring in a solid organ transplant recipient.

Graft vs host as we understand it is where the antibodies from the new liver attack the host body instead of the immune system attacking the liver. It's wild stuff but the doc was concerned enough to order the biopsy. As always your prayers are appreciated.

Happy Thanksgiving, all!

SNOW DAY!

2010-11-23T08:33:00.000-08:00

A welcome dose of snow yesterday for the Kraft family. Received just around four inches or so and enjoyed lots of play time outside even with 27 degree temps. Woke up this morning to 14 degrees. Yowser! This was Sarah's first experience playing in the snow and she loved it. It was Katarina's first time to enjoy it as she was 2 years old when we had our big snowstorms in 2008. Even with my bad back I had fun although I paid for it overnight.

Friday Follow-up on Sarah

2010-11-19T12:30:00.000-08:00

Ok, so far the liver biopsy still has not come back. They normally take 24 hours so it's a bit past that but based on Dr. Horslen's comments, I wouldn't anticipate the news being bad.

Patty said that Sarah's EBV is down to 1600 (as opposed to the 26,000 last week) and that they are not concerned about rejection, likely because the immune system is so busy warding off the EBV. Her liver labs have also improved so that is encouraging. Finally, Dr. Horslen commented that Sarah is probably just battling a viral infection which would explain the inflated EBV numbers.

Both Sarah and Patty are pretty worn down as they were awakened quite a bit during the night. Sarah has already nodded off three times today which is very unusual for her. Patty told me the little girl hasn't even wanted to walk around the floor which is odd. To me, that means she finally got the chance to rest (instead of chase or be chased by her siblings) and her body is trying hard to recover.

If anything changes, I will let you know. For now, we still expect them to return home tomorrow (best case).

A Writing Break: Mission #1 Accomplished - The First Draft

2010-11-19T04:44:00.000-08:00

I did it. I really did it. I wrote a book, 80,000 words of it. I still can't believe I'm saying that. I wrote a book. Wow. It's not that I am so amazing - "Wow, that Kirk Kraft guy is pretty awesome - it's that after struggling for many years to find a rhythm in my writing life, it happened.

Since the beginning of October I've written over 44,000 words. Writing has finally become a daily habit like shaving or eating. I'm thankful God has allowed me to be more productive than at any point in my life. It's not just the novel but my other writing as well.

It's true I haven't sold ANYTHING yet, and I might never do so. I'm not looking for fortune or fame. My goal is three-fold: to glorify God by using the talents He has given me; bringing a little joy to people's lives; and, writing the stories I need to tell.

If only a select group of friends, family and other writers read my work, I would be good with that. Do I desire to make at least a little money in this venture? Sure. I'd be lying if I told you otherwise but I'm also realistic about the publishing industry.

While I'm excited to finish the book (did I already mention I'm stoked?), I realize most first draft are, well, crap! As many good writers will tell you, the first draft is the easy part. Then you need to let your 'baby' sit awhile. THEN, comes the difficult part: tearing that puppy apart. Looking on the story with a critical eye and change the things that don't work. Some writers completely rewrite their novel, the entire thing.

I wanted to take a break in the midst of our craziness with Sarah to tell you that even in the darkest times, there are splinters of light shining through. My writing has been one of those things for me.

LIKE SAND THROUGH THE HOURGLASS…

2010-11-17T18:32:00.000-08:00

Some of you may not get that reference to the “Days of Our Lives” soap opera. I hate to break out such a reference but geez, the days of OUR lives can be far more riveting. I want to begin by saying that our life is not all gloom and doom. We share a lot of joy and laughter in our home. More often than not, we’re living as close to a normal life as possible when you have a transplant child.

Sarah visited Children’s for follow-up labs today and they weren’t what we wanted to hear but were half-expected:

Scoop #1 – There are outward signs the EBV infection is not going away. Sarah has had this ever-increasing rash on her face and Patty said her poor little lips are so cracked they’re bleeding each morning when she wakes up. Rash is one of the signs that EBV is not leaving the body quietly. Sarah also hasn’t been able to shake a cough and has been waking up multiple times during the night crying out. Another sign EBV is causing trouble.

Scoop #2 – Sarah’s liver labs have jumped slightly since the docs lowered her tac dosage to .5mg daily. Still, there is always the concern of rejection and with the EBV present, things are that much worse.

On tap: Patty and Sarah trek back down to Children’s early Thursday for 7am labs, followed by an ultrasound at 730 and liver biopsy at 915. Maybe we can call this the Carnival of Tests. Sounds so much better than “battery” of tests, don’t you think? The biopsy will also be tested for lymphoma in the liver. There’s that OTHER ‘L’ word.

Once the carnival is finished, they will admit Sarah for a 2 day viral treatment to combat the EBV. Depending on what else comes back on the labs, as in acute rejection, the stay could be as long as 4 days – our customary stay time at the luxurious Seattle Children’s resort.

This comes at a bad time for me (is there ever a GOOD time?), as we are short-staffed at work and I need to be there 10 hours Thursday and 12 hours (at least) Friday. If you could pray for my mental faculties, the ability to focus amidst our chaos, I would appreciate it.

It goes without saying that Sarah and Patty need your prayers while at Children’s. As frustrating as this rollercoaster ride can be, if Sarah comes out of this with the EBV gone and no liver damage, I will be exceedingly thrilled.

A happy reminder: Earlier this afternoon it hit me that today was the 2 year anniversary of Sarah’s Kasai surgery when she was two months old. My how time flies!

The CT Scan was clean!

2010-11-12T09:45:00.000-08:00

Most of you have heard by now either via email or always reliable Facebook that Sarah's CT scan returned clean for lymphoma. (Her daddy exhales a major breath of relief). The EBV is still an issue but the reduced tac dosage should remedy that pretty quickly. Sarah's still pretty congested and coughing intermittently, even though they tested her oxygen level at 99% on Thursday. If it continues, we may need to visit an ENT to check for swollen lymphnodes in her head.

Thanks for all the prayer and support. You all are amazing.

Skyrocketing EBV count = CT scan for Lymphoma

2010-11-10T09:53:00.000-08:00

Just spoke with Patty and Sarah's EBV has skyrocketed to 26,000. Marsha told Patty to reduce tac level to .5mg and to plan on a long day at Children's tomorrow. Sarah is scheduled for CT scan at 1045am, so no food or drink after 7am. I always feel so badly for her when she has to go so long without food and liquid. The procedure won't end until 3pm and she may have to be intubated at some point.

Her breathing really hasn't improved and she has been coughing a lot lately so I can't say that I'm shocked by the EBV number. Still, it's sobering to have your kid going in to check them for cancer.

Please pray for the Sarah and Patty tonight and all day tomorrow. These are tough times on Patty when she is at Children's for these types of tests. If anyone local thinks they can go hang out with her, that would be fabulous.

Elevated EBV

2010-11-09T09:10:00.000-08:00

We received not so good news yesterday. Marsha from Children's called and there had been some snafu in acquiring EBV labs from our pediatrician when Sarah visited about a week and a half ago. Her EBV level is elevated to 4900 which is by far her highest level ever. We had to have labs done this week anyway so Patty took Sarah last night.

Sarah has been sick for awhile and Patty gets really concerned, as we all do, when that is the case. Sarah's tacrolimus was reduced .5mg to 1mg twice a day to allow her immune system to fight off her cold. The good news is that her liver labs still look good. We won't know if the EBV has increased or decreased until at least Thursday. It's a good thing we've been keeping Sarah home from church and the public in general.

Marsha also told Patty the concern is that even without her tonsils and adenoids, which they took out a few months post-transplant, Sarah is still vulnerable to lymphoma. That is one of the reasons they watch the non-liver numbers so closely.

We know so many families out there awaiting the gift of a new liver (Nikki and Darby, to just name two) or who are battling a variety of issues (Olivia). Our prayer is that we all would seek refuge in the presence of the Lord and continue to step out each to live our lives to the fullest. Let's not hold back any love, any care, any thing we could do to brighten someone else's day.

Helpful, Not Hurtful

2010-11-03T15:00:00.000-07:00

Recently, a liver friend of mine was relating an experience on Facebook. She had been really hurt by a careless comment someone had made. If you read the comment as a normal person, you may have thought nothing of it. But if you read it, as this friend and I did, as parents of children with liver disease or transplants it was impossible to interpret it as anything but callous.

This got me thinking about how people who have NOT lived with a liver child or someone else with a compromised immune system can relate to those of us who DO have such children and experiences.

It's true that each one us has different life experiences. Many of us can't imagine circumstances like a child's serious health condition, or a terminally ill loved one. We can ignore those things as long as they're not happening to us. We can even keep them at a distance if a friend experiences them. But should we?

Honestly, Patty and I knew nothing about biliary atresia or that liver disease was so prevalent in infants and toddlers. Nada. Zilch. We're hardly "experts" now, but we've seen through living it what strain, fear, anxiety and uncertainty liver families face each and every day. I'm talking specifically about those still "waiting for the call". We have been keeping tabs on little Nikki Taylor down in California who has been waiting for months for a liver donor. She has reached the point of critical need. She needs a liver now but several potential living donors have backed out for certain reasons. (I'll address this in a future post.)

Nikki and her family, and those like her, are walking a tightrope of hopefulness and caution. The friend I mentioned in the opening has a child waiting for a liver transplant. They are anxiously awaiting the call and are taking precautions to prevent unnecessary infection or exposure to sickness that would prevent surgery should the call come.

Isn't that what a parent should be doing? Watching over their child, their ill child, and keeping danger at bay? It's mind boggling to me that anyone, but especially people who say they are "friends" would make hurtful comments. Really? Have they not considered how this can affect the fragility of a parent's emotions?

Patty and I are blessed with the most incredible support system imaginable. Not once did we receive an unkind word, or an unthinking comment from anyone. So, it's that much harder for me to imagine what it's like for my friend. But I know what she is feeling because I have been there. Let's be helpful not hurtful to those around us, whether they have liver kids or not, but especially if they do.

Words carry an amazing amount of power. Let's be careful how we use them.

Walking along the Write Path

2010-11-03T13:55:00.000-07:00

Some of you may be interested in following the progress of the first draft of my novel. I'm closing in on my 80,000 words and will call it finished at that time. Of course, that doesn't mean I won't cut many words, add many more, or do a painful rewrite at some point.

I've written over 28,000 words since the beginning of October which has somewhat shocked and certainly delighted me. Writing has truly become a habit for me, which was the goal all along. The trick is to maintain this pace and progress; to become a better writer; to ultimately create something people want to read and which speaks to their life or offers food for thought. Something that takes them away from the real world for a moment but which also connects them deeper with that same world.

I'm fully aware that many first novels die a brutal death and end up residing in a drawer, a trunk or a closet somewhere. A good experience, no doubt, but something that simply is not publishable. At the same time, I'm confident that some day a book with my name on it will reside on the shelf of a bookstore. It's not because I desire to be famous or need any validation as a writer. I feel God has called me to write and I will do it to the best of my ability. If all that ever sees the light of day is this blog or the stories I share with family and friends, it will have been worth it.

Possible Cause of Biliary Atresia Discovered?

2010-10-27T12:47:00.000-07:00

I found this interesting article relating to the possible cause of BA. It's a bit different from another suspected cause that relates to genes. It's good to see there is some thorough research going on in this area. We don't know how this would translate into discovering a cure, of course.

http://www.eurekalert.org/pub_releases/2010-10/uocd-biu102610.php

A Good Holding Pattern

2010-10-26T10:36:00.000-07:00

We're into the second full week of no labs or clinic visits for Sarah. Based on her last clinic visit on the 14th, unless something comes up, she will be on the routine of one lab visit per month and clinic visits every THREE months. Suffice it to say, this a huge step for all of us in the right direction. Less is more when it comes to visiting the fine folks at Children's.

One caveat: if Sarah continues to exhibit any flu-like symptoms or other signs of illness, we would have to take her in for labs which could result in a clinic visit and/or biopsy. We are really praying she can go the entire three months with no problems. I don't know what we'll do with ourselves if that happens.

Your continued prayers and support are appreciated. It will be tough to avoid illness as flu season begins but we're hopeful.

Priorities

2010-10-06T21:25:00.000-07:00

Sorry for the long absence. I miss you, my blog peeps! I've been focusing on, well, priorities. I'm working to get my life better aligned with my priorities, or things that SHOULD be priorities. This includes no brainers like quality time with my wife and kids, as a family, and one-on-one time. It includes placing God above all things since He is the one who makes everything else possible and who has granted me the blessing to have such beautiful people in my life (including all of you.)

One of my priorities, that I have long neglected, because it wasn't practical to include in my life is writing. I first started writing in 3rd grade and wrote pretty regularly - and almost exclusively for myself! - for 20+ years. When I married Patty and started a family, I gave up my writing and packed it away in a box. Yes, even in a nice little box in my brain. I just thought that wasn't going to be a part of my life.

When I started school in September 2006 and began writing for my classes, a little light went off in my brain. it wasn't until June 2008 that I started to recognize it was God telling me I should pick up my writing again. So, I figured, what the heck? If it's really meant to be, I'll be motivated and see progress in the quality of writing. It's not a matter of being published, although, I won't lie, that would be outstanding. It's a matter of being true to my dream and following what the Lord told me. As a kid I imagined myself writing for a living. Somewhere along the line - it's called "life" - I lost sight of that dream.

So in the last two years, I joined a number of writing groups both locally and nationally; I've attended several writing conferences; braved the waters of having my work critiqued; worked on making writing a habit, just like brushing my teeth; and sharing my dream with others. I'm not the most naturally extroverted person but I'm learning it's necessary in the world of writing. If for nothing else, to make friends with other writers for encouragement.

So why am I talking about writing? Because it's one of the priorities in my life I've neglected. But I've made a change and am working to have my life truly reflect my values. I want to spend more time with my kids, instructing them and being there for them. One of the ways I do that is to sit down at our kitchen table with them while they're doing homework. This way I'm readily available to help and encourage them. Sure, I can get some of my own writing done, but I don't make that a priority of the moment. I want them to know my desire is to be intimately involved in their lives. I'm looking for ways my son, Caleb, and I can have more substantial guy time. I want to establish an absolutely mandatory weekly date night with my wife. These are all win-win situations. They'll make me a better dad and husband and my kids and wife will know I truly treasure them.

What are some of the priorities you have left hidden or set aside during stressful times? Or even in your busy daily life?

Sarah is home!

2010-09-24T11:42:00.001-07:00

No hospital stay this time, gang, praise God. Sarah's liver labs are still a bit elevated but apparently not concerning enough to admit her. Naturally, Patty will have to take her yet again for labs early next week but this is a major blessing not to have Sarah admitted.

Biopsy for Sarah

2010-09-21T13:24:00.000-07:00

We received early this morning that Sarah had "flunked" her latest labs. Ok, so I am seeking some levity here! Anyway, her liver numbers have escalated again so a biopsy today is necessary. She should have headed in a few minutes ago, 1pm PST. We won't know the results until tomorrow afternoon but Patty isn't very optimistic that we will avoid a hospital stay. The numbers were high enough she seems to think an acute rejection is likely. We will have to wait and see. I'm hopeful that is not the case as four days in Children's would be a pain in a number of ways.

Thanks in advance for your prayers.

Memories: The Big Bleed

2010-09-20T13:01:00.000-07:00

I'm busy completing an essay for a writing contest and I'm integrating an essay I had submitted for American Baby (which was rejected) with additional segments. I'm busy writing about the event that significantly changes our lives, outside of even the initial diagnosis of biliary atresia and subsequent Kasai surgery. It's the day we discovered what 'varices' really were. It was the day of Sarah's big bleed.

I consider myself very fortunate - though I find myself feeling guilty at times for missing it - for having missed this traumatic episode. I was blissfully at work and a friend was visiting Patty (thank God for Miranda!) the morning of March 3, 2009. I vividly remember receiving a phone message from my dad who had been crying to call him ASAP. Do you ever have those moments when your body tingles all over, and not about happy news? That's how I remember feeling when listening to his message.

The news he had was that Sarah and Patty had just been helo-vac'd from the school not far from our house to Seattle Children's Hospital. The reason was that Sarah had vomited nearly all of the blood in her body on her crib and on Patty. A nurse in the hospital later told Patty a child that small (Sarah was not quite 6 months old) only has enough blood in their body to fill the equivalent of a soda can. Much of it came out in clots and I admire Patty so much for remaining relatively calm in the face of such distress. God most certainly intervened. Our friend, Miranda, called 9-1-1 while trying to shield our then-2-year-old Katarina from seeing Patty come down the stairs with blood all over her. Again, God was amazing. Katarina didn't even try to look, she simply buried her face in Miranda's legs. She never saw a thing.

My dad, who was going to be stopping by a little later to pick up Katarina, felt a nudge (no doubt, again, God!) to come by the house early. He knocked on the door just as Patty was coming down the stairs. He immediately loaded Katarina in his car and shielded her. Meanwhile, the EMT's had arrived and after looking at Sarah, decided they could not afford to take her via ambulance. They would have to take her by helicopter.

I remember my dad describing the scene at the nearby school. When the helicopter arrived, people poured out of the school and nearby homes. It must have been quite a sight. Patty was so focused during this time she doesn't even remember the helicopter ride. She was bent on keeping Sarah conscious and nothing else mattered. There was some discussion of not allowing Patty ride with Sarah, as that was apparently not standard practice. However, the onboard EMT simply told Patty to climb on. If they hadn't, oh man, I hate to think what Patty would have done. You other parents can certainly relate. It was a blessing we didn't have to worry about that.

The doctors and nurses at Seattle Children's have been etched in our hearts (and the helo transport team as well) since that day, as if they weren't already. By the time I reached the hospital later that afternoon, Sarah was quite stable. We didn't find out until the following day that she did have esophagel varices. The spread of those eventually into her stomach, resulted in a very short wait for a new liver. As I've related some on this blog, I sometimes wonder why Sarah received a liver so quickly and others have to wait so long, or don't receive one in time. It's not right for me to feel guilt for something I have no control over. I'm so grateful we have had Sarah with us for these two years.

I won't ever forget that day and that's even moreso for Patty. I wish I could erase all the anguish and fear she felt that day but it's one of those experiences, though we would never in a million years choose to live through, that make us stronger and able to stand alongside others who are now walking that fearful road.

Monday Prayer Requests

2010-09-20T11:27:00.000-07:00

First up, please keep Olivia King in your prayers. She had some major issues with her stent yesterday and had to be rushed to the ER. It appears she is out of the woods but the docs will need to repair her stent and remove part of it that was sucked into her intestines. I'm grateful for this family and this beautiful girl. Thankfully, they were able to attend church yesterday before heading to the hospital. Let's ask God to allow this family some quality time at home and with their friends. They have been on a rough ride and it is encouraging for Olivia to be home.

Second, Patty takes Sarah to Children's tonight for her labs to insure liver numbers haven't increased. We are praying things have normalized and that no biopsy will be necessary once we receive the lab results on Tuesday.

Thanks for your continued faithfulness.

Life After Transplant

2010-09-16T13:23:00.000-07:00

In one week, we celebrate Sarah's 17 month transplant anniversary. It seems so long ago but at the same time it feels like it just happened a month or two ago. Sarah continues to blossom and change. She talks more - with real words - each and every day. She giggles, chases her siblings around and plays with her dolls. Sarah is your normal two year old. Except she is not. She has someone else's liver that has now become her own. Very occasionally we consider Sarah needing another liver down the road. Those thoughts have to remain far behind us. We have four children to raise and the challenge of parenting is enough without wondering day-to-day if Sarah will have the chance for a "normal" and full life. Each day is a gift: that means each day with my wife; with my kids; our parents; and friends. None of us is guaranteed tomorrow so why dwell on the possible? Live in what is possible NOW. And now, there are smiles, laughter, tickling, helping with homework, listening to my older kids read, long walks, great talks with my wife and so many other things.

So has life changed for us? Sure. Before we knew Sarah had biliary atresia, she was just our fourth child. She is still our fourth child, but one given a new lease on life (thank God) with the precious gift of a new liver. But our lives are much the same as before. We have a great family and our time together is dear to all of us.

I have a couple of questions today, for those of you with post-transplant kids:
How have your lives and theirs changed since transplant?
Do you still think daily about where they were pre-transplant?
How long did your child have to wait for liver or other organ?
I would love to hear your thoughts and about anything post-transplant.

Parenting a Liver Child, part 2

2010-09-14T12:00:00.000-07:00

I wanted to follow up on yesterday's blog post. I had originally intended to drive a different road then the one I traveled and wanted to drive down that road today.

How many of us who parent these wonderful liver kids deal with the dilemma of not coddling the sick child? By this I mean, do we unconciously treat our liver kids different from our healthy kids? I know this is a difficult question to answer. Parenting a liver child is not always black and white or cut-and-dried. There are those of us whose kids have a) had the Kasai surgery but are doing well and there is no need for a transplant at this time; b) those who urgently needed and received new livers; and c) those of us who are anticipating (anxiously or otherwise) a transplant for a child dealing with ascites or varices, etc.

It's hard NOT to give an extra dose to the kids in group c. When you daily deal with the thought a liver may not come in time, how else are you supposed to act? But it's not here that I want to dwell. I want to deal more directly with showing an abundance of affection, love and attention to the liver child in group a or b than we may show to our other children.

Has this ever been an issue for those of you with liver kids? I would love to have a discussion about this and hear your thoughts. I don't pretend to have all the answers and I'm still walking through so many different things even though Sarah is doing very well 17 months post-transplant.

The Liver Kids #4: Olivia King

2010-09-14T08:00:00.000-07:00

Here is another installment in the Meet the Liver Kids series. Olivia is a chipper 14-year-old who just received her second liver transplant. She is battling issues with her stent and also has cystic fibrosis. Olivia's mom, Barbara, has been gracious enough to allow me to utilize Olivia's own words from the Friends of Olivia Facebook page. If you don't already follow her progress, please do so. The family really needs your prayers. This has been a continual up and down struggle and they just returned home after a very lengthy hospital stay following transplant.

Now, without further adieu, please meet Olivia King, in her own words:

"My transplant was because I had a genetic disease called CF. And boy was that horrible to learn. It scared my parents but they seemed to be so strong. For years I have been stuck in the hospital because the Liver became a flop and has not worked for 10 years. I had what they call a thrombosis at transplant and caused me to have those awful, horrible bile duct stents. The CF complicated the liver stuff and the liver stuff complicated the CF. So around and around we go.

Not too many people know about CF or even about transplants. I have learned so much over the years that I try to not talk about it. My life is not about my disease, it is about me. In fact, I hate it sometimes when my parents talk about it because people see my sickness and don't see me. But, I do understand that people want to know because like my friend Tyler who has mitochondrial disease, when you first see me you think I look great. You think I am fine. Even my Doctors say that and it just makes me mad because I know how I feel on the inside."

To read further about Olivia go to: Friends of Olivia Info page

Parenting a Liver Child

2010-09-13T16:24:00.000-07:00

For those of us who have the privilege of parenting children with liver diseases, life has taken a decidedly different turn than we could have imagined. I doubt any of us woke up one day and said, "You know what, it would be outstanding if we discovered our child has a life-threatening liver disease." This kind of challenge and excitement we could all do without.

As we have learned, we have no input into caring for a child with biliary atresia or the myriad of other liver diseases. But we do have a choice with how we deal with it and the example we set for our families and friends, and particularly for our other children.

I think I can speak fairly confidently that all liver families have had their days where they thought they were walking this frightening path alone; where we were ready to throw in the towel and surrender; where we kept thinking, "why our child?"; and where we really thought we were at the end of our rope mentally, emotionally and physically. We may have been concerned with what this looks like to our other children or for those close to us. I know I have. It's not so much the image I portray to them but how they see me dealing with the stress, the separation, and if they think they are loved less because so much time is spent with another child.

This is particular difficult for very small children. Our own Katarina was not yet 3 when Sarah was diagnosed with biliary atresia. We spent almost two weeks in the hospital completely away from her and our two older children. The subsequent long hospital stays when my wife was away from home for many days at a time took a visible toll we are all still recovering from. Katarina felt it perhaps more than Caleb or Arianna, though they certainly suffered as well.

My point for this post is three-fold. First of all, never fall for the lie you are alone. We all share life together and we need to let a network of concerned people, whether friends, other families or complete strangers. The "strangers" - other liver families - we have met have blessed us as I have documented before. So, first, get a lifeline. Second, try as best you can to break away from the hospital to spend quality time with your other kids. We failed in this regard before we finally found a routine that worked. Yes, we were emotionally and physically worn, but it is absolutely essential your other children realize how much you love them as well as their sick sibling. Do what you can to explain the illness and why you have to be with their brother or sister. Just love on them the best you can.

Lastly, know there are others right where you are and who understand what you are going through. We may be dealing with different liver diseases and degrees of urgency, but we have all lived through learning there was an illness that was threatening our child's well-being. Live your life, seek help, love one another and get time away. It's imperative each parent gets a break from the daily grind of hospital life. There is too much at stake not to do so.

HAPPY 2ND BIRTHDAY, SARAH ANN!

2010-09-10T07:14:00.000-07:00

It's hard to believe but today is Sarah's birthday. Where does the time go? It seems like not so long ago she was battling bleeds and in dire need of a liver transplant. Today, you would never know she even HAD a transplant. Her health has been phenomenal lately and we are very grateful. She continues to grow like a weed, chase her siblings around and flash her trademark smile & charm.

We are blessed with four of the greatest kids around. Sarah's siblings, Arianna, Caleb and Katarina, love her and each other greatly. God has given me an incredible family and I'm thankful to be their daddy.

So Far, So Good

2010-09-09T04:13:00.000-07:00

Sarah has been off the prednisone for over a week and is doing very well. She has been more tired than usual the past few days but we found out she is teething some molars so that explains some of it. She also got a nice, semi-deep cut on one of her big toes but there doesn't seem to be an infection, praise God.

Next clinic visit is on the 14th. Hopefully all numbers will remain normal so Patty and I can actually have some time away for our anniversary this year.

Thanks, as always, for your continued prayers. You are a faithful bunch!

Dropping a Couple of Meds

2010-09-01T19:16:00.000-07:00

Sarah is finally being weaned off her prednisone and ursidiol so we are asking for prayers that all will remain stable with her liver and immune system. She has been on the prednisone for some time due to some borderline acute rejections in the past. We're hoping she is able to remain off the steroid for awhile and continues to thrive as she has been doing. Thanks for standing with us. Her next clinic visit is September 14.

The Liver Kids #3: Abby...has flown away

2010-08-31T07:12:00.000-07:00

I learned this morning that one of our liver buddies, Abby, passed away during the night in the arms of her mother. They had urgently been trying to find a new liver for the little sweetheart but one didn't come soon enough. She would have turned 1 next month. Abby was a sweet little girl, so beautiful - and like so many (if not all) of the liver kids, had a wonderful smile and personality. She will be missed.

Please keep Abby's parents and family in your prayers. My previous post seems even more appropriate now. Reach out to those around you and encourage the elderly, the ill, families with seriously ill children and love on your own kids and spouse. We need to be treating each day as a gift and like it's our last here on earth. Don't waste the time you have.

Lord, please comfort those families who are suffering through trials such as Abby's family is now. Whether they be in the hospital, at home, or grieving, may the tears that fall find their way to you. Please embrace these precious people and guide them through these circumstances.

The Love of God in our Liver Family

2010-08-30T15:40:00.000-07:00

We never asked to be part of this community we now affectionately refer to as "Liver Buddies" but we have clearly seen God's hand within this group of families whose children are affected with various liver diseases. It's difficult to say just how much we have been blessed by the fellowship of sharing in other's lives. There have been joyous times as we watch some of our little buddies receive their gifts of new life. There have been the heartbreaking times when we have sat in stunned silence feeling a deep pain in our hearts over the loss of a dear one to these terrible diseases.

Through all of this we have witnessed parents loving their children with abandon; watched as family members and friends do all that is humanly possible to support these families and prolong the life of a seriously ill child; and been encouraged that even in the face of devastating loss, the faith and strength that parents and extended family carry with them through such unbearable trials.

These acts and responses are not some random show of love, kindness and support. These are the faces of God, walking with each one of us as we walk a hill none of us would choose to walk. It is only through His grace that any of us can survive day to day as we watch a child suffer. We have rejoiced when kids have turned the corner, miraculously; when liver labs inexplicably go from disturbingly high to normal; when things look dismal, after months of waiting for a liver, in the darkest hour one arrives and changes a little life.

I know there are liver families out there that may not believe in God and that's all right. I'm not writing to convert anyone. I simply write about what I have witnessed. And I have witnessed God's tender touch on my shoulder. I have witnessed God's compassion in the love of friends who are almost always present during a hospital stay that lasted 52 out of 61 straight days. I have witnessed the comfort only He can provide amidst loss and questions. I have seen the miracle of children too young to know any better than to display a joyful spirit no matter what the circumstances may look like to other people. I have cried for children I never met who have flown to Heaven as if they were my own.

Just as many of us are bound together by our bond of suffering in caring for seriously ill children, so we are bound by love and compassion for each other, and bound together within the arms of Christ.

Never forget the love, dear friends. No matter what you are going through, the opportunity is there to bless someone else, to offer a word of encouragement, a meal or a visit. God help us to walk out the life He has ordained for us. Let the world know us by our love...

The Liver Kids #2: Austin

2010-08-27T19:02:00.000-07:00

Everyone please say hi to Austin Wright, one of our biliary atresia friends. This handsome little guy has been through a lot. His dad is in the military and the family is stationed in southern California. They have had a couple scares with Austin and bleeding issues. He, like so many of our wonderful liver kids, needs a liver sooner than later. Please keep he, his sister, Makayla, and his parents in your prayers.

Is it me or are our liver kids some of the happiest kids in the world? What an amazing testimony to God's goodness and grace in our lives. Sarah's personality never wavered during her many stays. Sure, she had days she was very tired or had been poked enough for about ten people. Through it all she would flash that precious smile and love on people. Some times I think she helped the nurses and docs more than they helped her.

Thank God for these precious children.

A Little Behind

2010-08-24T09:59:00.000-07:00

As you can tell, I am little behind on my promised intro to our little liver friends but promise to get back to that shortly, as well as some brief posts regarding the different types of liver diseases that children acquire. I'm looking forward to the reading just to make myself more knowledgeable, as we have met families with kids suffering from alagille syndrome, Alpha-1 and other things.

Also, I made the difficult decision to forgo college at this time. It just isn't good timing. I still have some things to work through regarding Sarah's illness. A huge thing is getting my priorities back in order as those have been blurred for the past two years.

Thanks for hanging with me. I'm hopeful August will end with a bunch of posts...and then school begins again. Where DID the summer go?

GOOD NEWS for Chloe

2010-08-11T10:14:00.000-07:00

Just a quick update for those of you not on Facebook:

it appears that Chloe is doing extraordinarily well. So well, in fact, that the transplant team has told Gherri that the liver may be fine without the missing artery. As you know, the liver is the most regenerative organ in the body and we are grateful God is blessing this little one. Hopefully there will be NO NEED for another transplant ever. Pretty pumped about this and so happy for Gherri, Lenny and their family.

The Liver Kids: #1 Chloe...and she needs ANOTHER liver

2010-08-08T18:20:00.000-07:00

Chloe is the first of this month's Liver Kids I'll be focusing on. She's a 1 year old little cutie pie from the northeast. She likes to keep her mommy up late and has a great personality. Chloe had been waiting some time for a new liver. This family has been very patient as they lived through two "false starts" - getting the call but finding the liver was not a match. Then, last week they finally received the call of a lifetime. Everything seemed great with the transplant until about 24 hours ago when Chloe had a fever over 101. The docs discovered that there was an artery missing in the new liver, which apparently happens from time to time. This essentially means the liver is failing and 2nd transplant will need to occur immediately.

We love this sweet little girl and her family and are praying that a new donor becomes available immediately. Please join us in this urgent request and remember Chloe and her family in your daily prayers. Even following transplant, these liver kids need our prayers and support.

Baby Jesse is soaring with Angels

2010-08-02T16:44:00.000-07:00

I just learned that one of our precious BA kids, Jesse Alexander, died last night. He was a precious little boy only 11 months old. It appears he contracted a blood infection yesterday that quickly turned to anemia. The doctors did all they could do but could not save the little warrior.

You can read more here - http://www.babyjesse.org/jesse-alexander-left-us/

Please lift the family - mom, Chantal and father, James, in your prayers as often as possible. I'm having a difficult time with this. I so HATE biliary atresia I am finding the words hard to come by. I want to see this disease eradicated and wholeness brought to all the families who have lost precious children.

Kirk

August is "Meet Our Little Liver Friends" Month

2010-07-29T10:32:00.000-07:00

Ok, so that's not an official celebration but it will be on the blog! My goal is to feature two or three kids each week for the entire month of August. I'm thinking that will not be very difficult considering all the families we have met online and in person at Seattle Children's.

Some of the delightful children you will be meeting include:

Olivia - 14 year old battling through her second liver transplant who also has cystic fibrosis.

Austin - a little guy from Southern California who is hanging in there while awaiting a transplant.

Jax - on the other side of a transplant and doing well.

Cora - a dear baby girl we met while at Seattle Children's. Her family has to travel from Montana for their clinic visits and any worrisome issues.

And there is Braeden, our little buddy, who finally returned home following his transplant and some up & down days.

If you don't already have the blog bookmarked or are set up to receive feeds, you will want to do so for August. These kids will charm your socks off!

Time to head back to College...Psych!

2010-07-28T21:38:00.000-07:00

Yes, that's right, friends. After a two-year self-imposed (and wise, considering the circumstances) hiatus from school, I am headed back. I was just accepted to Northwest University LEAP program in Kirkland. LEAP is essentially their bachelor's program for working adults.

It may surprise some of you to learn the degree I will be pursuing: Psychology. I will admit that I haven't really considered that degree until about a month ago. Perhaps God gave me this time off from school to show me what direction I should go. The short version is that through times of contemplation, prayer and reading, I kept coming back to a degree that would serve others and that would be multi-faceted in terms of career options. Psychology is one of those degrees. I feel compelled to pursue something that will benefit others. As I read and listen to other liver families and their struggles & strains, I can't think of a more tangible degree. Additionally, this is a HUGE stretch for me. I will be completely out of my comfort zone with this program which is right where God wants me. I could have easily fallen back on an online political science or business degree. For once in my life, I am sensing clear direction from God (not that He has never provided direction before; its just very clear) and I need to follow it.

In the coming months, I will share my experiences via the blog as it becomes more of a journal of my life. There will still be plenty about Sarah's continuing adventures but also about being a parent, writing and those other beautiful liver kids!

Stay tuned...as if life wasn't interesting enough...strap yourselves in, folks. I'm ready for a wild ride. How about you?

"Yes, I'm Still here", or "Some Thoughts Regarding the Blog"

2010-07-26T16:21:00.000-07:00

I was reminded today that it has been almost a full month since I updated the blog. For us, the saying "no news is good news" applies. Sarah was able to fight off her EBV and all numbers have returned to normal. She has another clinic visit this Thursday but there's no reason (knock on wood) to believe anything distressing will come back from labs.

As I've been swallowed up by preparing for a writer's workshop in August and finally reaching a decision about returning to college and which degree to pursue, I have also been considering where to go with this blog. Patty and I have been closely monitoring many liver families via Facebook for a few months now. It started out with just our local friends we met at Seattle Children's, a few through the Liver Families website and via our liver family "networkers" Cari and Beth.

I'd like to take some time for a month to introduce some of these wonderful children and their families to you. We have been blessed to be part of their lives, even in some small way. Just knowing what other families are going through has energized to pray more and to encourage others that much more. It has also inspired us to continue to get the word out regarding liver diseases. While biliary atresia is the one that strikes a chord closest to home, there are so many others that hit babies and toddlers. I hope to relate some information about each in the coming days as we draw closer to the Seattle Liver Walk for Life on September 26.

I hope you will frequent the blog more often between now and then so you can meet some of the beautiful children: Olivia, Jax, Orlando, Braeden and others. Many you may already know and others you may not. If you are on Facebook, I encourage you to seek out these people. Prayers and encouragement can never be underestimated.

The Opposite of Sunny News

2010-06-30T16:45:00.000-07:00

You know, I'm not normally a pessimist. Yesterday, in fact, things were very rosy as we learned Sarah wouldn't have to visit Seattle Children's for a month. Alas, I should have known something was up. Our ride has rarely been that smooth since her transplant in late April 2009.

So...Patty calls awhile ago and informs me that Sarah's EBV is up over 8000, her highest level ever. There is no immediate need to panic. The transplant team advised a reduction in her tacrolimus - the primary anti-rejection med - and for us to keep an eye on flu-like symptoms. You know, too much sleeping, different kind of stool, runny nose, etc.

If she doesn't show any signs, then the reduced tac dosage should be sufficient to hold out for two weeks - when we would have to get labs again. If she does show signs, then obviously we would...oh, I just can't say it...go into Children's for a brief stay. You can be praying that does NOT happen, and that all goes well for these two weeks. You can also pray for my sanity...and that the darned pessimistic thoughts don't pop up again.

Some Sunny News for June!

2010-06-29T16:25:00.000-07:00

Hi gang,

I just learned that Sarah's labs were so great that she won't need any labs or any clinic visits for an ENTIRE MONTH. I know this may not seem like a huge deal to some people but bear in mind for the vast majority of Sarah's post-transplant life, we have had to visit Children's weekly for blood work and twice a month for clinics. Dr. Horslin wants to keep her on the prednisone for two more weeks and then slowly wean her off of it the following two weeks leading up to the clinic visit next month.

Sarah is also becoming a little chunk. She weighs about 30 pounds but motors around so much that even with the prednisone increasing her appetite she didn't put on any weight between visits.

Praise God for His faithfulness and this much needed respite. It will really seem like a VACATION. We definitely will need to celebrate. I'm thinking maybe a visit to the Olympic Coast is in order. We just need to continue praying there are no hiccups once she is weaned off the prednisone.

Averting a Hospital Stay

2010-05-27T13:05:00.000-07:00

Sarah had her labs drawn again this morning and her important numbers all dropped. Yay, God! So, we will not be enjoying the luxurious accommodations of Seattle Children's Hospital this go-around. Dr. Horslen says we will need to keep her on the regimen of prednisone and have her labs checked out again next week.

Good news - now we can enjoy a three-day weekend together, in our home!

Thanks for the prayers.

More of the Ups and Downs: Life on the Teeter-Totter

2010-05-25T14:44:00.000-07:00

I'm working long hours at my job this week and my energy level is already low. Sarah's labs have spiked up again, though not enough to require a hospital visit. Her AST is 98, ALT is a little over 300 and GGT is 216. We just took her off the Prednisone (steroid) a little over a week ago but have to put her back on that. Her tacrolimus has been raised as well to 2 mg in both the morning and evening. On the one hand, we are grateful the transplant team is just increasing the dosages at this time instead of ordering an ultrasound and biopsy.

Sarah will have to get labs drawn again this week, likely Wednesday night although I'm not sure if the meds will kick in that quickly to impact the results. Just praying we don't need an extra visit to Children's.

If anything God is really teaching us the lesson about living day by day and not worrying about tomorrow. We have to enjoy every minute of every day with Sarah, our children and in our marriage. There are no guarantees in life. We can survive if we relish the joy of each day together. Life is precious, don't take it for granted.

The Disappointment of Getting "the Call"...but not a Liver

2010-05-11T21:30:00.000-07:00

It's been on my heart to tackle this subject for some time. Our family has made some great friends with other families who have children with biliary atresia or other liver diseases. We have been touched by their circumstances and blessed from knowing them.

The most difficult time for any family awaiting transplant is the time leading up to "the call" - when the hospital says they have found a liver that may be a match. It's during this time when the waiting seems unbearable. We can vouch for that and we were fortunate to receive a liver fairly quickly.

There is a time that is even more difficult on parents - after they receive "the call." No exact science can guarantee that the liver which has been found is going to be a perfect match. Many times it is, but many other times it is not. We have watched three families we adore walk through this time recently.

All have gotten the unbelievable call that a liver is finally available for their little one. Braeden was first. It was a go until the hospital called them while the family was on its way and said the liver wouldn't work. Next was baby Chloe. The operation was scheduled and the family was rejoicing only to be shattered by the news this, too, was not the right liver. Finally, dear Austin, who has been experiencing many challenges in recent months, was set to receive his liver today but it also fell through.

I won't begin to question why this happens to some families and not to others. It would be easy to shake our first at God and say, "Don't you love my baby?" but we are all aware that response rings empty. God does love each of our children, infinitely more than we do and yet some families must walk through this desert island exercise.

We love each child so dearly and the parents and siblings just as much. We pray often that the next call they receive will be the one that brings hope and healing not only to their little one but to their hearts as well.

Back Home

2010-04-28T19:49:00.000-07:00

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.

The Road Goes Ever On

2010-04-24T13:20:00.000-07:00

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.

Kirk

Happy 1 yr Transplant Anniversary, Our Sweet Girl

2010-04-23T05:19:00.000-07:00

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

Another Day, Another Biopsy

2010-04-22T20:59:00.000-07:00

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.

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

2010-04-11T21:58:00.000-07:00

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"

Twins with Biliary Atresia need liver transplants NOW

2010-04-03T12:27:00.000-07:00

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.

No Hospital Stay

2010-03-22T06:59:00.001-07:00

Just wanted to update those of you not on Facebook that Sarah's biopsy results came back negative Saturday morning. So a hospital stay was not required this go around. Suffice it to say we were thrilled and were able to have a fun day together Saturday, which included family photos. Sarah must still have labs done every week, but that has been the norm so no change there.

Back and Forth

2010-03-19T06:21:00.000-07:00

I have begun referring to our lives as the "new" normal. This is especially the case when speaking about Sarah's liver issues. She is still having weekly labs taken and visiting the clinic every other week. Well, yesterday her liver numbers crept back up again into the 100-200+ range. Not quite as high as her last episode that was diagnosed as mild acute rejection. Still, when you are a liver transplant recipient, the doctors make it a priority to insure nothing is happening to the liver itself - no damage, no true rejection, etc - and so, they continually take precautionary measures.

So, after Sarah's clinic visit Thursday afternoon, the docs ordered an ultrasound. This afternoon she will have another biopsy. Hopefully, this won't result in an extended stay. I'm even so bold to pray that they will let the girls come home tonight and call us tomorrow with the results. That is unlikely, but a guy can still hope, huh?

Nothing on the Ultrasound

2010-03-04T21:31:00.000-08:00

The good news is nothing showed up on this afternoon's ultrasound. There are several blood tests the transplant team requested, outside the norm, including CMV, CDiff and Rotavirus. We won't know those results until Friday. While Sarah is acting completely normal, they want to be sure there is nothing causing the frequent diarrhea and pale stool.

Of Stool Color and Bile

2010-03-04T15:05:00.000-08:00

Sarah and Patty are at clinic today. Monitoring stool color is one of the things that parents of liver transplant recipients are trained to do, way back even prior to transplant. The color can tell whether there may be something wrong with the flow of bile out of the liver. Since her last hospital visit, Sarah's "pooh" has been very pale, which is 'bad' according to the picture card we have that displays different colors. That's all very interesting to you, I am sure. Stool color. Anyway, she has also had very runny stool (yeah - more fun) and so we were a bit concerned, despite liver labs looking good. Essentially, the pale stool means Sarah is not retaining fat from what she eats.

Patty just notified me the transplant team is going to perform an ultrasound to make sure there is no bile obstruction. They did mention even on our last clinic visit that GI viruses have been going around so it could be something as simple as that.

We will keep you updated with the results later tonight.

Cherish Each Moment

2010-03-01T16:06:00.000-08:00

While we are excited about the opportunity for Sarah and our family to further advocate for liver diseases, our hearts are broken today. In this small world of biliary atresia, we have met many families at Seattle Children’s Hospital and online through Liver Families, Facebook and other avenues. As parents who have experienced firsthand the things that go wrong with a little one’s body when a liver does not function properly, our hearts & eyes have been opened greatly to the struggles and pain other families face. The brave little children who have such cheerful hearts in the face of adversity have strengthened and touched us. Sarah has been a trooper through her whole experience but there are others.

One such little girl is Blair. We began following her on the CaringBridge website a few weeks ago on the tip from our good friend (and mother of a BA baby), Beth. Her mother had signed up to be the donor for transplant and things were looking good, full steam ahead. We learned over the weekend that the first transplant did not take and a second transplant was needed. Sadly, little Blair’s body could not stand the wait between losing the first transplant and gaining a new one. She left our world and returned to the arms of Jesus, a beautiful 10-month-old girl who had charmed many people in her brief time on earth. Her parents’ own faith seems to be carrying them, based on their CaringBridge entry. It is in these difficult times we see the greatest blessings in life. While we may not be able to explain why these things happen and treasured little ones are taken away, we do know that even their brief time with us was inspiring and for a purpose. The love we are able to share with them and that they show us is almost impossible to put into words.

Blair is not the only child that has died from liver disease or a transplant that did not take. There are others and this is why our family is so intent on reaching out to other families living through this difficult time. Whether their child is waiting for liver, intestines or other organs; whether they have already had a successful Kasai and are doing well (praise God, we know a few of them!); or whether, they are in dire need of a transplant TODAY, we feel obligated to offer whatever encouragement and support we can.

I am writing this post today as much to help wash away my own grief for Blair and her family – for her two-year-old brother that probably won’t remember his sister – as to remind all of us how precious life is and how important it is to treat each moment with loved ones and friends as if it were your last moment with them. Cherish the minute, the hour, the day. And begin doing it now.

Our Little Celebrity

2010-03-01T13:56:00.001-08:00

Will wonders never cease? Today, I received an email from the regional American Liver Foundation office asking Sarah to be their 2010 honoree. She would be said honoree for their Flavors of Seattle Gala fundraiser in April and again for the Seattle Walk for Life in September. The girl is a celebrity and doesn't even know it! Or maybe she does.

What a blessing this is for us and it opens the door of opportunity to share more about liver diseases like biliary atresia. God works in mysterious ways.

To find out more about the American Liver Foundation, go to http://www.liverfoundation.org/ and search by your state or region.

Home Again

2010-02-21T20:00:00.000-08:00

Sarah and Patty returned home early Sunday afternoon to much rejoicing as you may expect. The list of meds for Sarah has increased at least for the short term. Since she is on the steroid to restore things to normal, they also have her on rinatidine to help her tummy deal with that. Her tacrolimus has been increased to 1mg at night and her standard .5mg in the morning. They also prescribed a zinc supplement to help with her scalp issues. Thankfully, it seems that problem has already improved and we are grateful for that.

On Tuesday, Sarah and Patty must return to Children's for clinic and labs. I imagine we will maintain the weekly lab routine for now as well. You just never know what to expect but that is one of the things you can depend on with life: the unexpected.

We couldn't maintain a grain of sanity if it weren't for the continued prayers and encouragement we receive from our dear family and friends, and without the grace of God. Thank you for continuing to follow us on this rollercoaster journey.

It's All in the Numbers (part 2) and our love for Children's

2010-02-20T14:59:00.000-08:00

To better aid in seeing what "good" vs "bad" numbers look like, here are Sarah's lab results since Wednesday, night when Patty brought her in for her weekly blood work:

AST - 662 (2/17), 123 (yesterday), 65 (today)

ALT - 926, 543, 353

GGT - 373, 290, 233

The numbers from Wed. night were the highest we have seen since PRE-transplant so it was apparent something was amiss. Fortunately, the transplant staff was all over it and they started the steroids before biopsy confirmation of rejection so we wouldn't have to spend extra time here. Dr. Reyes (see Feb 4 post) had a forlorn look when he visited Patty and Sarah on Thursday. He felt bad because he had lowered the tacrolimus intake which was likely responsible for our return to Children's. It's this kind of concern and care - and the fact the Giraffe floor nurses just love Sarah! - that make us so happy and blessed to live so close to Seattle Children's Hospital. We know there are those in the adjoining neighborhood who opposed their expansion, but for us we could never fathom our lives without these people, some of whom have become dear friends.

It's All in the Numbers: Lab Results

2010-02-20T11:46:00.000-08:00

So my baby girl had a wonderfully blissful night of sleep before awaking shortly before 6am. She ate a waffle breakfast and then proceeded to receive her morning meds. The blood work followed and I have received those results back. I have included some links so you can see what each important lab means in terms of her liver. The three "majors" are AST, ALT and GGT.

On the bright side, all of her labs seem to be retuning to normal thanks to the steroids, which she received at 8:45 this morning. She is still at a high dosage level so they send it through an IV for one hour. Once we go home, we will be substituting a smaller dosage via straight liquid as we do for all the other meds with the exception of the tacrolimus which comes in capsule form.

As I mentioned, here are the links for the major liver labs: AST , ALT and GGT.

So far, we are on target to leave tomorrow. There was some concern on my part about the color of her stool but the on duty doctor said he has seen that in some other patients on that type of steroid.

Mild Rejection Confirmed

2010-02-19T19:15:00.000-08:00

I'm now on duty at Children's to let Patty go home with the kids for the next 24 hrs. We shared some Garlic Jim's pizza there and they headed home. Praying for a great night and wonderful day for them tomorrow.

While we haven't met with the transplant team regarding the liver biopsy it was confirmed about an hour ago that Sarah experienced a mild acute rejection due to lowering her tacrolimus (anti-rejection) medication. She has already had some of the steroids and that will continue - for now, we don't know the duration - along with some other meds to counterbalance that. So, we have a few more meds we have to give daily once we are home but in the long run, it should all work out fine.

The docs have also increased her tacrolimus to the original dosage so we shouldn't see further problems, at least for the time being. One positive side effect from the steroids is that Sarah's cradle cap and itchy scalp seems to be improving. Praying that will continue.

We should know by the end of the day Saturday, based on labs, if we will be coming home Sunday or not. Keep praying Sunday is the day.

Love those Eggs!

2010-02-19T10:17:00.000-08:00

This morning we are waiting for the latest lab results. Sarah was started on the steroid IV medicine at midnight and we still won't know the official biopsy results until late today or this evening. In the mean time she is motoring around the room and hospital with Patty.

The funny part is that this morning she actually ate scrambled eggs for breakfast. None of our other kids (nor Patty) eat eggs. Apparently the steroids increase the appetite (hope they have a LARGE supply of food on hand!) so Sarah will likely be eating very often the next few days.

I will be heading down after I pick up Arianna and Caleb from school to swap out hospital time with Patty. More updates to follow as we hear any news. Thanks for your continued prayers and support.

Liver Biopsy

2010-02-18T14:41:00.000-08:00

Sarah just went in for the liver biopsy. It only takes about twenty minutes but she must stay in recovery for one hour post-op. Its a very simple and non-invasive procedure. Fortunately, she had been sleeping for the past hour so hopefully she will be okay.

We won't know the results for at least 24 hours. Dr. Horslin said we will start Sarah on the steroids to get a head start if it is indeed acute rejection. According to him and the ultrasound tech, it is highly likely that is what we are dealing with.

I will continue to send updates and post to Facebook as well when the news warrants.

Thanks,
Kirk

As Sarah's Liver (and meds) Turns

2010-02-18T08:59:00.000-08:00

Good morning,

We just received a call from Marsha in transplant clinic that Sarah's labs from last night showed high numbers in both the AST and ALT. I won't bore you with the medical names and definitions but those are two of the important liver labs Children's follows at each visit. It may be due to the fact that we reduced her tacrolimus at the last clinic and we are seeing the effects. If you review our last blog entry regarding clinic, you will see what I am talking about.

Ok, just got off the phone with Marsha myself and we have to go TODAY for an ultrasound and biopsy. Please be praying this isn't an acute rejection and that we won't have to stay more than one night (the minimum required). Our family is still struggling getting things back to normal and this won't do the other kids any good.

Kirk

A Little Bit about "Over" Immuno suppression

2010-02-04T18:52:00.000-08:00

Today I had the good fortune to accompany Patty to Sarah's monthly clinic at Children's Hospital. Sarah's liver labs are looking extraordinary so everything appears good on that front. I got to meet the resident comedian, Dr. Reyes, who also happens to be the director of transplant services. He is the man who searches for donors and oversees surgeries at UW and Children's. He was a wealth of information and in our consultation with him today, a few things were noted.

First, Sarah still has very bad cradle cap. It gets so bad she picks at it and her head will bleed from the scratching. She also pulls her hair because of the irritation. This has come and gone but bugs her a lot. Dr. Reyes says that the tacrolimus can cause hair to fall out so that could be one of the reasons for her discomfort. She also gets dry skin around her mouth, no doubt somewhat because of her binky.

Second, the only lab numbers that Dr. Reyes is concerned about all look good. There is one that could indicate bile problems, but that is within the normal range.

Third, because of Sarah's skin issues and due to past experience, Dr. Reyes has suggested lowering the tacrolimus (the anti-rejection drug) to two doses per day three days a week and one dose per day the other four days. This is due to the possibility of an over immunosupression, even at the small dosage Sarah is taking. This type of hypersensitive immune system could be the reason for the scalp and skin issues.

It seems we have entered the stage (or have we really ever left?) of "balancing" things in Sarah's medical regimen. According to Dr. Reyes, about 70% of transplant recipients experience this drug toxicity, or hypersensitive immunosuppression. This can lead to future issues and that is why they pursue such a proactive stance. He admitted that they are right 70/30 in these cases. The 30% they are wrong can lead to liver rejection but he made the point those patients have been treated and returned to stable conditions. Not one has been lost in any way. That was comforting. We have realized from the start of this adventure that our lives (and Sarah's) would never really be "normal" again. A transplanted organ tends to do that.

We just roll with the punches and move on. This was good information to learn and will be helpful moving forward. As a logical being, I like to have all the facts and possible scenarios in front of me so I have an inkling of what to expect. There are always exceptions and surprises but to have some type of clue what is happening is important to me. Then again, maybe that is something God has to work on within me and maybe its because it is my daughter we are talking about.

We aren't concerned because Sarah is doing so well, the staff at Children's is unbelievable and she is in the care of Jesus. Your continued prayers are appreciated. Our lives would be incomplete without your involvement.

God bless,
Kirk

No News is Good News

2010-01-31T13:35:00.000-08:00

While the entire Kraft household has been fighting off colds, Sarah remains great. She had negative EBV for her last lab and she continues to motor around the house and show off her sunny disposition (and dancing prowess).

We have clinic scheduled for this Thursday but don't expect to hear anything new. Sarah eats like a monster somewhat reminiscent Sesame Street's Cookie Monster. Yes, she loves food THAT much.

I just wanted to update everyone who isn't on Facebook and apologize for being lax in updating the blog more frequently.

Kirk

Our God Reigns

2009-12-05T15:53:00.000-08:00

It has been an amazing few minutes. We finally decided to call Children's since we hadn't received a call about the biopsy results at 3pm. The doctor called back and said that, amazingly, Sarah's major labs had dropped closer to normal levels. Then he called back just a few minutes later to tell us that even though the biopsy was not complete yet that there appeared to be no signs of rejection! Is God truly AWESOME or what? So, not only do we not have to worry about immediate issues with Sarah but Patty and her don't have to stay overnight at all. Praise God!

We will have to call the transplant team first thing Monday and probably get labs done again but this is such a HUGE blessing.

Wait and See

2009-12-04T12:27:00.000-08:00

Patty just called and the biopsy went well. We won't know any details until tomorrow afternoon but the good news is that if her labs look good in four hours and there is no internal bleeding - which can sometimes occur - both of them can come home. Then, once we hear about the biopsy we would head back to be admitted if need be. Of course, we are praying that won't be necessary but we are also trying to be realistic. Sometimes it pays off to live so close to Children's!

Biopsy Today

2009-12-04T06:32:00.000-08:00

Sarah will have her biopsy around 11:30. Check-in for pre-op is at 10:30 PST so if you could be praying during that time, it would be appreciated. Generally, this requires an overnight stay and once they have the biopsy results back we will know better if there is any damage to the liver and if a longer stay will be required.

Kirk

More than a Little Noise

2009-12-03T13:33:00.000-08:00

Hi all,

I know it has been some time since I have updated the blog. I had meant to do it in the past week but since there continued to be no news of any substance, I decided to pass.

First, for those of you unaware, we are lifting up little Jordan Gilbert who lives in Ontario, Canada. His new liver is not working and he will need another transplant ASAP. The doctors told the family they could keep him going for two weeks but 11 days have now passed. The average wait for a new liver is generally 2-5 days but that is long past. Please keep this family in your prayers as they deal with this heartwrenching situation. Little Jordan is listed in both the US and Canada but so far no match. He appears to be a little fighter and is hanging in there. If interested in updates, you can access it through the CaringBridge website.

As for little Miss Sarah: things have been going along swimmingly as she puts on weight, rumbles around the house in full walking mode and continues to show off her sparkling personality. However, after her labs this morning prior to her monthly clinic, Patty called me. Her liver numbers have risen (ALT 324, AST 333, GGT 141) sufficiently for the transplant team to be concerned she may now be experiencing acute rejection. This could be attributed at least a little to the fact her tac (the anti-rejection med) is at so low of a dosage. If there are other reasons, those will be forthcoming.

Suffice it to say neither Patty or I were exactly thrilled to hear this news. As it stands right now, Sarah will have an ultrasound at 2pm PST today, followed by her normally scheduled clinic visit. Tomorrow at 1pm she will have a biopsy to get further info. It is very likely she will have to be admitted to Children's for 3-4 days so the team can treat this condition. As more information becomes available, I will email, blog and post to Facebook. The good news is Patty and Sarah will be home tonight before heading back tomorrow.

Please lift Sarah up in prayer, that this will pass quickly and that her liver will continue to function normally. Also, that she will be okay in the hospital for a few days as she is quite the mover and shaker now. Undoubtedly we will have to take her for long walks during her stay. Please pray peace over Patty, me and the other kiddos, but particularly for Patty, that she is at peace.

Thanks for your continued support. It stinks but we knew our lives would be more exciting the day Sarah was diagnosed with biliary atresia. The wild ride continues...

Kirk

October is Liver Awareness Month!

2009-10-01T10:09:00.001-07:00

http://www.liverfoundation.org/chapters/lam2009

Surgery Complete UPDATED 6:57PM

2009-09-21T11:26:00.000-07:00

Just a quick note: surgery was successful. Dr. Inglis ended up taking out both the adenoids and tonsils. We are praying this will alleviate Sarah's breathing problem. He noted she would be here a "couple" days so not sure at this point whether they want to observe her for multiple nights or not. The good news is that Patty can breastfeed her immediately and she will be headed down here to Children's as soon as Sarah has her new room in the Giraffe wing.

Thanks for the prayers and please keep them coming. Patty has been feeling under the weather since yesterday afternoon and not sure if it is allergies or a cold. You know a hospital stay never helps that stuff.

UPDATE: Dr. Horslin stopped by during my stay today and noted that the EBV count was negative! This means no illness remaining in Sarah. Her immune system fought it off! They will be looking at her tonsils and adenoids to see if there was any PTLD present (this is the lymphoma) but hopefully that is not the case. She is really fussy and in a lot of pain according to Patty who took over at 3pm. Please pray for peace and rest for both Patty and Sarah; that Sarah would heal quickly; and that Patty would be overwhelmed by God's grace.

Kirk

Goodbye, Adenoids!

2009-09-19T10:19:00.000-07:00

Hi all,

For those of you not on Facebook, here is the latest:

We met with Dr. Inglis in Otolaryngology yesterday – that’s the ENT dept for those of you not current on your medical lingo! – and they have decided to remove Sarah’s adenoids. The surgery is a 15 minute procedure and is scheduled for Monday at 10:15am. Thankfully we were able to meet with Dr. Inglis on short notice AND get the surgery scheduled. The short of it is that the adenoids can change post-transplant and the EBV (Epstein Barr virus) that Sarah has been fighting can make them swell. This could account for her breathing issues the past few weeks. The reason they would just remove them is that the EBV can also lead to lymphoma if not dealt with expeditiously or if EBV numbers are high. Sarah’s EBV has not been real high but has been going up and down for several weeks.

If you could be praying for successful surgery and that Sarah would not be in too much discomfort as she recovers. The docs say she will have a sore throat for a couple of days and while she will be at Children’s at least until Tuesday, she should be fine otherwise. Please also pray she doesn’t get too frustrated if she has to remain in a hospital bed. Hopefully we will be able to “take her out” to at least walk around the hospital.

I will try to update the blog more often so if you aren’t already following us there, please do. As always, I will also try to send out regular emails and post to Facebook as well.

Thanks for continuing to stand with us as we travel the post-liver transplant highway.

Blessings,
Kirk and Patty

HAPPY BIRTHDAY, BABY GIRL! Sarah turns 1 today

2009-09-10T06:23:00.000-07:00

Happy Birthday to our little princess. She has had a busy first year, that is for certain. The joy she exudes is contagious and has blessed not only our family but others as well.

May God bless your life, little one. We love you. - Mommy, Daddy, Arianna, Caleb and Katarina

Sarah's 1st Birthday Celebration Details

2009-08-30T21:02:00.000-07:00

We are all set for our little sweetie pie's first birthday celebration. Details are below. If you need any further information or need to RSVP, please respond to the blog, shoot one of us a message in Facebook or email/call us! Hope to see you there and thanks for all your prayers and blessings.

Date: September 7 (Labor Day)

Time: approx 10:30am to 5pm

Place: Forest Park in Everett

Location: the covered picnic area right next to the big playground!

What to bring: If you plan on staying with us for awhile, some food and/or drink item would be appreciated to share. I plan on BBQing burgers and hot dogs but if you want something else, I (or my fellow BBQers) will be happy to grill it. But in essence, NOTHING is required to attend. We are just looking forward to celebrating Sarah's birthday and God's blessing upon her young lfe.

Kirk and Patty

Another Clinic, Another Milestone

2009-08-27T15:57:00.000-07:00

We have another good report from Sarah's clinic visit at Children's today. First of all, thank you for praying against sickness. It appears she is just battling a cold and the continued effects of teething. There was no ear infection and her liver numbers dipped only slightly. If they had dropped drastically, we would know something was up.

Our little munchkin (or should I say "porkkin"!) is now at 21 1/3 pounds, up to the 60th percentile for her age. WOO HOO! She has moved up to 25th percentile for height so there is basically progress on all fronts.

She continues to amaze us with how quickly she has learned some baby things since her transplant. She is able to climb into the little toddler chairs we have and to turn around and sit. She can then stand and fall on her knees in order to leave the chair. She is grabbing things and standing regularly, particularly along our stairs and with our stools. It's such a joy to watch her in action. Plus, she motors all over the place while in crawl mode. Sarah is also serving as our resident microbiologist, discovering and observing EVERYTHING, no matter how tiny, that may be on our rug and kitchen floor. And much of those items find their way to her mouth unless we are watching. Yikes! But babies will be babies, and it is all a gift from God.

Kirk

Hopefully, it's nothing but...

2009-08-20T10:56:00.001-07:00

I just wanted to ask for your prayers for Sarah. She has been fighting off a virus, I believe the EMV, and has been having diarrhea more in the last 24 hours. Dr. Murray would like to see her tonight to have labs taken and check her stool to see if there is any other concern.

Thanks in advance for your faithfulness. She has been really sleepy lately as she tries to fight off the bug and while we aren't overly concerned, we would like to avoid any hospital stays if at all possible.

Kirk

Our Little Stair Climber

2009-08-17T21:17:00.000-07:00

Well, a lot can be said for determination. Our little munchkin completed the arduous task of scaling BOTH flights of stairs enroute to the second floor of our home today. She only set foot on the first step this past weekend, but cheered on by her adoring fans (Arianna, Caleb and Katarina) she made it to our landing and then zoomed up to her mommy sitting at the very top of the stairs.

An amazing feat and another example of how far the little sweetheart has come in such a short time.

NK cells linked to liver disease

2009-08-17T12:13:00.000-07:00

Interesting article regarding NK (natural killer) cells and how they may impact the onset of biliary atresia.
Kirk

Sarah's Birthday Celebration

2009-08-04T09:29:00.000-07:00

Good morning, friends!

We wanted to announce the upcoming birthday gathering in celebration of Sarah's birthday next month. Labor Day, September 7, is our target date and all are welcome. If you could RSVP as soon as possible so we can determine the appropriate venue, that would be great. Our desire is to find a place where the kids can freely frolic and play, and where we can BBQ some grub.

Please contact us via any means - leave a comment here, email us, send us a message over Facebook or (if you are in the area) give us a call!

We are looking forward to a wonderful time celebrating the wonder and blessing of Sarah's young life.

Thanks for sharing in this journey.

Kirk and Patty