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.
Sheriff Sarah
Wednesday, April 13, 2011
Sunday, March 13, 2011
When Life Throws You Unexpected Disaster
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 families - 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?
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 families - 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?
Monday, February 28, 2011
One of Those Days
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.
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.
Thursday, February 24, 2011
Do We Just "Survive"?
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.
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.
Friday, February 11, 2011
Back Home after Negative Biopsy Results
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.
Now we just need to make sure no one catches Katarina's cold. Sigh.
Tuesday, February 8, 2011
Operation: Thursday Biopsy
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.
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.
Monday, February 7, 2011
So Much for Three Months...and some Thoughts
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?
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?
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