Christmas Crazy & A Prayer Request
Merry Christmas and happy 2016, friends! I hope that your holiday season was just as blessed, but perhaps not quite as crazy, as mine has been. But regardless of the crazy factor, everybody knows that Christmastime is my very favorite time of the year. On any given day, if you were to ask me, "What is better than a Christmas tree?", I would wholeheartedly answer, "TWO CHRISTMAS TREES!" And this year that wish came true! But this happened in such a way that, by the end of the debacle, I was the only one who still loved Christmas trees. In the past we have always had real Christmas trees. But anticipating that we would be having a hectic winter, this year we decided to go the "easy" route and give a pre-lit artificial tree a try. As my papa and I decorated the tree on St. Nicholas Eve, all was going splendidly. By the time I settled in for the night I had a dazzlingly beautiful Christmas tree! All was merry and bright. But when I awoke on St. Nicholas Day it was a bit less merry and a lot less bright. Not a single light on our tree was shining. Not to worry, though... With a little "Christmas magic" (and a few hours more work) we found not one but two Christmas trees in our living room!  I told you it was magical! *Magical* may not be the word my parents would use. As a matter of fact, I have a direct quote from my dad. For context I should tell you that we were partially inspired by my Aunt Janet's magnificent artificial tree. However when our Christmas tree emerged from its box, I believe that Papa's exact words were, "It doesn't look like Janet's".

True story. It did not look like Janet's. I even heard my mama say, "I hate Christmas trees." Sometimes I question if I could be an elf adopted and raised by humans! You can take the elf out of the North Pole, but you can't take the North Pole out of the elf. Even more crazy than the Christmas tree fiasco, I had surgery to place a gastrostomy (G tube) just  before Christmas. But I was truly blessed to have a special place to spend my recovery period. On Christmas Eve I was released from the hospital and taken by ambulance to my big sister Krista's house! She and Tim were extremely kind in letting my parents, Alice Eloise, and me stay with them for two whole weeks so that we could celebrate the holidays together. For Alice Eloise, this meant FUN with Cousin Lulu… Perhaps a bit too much fun, but hey, it was Christmas vacation after all!

As for me, our extended stay meant getting better acquainted with Everett, my new baby nephew. It just so happens that my hospital bed was perfect for snuggling. And what could be more healing than snuggles with this sweet little guy? You should see him now; those cheeks have grown exponentially to become irresistibly kissable!

My memory has a tendency to become a bit misty when I am very sick, so I don't remember much about my first couple of weeks post-op. But I imagine that we all enjoyed a lovely Christmas together. Now, don't ask me what happened - I just do not know - But like I said, I am sure it was simply lovely. And what's more, the first time I was able to leave the bedroom was the day of Everett's baptism. It was such a blessing to be a part of my buddy's special day!

As you may (or, more likely, may not) recall, I was originally supposed to have a gastrojejunostomy tube (GJ tube) placed during my recent surgery. Those plans changed slightly, though, as the doctors thought that this particular surgery would be too traumatic for my body. Instead they placed the G tube I have now with the intention of converting it to a GJ tube later. This means that my tube has only one port that leads directly into my stomach, without access to the jejunum. I do believe that this was the right decision, as I have had quite a time recovering from the G tube surgery as it is. Which leads me to - you guessed it - a prayer request. Yes, I know, I have made many such requests lately, but I am hoping they will slow down soon. But today I will be having surgery to place both my GJ tube and a new central line. I am a bit nervous, as last time I had combined procedures I was paralyzed for a week and my right arm never woke up. Today will be better, though. I have my trustworthy anesthesiologist, my personal protocol, an ICU step-down unit with doctors and nurses who will do their best to manage my pain... And I hope that I will also have your prayers! They help the very most. Well friends, I am off to take a long winter's nap. Make a snow angel for me! PS Happy Laura Admiration Week to my cousin Honeypie! I hope that for your special week the rest of the world sees your admirable glimmer the way that I do.
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Merry Christmas, Friends
I wanted to give a quick update. Sarah is still in quite a bit of pain, but slowly improving each day. After a bit of coordination, we were able to have a hospital bed delivered to my house, and Sarah is here with us for Christmas. While this isn't exactly the Christmas celebration we all imagined, we are so thankful to have her and Mom here and to celebrate together. While the gifts didn't really get bought or wrapped this year, we're beyond grateful as we reflect on the true meaning of Christmas and the hope it brings. ❤  Krista
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Update from Krista
Update on my sister: Sarah and my family would really appreciate your continued prayers. The surgery went okay, but she is in terrible pain and the progress is so slow. The doctors have trouble understanding why her body has such a hard time recovering. Also, my sweet mama sounds so tired. Please pray for healing, relief of pain, patience, and perseverance to get through this. S is tough, but she's tired. We're continuing to trust that God's got this. Thanks, friends.
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Treat Every Day Like Christmas – My 2015 and a Prayer Request
Christmastime is here! It is so very magical – And even more so very miraculous. Each day we see how the world is full of chaos, fear, pain, heartbreak... Full of imperfection that only continues to grow. But somehow on Christmas Day, the world seems to stand still in the most perfectly imperfect way. I think perhaps this may just be the feeling of having Jesus squarely in the center of our lives - A focus we should really hold onto everyday.  We can be facing all kinds of trouble, but even when facing such challenges, it isn't so difficult to see the beauty in life when we place our faith in God. 

"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." - John 16:33

2015 reached a new level of crazy for my family and me! And because of that aforementioned craziness, I haven't always been the best at updating my blog. So here is a brief (in Sarah Kate terms) recap of the happenings I have yet to share from my 2015. One of our biggest undertakings was my mama's hip replacement. This was rather intimidating, as Mama is my primary caregiver. And I do require quite a lot care, you see. To be honest, it was difficult to imagine how we could ever pull off this endeavor. But we had to. And we did!  We are immensely grateful for each and every person who helped us. We never could've made it through without every single puzzle piece falling into place at precisely the right moment; God is quite the puzzle master, isn't He? Although it was rough going for a bit, now my mama is feeling so much better. She's a'walking like a supermodel. Well, almost! Then in April and May we had our annual family birthday season. This year I received a very special birthday present. My parents had all of my childhood home videos transferred to digital format so that I can watch them anytime I want to. And as it would turn out, I want to watch them every single day! What a joy it has been to relive those precious memories in a way... Oftentimes I want to Blue Skidoo right into the video! Considering how much has changed over the years, at the same time it is funny to see just how little as changed, too. It would appear that I have always abided by Rule 3 of The Code of the Elves: "The best way to spread Christmas cheer is singing loud for all to hear." My next big adventure took place near the end of July when I needed a new central line. I found myself in a bit of a pickle, as the local surgeons had reservations about doing the surgery themselves. But thankfully my surgeon who transferred to another hospital last year came to the rescue. Dr. Molik is quite the superhero. But nevertheless, it is always rather unnerving walking into a new hospital, relying on specialists who don't even know me to call the shots when complications inevitably arise. But thankfully my concerns proved to be unwarranted. The doctors and nurses were incredible. I woke up following surgery rather distressed and in pain, but the anesthesiologist and PICU doctors were so very diligent, never giving up until my nervous system finally settled down with sedation. From there it was comparatively smooth sailing! My big sister Krista and I had ourselves a hospital slumber party. But shucks, it was probably pretty boring for her, considering I was entirely asleep. We didn't even get around to playing truth or dare. I am such a party pooper. The next day I was in for the most delightful surprise I have ever received in a hospital. Two miniature horses stopped by for a visit! Their names were Bailey and Jasper. I was instantly smitten. The horses' human made me aware of the various ways miniature horses can be trained to be service animals. Some mini horses even sleep in their human's bed! I know what I want for Christmas...

In September I enjoyed one of the most spectacular days of my entire year. To celebrate my mama's birthday we went to the zoo!

As you may have already gathered, I am positively wild about animals. But it is a very rare treat for me to go to the zoo; once I make the car ride there, I am feeling too sick and exhausted to even enjoy my time there. So instead we made a weekend of it, staying at Krista and Tim's house which is just a few minutes away from the zoo. And what a delightful weekend it was!

Alice Eloise had an entirely new adventure on her very first trip to the zoo! Initially she only noticed the many humans who were smiling at her. But upon reaching the giraffe and ostrich exhibit, her ears perked up slightly in such a way that led me to believe she was thinking, "Wow. I have never seen such silly-looking dogs before!"

However,  none of the animals seemed to notice Alice Eloise. That is, until we walked through the sea lion tunnel. A couple of sea lions swam to look at Alice Eloise through the glass. I was happy to see that they seemed to like her, and she liked them too; I didn't want to upset anybody. But then a cranky sea lion swam up to Alice Eloise and growled at her, at which point we left. Not many Midwestern dogs can say they've had an encounter with sea lions!

Not 15 minutes after we returned home from our weekend away, we had to call an ambulance to take me to the emergency room. I had an intestinal obstruction, which ended up making these last few months extraordinarily complicated. The obstruction was removed, but then the week of Thanksgiving I was obstructed once again. We got me through the immediate crisis, but the threat is still ongoing. We needed to develop a preventative plan. And so today I will be having a gastrojejunostomy (GJ) feeding tube placed. Although it has been a long while since I was able to eat, I have never had a feeding tube. Rather, for the past five and a half years I have been reliant on total parenteral nutrition (TPN), meaning I receive all of my nutrition intravenously. TPN was never the plan because it holds some scary risks. Quite simply our bodies were designed to be fed through our GI tract, not through our veins. But a few years ago when it became apparent that I could no longer take in adequate nutrition naturally, an x-ray revealed that the isotope from my gastric emptying study four months prior was still in my system. This finding made it quite clear that my digestive tract paralysis is too extensive for me to tolerate tube feeds as planned, so I have to resort to TPN instead.  It is a blessing that I have made it this far without a feeding tube; it is exceptionally unusual for somebody to be TPN dependent as long as I have without having a tube as well. There are a handful of different types of feeding tubes, each with their own purpose. In fact, not everybody with a feeding tube uses their tube for feeding. My GJ tube will have two ports: one to access my stomach, and the other to access my jejunum. With this tube I will be able to administer medications directly into my intestine to help prevent further obstructions, and I will be able to vent my stomach for relief from other GI symptoms, too.  I am very seldom nervous, but I am actually quite worried about how my body will handle this surgery. So please, please, please remember me in your prayers! Please pray for strength, courage, and optimal pain control. Thank you so very much, friends. Once I have recovered from my GJ tube surgery, I will be up against even more challenges. Firstly I will be needing yet another new central line. And then another unexpected surgery is ahead... We were recently surprised to learn that I need my wisdom teeth removed. Years ago we were told that this would not be an issue for me. But no! They simply came back to bite me a bit later in life. ¯\_(ツ)_/¯ But you know, I do have something positively lovely to look forward to... Christmas, of course! We are hoping to go straight from the hospital to Krista and Tim's house to stay for a few days so that we can enjoy an extended jolly Christmas celebration together. I am pumped! Our family has already received the darlingest Christmas present imaginable: I have a new baby nephew! Krista and Tim are overjoyed to be parents, and Miss Lulu has adjusted beautifully to being a big sister. Our sweet Everett was born on Thanksgiving, and he couldn't have a more appropriate birthday as he is our answer to so very many prayers. Our hearts are as happy as can be! While 2015 was a year of many challenges for me, God has been ever so gracious by balancing out those challenges with incredible blessings. On the tough days, I do just as my friend Buddy the Elf advises: "Treat everyday like Christmas!" In doing so, I am reminded just how much Jesus loves me. Merry Christmas, everybody! See ya next year!

 "May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope." - Romans 15:13

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God Only Knows

Sarah Kate is a very complex girl.  We came to the realization some time ago that there is no one anywhere who can fully understand or explain all of her very complicated medical presentations.  In other words ... God only knows.

But we are very thankful that He, our loving God, has lead Sarah to some truly brave, good people who willingly step outside the box to help.  Because of their efforts, Sarah is resting now, which will allow her to sleep through her very acute post-op pain.   As Sarah’s doctors contemplate how best to address some additional concerns, we would surely appreciate your continued prayers.

In spite of it all, I am pretty certain that Sarah will manage to make merry as we joyfully celebrate Christ’s birth.

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I’ve Got Some Splainin’ to Do – A Prayer Request
Hi friends! So I know I have some splainin' to do. And, believe it or not, I actually have quite a few fun things to share! If only my body would give me the time to rebound from my medical crises enough to do so. You may recall that last time you heard from me, I had an intestinal obstruction. Well, here I am now, obstructed once again. Ruh roh! It has been a long, painful week, but today I am finally having surgery to remove this obstruction. These things are always tough for me, so I would greatly appreciate your prayers for a smooth procedure as well as adequate pain control post-op! I'm looking forward to returning home to celebrate my very favorite time of year… CHRISTMASTIME! I simply love holidays! It has been a year of many challenges, but also one of many blessings. Hopefully I will be able to share all of those joyful silver linings with you very soon!
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Thanks …
We are both relieved and thankful that Sarah’s GI obstruction has been successfully removed.  She is now resting ... (well, more like sedated) which is a huge relief after watching her in such terrible pain today.  Seeing our typically optimistic, cheerful Sarah feeling sadly defeated is tough stuff, but I am pretty certain that very soon I will be tucking her in for the night and she will again be asking me ... “So, what was good about your day, Momma?”  This is her nightly routine, and it continually amazes me as Sarah always goes on to share her own very long list of “good” things. Sweet dreams and many thanks for all the love, support, and prayers.  
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