Tuesday, December 12, 2017

This is His Story, for His Glory

It's been a bit since we updated (HERE), but some days it feels like there really is no "new" news, while we're just living in this cycle of decent days and flare ups...and just crossing our fingers and holding our breath that the bad flare ups don't last too long.  Other times, it's like everything changes in a matter of seconds (or days).

While a lot of what we see between Bryleigh and Will is very similar, and he shows signs of various things we've seen in Bryleigh as he continues to grow, we are doing our very best to look at them separately so that we don't miss anything or ignore obvious signs that could help us with either or both of them.  Because of that, I'll just do a quick update on each of them separately, and get things back up to date with last week when it seems like every thing came at once.

For Bryleigh, we've had a pretty big year.  We made the decision to get some help from a chiropractor, and that has made all the difference in the world.  She has been such a blessing and has helped us gain a whole new world of knowledge, and we have seen SO much growth and change in Bryleigh because of Dr. Heather.  We were able to get a pretty big allergy test done that confirmed 8 allergens we needed to eliminate from Bryleigh's diet/life completely.  This included cane sugar AND stevia, chicken, paprika (think cheese-its, goldfish, hotdogs, and american cheese), mushrooms, and grapes/raisins (which is what started this whole mess 3 years ago to begin with).  We also learned that Bryleigh's spine was not aligned properly, but we weren't sure to what extent and knew x-rays would come at some point.  Even after completely eliminating her allergens and cleaning up her diet, we still see weekly, sometimes daily flare ups for her that vary in their severity.  We are SO grateful to be in a different place than we were this time last year when it took three people to change her diaper, and all four would be in tears by the time it was over.  It was excruciating, and we still see glimpses of that from time to time, but because of the knowledge and tools we have now (from supplements, to creams, to a knowledgeable doctor that is our sounding board for EVERY.THING), these don't last nearly as long.

We've updated on our sweet Will as things have come up for him that are similar to Bryleigh's because honestly, that's just easier to share.  We (sadly) know the drill.  We know what to expect and how to help him, we know what's likely triggering it and what could be coming in the future.  He's got a lot of similarities to what we see in Bryleigh, his just seem to be amplified, came on way younger, and he's much more sensitive.  For example - Bryleigh's first major reaction was to apples.  These were apples we made in to pureed baby food from home and as soon as we realized what it was, we didn't (purposefully) give her apples again.  The reaction cleared up within a few days, and that was that.  With Will, it was simply a minor ingredient in something he was trying for the first time (Puffs), and his reaction was much more intense, and lasted an entire week.  We've seen this in so many other areas as well.

Beyond him showing the same issues that Bryleigh has with food sensitivities and digestion issues, Will has had a few other areas of difficulty.

First of all, his surgery on Wednesday is something we've known was likely coming since he was 6 months. His circumcision didn't heal properly, and we tried a few different options that just did not work to make things any better.  We waited to plan the surgery until we had a follow up with his GI doctor to make sure no scopes were needed at this time, which originally they said were not needed.

One thing we have not shared too openly about on social media is that Will can not eat anything beyond pureed, stage 1 baby foods.  We noticed fairly early on that he had trouble with his bottles, but we had no idea what was really going on at the time.  He stayed on the newborn/infant nipples (even to this day), but we really put it all together as we started to introduce food and he just was not able to swallow much of it.  He would get gagged very easily, and most of the time, it ends with him throwing up pretty much everything in his tummy.  Sometimes it has been by accident (sister sweetly sharing a corner of her cracker) and other times it has been with us very intently trying to get him to work on eating more.  Some days, we are lucky to get him to eat half a jar of sweet potatoes.  On top of the trouble swallowing, he's had some pretty quick reactions to a lot of the foods we've tried.  So overall, it's just been pretty discouraging and hard to even know where to start.

But all of that gets us up to date with where we are now!  His circumcision revision is scheduled for Wednesday and we have an evaluation on Thursday to get set up for feeding therapy. (He has had one evaluation previously, but the weekly therapy that was recommended for him for 6 months was quoted at $600 a week...and that's just a little out of our budget!)  At his 1 year appointment, after some discussion with his pediatrician about what we see when we try to feed him, she recommended that we get a scope done to determine if Will has EoE (eosinophilic esophagitis).  Since we already had a sedation scheduled, we worked VERY hard to get the scope set up during the same procedure.  PRAISE GOD He went before us and worked out every single detail, even when it looked impossible.  - ALL of this played out last week, and while it was very overwhelming, we feel such a peace about it and KNOW that God is in control.

Along with that information for Will, we also got a call for Bryleigh confirming that she does have scoliosis.  This was not a shock to us at all, as you can essentially see/feel the curves in her spine.  At her follow up GI appointment, our doctor ordered a full scoliosis series and we were able to get the X-rays done that day.  We fully believe that these spinal issues are directly related to her GI issues, but we just don't know which is causing which.  We are praying that as we begin to seek treatment (beginning of 2018) for the scoliosis and get things working correctly with her spine, her digestive issues will improve as well.  Her GI doctor expressed some concern about an issue with the spinal cord, so she will likely have an MRI at the beginning of 2018.

I will be with you
when you pass through the waters,
and when you pass through the rivers,
they will not overwhelm you.
You will not be scorched
when you walk through the fire,
and the flame will not burn you.
Is. 43:2

Tuesday, October 3, 2017

Daring to HOPE

Daring to Hope is...
*for those with broken hearts and deep sorrows
*for those who foster, have a heart to foster, and support those that foster
*for those wrestling with God
*for those questioning God’s goodness
*for those that need healing and restoration
*for those needing to trust in the Lord
*for those with a heart for adoption or supporting others through adoption
*for those needing God to provide a way
*for those that feel like you don’t get it right in the parenting department
*for those who know their imperfections and still want to be used by God
*for those who love someone who is hard to love
*for those who need to know other Christians mess up, too
*for those who have/desire the gift of hospitality
*for those who are waiting on “God’s best” for them
*for those that have experienced great loss

I am so thankful that Katie and her girls allowed us back in to their lives. Kisses from Katie challenged me in many ways and in many areas of my life. It encouraged me in callings I have always felt God affirming in my life. I have ALWAYS had a heart for adoption and have prayed for the day we will add to our family in that way, but her first book encouraged me in ways I couldn't have imagined.  It was such beautiful story of a girl on the brink of a new life that was just getting her feet wet in the waters of a life created to serve God in such mighty ways.

But Daring to Hope takes things to a WHOLE. NEW. LEVEL. Katie dives in DEEP to the issues present in her life (and in the world today), and she uses biblical passages, not just single verses, to share what God taught her along her journey. These are passages of scripture that allowed me to see in to my own life and how God is working in me.  She is raw and open in her emotions and so personable in sharing some of the deepest parts of her and her family's stories.

This will be a book I read again and again, and I CAN. NOT. WAIT. for the day I can share Katie's stories with my daughter.

Order your copy HERE!!
*I was blessed to be on the Launch Team with WaterBrook & Multnomah.  I received a copy of a pre-release book, but I make no compensation on books sold. ;)  Just sharing a great book that I pray blesses others as much as it blessed me.

Wednesday, September 13, 2017

THIS is what I have for you...

Tomorrow, I'm starting my 4th year in BSF.  It's also Bryleigh's fourth and Will's second.  I'm starting it this year as a class member and not a leader.  I pray (pray, pray, pray, pray) that God calls me back into leadership with BSF in the future because I absolutely loved my time last year, shepherding women through the study of John and praying with them over various areas and situations of their lives.

Last spring, when it came time to sign our commitment cards for leadership in Romans, I just could NOT sign my card.  At one point, the morning it was due, I even tried to just grab the pen and sign it real quick, and I almost threw up...like literally.  So I put it down and walked away.  And that's when I heard Him clearly, "Carrie, this is not what I have for you."

My heart was racing, and tears poured from my eyes.  I was SO confused.  WHY in the world would THIS not be what God has for me.  Why would serving Him, leading ladies, and bible study NOT be what He has for me?  Honestly, it scared me...if THIS wasn't what He had...then what was?!

I've heard Him say that a few more times over the summer, including as recently as two weeks ago when I came about one phone call away from a full-time, work-from-home job.  Once again, "Carrie, this is not what I have for you."  Once again, I had a difficult conversation that caused my pulse to quicken and my stomach to feel queasy, just like it had last spring when I almost signed that paper.

I spent most of my time since that day searching my little corner of the world for a specific answer as to just WHAT God has for me.  With each time I've heard Him say, "Not this one," I've seen a little bit more of what he DOES have for me illuminated.

And as I sit here on the eve of the first day of BSF, I get it.  I know what it is He has for me: MOTHERHOOD.  He's given me the task of raising, caring for, and enjoying life with two beautiful babes who are absolutely perfectly made in His image.  There are long days, but they are fun days.  There are hard days, but they are good days.  And I will soak in every hour, minute, and second He has given me to just be Momma to these babes, knowing just how fast it goes and how fast they grow.  (In case you're wondering...we're TEN weeks from Thanksgiving, because we're TEN weeks from having a ONE YEAR OLD! I can't.)

Update on the Babes

Bryleigh is doing GREAT.  We watch her like a hawk.  We work SUPER hard to make sure that she is only eating foods that fall on her "approved list," and we stick to her treatment with supplements and vitamins, along with the weekly visits to the chiropractor.  We still find her having some trouble, and we fight off flare ups from time to time, but we feel SO grateful for where she is right now.  And we will do everything we can in our power to fight to keep her there or getting better!

William is also starting to do really well himself!  We've worked with the chiropractor and his GI doctor at Cooks to make sure things keep "moving" for him. He's on a less involved treatment plan of supplements and vitamins than B, and we are currently on two prescriptions from the GI doctor that have really helped improve things for him.  Right now, when we take away those prescriptions, things go right back to where they were...so we'll keep working to find answers and things that help him.

On top of finally seeing (and hearing) what it is He has for me, I have been able to see some other things that God knew way in advance about our schedules this year.  Up until about two weeks ago, I still had time in my schedule to be a momma AND a BSF Leader, although the time committed to leadership is no small amount.

But Will's 9 month well visit didn't quite go as we expected.  Our pediatrician had some concerns about some things she was seeing in Will and answers I was giving to some questions she was asking, which led to an appointment last week with Cook's and an upcoming brain MRI under sedation as a precaution to rule out some things that have really long names attached to them.

His appointment on Friday led to recommended therapy for him for the next 6 months, weekly.  And there it was.  In a matter of seconds, I knew.  I knew that God had been caring for my heart AND my time to prepare us for what He DOES has for us this year.  With all that we've done over the last three years to care for Bryleigh, I just never imagined it would really get any more time consuming than it already was.  And then it did.

We don't really understand all that's gone on over the last few years, nor do we really understand why, but we do know that God is in control, that He is fighting for us, and that His plans for us are for our good and His glory.  We are so grateful for the babes that He has entrusted to us and the lives He has designed for both of them.  We look forward to all that God will do in and through them!

Our precious small group leaders, Derrick and Julee Duke, shared this beautiful song with us on Sunday morning and I have listened to it on repeat since that day.  I just wanted to share a piece of what encourages me in this journey He has us on. I pray it encourages you, too.

Tuesday, August 15, 2017

Be Brave - Whatever Your "Brave" May Be.

Be brave. We made t-shirts with this message, we posted about our brave girl and all the big things she's done over her short lifetime, we plan on making a big painting of it in her room. It's become an anthem for us, and we've caught ourselves so many times NOT being the brave ones.

At the beginning of summer, we asked our small group to pray for us as we walked through the decision of sending Bryleigh back to preschool. 

We signed her up last year to try and work on some social anxiety she was having, and we saw her grow leaps and bounds over the first semester, despite her dad traveling weekly for work, her mom being in the hospital and then on bed rest, and becoming a big sister...not to mention a flare up that lasted nearly the entire semester and left three grown adults (sometimes four) in tears at the end of any given day.

But the second semester seemed to go downhill instead of up, her anxiety came back with a vengeance and getting her to school and church each week was almost impossible. And then came her allergy diagnosis at the very end of the year, which made another year of preschool seem almost impossible. How would she ever handle parties and treats almost daily that she just couldn't have? That's a lot of responsibility to put on a 3.5 year old.

As our small group continued to pray for us, and as we prayed, I began to hear God telling me, "Just trust me, Carrie." How could we cheer and praise God for so many others being brave and we not do the same? I felt like such a hypocrite when I realized how much fear I was holding on to as I paraded around in my pretty yellow shirt telling everyone how brave Bryleigh was, but withholding I sure wasn't!

At that moment, we knew we had to trust God with His plans for her and we began to get B ready for school (completing paperwork, buying cute clothes, occasionally chatting about it with her...and potty training.)

We felt good about the time we had, knowing we had most of the summer to be committed to potty training now that we KNEW she was going to school and this was our final road block.

But instead of it being a road block it ended up being a dead end. It's not "blog worthy" nor do I feel like eloquently describing what it was like to work on potty training Bryleigh, other than it just isn't the right time for her, and no one has to really understand or agree with that.  It sent her in to full on anxiety and a flare up.

When our girl got sick two years ago and we took her in to the pediatrician, we honestly expected a diagnosis that day. Based on what we were telling them, things went in overdrive and lots of things started happening all at once. In those scary early days we begged God for negative test results, praying against parasites, bacterias, infections, etc. We had no idea what was going on, but I knew I didn't want my baby girl to have anything anyone was throwing at us. We were thinking (read: hoping) she had a major stomach bug or virus of some sort that would work its way out of her body, and then life would go back to normal.

I catch myself WISHING one of those had been positive. A quick answer with an exact solution and an end in sight. But call after call led to lots of "negatives" and "abnormal" testing meaning something else was going on. 

We went from thinking things would be normal in a few weeks to thinking it would take a few months, we'd get some actual answers, and then move on with life, back to normal, raising our little exactly as we'd always pictured/planned. (I know, don't tell God your plans...forever learning that one.)

We're two years in with lots of questions still (and thankful for every.single.answer we've received to date), daily ups and downs, and praying that this next year will be a big one of learning for us - learning about our babies' bodies and how to best feed them so that their insides work the way God intended. (And learning how to use a potty, like all the time. 🙄🙃)

So, we ended up making the super difficult decision, and our girl won't be having any "first days" with her friends and teachers this year. I've cried quite a few tears, and I'm sure more are to come, but we just really feel like it's best for her where she is right now. It's no longer about being afraid for her, although we will always be nervous and absolutely cautious, we DO trust Jesus with His care and plan for her. Now it's about what is absolutely best for her: keeping her on track with healing her body, adjusting to new diet restrictions (that are actually only three months along!), and taking a no-pressure approach to potty training.

We are looking forward to seeing all of our friends at BSF on Thursdays, day dates on Tuesdays, and a little home learning during the other days to make sure she stays on track. We will be soaking up time before our "little girl" gets a little bit bigger, and I know her baby brother will be so happy to have his partner in crime around 24/7.

**My sweet friend has known I've been having quite the hard time with all of this, so sad at all my baby will be missing out on this year, and she sent me THIS blog - It absolutely hit home with me, and some of it I could have written word for word myself.  It's a world we live in, and I was thankful to be able to read it from someone else's perspective.**

Monday, June 5, 2017

The Diaper Days

I've started this post before, and never finished it. A post to detail what in the world has gone on since July 4th weekend 2 years ago. I haven't finished before, and I'm still not sure I'll finish it this time, but for now, I'll just share what's on my heart.

What Bryleigh has (and Will seems to have) is not life-threatening.  This is not a fact that is lost on me, nor is it something I ever fail to praise God for. Although it is not life-threatening, it sure as heck has been life-altering.

Our entire world changed two years ago.  Some of it was so subtly and slowly overtime that we didn't even realize. Other changes came in and sort of just exploded in our face.

Two years ago, after a whirlwind weekend at a family wedding, a whole lot of family time, followed by a holiday weekend, Bryleigh started with throwing up and ended with diarrhea. Sure signs of a virus. And for a solid week, that's exactly what I chalked it up to, until we woke up one morning and the diarrhea was so severe, she had filled 7 diapers in a matter of 2.5 to 3 hours. She also had a decent fever going on, so we loaded up and headed to the pediatrician.

She was placed in the "papoose" and a large amount of blood was drawn, followed by a stool sample (thankfully from a diaper she voluntarily gave while we were there), and a urine sample via a catheter. They were looking at everything from E. coli, to a long list of other things (bacterias, etc) and began treating her aggressively for a specific infection just in case that came back positive. It consisted of a shot in each thigh for three days in a row.

All of the testing came back clear with no more answers than we started with, and she still had diarrhea. Severe. For a solid 45 days. It would run down her legs, it would burn her little bottom and leave open sores beyond any diaper rash you can imagine. She was still a "baby" at this point. A very young 18 months old, so she didn't fight us too much, nor could she tell us exactly where the pain was (inside and out).

After exhausting every effort they could and still finding no answers, we were referred over to Cooks GI offices where we had an appointment scheduled for September. 

Over the course of the next year, we made many trips to Cooks Hospital in Fort Worth to work with our GI doctor, and eventually the geneticists as well. We did countless blood draws, urine samples, stool samples, and more. We did a sweat test for Cystic Fibrosis, a colonoscopy/endoscopy, and a Whole Exome test that looked at our chromosomes and every single gene. Most of the test would show abnormalities (elevated levels, blood in stool, sugar in stool/urine, inflammation in intestines, etc) but never enough to lead to actual answers.

One big thing we learned early on was that the cause of the sever diarrhea/mucus was fruit. Certain fruits caused much stronger reactions, but every single fruit causes some type of reaction in Bryleigh, most being immediate. So Bryleigh is no longer allowed to have any type of fruit in her diet (and we can tell when we/someone else slips up in that).

As we made the switch and eliminated the fruit, Bryleigh's problems went from diarrhea to constipation. Bryleigh would try, with no luck, sometimes a hundred times a day. Other times, she would have a little luck, but it would end up leaving her bottom basically burned. We spent weeks at a time doctoring tears in her skin, that sometimes led to infection. Some days we would have to change her diaper 10 to 15 times in a matter of hours. Those were absolutely some of the toughest days of our lives.

I am so thankful for how the mind (and our God) works to protect us.  In the moment, even today, I will ask myself, "How will I ever forget this? How will I ever stop remembering how hard *this* was?" And for the life of me, all of those *thises* I thought would be etched in my mind forever, I can no longer picture. I remember there were hard times. Times we thought we wouldn't make it through another diaper change. And don't get me wrong, I have mental pictures (more like videos) that I wouldn't wish on my worst enemy, but I just don't remember them ALL like I thought I would. 

Things I do remember: Bryleigh BEGGING us to stop because the pain was so excruciating. Holding her hair back as she threw up because she was crying so hard from the pain after a diaper change. Dancing with Bryleigh in my room as I held her in my arms because her bottom hurt so bad she couldn't sit down or walk. Watching her try for hours as she would TRY to get anything out she cute, red faced and tears, but still nothing. Massaging her legs, because they had severe cramps in them after those hours of trying. Laying with her in bed and scratching her back after she woke up at 2 in the morning with night terrors. Dropping her off in her classrooms, screaming and crying because her anxiety was so bad she didn't want to leave us.

At some point we hit our breaking point and we knew we HAD to do something different. We had to at least try. Thanks to an incredible referral from a dear friend, we started working with a new doctor in March of 2017. The first appointment was over an hour of us talking, that's it. That did wonders for my anxiety-ridden toddler. She explained things that were happening to Bryleigh over the past two years, without even ME telling HER all that we had seen. Since then, Bryleigh has warmed up more and more to her, and our doctor has now been able to examine Bryleigh. She's felt the intense tightness in her belly. She's felt the reverse curve in Bryleigh's spine. She's explained the severe pain that Bryleigh feels throughout her body on a daily basis, and THAT is why we are working with her.  We have goals and plans in place that change each week as our doctor is able to reexamine Bryleigh and see how things are going.

We are currently using weekly adjustments and homeopathic supplements to try and heal Bryleigh from the inside. We were also able to test Bryleigh for allergies and found that she is allergic to a number of things including sugar, chicken, and eggs. Our hope is that as we eliminate these things and use the supplements, Bryleigh's body will continue to heal.

We hope and pray for specific answers and an actual diagnosis to come at some point. We hope and pray for complete healing in Bryleigh's body, but if these things don't happen, we know that God is good. We know that He goes before us and He will make a way for us to care for Bryleigh in the best ways possible.

And our sweet little Will. We got pregnant with him the very day we got the results that Bryleigh did NOT have Cystic Fibrosis. We hoped that he would be spared from all of the trouble his sister has had, but from the very beginning we saw the same things in him. Our little guy has severe pain with each poop diaper he has, no matter the consistency, and we continue to see undigested formula and mucus in the majority of his diapers. It is our hope that catching his early will allow for earlier healing in his body and far less pain for him.

I wanted to share our story and the journey we've been on over the past two years, and although it's long, it's still the short version of all we've seen. But more than sharing the details and facts in our story, I want to be sure and share all of the goodness and faithfulness we have seen from God.

We have seen answer after answer come to us out of God's love and mercy: strength in the toughest of times, days that ended with sleep to relieve our babies pain, forgetting the difficult memories, Brad home at the exact right moments, help from our wonderful family, a season where my mom was able to live with us, financial provision, outpouring of love from friends, wonderful doctors and nurses, growth in relationships, deepening of faith and trust in Jesus, and the list could absolutely go on and on.

Some days I wish I had blogged every step of our journey, other days I'm so thankful I did not, but I did want to share as much of our story as I could, and I will do my best to continue to update as we learn more.