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.