Called In The Chaos

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  • Journey to GSD9A – Pt 3

    We finally had a confirmed diagnosis and eventually discovered that I was the carrier of GSD9A as well. Since I have XX chromosomes, my other “X” takes over and tells my body what to do.

    It is truly amazing how God created our bodies and the differences between boys and girls. And how we are knitted in our mothers wombs. (Ps. 139:13-14)

    As we began to navigate a life of living with a rare genetic disease, a flood of relief and uncertainty all hit at once. What would it look like for Gideon? Would his childhood/life be “normal”? Would we experience life differently or would things be relativity normal? (Whatever normal is anyway) One thing we were constantly reassured about was that out of all the GSD types, this one was on the better side to have. Easily managed with a high protein, complex carb diet along with a cornstarch therapy.

    My biggest concern going home was that feeding tube. This wasn’t in my plans for a child and it didn’t look like it was coming out anytime soon in the hospital. I had to take classes to know what to do and how to change it or reinsert it if it was accidentally pulled out. Before we were discharged, I had to assist in changing his tube. Let me tell ya that was one of the worst moments for me. But our nursing crew on the 6th floor was phenomenal and so encouraging. My biggest prayer became, God help Gideon eat and we don’t need that feeding tube and I don’t have to change it at home.

    Feeding tube

    Near the end of our stay, my parents came out as they had the trip planned prior to our admission and thankfully we were able to get a room at the Ronald McDonald House. Acelynn loved it with all the animals there. Joel and I were able to take Acee out to the aquarium one afternoon while they got quality time with Gideon.

    As Gideon gained weight and strength, we started talking about his blood sugar issues and what was causing it. To this day we still don’t really know why. His endocrinology team decided that it would best to start Diazoxide. The one major side effect they warned us was – hair growth and we got lots of hair and dark hair. And we had watch the fluid around the heart as that was a potential side effect as well. We decided with our doctors that this was the best route to take and so we began that route. Gideon’s sugars began to get into right order and where they need to be. He also began to wear a continuous glucose monitor (CGM) – it wasn’t my favorite thing as Gideon’s issue was drops not highs which is what CGMs monitor the best. But it was better than the constant pokes for his poor little toes.

    Gideons last “test” before leaving was passing a 12 hour (if i remember correctly) safety fast. He had to prove that he could maintain sugars. And thankfully he passed with flying colors and even ate from a bottle at the end for a bit. Which gave us hope that maybe the feeding tube would come to an end sooner than later. We just had a very stubborn boy.

    After all the hoops, at home things set up, and a safety fast, we were finally discharged and able to come home. Relief was there but so was the unknown of the future. How would life go without the team on the 6th floor. The nurses we loved so much that had become family.

    All we knew to do was to breathe and watch what God would do. We left with a feeding tube but prayed Gideon would start drinking from a bottle. Guess what – within a week he was eating from his bottle. We started seeing more and more wins on the medical front and watching God move.

  • Journey to GSD9A Pt 2

    Gideon had his first airplane and ambulance rides. We finally arrived back at Children’s Hospital Aurora and all the testing began again. And this time I knew it was gonna be for a longer stay. During our time in the emergency department, the doctor told me that they were starting over. Essentially they were throwing out a huge net and seeing what they could find in all the tests. From MRIs to bloodwork and everything in between which meant he was not allowed to eat. Once again IB (Infantile Botulism) was on the table of possibilities. He was a mystery and for a few hours we spent time in the ED until a room was available in the PICU.

    So many times I heard the phrase “Well he is showing a lot of symptoms for IB but its not really adding up”. Due to his hypotonia, the team decided to treat for IB which is a one time dose of less than 10mls and cost around $50,000. Yup. You read that right. Our few days in the PICU went by fairly quickly and more test were run. This is were we first met the metabolic team asking about doing more test and running a genetic tests to give some more clues. Yes, still we didn’t have any ideas of what was causing everything. The phrase “it just doesn’t match all the main symptoms that are typically” with all the working diagnosis that we were given.

    As time went on we decided on doing a genetic test to see if this would bring about any answers that would fully make sense for a diagnosis. They also asked if I would at least do a genetic test to see if whatever came up would be something that was passed down or if its something brand new. In the midst of waiting on these test to come back, Gideon began to have some really low blood sugars and we ended up needing a NG feeding tube. As long as he stayed on the continuous feeds he did okay. When a bolus feed (normal feeding with breaks) was attempted, blood sugars would not hold steady. We tried multiple things all the while waiting on test results.

    Two of the working diagnosis were: Infantile Botulism and Hyperinsulinism. We finally ended up with the results of GSD9a and that it was actually passed down from me. The version that Gideon has lives on the X-Chromosome which is why I never knew and had no symptoms. My other X-Chromosome takes over and tells my body what to do and to produce the enzyme needed to break down the stored Glycogen. Since Gideon only has a single X-Chromosome he has no other source to tell his body what to do. Finally we had answers – sort of. He was still have blood sugar issues and those answers were still a mystery. But at least we had a starting point and knew what direction to head and discharge would be happening sooner rather than later.

    Starting to find his toes again

    We still had a “long” journey to discharge but at least we were on the road to it.

  • Plans turned…hospital adventure?!?

    Last 5 days have been nothing short of an adventure for our household. From plans that were made a month ago to a change of plans because a hospital stay that was unplanned.

    One of my husband’s aunts, who he hasn’t seen for quite a few years, was planning on being in town. Or should I say, at his parents house for the weekend. So we planned a family weekend trip to see family as it would be a mini family reunion. Little did we know, Gideon’s body had other plans.

    Wednesday night after church, Gideon got sick and threw up a ton. Like enough he got a bath and we had to shampoo carpets. He then went to bed. Woke up at 2 am ate and went back to bed til about 730. Thursday morning he decided to throw up again and then refused to eat. Which is a bad combination when one has GSD9a. Working with his Children’s Hospital team, we ended at our local hospital 40 mins away thinking we would get a bag of IV and then head home. Unfortunately, we ended up having to spend the night and it was close to a 24 hr stay.

    Plans change and I am learning quickly – even more than I ever have – that going with the flow is easier said than done at times. I am learning to be okay with where God has placed us currently. I am learning to trust the Lord so much more than I ever thought. Not that I didn’t trust Him, but a deeper into the soul of my being kinda trust and having no Plan B-Z.

    So if you find yourself, like me, having to leave behind the “what I thought it would look like” and looking forward to a big unknown, you are in the right place. Keep walking forward even if it’s hard to see. God’s got it and He knows whats up ahead.

    Monica 🙂

    “Always be full of joy in the Lord. I say it again – REJOICE!” Philippians 4:4

    “Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done.” Philippians 4:6

  • Journey to a GSD9A Diagnosis

    Part 1

    How did we get to this diagnosis? What in the world is Glycogen Storage Disease Type 9A (GSD9A)? Join me in our story and a easy non medically jargon description. And yes this will be a multiple part story. Its a long one and on going.

    What is GSD9A? First, it is a genetic disorder and for our story, it lives on the X Chromosome. Genetically speaking means if it was passed down, it came from me -Mom. In simplest terms, Gideon’s body is missing the code to tell his body how to breakdown stored glycogen in his body. Through testing, he makes less than 0.1 percent of the PhK (Phosphorylase) enzyme that is needed to breakdown that glycogen. Clear as mud?

    Here is the way a doctor explained it to me one day. When a person mows a hay field, a horse can eat the fresh hay no problem. He knows how to eat and what to do. Now the horse wont eat an entire field of hay, so the farmer puts it away and bales it and it is stored in the barn for the horse. When it is time to get the stored bale of hay to use, the farmer wont throw an entire bale – twine and all – to the horse because the horse wont know what to do with it. The horse needs to broken down. And that is what Gideon’s body doesn’t know what to do. Breakdown down the “stored bale of hay” to use for fuel.

    So how did we get here to where our 8 month old has this. Obvious answer, he was born with this condition but we had no idea about it until mid-February when we received that diagnosis.

    Christmas 2024 we had a small flu bug or at least we thought a flu bug hit our house. Both kids had a touch of it, Acelynn had it worse than Gideon. However mid-January 2025, Gideon still wasn’t getting better. He constantly sleepy, his cry went to more of a constant whine, he wasn’t eating as much and all of sudden he was losing trunk muscle tone and before we knew it lost control of his neck.

    First ER visit. He was so lethargic that Sunday.

    We visited our local ER and all his vitals checked out and the only thing they found was elevated liver enzyme levels. They gave us the choice of going to Children’s to get some kind of answers or just watching / monitoring him and hoping it would get better. I was done hoping and wanted answers. I might add he had gone from the almost 40th percentile of weight to the 10th percentile of weight in a month. He wasn’t losing weight, he had stopped gaining weight.

    Trip 1 to Childrens.
    We went to Children’s hospital on Sunday late afternoon where test and blood work and all the things were done. We spent the night in the PICU and discovered a diagnosis of COVID with Infantile Botulism (IB) being thrown around too. For the most part, the doctors and nurses were a little puzzled as his symptoms and how he presented didn’t line up with a typical COVID diagnosis or IB diagnosis. Gideon was monitored for a 2 days and had fluids and began to perk up. So after 48 hrs, we were release and sent home with a “it will just take time to get back to base line”.

    After a week and a half, base line didn’t come and my “mamas gut” said something isn’t right and we need to go back to the doctor. And so we went back to our local doctor and thats when Gideon had his first airplane ride at 5 months old.

  • Welcome to Called in the Chaos

    Hello Friends. Some new and some who have been here for awhile and everyone between. As I begin this journey of story telling and sharing, I figured it would be best to share the why and who behind the page.

    The name is Monica. I live in a small town with my husband Joel and our 2 kids: Acelynn and Gideon. It all started simple and mundane but then life has thrown a few curve balls which we have swung at pretty hard. And we are learning how to hit now.

    The biggest curve ball to date – April 2025 – is a genetic disorder diagnosis for our son called Glycogen Storage Disease Type 9A or GSD9a. In short, he is unable to breakdown stored glycogen for fuel. Essentially he has no true reserve in his body. On top of that, he has been dealing with hyperinsulinism and hypoglycemia. All this was discovered after a month in a hospital. So much more to come with this story and how life looks since receiving that diagnosis.

    Due to our sons diagnosis, I have not gone back to work yet as medically its tough. Currently we are taking 2-3 trips to Children’s Hospital, which they are amazing/phenomenal, a month. So any kinda of “traditional” work would be tough.

    On top of being a wife, mother, at times a nurse, I also work with students and run a youth group. I occasionally fill in and preach at our church.

    Here is what I hope this page will be:
    1. A place for me to talk. To connect with others. Things will be messy. Life is tough. But with community its easier to manage and walk through.
    2. Sharing my favorite things. I love to cook and bake. I love trying new recipes. I love Amazon 🙂
    3. Encouragement. I want to be a place to encourage you with tidbits. Maybe knowing you are not alone with struggles. Laughing at our oops and crying beside our struggles.

    With that said, I want to say welcome. You are seen. You are loved. You mean the world to those around you. And lets have some fun in this journey called life.

    Monica~