Lawson's Journey Part 2-October 2017 Still Sick

We have battled the gluten for 5 months. It is everywhere! I look at bread and baked goods with a different eye now. 1/50th of a crumb is hard to avoid unless we are very diligent.  We are down to three restaurants but even those are iffy.  Lawson has his own red dishes, cookware, new toaster and basket in the pantry. I read labels like a professional nutritionist, always on the watch for 'hidden" wheat ingredients that are under different names; (flour, bulgur, semolina, matzo, graham...on and on. 

But yet he is still sick!

His blood work came back great! His Tissue Transglutaminase Antibodies (tTG-IgA) went from over 75 to untraceable! That means he has been good at not ingesting any gluten.

Yet he is still sick.

We went and got him allergy tested...again. 90 skin pricks later, we found out that he is allergic to over 20 different foods. All nuts, beans, watermelon, broccoli, cauliflower, sunflower seeds, sesame, soy, eggs, and more. But they said to not to stop eating any of these because they wanted to see if the allergens showed up in his next set of tests. Yeah, that's not going to work for this momma. I will not feed him something that is causing him pain. We took all of the top 10 out of his diet.

Still sick.

So here we are, another scope, both ends. It's a terrible thing to watch your kid get ready for a colonoscopy. (Not pretty for anyone) But it has been more awful watching your 12 year-old son, lose 17 pounds in 5 months because he violently goes to the bathroom multiple times a day. He misses school, fun activities, and has anxiety whenever leaving the house. I just want him to enjoy being a boy! 

If you know Lawson, he has an infectious smile and an awesome sense of humor. He loves deeply and gets along with most everyone. And apparently he has killer dance moves (recent wedding we went too he killed it)! I have seen these health issues slowly take away some of his free spirit! Some days we just have to keep making inappropriate bathroom jokes just to keep him laughing. Our life revolves around poop...literally. We are hoping these cameras find nothing more serious. But no answer is bad too. It has been almost a 4 year journey!!!!  

Eating to him means pain. 

When the doctor walks out of the operating room, my heart feels like its beating out of my chest and I can't breathe. "Lord, Lord, I cry out. I can't do this! I don't want to hear the news. Have you seen this kid's smile? Hasn't he been through enough since he was born? I feel like such a baby! So many other families are going through worse. But this one is mine and my heart is breaking for him. This has been a year of trials and we still have 5 months to go!"

"Kimberley, we have been here before and my promises are still true. You can do this because no matter what the doctor says, I will be with Lawson and your family. My love never fails. It is a true and perfect love." 

In my head, I start singing the song that I clung to after Lakin's diagnosis;

I Have this Hope by Tenth Avenue North. 

I don't want to live in fear

I want to trust that You are near

Trust Your grace can be seen

In both triumph and tragedy

I have this hope

In the depth of my soul

In the flood or the fire

You're with me and You won't let go

But sometimes my faith feels thin

Like the night will never end

Will You catch every tear

Or will You just leave me here?

So, whatever happens I will not be afraid

Cause You are closer than this breath that I take

You calm the storm when I hear You call my name

I still believe that one day I'll see Your face

"Mr. and Mrs. Lee, Lawson did great! There were no signs of Crohns, Colitis, cancer, infection, or EOE. He is still showing Celiac damage in his upper intestines but it looks better than 3 months ago. There are white blood cells present in his stomach which means he still has inflammation. This could be why he is still struggling. We expect this will resolve itself after he has been gluten free for 6 months to a year. It sometimes takes that long for the gut to heal itself." 

Lawson is still sick but we are CLAIMING healing! He seems to be slowly getting better-ish. But no matter what, this mom, has a HOPE that comes from the DEPTHS of my soul, that in both the triumphs and tragedy HIS GRACE can be seen. 

 "Let us hold tightly without wavering to the hope we affirm, for God can be trusted to keep his promise." Hebrews 10:23

  

Lawson's Journey-May 2017

 I have put off writing this post. I feel if I put it down on paper it will become more real. It seems easier if I just go into survival mode, put blinders on, and press on. Denial can be so strong. Dealing with truth of any kind is painful and exhausting. After endless years of unexplained sickness, allergies, asthma, chronic stomachaches, and numerous tests, Lawson was diagnosed in June with Celiac. Again our world was topsy-turvy, with another life-changing autoimmune disease.  Our lives had to stop, re-calibrate, as we researched and learned about a whole different set of issues other than our daughter's Type 1 Diabetes. I have heard so many people make comments on this whole "Gluten" thing. "It's a phase. It is just a way to spend more money on expensive foods. It's the latest fad. It wasn't around 20 years ago, so I don't believe it. How serious can it really be?" 

The doctor spoke slowly so I could digest it all, "Kimberley, Lawson's intestinal wall is very damaged because he highly allergic to gluten. Every time he eats it, his immune system mounts an attack on this part of his body. Left untreated, Celiac disease can lead to additional serious health problems, like Type I diabetes, multiple sclerosis (MS), anemia, osteoporosis, infertility and miscarriage, neurological conditions like epilepsy and migraines, short stature, and intestinal cancers. There is no cure except total elimination of all gluten from his diet, which is found in many foods, drinks, spices, medicines, and other products. He needs separate dishes, utensils, toaster, and other appliances need to be monitored for cross contamination. 1/50th of a crumb can harm him and cause a reaction. Eating out will be a problem because there are many places who offer gluten free items but they are touched by other gluten containing foods or workers who don't change their gloves. He will have to be very, very careful. There are few APPS that you can download that might help."

WTH???? That was the response in my head. Why didn't the other doctor tell us this 2 years ago? I specifically asked! "Apparently not enough biopsies were taken from his intestines. The damage can be spotty at first so at least 6 sections need to be sampled to get an accurate diagnosis." Seriously!

New toaster? 1/50th of a crumb? Eating out is our way of life! Cross contamination sounds like a science experiment? Did I mention we always eat out? An app? Are you kidding me? No medicine to make it go away? Total elimination? That sounds impossible! I was trying, but failing, to process all this information. It was like a fire hydrant of facts, opened full throttle, and aimed right at my brain. 

Deep breath! Pray! Repeat! Deep breath! Pray! Repeat!

"God, need you here, before I go into full freak out mode! Kind of overwhelmed at this moment. Feeling like a failure for not doing enough before this. Don't think I can handle ONE MORE THING with my kids! Are you kidding me?"

"Kimberley, calm down. Dig deep. I am here. Lawson is mine. I have a plan for his life. You have to trust me in the storms. You can DO THIS! Not because you are strong, but because my power is made perfect in your weakness. You need to lean on me, when you don't understand or grow weary. Sing my praises and know without a shadow of a doubt, that I have your son's name written on the palm of my hand."

"Enter his gates with thanksgiving and his courts with praise; give thanks to him and praise his name. For the Lord is good and his love endures forever; his faithfulness continues through all generations." Psalms 100:4-5