Sunday, August 28, 2011

Readers Beware...this one's stinky!

Hahaha! Okay, so this post is totally open and you may not want to continue if you don't have children or prefer not to read about digestive issues...well, let's call it what it is - POOP!

I'm writing this blog hoping that maybe someone who reads this knows someone or has heard of someone having similar issues so that we can find a cure, treatment, something, to help my precious boy. If you have been around us very for long, you quickly find out about Trenton's digestive issues....

It started about 2 weeks after his first birthday...diarrhea, lovely! Being the calm, let's not overreact, kind of Mommy that I am, I watched him closely, stocked up on pedialyte, diaper rash cream, bland foods and gave lots of love. After almost a week of this I called the Pediatrician, they said wait a few more days, (no fever was involved) and let the "virus" run it's course. Went to the Ped several days later after no change in his condition.... Long, very long, story made short...we're still having diarrhea! TWO YEARS LATER!

Here are a few more details... First we tried the BRAT diet, he got a little better, something like 3/day rather than 7/day....then it flared up again. BRAT diet again (+ antibiotic-just in case we were missing something), but this time after several weeks on the diet and significant weight loss (for someone weighing only 25{ish} pounds, off the diet, referral to a Pediatric GI Specialist. After several visits to the GI doc, blood test, diet changes, but still no real change in the digestive issues, the doctor suggests an upper endoscopy and colonoscopy and they were going to take biopsies all the way down his esophagus, some from his stomach and some from his intestine. I'm sure it was waaaaay, more traumatic for me than him, but poor little guy! It's very hard to tell your 15 month old he can't eat for 24+ hours!!! Then to try and "clean him out"....we'll just leave it at that ;)

The colonoscopy showed some abnormal tissue and we were glad to hear it. We needed an answer! They wouldn't know anything for sure until they looked at everything under the microscope and ran some tests on the biopsies. My heart sunk when they told us the biopsies were inconclusive...meaning they didn't show any allergies or genetic problems...I mean I was truly thankful nothing major was found ( I was sitting outside Mark's hospital room the day before his open heart surgery when they called, and didn't need anything serious ), but I was sad that we were back at the starting line again.

Our last visit to the GI doc was just a few weeks ago. The doctor (who we love, trust and feel is really great) said, he doesn't see anything that leads him to believe there is any type of disease in his body just and extremely severe case of toddler diarrhea. He said probably have another year of this (if it is what he thinks it is).

So, basically, on an average day, he is having 3-4 poops a day. He's never had a solid poop in his life - he's 3 years old. He gets what we just call "flare ups" where he will have 7-8 poops a day. His worst day was 2 weeks ago with 11 in just 24 hours. He is gaining weight at a slightly slower but close to fairly normal rate now. The doctor has us giving him benefiber, but in really high doses along with a probiotic every day. We have really increase this lately, but aren't seeing the results that we should or that the doctor expected. He also asked us to keep his diet high in fiber and fat (although T's Pediatrician wants us to really watch his fat because of the genetics of heart disease in our family). He is off of milk (lactose) and sugar. The milk is not so hard, but the sugar...it's in EVERYTHING!!

Up until now, Trenton hasn't even known or had any reason to think that what happens is not normal. I feel terrible for saying this, I guess selfish or whiney, but it is exhausting cleaning up after the mess and potty training has been a nightmare because of the diarrhea. Unfortunately, I think we have opened his eyes to the fact that this is not normal. We have had to resort to pull-ups (totally damaging his excellent potty skills-he was doing great, with TT, but the other comes so quickly...) because I felt nervous going out, there was always a mess!

Almost any given day involves, a couple of changes of clothes, an extra bath or two, and often a mess on the floor, carpet, high chair or car seat. I hope I don't seem upset or selfish about this...there are days when I do feel a bit overwhelmed by the mess but overall, I want to find what is causing this. So far, here are the things we think we've ruled out: milk, red dye, the inability to break down sugar, & glutens. I am trying to get him scheduled for allergy testing just to make sure there isn't something we're missing.

Please pray with us, for us & for his doctor, that we will figure this thing out! If you have any insight that may help us please feel free to pass that along to us~

Wednesday, August 10, 2011

Let The Waters Rise

(Written Wednesday morning ) Song on Pandora this morning fits this day, week, month of my life. Let the waters rise....still I will follow You. There's a raging sea right in front of me, wants to pull me in, bring me to my knees, so let the waters rise if You want them to....I will follow You! A few weeks ago, through a truly miraculous discovery, doctors found a tumor on my Dad's kidney. From what I understand, this type of tumor is almost always, cancer. No close family members have ever been diagnosed with cancer and I found it hard to even say that it appeared my Dad has cancer. Strange feelings for me...I can't imagine what has been running through his mind the past few weeks. Today, he is having surgery and the Dr will be removing the tumor and part of his kidney if necessary.

(Thursday morning) Well, we are praising God for a successful surgery and for a positive outlook for the future! The tumor was sitting on top of the kidney and made removal fairly easy. The Dr had some difficulty with dissecting which blood vessels needed to remain and which they could sever but blood loss was not severe and the Dr was very pleased with it all. Today Dad is up walking and sitting up in a chair, even going to try to get a shower soon. One Dr thought he may be able to go home today, but the other Dr's and Mom & Dad felt it would be best to remain one more day/night just to be sure healing is on the right track and there won't be any complications with his diabetes.

For family & close friends who were unaware of all of this....it started just a couple of weeks ago through a visit to his cardiologist. I won't go through every detail but a "spot" was found on an abdominal ultrasound. A CT scan was done 1 1/2 weeks later that confirmed the spot was a tumor and surgery was scheduled for 2 weeks later (yesterday). It all happened rather quickly and because of the type of tumor, everyone involved wanted it to be removed as quickly as possible. Although this type of tumor often spreads, typically you don't find it anywhere else until it reached about 7cm in size...the one removed from Dad was only 2 cm! I am are so thankful, first to God for His hand on Dad's life but also to the Dr that didn't create hysteria, but also dismiss a complaint and was proactive about figuring out what was going on!

We don't know what the road ahead holds....but then, none of us do. We continue to trust God, give our fears to Him and know that He knows what's best even if it doesn't make sense to us.

"Don't make the mistake of thinking the situation you're in right now is random. God has a purpose for everything that happens in your life." @MaryAlessi

Didn't Know How to LOVE

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