Oh, I need sleep

Poor baby has been up crying and vomiting for the past four nights. He is now on Zofran and a medicine for stomach cramping and we are waiting on that to work. He also had to go to a lower rate on his pump, so he is now getting 1 ounce/hour instead of 2 ounces/hour so he has to be hooked up twice as long which is 20 hours. He is taking that better than expected, he is wearing a mini backpack with his pump and bag in it and it is not slowing him down any. Last night, on the zofran he didn't vomit which is good but he still woke up many, many times crying and shaking.
Unfortunantly, we are not sure why his tummy is hurting. We are guessing it is from the venison food trial 2 weeks ago and it just messed his tummy us really bad. Hopefully, he will start to feel better really soon.

My baby

Today was Zach's weigh in for the week...last week he lost a half a pound, and this week he lost another 4 oz so that is almost a pound in 2 weeks. I am so frustrated with all of this, my baby can't keep weight on, he can't eat food, he can't be a normal 19 month old baby. It feels like we are just fighting a neverending battle and we keep losing. We are supposed to keep doing food trials but every food we try he gets diarrhea for a week and loses the little bit of weight we just got him to gain.
It is so difficult fighting this because on the outside he looks and acts normal. He is happy playing and running but his problems are on the inside and sometimes it's hard to explain that he is really sick when he doesn't look sick. But believe me, when you have to change dirty diapers with diarrhea all day and hold down your baby when you clean him because his bottom is so raw  and stay up all night listening to him screaming because his stomach hurts you realize he is sick and food is making him sick.
I try to imagine a life with no food, our daily life is so revolved around food. I try to imagine his birthday's and holidays and sending him to school and it breaks my heart that he can't have normalcy in any of those events. With Halloween coming up, we have been trying to plan how we can let both boys dress up and go trick or treating but have to convince Zach that he is cannot eat anything he gets.
I try not to complain about my sons' illness because it is not worse, I could not imagine having to go through a child with cancer or worse but lately it just feels like my son is not getting better and nobody understands how hard his life is or what it would be like to live in his shoes.

The past week

This past weekend, we went to Topsail Island. It is so pretty and calm there, so far away from the reality of the crazy life here. The kids had a blast, they loved playing in the sand and watching the waves. Unfornately, we all ended up sick with colds but everyone is getting better. I loved our time away with our boys, it's rare to get family time these days.

Zach had his 2 week recheck with his surgeon today at Brenners'. His tube looks great and he is doing so well with it. He doesn't even act like it is there anymore and now since it's been 2 weeks he can finally have a bath again. He doesn't have to go back for 4 months, that's when he teaches me how to change his tube..kinda scary, but I will do anything for him.

Also, on the food trials...we tried egg and he failed, then we tried chicken and so far the chicken has been going good...we call it a pass and then we tried venison and he failed, then we tried asparagus and he will not eat it at all so that sucks since our food choices are so limited to begin with. Right now we are at a stand still, he was eating plain natural popcorn for months now but for the last week he has been really sick and not digesting it so he is off that now too.

Matthew 6:25-33

"Do not be worried about the food and drink you need in order to stay alive... After all, isn't life worth more than food?"

What is CSID?

Sucrase is an enzyme produced in the brush border lining of the small intestine and is responsible for the metabolism of sucrose, a disaccharide commonly known as table sugar, into two component monosaccharides, glucose and fructose, which are then absorbed into the circulation

In the absence of the sucrase enzyme, sucrose cannot be absorbed and passes unchanged into the large intestine

Currently, treatment of CSID consists of lifelong adherence to a sucrose-free diet. As expected, compliance is difficult, especially for a child. Data suggest that even after diagnosis and dietary treatment, major gastrointestinal symptoms persist, and there appears to be a high frequency of decreased weight for height and age in these patients

What is EE?

Eosinophilic (ee oh sin oh fill ick) disorders occur when the body reacts to trigger(s) by creating too many white blood cells (eosinophils) which hang out in inappropriate places creating trouble. White blood cells target germs and other invaders; in eos kids, they recognize normally harmless things as *enemies*.


This has been referred to as "The Mother of All Food Allergies". Kids with eos disorders may or may not also have IgE allergies, but the reality is that their bodies react inappropriately to triggers, which frequently include food(s).
Common symptoms include:


Reflux that does not respond to usual therapy (medicines which stop acid production in the stomach)
Dysphagia (difficulty swallowing)
Food impactions (food gets stuck in the esophagus)
Nausea and Vomiting
Failure to thrive (poor growth, malnutrition, or weight loss) and poor appetite
Abdominal or chest pain
Feeding refusal/intolerance or poor appetite
Difficulty sleeping

EE is a relatively uncommon disorder that doctors may not encounter often. The diagnosis of EE is often delayed, sometimes for years, because of lack of awareness of these disorders.