The Endoscopy

Yesterday was Oliver's endoscopy. The doctor was running late, thus we spent a lot of time waiting. We were taken back right away, but just to get a gown on him and get his weight. We were sent back to the waiting room and waiting with a baby who has had nothing to eat for over 12 hours was hard. Eventually we were brought back again and we were told what would happen and spoke briefly with the doctor - his pediatric GI. Jordan and I set off to find something to eat and when returned Oliver was done and in recovery. He was screaming and not happy and very much wanting to nurse. I felt bad that he had been like this for awhile, but they had our cell phone number so they would have called if too much time had passed before we came back. The doctor said that he saw signs of an allergic reaction in the esophagus and would have official results for us in a few days.

This morning he was throwing up and just generally not feeling well, but he seems to be doing much better tonight.

This post was written before Oliver's EoE diagnosis, when we thought that he had Celiac.

We had our appointment with the pediatric gastroenterologist and now the little guy has a endoscopy scheduled for next week. I can't say that I'm nervous about the procedure - I've read so much about it that it just seems normal and okay. Part of me hopes that it comes back positive just so we can know and move on. The other part of me does not want that to be the case because I do not want to have to get the other kids tested. Drawing blood on the little one is one thing, but the older kids will be able to verbalize their pain. I'll have to tell them what's going to happen and they'll be scared.

Oliver has several other allergies to contend with, so that makes figuring out what's exactly going on with him just that much more difficult. Yes, removing wheat from my diet and his seemed to be the key to getting him to gain weight, but he also has a wheat allergy, so wheat is trouble no matter how you look at it!

Afraid to Commit

This post was written before Oliver was diagnosed with EoE, when we thought he had Celiac. I have kept it here because overall it still applies.

I realized yesterday at the store how very afraid I am of all of this. I'm slowly learning, but perhaps not as quickly as I should. One big thing (to me at least) is finding the gluten free flour substitute that tastes good and is a good price. I keep telling my husband that I need to figure that out, but I don't. And I know it's because I'm afraid. Instead of finding a good quality substitute, I just do without most of the time. It works for me now (as I go gluten-free because I am still nursing him), but it is not a long term solution because eventually he will want cookies and sandwiches just like everyone else. I start to see it already as he grabs for his brother's cupcake. I tell myself that it's okay because even if he wasn't celiac I wouldn't let him have it due to his age. But soon that won't be an excuse anymore.

Worry

This post was written before Oliver was diagnosed with EoE, when we thought he had Celiac. I have kept it here because overall it still applies.

A few weeks ago, someone asked me how old my children were. I told them that my middle son was almost three and then he remarked that Oliver appeared to be about eight months old. I told the man that he was actually nine months old, though he was really a week shy of eleven months. I lied again about his age a week later. It was then that I realized my little boy was really little. Too little,perhaps. I would lie because I didn't want to hear any comments about his size, and I was doing it without really even realizing it.

He still weighs what he did nearly six months ago. I feel like there should be something that I should do, but I don't know what it is. Part of me thinks that I shouldn't have him on a gluten free diet so we can get an accurate diagnosis, but I also realize that keeping him on gluten could have just caused him to loose more weight. Though he isn't gaiining, at least he isn't loosing any more.

He goes to the GI in two weeks and until then I will just worry that I'm not doing something right.

I Wish I Knew

This post was written before Oliver was diagnosed with EoE, when we thought he had Celiac. I have kept it here because overall, it still applies.

It's so hard having a sick baby. A baby can't tell you what, if anything, is hurting. With Oliver it seems so much harder. Last night he threw up and today he was just not himself. I wish I knew why. Was the vomiting a fluke or the result of a gluten ingestion? I wish he could tell me if his stomach was hurting. Anytime he cries I wonder. I'm sure it will always be like that to some extent. But if he can tell me if his stomach hurts, then we can try and pinpoint a food that may be causing it. Right now there is just so much I don't know - about his food allergies and his potential celiac - and so much that he can't tell me, that I second guess everything.

Questions

This post was written before Oliver was diagnosed with EoE, when we thought he had Celiac. I have kept it here because overall, it still applies.

I'm counting down the days until Oliver's first birthday, but for all the wrong reasons. That is the day that we have an appointment with a pediatric gastroenterologist (happy birthday to him, huh?). It's eight and a half weeks away. Too long. I have so many questions and I'm sure I have many more that I don't even know I have. The biggest question right now is why he doesn't seem to need a biopsy. Were the blood test results so high that there's no question he really has Celiac? Can he just not afford to still have gluten in his diet and waiting that long would just be too long for him to handle?

Of course there is a lot of information on the internet, but it's so hard to know what to really trust. I can find very little about infants with Celiac. Not a whole lot of "from the trenches" information from parents of Celiac kids. Nothing from anyone in a similar situation as ours. This seems so strange since this is apparently a pretty common disease.

He Has EoE

I wrote this when we thought that celiac disease was Oliver's diagnosis. I am keeping it here in it's entirety (though I changed the title) because I feel it still all very much applies.

During the past several months, I've come to realize the strong link between food and people. We take food to each other, we socialize over dinner at a restaurant, and we celebrate with food. These are scenarios that most people just take for granted. It breaks my heart that my baby boy will always have to pay such close attention to what he eats. A simple social gathering will not always be so simple for him.

I've gone four months without dairy (while nursing my little boy who is allergic to seemingly everything), and now I've added no gluten too. I feel like it's good that I'll know what he faces. I'll be able to tell him that it sucks when you can't have the bun with your hamburger or when you have to pass on the cupcake, but do I really know? After all, there is a light at the end of the tunnel for me, and that's a light that he won't have.

I hope that he will understand that others don't need to always cater to him. If he has to pass up something, it isn't the end of the world. If he has to eat something different, it will be okay. That's a tall order for a little boy, I know.

Most of all, I hope that he will be strong and be able to speak up for himself in such situations and I hope that I will be able to do the same.