5 Long days....

My little Bryce in pain Sunday night

 It has been awhile since we had a long period of time that Bryce was unable to go 'potty'.....until this week. Over the past five days Bryce's condition began to decline. He experienced allergies getting more severe as each day went on. On Sunday night, we were up all night, terrible allergies and excruciating stomach pain. His crying kept the whole house up and come Monday we laid around all day. I soon realized that we would have no choice but to put him back on his medicine, something I try to avoid at all costs, but his suffering became unbearable. Monday evening he had his first dose and a second again this morning. Though he slept all night last night it was obvious he was still in a lot of pain. Shortly after breakfast he went running to the bathroom, and was able to go!
The strange thing is we have been home since the symptoms started. So did he sneak something? Maybe, but I hadn't noticed it and usually stay on top of him pretty well. Have airborne allergans taken their toll? I am guessing this is the culprit. Our street has been torn up for construction and between the dust and this wonderful Texas weather, no one can stay well.
But for today he is happy again! As usual we will take it day by day. Hopefully it will be another several months before he has to go through this again, or maybe he won't! Hey, a mom can always hope :)

The after,
taken a mere 10 minutes after the previous picture

The before picture

The small circle stickers are for him being able to pee,
the larger fire truck is him pooping, it was his first one in five days :)

Venting...

I sit here at the computer today, having just finished my last post on Bryce and our new pups. I started to scan the internet, as I all too often do, for more information on his condition. Where did it come from? How long have people known about it? Why is there no one else in my area I can discuss it with? And why our child?

Honestly, sometimes I feel quite alone in the struggle. I am fully aware this is selfish on my part. We have a wonderful families, both mine and my husbands. Friends that go out of their way to make sure Bryce has a meal he can eat and enjoy when we go to their houses, birthday parties or on vacation, who quiz me on what new products I am finding so they can have them on hand at their homes as well. Friends and family who will even ask their child to wait on eating something they know is especially painful for Bryce to watch. For the support of these people, I am eternally grateful. However, as his mother, I feel I can never know enough, and I want to know it all. Unfortunatly, not only am I in the dark, it seems as if the doctors are as well.

As I begin to read the stories of other parents with children of similar diseases and of varying severity, I am struck my how lucky we really are. I suppose I am using this post as an outlet for my own emotional struggle through this and am not sure that I will ever even post this, but perhaps I will feel brave one day and do so.

I often search out the keywords involved in Bryce's disease. Eosinophils, eosinophilic, colon, colitis, lymphonodular hyperplasia. Usually to find very little information. Mostly medical studies and reports that as a 30 year old stay at home mom with two years of college, I shouldn't be able to read, but are making more and more sense.  There are a couple of wonderful food allergy sites, centralized around children. There is the American Partnership for Eosinophilic Disorders, MakingContact.org a site based out of the UK helping parents to find others in their situation and there is the Livestrong website which I am convinced covers any and all imaginable diseases. But, more often than not I find a blog, a post, a facebook page of a family struggling to keep their child healthy, happy, sometimes even alive. It's these times when I stop and say a little prayer for the good health that Bryce is currently in. Against my better judgment, I allow myself to think about what could have been had Jim and I not pushed forward with our crusade to diagnose him. Which has led me here.

I often write wonderful stories about Bryce being able to try something new, how he is gaining weight and progressing. But, there is another side to this struggle that while we are fortunate to have largely not experienced, is never far from my mind. I read a story just this morning of a 3 year old little girl who had just started an elemental diet via feeding tube. At breakfast she had told her mother she wanted a new mommy who was nice and that she hated her. I have had my ups and downs with Bryce, there have been many many days that he hasn't liked me much. But how you go through taking away all normal food from a child, knowing it will keep them alive, and try to explain that...I have no idea. I read multiple stories of children suffering from EC along side diseases I have never even heard of. Parents blogging from hospital rooms they had been in for a month.  More often than not, I find in my reading that children suffering also have siblings with varying cases of gastrointestinal issues, mothers having listed them...Son, 4 eosinophilic colitis, daughter 2 eosinophiloc esophogitis, etc...
This is a constant worry of mine. Why are so many cases of Eosinophilic Disorders affecting siblings? I wonder if my other sons with face these. I wonder if there is some genetic marker that my husband and or I are carrying that have led us here.

I am concerned for Bryce's long term health. If the question is posed to a healthcare professional the answer is always something to the effect of... This condition is so rare, that we are not only unsure of the natural history of it but also cannot predict the liklihood of the progression to other gastrointestinal diseases. Long term studies on the similar disease, eosinophilic esophogitis have shown decreasing quality of life, reoccurring symptoms and abnormal behavior socially during a 15 year time span. But such studies do not even exist yet for eosinophilic colitis.

We are currently off of all medications. It is often a struggle to get Bryce to eat and certainly a struggle to maintain a balanced diet that allows him to thrive and gain weight. But we are managing it, will he be more likely to develop Crohn's disease or ulcerative colitis? I would guess based on the condition he has, but there is no proof one way or another. Will his quality of life be adequate? Will he socially thrive? We are doing everything in our power to help him be as 'normal' a kid as possible. And for those of you that know him, the social aspect isn't an issue for him :) Unfortunately our learning experience will be just that for the doctors as well.

For now we can continue to pray that things continually improve or at least stay the same for Bryce. He has not been hospitalized for excessive periods of time. We have often done elimination diets, but he is not totally food intolerant. We have never had to feed him through a tube. I hope as well, that one day soon more will be known about these Eosinophilic Disorders and that in time, children who are suffering far worse than mine can find some peace and a nice hot meal, not sent through a tube.

Our new additions...

Toby and Lex

I am very happy to announce that about a month ago, we welcomed a new addition to the family....Actually....TWO new additions! No, we didn't have twins :) We have adopted two dogs, Toby and Lexy (aka Lex Luthor).

Sometime ago, due to Bryce's allergies, we made the extremely difficult decision to adopt out our Corgi, Bear. Bear had been with us since before our oldest, James, was born. In fact, Bear had been born on our exact wedding anniversary. He was a beloved member of the family and the night he left, I wasn't able to leave our bedroom. Even knowing that he was going to a good family, and it was the right thing for my child, I felt like I was failing him in some way and taking away my children's friend.

Bryce's health improved drastically and immediately. Mere days after his departure, my sister came by the house. At some point in the afternoon she reached in her pocket and found a tissue. She said, I have been here for two hours and have not had to use this on Bryce one time!

Time went by and we acquired fish, a lizard, another lizard, but nothing compared. Without even seriously discussing it, my husband and I slowly began looking into hypoallergenic breeds. We talked to our allergist, did all of our research online, but we were still skeptical. As fate would have it, on a hot Saturday afternoon we sat watching my husband, his dad and brothers race at Texas Motor Speedway. Just down the row from us a woman reached into her bag and pulled out a tiny Yorkie.

The children immediately flocked to it. I found myself telling her of our situation and recent research. She went on to say that she also suffered from severe allergies and had chosen this little guy due to them. Bryce hovered at the back of his group of brothers and cousins. I asked the others to step aside and give Bryce a turn. I said go ahead Bryce, pet the puppy. He looked at me as if I had just slapped him. But after some convincing and assurance that I thought he would be alright, he began to pet the puppy and he was fine.

As his Dad came off the racetrack he was bombarded by a four year old little boy, more excited than I had ever seen him. Was Bryce thrilled to have just watched his Dad drive behind the wheel of Jeff Gordon's race car? No! He had petted a dog and hadn't sneezed or anything Dad!!!

So...the hunt was on. Yorkie, we knew that worked.....Puppy, so it would be better with 3 little boys.....Not to spend a fortune, ok that one was a bit harder. Everything I found online was scam after scam. Pay the shipping and we will send you a puppy today for free! Um, no thanks.

Finally I spotted a picture, two adorable pups and I was drawn to them. I called, explained the situation and agreed to a meeting to see if Bryce had any reaction. The next call I had to make was to my husband at work. It went something like this. Hey would we consider a 3 year old dog that was good with kids? Sure, I guess. Ok, great I am going to meet her tomorrow to see how Bryce does. Great, hey send me a picture. So I did and immediately got a response back, which one is it? Well, honey, you see that's the catch, they are brother and sister and only come together. At this point our conversation moved from texts to an actual phone call. I think he was a bit surprised :) Yes, that's right, I had moved from NO DOGS, to one puppy, to a PAIR of three year old dogs.

We met the next day and it was love at first sight. Bryce did great and there was no doubt that he was not going to have any sort of reaction to them. He regularly rolls on the floor and cuddles with them. Every morning as he gets up and every evening as he goes to bed it makes my heart happy to hear him tell them how much he loves them :)

We thought that providing our boys the experience of having a dog was hopeless and now we have two that we couldn't imagine not being a part of our family.

Another milestone achieved for Bryce and two other little boys who are pretty happy :)