This year Jacky got a chick. He was thrilled. Great Grandma Gracie catered to his needs and prepared a safe Easter dinner, just for Jack. It is wonderful to have such an amazingly supportive family. I actually cried when she told me that she made special mashed potatoes, just for him.
We were at Jack's pediatric appointment on Friday and he was 3'8" and 40 lbs!!!
I am so proud of him.
We started him in a parent co-op pre-school with a parent:child ratio of 1:4, knowing that there would be plenty of parents to keep him safe from offending foods. We were nervous to take the plunge into preschool, but he took right to it.
Jack brings his snack in his monkey bag, we provide his treats for birthdays and when they do cooking projects, Jack goes first and we substitute ingredients.
It has been amazing to see his personality develop. For the first time in his life, he has friends.
He also started Ranitidine about 2 months ago. He is hardly screaming anymore. We were experiencing at least 2, 1-3 hour fits per day, plus night screaming. GONE! He also decided to relax in the potty area and now he is POTTY TRAINED!!!
We tried everything; singing potty chair, Small Skivvies, Pirate Potty Book and Hat, treats, gifts, excursions, etc... Nothing worked.
Suddenly, about a month ago, he decided that it was time and that was that.
We are so pleased with his growth and development.
When Jacky was first diagnosed, I googled FPIES and Food Protein Induced Enterocolitis Syndrome.
NOTHING CAME UP!!!
Nothing at all.
I was afraid and I felt totally alone.
So I posted the video of him reacting to soy on YouTube.
This video is a record of myself taking Jack to his doctor to give him soy and video tape his reaction. No one believed me, our pediatrician and all of the doctors that had dealt with Jack did not think that he was suffering from more than a flu. The pediatrician in this video believed that Jack's episodes were tantrum related. I had to prove her wrong, I had to prove the world wrong, I owed it to Jack.
Now it has had 6,095 views.
The video has been used in American and European medical research and conferences.
Still feeling alone in the battle, I began a blog, which has helped us meet other parents of kids with FPIES.
Then came the support group. 58 families with children with FPIES visit and share their experiences, recipes, regrets, hope and friendship.
We have helped each other find doctors, made helpful phone calls to one another, organized play-dates with each other, supported each other during hospital stays, etc...