Just Rice.

Let me just say, the other day we stopped at Panda Express and Jacky was starving, so I had to put my thinking cap on. I saw a man next to me order the white rice, so I asked them if it was just rice, no oils, additives or anything. They said no, just rice, I know that not all FPIES kids can have rice, but Jacky can. We snagged a ketchup packet from the Wing Stop next door. So he ate a huge bowl of white rice, mixed with ketchup. He ate the whole bowl. I know that the rice couldn't have been that different from the rice I serve. He just felt completely normal, sitting at a restaurant, eating out of the same type of bowl as his brother. It was a happy moment.

In Love!

Jack is now 36 pounds and 38 inches tall.

Some of that weight can be contributed to Cherrybrook Kitchen.

Jack just LOVES to bake their yellow cake with chocolate and white frosting. He feels just like a "normal" kid, sticking his fingers in the frosting jar.

Prevacid the Miracle Drug

Since my last entry, we have started giving Prevacid before dinner every night. It has worked wonders! No more night screaming at all! He must've been in some pretty serious pain. I am so thankful to have my Jacky back, I am also so thankful that I do not have a newborn at this time. I can't handle the constant waking to screams in the night. :]

So the other night we went to the county fair and grandma got Jack a big bag of cotton candy. He can actually have it. Surprisingly the ingredients were almost purely sugar. I know that is not really surprising at all! So Jack now has a new favorite, COTTON CANDY!

Screams in the Night

Lately we have had nightly screaming episodes again. It seems that something is bothering Jack. He is totally tense and screaming, his eyes are spacey and he is really aggressive. I have not a clue what could be causing this sudden change in behavior/sleep. Poor guy. He may be hungry, he may be having a hard time internally, maybe it's acid reflux again, nightmares, who knows!?

We need to figure something out soon. I have been in denial and we have been putting Jack's FPIES on the back-burner. He needs to get patch testing, we need to figure out why he still weighs 32lbs and we need to ask someone why he is screaming thru the night like a gassy newborn.

Maybe he has grown out of FPIES. Maybe he is having acid reflux that we need to treat. Maybe not either of these.

I will get on the phone tomorrow. It just may do him some good.

ICE CREAM!

Living Harvest has come out with an ice cream!

With rich and creamy Tempt™, you won't miss dairy or soy frozen desserts one bit. Packed with natural goodness, every spoonful is a delightfully creamy treat. From flavorful Vanilla Bean all the way to exotic Coconut Lime, Tempt is simply irresistible in all five flavors.

Jack seriously thinks he has died and gone to heaven.

If you cannot have rice, don't get excited, there is a rice syrup in it. Sorry. :[

He was really nervous when he tried a bite, he screamed "no, it's belly sick"

I reassured him and said,

"Jack, I know it tastes delicious, but trust me, it's really yours."

He looked an me suspiciously and then hogged down the whole bowl.

And for that moment he looked just like a normal kid.

Jack turns 3.

People always seem to incorporate food into birthdays and celebrations. When D's birthday comes it's all about what we will be eating and what sort of cake he will have. Last year I prepared a huge birthday feast for little Jack, grilled kabobs featuring Jack safe foods, Jack safe cupcakes and a pinata with Jack safe candy. But Jack didn't take one lick of any of the food, he seemed afraid and unsure of it all, so this year we made it about Jack.

He could do whatever he wanted for a day.

He awoke.

Opened his gift, Brobee pajamas.

Put them on as his clothing for the day.

Went to lunch at Chipotle, Jack likes their pork, rice and black bean bowl.

We went to the mall to this old fashion toy store where Jack was told to pick any toy he fancied. There were some A M A Z I N G toys, but he picked a guinea pig stuffed animal.

We walked the mall, and got dairy free smoothies.

Then he was ready for bed.

I asked if he wanted to go to the Zoo the next day or spend time with family and friends at a park, he said "friends".

So the next day we packed up and went to grandma Annette's where family and friends came together to celebrate little Jack's 3rd birthday.

He hardly touched his birthday cookie, played on the slip n' slide and then passed out on the couch.

Happy Birthday Jack. We love your cheesy taste, spitfire attitude, goofy sense of humor, eccentric style, and your sweet kisses.

A new Cereal!

Jack always eats Koala Crisp

I am sure he gets bored. 

Last time we were at Whole Foods, we picked up Natures Path Corn Flakes, and Jack LOVES them. They only contain: Organic corn meal, concentrated organic grape juice, and sea salt. 

Back Again!

Poor little Jacky was back at it again. He had been slightly sick, or just not right all week, we sort of ignored the signs, on friday I called the GI for an appointment because of the recent behaviors Jack was exhibiting, fussiness, lack of hunger, irritability, lethargy and his bm's were full of mucus. He told us to bring him directly to the ER, so we loaded him into the car, 20 minutes down the road, he started vomiting. We were feeling so blessed to already be on our way. We made it there and he was admitted immediately. 

He is quite the sport, he hardly flinches for the IV, he knows how to operate the in-room TV's, he sucks in his tummy when the doctor starts poking around and he giggles like crazy when they listen to him breath. We are so thankful for his strong spirit and patience. 

I thought that we would have to completely start over with rice and work our way back up to his foods. We did this for a few days, which were miserable days. He was screaming and demanding cookies, hemp milk, rice bread, etc. Then, after some prayer and thought, we felt inspired to re-check his foods. We were feeding him items with possible trace amounts of his offending foods. We couldn't think of what he could have eaten, so we figure that this had to be it. So now we've just got to crack down on any possible exposure to the "bad foods" and help him to stay healthy.

A Change in Jack

We have noticed that Jack is happier than he has ever been before. He is less aggressive, communicating better, and more willing to trying new things. He has never attempted eating a vegetable, but for about 10 months now we have been working on broccoli. Over time he smelled, then touched, then licked, then sucked and then, most recently, dipped his broccoli in basalmic vinegar and ate it! 

Everyone that knows Jack and even people that have casually seen us have mentioned the change in Jack. It is amazing.

We think that he is finally feeling safe, maybe even comfortable with his food and even more importantly with his life.

The BEST PANCAKES!

Okay, so we've found the most amazing gluten-free, egg-free, dairy-free, soy-free pancakes EVER! They are amazing, you only need to add oil and your choice of milk substitute or even water!

CHECK YOUR LOCAL SPECIALTY GROCERY STORE OR GO HERE TO GET 'EM.

Support Update

I am so excited that I have received so many responses in my search for others who want to share their personal struggle as a parent of a child with FPIES. I am going to gather all of the emails and set up a forum for us to communicate. 

I also want to thank all of the supportive people who have left thank you's and encouraging notes. I apologize for the lack blogging I have done here recently, I plan to make it a more frequent occurrence. 

Have a fantastic day!

Not so SpOoKy HaLLoWeEn!

I fixed the boys an exciting Halloween breakfast. I created a bat pancake, bacon and green hemp milk for Jack. The rest of the family had normal bat pancakes, bacon, bloody eggs, and zombie juice. 

For Jack's pancakes I winged it and used; 

1/4 cup brown rice flour

1/4 cup potato starch

1 substitute egg (energy egg sub. powder in box)

2 T canola oil

2 tsp vanilla

dash cinnamon

hemp milk (enough to form pancake consistency)

Cook em' up like pancakes!

We use palm shortening for butter and regular maple syrup. Enjoy!

He didn't eat the Tootsie Pop, he was just asking his favorite question, "this belly sick?" 

We want Jack to grow up experiencing the same thing as other children. We decided that although it would be stressful for us parents, we wanted to take our kids trick-or-treating, door to door. It was exhausting trying to keep all of Jack's candy inside his bag and not in his mouth. But it was a success. We made it through without an episode. I was surprised to find that even though the ingredients were not present on the individual treats, most were clearly marked with allergy information. Which came in handy when Jack started to drool over his treats. I was able to search a little and find some Sponge Bob sweet tarts that contained only sugar, corn starch, guar gum and coloring. I can happily say, our Halloween was pleasant.