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.

 

Support Anyone?

I am starting a little group for mom's and dad's of kids with F.P.I.E.S.

I have been contacted by many mom's around the world, from southern California to Singapore... I would love to bring us all together to share recipes, stories and dealing strategies. I am setting it up and will post a link soon. If you are interested in joining our group, leave a comment with your email and I will be sure to include you.

Icky Milk!

We knew that it was inevitable. J would one day become curious enough to want to try a food that he knew he shouldn't eat.

This is how it went...

We were sitting at the table having dinner as a family and I decided to get up and start clearing some plates. The second that I turned my back to the table, to rinse a plate, I heard a splatter sound. I turned around slowly, afraid for what I might see and there it was, J holding D's cup. He had a puddle of milk on the floor by his chair, milk was all over his chest, dripping from his chin and even on his tongue, which he was sticking out at me saying, "I ee icky mill, keen it".

I grabbed the rag, screamed an obscenity and began scrubbing his tongue, teeth, hands and face. We were all afraid but knew that there was nothing we could do. We brushed the kids teeth, read our books and then put them to bed. J was being SUPER fussy, but he is like that sometimes so we didn't think much of it. We got him to fall asleep and we went to bed ourselves.

About 4 hours later, I heard a strange scream. It was the same scream that I had heard come out of Jack during his last episode, which was over 6 months ago. I ran into his room, smacked on the light switch and there he was, poor baby Jack all covered in puke and diarrhea (sorry to be so graphic).

I immediately called Oakland Children's and they prepared for him. We are so very thankful for the cooperation of all of the doctors and nurses on staff. They were amazing. J was stabilized and they said that he was lucky to only be exposed to a small amount of the milk. His body reacted badly but he didn't go into shock or worse. He did very well. He didn't even flinch while they inserted the IV. He just sat there, all of the nurses had to come and meet the most well behaved little patient they had seen in a long time.

We had become really relaxed about keeping "icky foods" out of Jack's reach. We took his health for granted, it was a great reminder.

We feel so blessed to be home and healthy again. :]

In this video J is pretending to drink from his IV like a straw. He is such a funny guy.

sPaGhEtTi

spaghetti noodles made from corn... $3.95

tomato basil sauce from Trader Joes... $1.89

J twirling spaghetti on his fork and taking a huge slurping bite... PRICELESS

Counting Sheep

Here are some shots of J during his last medical adventure. I blogged about it on my family blog, here. 

He has been f.p.i.e.s. episode free for a quite a while. His G.I. appointment went great, he is off of Prevacid now, and he seems like a normal kiddo. Big-D and I are tempted to start challenging but the G.I. advised us to wait until we are back in Denver when J is 3. I guess I'd better get a little more creative in the kitchen.

Now and Then

J was born with a calm, happy disposition. Now we find ourselves calling him "J the Jerk", under our breath of course.  His doctor's and therapist at National Jewish recorded that he has psychosocial problems that are a result of his disease.

We were busy dealing with his health so we chose to put off everything else. So now we are seeing all of these awful behaviors coming out in peer play situations. It is so difficult to know what to do. We decided that we need to put him back in feeding therapy and psychotherapy. I am writing this entry to advise other parents in this situation to keep your child in ongoing therapies. I am sure that taking care of the problem when it is not a huge PROBLEM is probably the better way to go about it. 

I am happy to say that we have come a long way... and it is not too late to pick up where he left off.

These first few photos were taken in November, before J had any medical help for F.P.I.E.S. 

The last 2 photos are J after only 3 months on his new diet. 

THEN

AND NOW

What's in the BOX?

So, I had been practicing recipes for Jack's birthday cake, when I stumbled upon these beauties at the health food store. Hooray for mixes in a box! I paid $6 for the cake and $4 for the frosting, which isn't too bad for the time and effort it will save. I was excited about the product so I went to their website at www.cherrybrookkitchen.com . They have some great products. Check them out here.