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.

CuPcAkEs!

I have been practicing cake and cupcake recipes because J's birthday is quickly approaching. I totally winged this recipe, and they were great! I just need to perfect the frosting/glaze. I didn't get a photo, because they were eaten before I could get my camera.

I will make them again soon.

Here is how I did it;

Preheat the oven to 350 degrees.

In a large mixing bowl, blend 1/4 cup water, 2 tbs canola oil, and 2 tsp baking powder. Slowly add in 1/2 cup garbanzo bean flour, 1 cup sweet sorghum flour, 1/2 cup white rice flour, 1/2 cup potato starch, 1/2 cup corn starch, 1/3 tbs xantham gum, 1 cup raw sugar, 1 cup honey, 3/4 tsp salt, 1 tsp vanilla, 1/2 cup oil or shortening, 1/2 cup hemp or rice milk, and 1/2 cup pear or apple juice.

Mix until the texture is sticky, but pourable.

Oil a cupcake pan and then fill each cup 3/4 of the way, bake for about 18 minutes (or until they pass the toothpick prick test), and enjoy!

Scream Filled Nights

I am writing this entry to the parents who are considering taking their child off of medication without doctor's consent, and I am writing this to myself, because I know that I will think about taking him off again.

I don't know if anyone goes through this as often as I do, but I am constantly deciding that Jack does not need his acid reflux medication. I HATE giving him medicine, I don't know why! I think that I like to pretend that he doesn't need it. When you do not see the effects of the disease for a while, it is hard to believe that it still exists. Anyway, I quit giving it too him two weeks ago. We decided to watch for changes in his eating habits or behavior. Within a day, J's behavior started to get worse. He was screaming nonstop and he wouldn't sleep through the night. I made excuses like, "he must be really tired", and then when he wouldn't sleep, "he must be overstimulated". As the week went on, the excuses continued, but when he began refusing to eat, I knew that I was in trouble. So we started him on it again. Poor guy, I guess I should listen to the doctors.

Could it be? PaNcAkEs!!!

Today, with the help of D, I made pancakes for the whole family... gluten, egg, dairy, soy, FREE! They were great, you just have to eat them quick or they become chewy. 

J ate 2 whole pancakes!

Here's how I did it;

To make about 10 pancakes;

Put 1 cup brown rice flour, 3 tablespoons tapioca flour, 

1/3 cup potato starch, 1/2 tablespoon sugar, 

1 1/2 tsp baking powder, 1/2 tsp baking soda, 

1/2 tsp salt, and 1/2 tsp xanthan gum into a large mixing bowl.

With a whisk or a fork, stir the dry ingredients.

Now, in a small bowl, mix 3 tsp egg replacer and 

4 tablespoons warm water until the powder is dissolved.

Mix the egg replacer liquid into the bowl with the dry ingredients. 

Mix in 2 cups water and 3 tablespoons canola or safflower oil.

Stir or whisk until well blended and a just a few lumps will remain. Heat a 

griddle or a large, well-oiled skillet over high heat. Spook batter onto skillet 

and cook until the bubbles form. Flip, and continue cooking until golden brown on bottom. Serve immediately with condiments of your choice. 

Enjoy!

Master of the Playground

It is so wonderful to see J playing and feeling just like all of the other kids on the playground. He looks truly satisfied.

Episode Free Easter

We switched out the treats in Jacks' eggs for "J approved" treats. It was a little tricky, but totally worth it!

The Natural Candy Store

Just Tomatoes

J just keeps growing

This is HUGE!

J is up to 28.5 pounds! That is 60% on the growth chart! Feeding him and is quite a chore, I have to mentally track his calorie and fat intake, but I guess it is completely worth it. I can't even believe the progress he has made.