About Me

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This is a blog for my son. He has a rare auto immune disease that causes his body to attack food like it would a virus making it impossible for him to eat most any foods with out getting very very sick. This is a record of our ups and downs, doctor visits and procedures. Our trial and error life of finding out what foods are safe for our son to eat and eliminating the ones that are not from his life.

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Monday, April 22, 2013

MOVING right along!

So we just moved!
We outgrew our old house (Okay, I really just HATED that old house) and our lease had been month to month for like two years so we decided that this year's bonus money would be spent on moving into a bigger, newer, more open, single story home. 
We found the home of our dreams!!
I seriously love this house. 
John does too.

John and I both love that he know has access to his bedroom. I like it because I can keep all his toys out of the living room and he just likes having the freedom to move about the house on his own.

We're pretty stinkin' happy. It's been an AWESOME month.

Food trials are also moving along nicely. 
We started chicken which, just like last time, didn't go so well. We trialed chicken before turkey and decided to stop due to increased reflux, behavioral problems, and him just not liking it in general. We blamed the first two on the stress of introducing a new food and the texture and decided we'd try again later. Since we now have turkey as a safe food we decided to try again, and got the same results only worse. John was not napping, waking up in the middle of the night, super clingly, and acting like everything was uncomfortable. He was refluxing so badly that he would nearly throw up and had almost non-stop hiccups. I wasn't going to put him though this for 10 days when we have so many other options for trials that might go a lot better so we are pushing chicken back again.
At first I thought peaches was going to be a battle. He didn't seem to like them at all. They were pretty tart. I remembered adding sugar to the sweet potatoes to get him to try those and it worked! He LOVES them!!
He is doing so well with them and eating (asking for!!!) so much of them that we've decided to move on after five days instead of ten.

Today we started white rice.
This one is a little tricker. You see, all the rice cereals that you can buy in the store have weird ingredients in them or stuff other than just rice. Soy lecithin, sunflower starch, MILK (?!?!)... I had to figure out how to make my own. At first I thought I'd just steam some rice like I would for myself and then throw that into my Blendtec. I started to do some research and came up with this blog, Barefoot Mamma on how to make your own rice cereal. Super simple! PLUS I got to use my fancy Blendtec blender!!

I threw half a cup of long grain rice into the blender

I started using the Ice Crush/Milkshake setting but quickly realized that just turning the speed up to 8 or 9 for a minute or two was what I needed. 
When it's blended enough you'll have this nice white powder.

Boil about two cups of water (I should have used less) and throw that powder into the water. Turn down the heat and stir until the water is absorbed and it starts to thicken up.

When you're done it should look something like this...

I even went a head and made another batch into the powder so I have one bowl already cooked up and another bowl ready to be cooked.
You can keep it cooked in the refrigerator for up to three days.
I mixed a little in with John's green beans and he ate it up. I'll also be mixing it in with nearly all his other foods too! I really hope this food is safe because it opens up SO many options for substitutions!
Up next...


Thanks for reading!

Tuesday, April 9, 2013

Scope #5

John has really been enjoying his new foods. Prunes are his favorite followed closely by green beans.
after an early morning self feeding of prunes
We've been trialing sweet potatoes, green beans, turkey, and prunes for 5-10 days each and it's time to have a scope. The more foods that are added between scopes the more confusing it becomes if the results come back with high numbers. Some scope between every food, some trial 2-5 foods in between scopes. We are going with four right now since John needs 8 safe foods to go to Marcus. 

Dr. L. does scopes on Monday which is nice for us because we can spend the night before in Atlanta with out Doug having to take off another day of work. 
So we decided to head to Atlanta on Saturday and spend the weekend there having some fun. 
We went to the zoo on Sunday.

And played in the photo booth.

We ate some great food and played in the yard with the puppies at Aunt Jeannette's house.

John's breakfast

our breakfast (biscuits not pictured)

I have no idea what he is doing in this picture above but he was all over the yard just loving the nice warm weather and room to explore.

He loves his Abigator (Abigail)

We made some memories and enjoyed ourselves thoroughly.
Monday morning came quickly and we had to get up at 5:30. Even being in Atlanta we still had to leave the house an hour early to get to the hospital on time. John, being so young, was the first scope of the morning at 7:30am. We arrived at 7:00 with a sleepy and hungry little boy.
When they took him back he was so brave. He didn't cry or anything. They said he went to sleep very easily and quickly. The scope went well and visuals were good. All very good things to hear.

It never get's easier letting him go back there and sitting in the waiting room. He was only gone for about 15 minutes but it's a long, and stressful 15 minutes.
He woke up great and only cried when the nurse pulled the tape off his IV to remove it. He's such a trooper.

We went back to Aunt Jeannette's house to rest for a little while and pack our stuff to head home. 
John was pretty groggy but happy. 
getting some breakfast after the scope

*yawn* still sleepy.

We expected the results later this week but John was running a low grade fever this morning so I called the GI office to let them know. When Dr. L's nurse called me back she said she had some good news...

John's biopsy results were back already!!!
She hadn't even told Dr. L yet!


This is better than we hoped for and the best it could ever possibly be!
John is in remission and this is his first clear scope with food!!

Now, it's time to start more food trials! We will scope again in two months with four more foods.

White potato

Since we are in the middle of moving I may not start the next trial until we get moved but I've not decided yet. 
We are obviously over the moon excited!! We no officially have FOUR safe foods and are well on our way to EIGHT!
Thanks for reading!!

Monday, April 1, 2013

Food Free Easter

I hope everyone had a great Easter weekend! I know we did!
The holidays are always a bit tricky for us since they are ALL centered around FOOD! 
(Why is that??)
So, we just have to get creative.
There are lots of ideas on Pinterest for food free Easter baskets if you aren't feeling too creative. 
I want to share what we did for John this year. 

look at those adorable peeps!!

My cousin has a friend who makes these ADORABLE felt foods. You can check her out here : 
As soon as I saw her Easter goodies, I knew I had to have some for John's Easter basket.

some Easter cookies

I loved the idea of John getting to have some traditional Easter goodies in a safe way.
What Easter basket is complete with out a chocolate bunny??

he even comes with his own "white chocolate carrot"

We also had books, a mini slinky, some neat triangle crayons, and a monster truck in his basket.
yes, that is Darth Vader with bunny ears :)

checking out his chocolate bunny

We even got some custom "Cars 2" Easter eggs.

"issa Easter monnnster trrruuuck"

trying to figure out the "swinky"

Once you start thinking outside the traditional box you'll find there are LOTS of fun things you can put in an Easter basket and hide inside plastic eggs that have nothing to do with food. 
Thanks for reading and we hope you all had a fun and SAFE holiday weekend!