Strawberry Muffulls

I have the challenge of feeding a toddler on a gluten free, soy free, dairy free, egg free, beef free diet. Today I took out all of the flours, glanced at a basic muffin recipe to see what basic ingredients it had. I then begin the experiment...

Preheat oven to 400 degrees.

Put cupcake liners in the muffin pan.

Put 1-1/2 tsp egg replacer powder and 2 tbs warm water into a mixing bowl. Beat them together until they are not lumpy.

Mix in 1 cup vanilla hemp milk and 1/4 cup safflower oil.

Mix in 1 cup sorghum flour, 1 cup tapioca flour, 1/2 cup organic sugar (evaporated cane juice), 3 tsp baking power, and 1/2 tsp salt, just until moist.

The mixture should be a little lumpy.

Gently mix in 1/2 cup freeze dried strawberries.

Pour batter into the pan.

Bake them for about 28 minutes. They do not rise too much and they will be golden brown on top.

They were delicious. J ate 3 of them in 10 minutes. He is very selective, but he shoved the whole cupcake, one at a time in his mouth. So we named them Strawberry Muffulls.

Yummy!

*oh and just to let you know, you can substitute any of the ingredients but the results may vary

*let me know if you have any questions about any of the ingredients

Heavenly Recipes

A couple of days ago, Big-D and I decided to go grocery shopping for J so that we could give him more foods than just chicken, rice and bananas. We loaded the kids into the double stroller and off we went. The second that we walked through the door, both of the kids started flipping out. D was trying to make a fort out of his side of the stroller to get away from the "nasty fishy smell at the stinky food store" and J would scream every time D or any part of D's sun shade would touch him. Big-D and I looked at each other in desperation, but neither of us had a better plan.
I pulled out my list and it looked impossible, just as I said "screw it all, let's get out of here", I heard a voice say, "this rice bread is better, is there anything else on your list that I can help you with?"
I turned around to see who had said this. It was a sophisticated looking older woman. I was drawn to her, but because she didn't have 'Whole Foods' clothing on, I didn't think I should approach her.
She started to walk off, and amidst the boys screaming and Big-D waiting to leave the store, I followed my inner voice and ran off to talk to her. I yelled out "Miss". I hate that word, but I couldn't think of any better word to say.
Anyway, to make a long story short, Bog-D and the boys cruised the store for over an hour while this woman, who turned out to be the community educator for Whole Foods and an Allergy Cookbook writer, took me through the entire store giving me priceless information. She directed me through the 'Bob's Red Mill' baking goods and told me her "secret combination to allergy free cooking". It was AMAZING!
We are all extremely thankful for this experience. She even gave me her card and personal phone number so that I could call her if I have any questions.
As I get creative in the kitchen, I will post my food inventions on this blog.
Yummy Yummy!

Home Sweet Home

D and Big-D are so happy to have us back and we are so happy to be home. I will soon be able to start experimenting with new recipes for little J. I have ordered a whole bunch of substitute ingredients.

I have somehow figured out a way to prepare quite a few yummy meals with no soy, dairy, gluten, beef, or egg. It really becomes second nature when you do it out of necessity.
I wanted to also thank all of our family and friends for the amazing support that we received while in Denver. It really kept us going. :]

Oak-town baby!

We fly into Oakland tomorrow! We are so glad to be coming home. It has been an amazing trip. We are so gracious to the National Jewish medical team. They did a great job with J.
Our last appointment was with a feeding therapist. J has immature chewing so we have to go back to stage 2 foods consistency and he also has some sort of food trauma due to all the puking. Poor kid, but now with the right tools I know that we will be back on track. During this week, with the help of the doctors, nurses and of course the cafeteria staff, Jack has put on 2 pounds. Yay!
Jack has added a secret weapon to his diet...he now gets 24oz's of Hemp milk daily.
I found it at Whole Foods and I saw that the nutrition that it offers it 4x that of rice milk. National Jewish did a food study with it on Jack, and he passed. He has started sleeping better through the night now, because he is actually feeling full. I would really suggest it to all of you mothers who are not able to give your little one soy or dairy. It beats the pants off of rice milk!

Counting Down

J had a speech therapy appointment. It went well, he will continue therapy when we get home.
We have one appointment today at children's then we will have an exit review tomorrow.
Then it is home sweet home!

Diagnosis!

Today was a great day. We had a conference with the medical team to talk about the week's findings. The diagnosis is;
Food Protein Induced Enterocolitis Syndrome
and
Celiac Disease
and
Acid Reflux Disease

Next week he will be visiting the speech therapist and the feeding therapists at Children's Denver. They think that he may have some muscle tone syndrome that causes him to reject certain foods.

We are so thrilled to have an answer, it is almost surreal.
Also, we are sleeping in the Ronald McDonald house now. It really is an amazing program, so when you see the donation jars, you really should put your change in. :]

To update on J's health, he has lost 3 pounds in the last week, so they have recomended adding oil to his food. They want him to eat all the nasty greasy foods that he is able to eat. We are at 24 pounds right now. The doctors would like him to be 30 pounds. Looks like we have to go get some fries!

With the success of the day we may have an early departure. I sure hope so.

DAY 3

Today has been quite uneventful. They took out J's PH Probe, which we are both happy about. Then they were supposed to do a food challenge. J would not eat the food. He completely refused, gagged and then decided to go to sleep. I am feeling a bit discouraged. The doctors are not sure what to do about it. They know that he is very stubborn and are getting irritated with the situation. I pray that he will eat the food so that his health can improve.
We are feeling homesick and tired.
I am going to go lay down.
I just have to think of the improvements that J will have in the days ahead.
-M

We have arrived!

We are approaching day 3 here at National Jewish. It has been an amazing experience this far. The first day we had a wonderful time meeting the doctors and touring the facility. We are staying in the Children Care Unit of the Pediatric Unit of the hospital/research center. It is a huge unit, but there are only 5 families in the day program. This center is referred to by doctors and patients as the "last chance facility".

The other 4 families here have exhausted the medical care available to them in their home state. It has been an awesome experience to be able to meet these struggling families. We have group therapy, activities and classes.

Each patient is assigned their own doctor, nurse, and therapist, so you are actually receiving the attention and care that you need. Instead of waiting on nurses and doctors, they are constantly waiting for me. Our daily schedule is on the wall in the main room, so I just wake up and go apointment to apointment until "downtime".

The kitchen cooks food for J and it is ALL dairy, soy, gluten and egg free. I feel like I have arrived in heaven. I wish that Big-D and D could come here and we could stay forever. :]

The doctors have viewed the DVD that I made containing J's reaction to soy. They were so impressed that they had me sign a media waver so that they can use it as a teaching tool at seminars and in classrooms. They think that by allowing the doctors and students to view the video that they will be able to better understand what is happening to human body when it is having a severe reaction.

I could go on and on about all of the experiences that I am having but I will just leave you with a J update;

They think that there are multiple problems with J's system. They are looking at colitis, protein intolerance, eosinophilic gastroenteritis and retesting for food allergies.

Today they put a PH Probe up his nose and into his belly. He will have it in for 24 hours. It will tell us if he is having any acid reflux. He is not allowed to touch the wire, so they have his arms in straight casts and he has to have the monitor in a backpack on his back. I have been calling him Buzz Lightyear, just imagine, straight arms and a backpack.

J thanks you for your calls, prayers and get well wishes.

Until next time "to infinity and beyond!"

Weight Watching

While I was in the process of uploading J's photos, I realized that he wore the same jammies for his first Christmas that he wore on his 2nd Christmas. He has been through so much. So far during his illness he was a chubby 103% to a very thin 2% on the pediatric growth chart. I am proud to say that with MAJOR diet modification, now at 19 months old, he has been episode free for almost 4 months and is up to 27 pounds! That is 50% on the growth chart!

Just For J

This is a blog just for J. I thought that it would be a good idea to get this started so that while J is away at National Jewish Hospital, people can keep up on his progress. I won't have time in the day to call everyone and report. We leave January 6th and will be gone for at least 2 weeks. Thanks to a good friend, I have all of J's medical records organized and ready to go. We are all nervous, busy and emotionally exhausted, but we have faith that we will soon find relief.