Jacky Boy

Gluten Vacation

2012-01-11T12:35:00.000-08:00

Our GI doctor has been wanting Jack to try gluten to see if he still reacts, for about 2 years now.

We were not comfortable with the idea. Why mess with a good thing, right?

Jack had never had a super severe reaction to gluten, no vomiting or turning green, but his digestive track stops all together. He doesn't have a BM. He has gone 8 days without a BM and ended up with intussusception. Also, his behavior is effected, he screams, sasses and turns into a complete monster, probably due to the constipation.

So we were not on board... well, until last friday that is.

We were at his 6 month GI appointment and the nurse begged me again, "We really need to start trying new foods. I know you guys are hesitant, but we are sure he will do fine."

I wanted to say no, I wanted to grab little healthy Jacky and run out of there, but I was sure I would be chased by child protective services.

I am sure that the doctor wrote on Jack's chart, "Loony parents, do not want what's best for child. Won't let Jack eat ANYTHING!"

So I agreed. We didn't want to tell anyone, because we didn't want to get anyone's hopes up. But on Saturday we decided to start him on gluten to see if he would still react. He ate english muffins, granola, bread, candy, tortillas, crackers and more. Jack was so excited, I found him at the dining table giggling to himself, on more than one occasion. When I asked him what was so silly, he would say, "Nothing is silly, I am so excited that I am eating GLUTEN, duh!"

He felt okay on Saturday and Sunday, the excitement that he felt would have hid any icky feelings if there were any.

Monday he didn't have a BM, but we still went forth.

Today, Tuesday, I got a call from his teacher... he felt awful.

More than the pain in his belly, was the pain in his heart.

When I pulled up to pick him up from school he gave me a sideways smile. I scooped him up for a hug, I kissed his face all over and promised that I would make him the best Jack healthy bread ever.

I reminded him that some children do not have the chance to enjoy food at all. That some children have 2 foods they can eat and some have feeding tubes.

He gently nodded and wiped his tear and said, "I am sorry for them."

I told him he was lucky to go on a gluten adventure and asked him if it was worth the pain? and he said, "not really, but do you think I could go on another gluten vacation when I am 7?"

and I said, "of course! We'll plan it better then, you will eat a hamburger with a fluffy bun!"

He said, "That will be great!"

So, in 2 weeks we plan to go on a dairy vacation, in Children's hospital. I will keep you posted!

(Jack on Christmas)

PIZZA!

2011-02-16T14:40:00.000-08:00

We have a new favorite around these parts... PIZZA!!!

All gluten, dairy, soy free products are NOT created equally. The rice crust that I attempted to use this morning, ended up in the garbage. It was flaky, dry, tasteless and falling apart!

"Rice Cheese" NEVER melts, and chunky sauce can make my 4 year old gag!

3 Key Ingredients make this possible:

1. DAIYA Cheese

It tastes like cheese, melts like cheese, stretches like cheese, can be sprinkled like cheese and best of all (as far as Jack is concerned) it looks like REAL cheese!

2. UDI'S Pizza Crust

This crust is soft, thick and the flavor is amazing!

3. MUIR GLEN ORGANIC Pizza Sauce

The fresh taste and smooth consistency is super satisfying!

His pizza looked so delicious, his brother begged me for a slice!

Donuts!

2010-11-07T10:25:00.000-08:00

I received a special request for donuts!

I was up for the challenge. I used Cherrybrook Kitchen pancake mix and added less water to the mix. I fried it and then sprinkled some powdered sugar on top, SUCCESS!

APRIL 2010 - Easter for Jacky

2010-11-07T10:02:00.000-08:00

This year Jacky got a chick. He was thrilled. Great Grandma Gracie catered to his needs and prepared a safe Easter dinner, just for Jack. It is wonderful to have such an amazingly supportive family. I actually cried when she told me that she made special mashed potatoes, just for him.

The BIG 4-0!

2010-11-07T09:27:00.000-08:00

My boy is really growing and developing.

We were at Jack's pediatric appointment on Friday and he was 3'8" and 40 lbs!!!

I am so proud of him.

We started him in a parent co-op pre-school with a parent:child ratio of 1:4, knowing that there would be plenty of parents to keep him safe from offending foods. We were nervous to take the plunge into preschool, but he took right to it.

Jack brings his snack in his monkey bag, we provide his treats for birthdays and when they do cooking projects, Jack goes first and we substitute ingredients.

It has been amazing to see his personality develop. For the first time in his life, he has friends.

He also started Ranitidine about 2 months ago. He is hardly screaming anymore. We were experiencing at least 2, 1-3 hour fits per day, plus night screaming. GONE! He also decided to relax in the potty area and now he is POTTY TRAINED!!!

We tried everything; singing potty chair, Small Skivvies, Pirate Potty Book and Hat, treats, gifts, excursions, etc... Nothing worked.

Suddenly, about a month ago, he decided that it was time and that was that.

We are so pleased with his growth and development.

Valentine Swap!

2010-02-13T18:57:00.000-08:00

This year my boys are 3 and 5. They compare EVERYTHING! So, we decided to make their Valentine treats the same.

Step one - buy 2 of the cheapest little boxes of chocolate ever

Step two - eat the chocolates out of one of the boxes

Step three - buy your little FPIES kiddo his/her favorite candies, cookies or treats

Step four - wash out the little box, to avoid contamination

Step five - fill the box with safe treats for your child, put the lid on

Step six - gift your children their boxes of "chocolates"

Here's to a normal, safe and wonderful Valentines Day!

Progress!

2010-01-11T23:02:00.000-08:00

When Jacky was first diagnosed, I googled FPIES and Food Protein Induced Enterocolitis Syndrome.

NOTHING CAME UP!!!

Nothing at all.

I was afraid and I felt totally alone.

So I posted the video of him reacting to soy on YouTube.

This video is a record of myself taking Jack to his doctor to give him soy and video tape his reaction. No one believed me, our pediatrician and all of the doctors that had dealt with Jack did not think that he was suffering from more than a flu. The pediatrician in this video believed that Jack's episodes were tantrum related. I had to prove her wrong, I had to prove the world wrong, I owed it to Jack.

Now it has had 6,095 views.

The video has been used in American and European medical research and conferences.

Still feeling alone in the battle, I began a blog, which has helped us meet other parents of kids with FPIES.

Then came the support group. 58 families with children with FPIES visit and share their experiences, recipes, regrets, hope and friendship.

We have helped each other find doctors, made helpful phone calls to one another, organized play-dates with each other, supported each other during hospital stays, etc...

I want to thank all of you!

Jack wants to thank all of you!!!

(by the way, google FPIES now, it's amazing!)

Halloween Safety

2009-11-01T15:45:00.000-08:00

The Halloween Breakfast Menu:

Canadian Bacon Full Moon

Bloody Fried Potatoes

Mochi Body Parts brushed with honey

Vampire Hemp Milk

We planned ahead this year and bought Jack safe treats and toys. He trick or treated the typical way for about 2 hours, then we switched out his bag. We have a family rule, no one eats anything till we get home, so there are no accidents. It was fantastic.

He ate:

Gummy Crabby Patties

Ring Pops

Pumpkin Peeps

Candy Corn

Light up Gummy Pumpkins

he got molding dough to play with

He got a rash from his face makeup, but that's it!!!

Just Rice.

2009-10-25T20:47:00.000-07:00

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!

2009-10-11T23:25:00.000-07:00

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

2009-08-28T09:13:00.000-07:00

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

2009-08-10T00:15:00.001-07:00

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!

2009-07-23T08:50:00.000-07:00

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.

2009-06-25T21:29:00.000-07:00

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!

2009-02-15T11:30:00.000-08:00

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!

2009-01-27T21:16:00.000-08:00

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

2009-01-09T01:04:00.000-08:00

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!

2008-12-08T10:28:00.000-08:00

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

2008-12-08T10:20:00.000-08:00

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!

2008-11-06T02:07:00.000-08:00

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?

2008-09-30T15:56:00.000-07:00

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!

2008-08-16T01:40:00.000-07:00

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

2008-07-16T07:48:00.000-07:00

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

2008-07-09T22:23:00.000-07:00

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

2008-05-07T21:07:00.000-07:00

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?

2008-04-25T18:06:00.000-07:00

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!

2008-04-17T09:12:00.001-07:00

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

2008-04-16T23:59:00.000-07:00

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!!!

2008-04-10T15:53:00.000-07:00

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

2008-04-08T22:51:00.000-07:00

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

2008-03-23T00:23:00.000-07:00

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

2008-03-14T11:05:00.000-07:00

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.

Getting Bigger

2008-03-03T11:25:00.000-08:00

J is now a whopping 27 lbs and 35 inches long. We are just amazed at his ability to accept his diet and try new alternative foods. He is talking more, sleeping well and he is more interested in play. It is so much fun to have baby J back.

Hooray for Hemp!

2008-02-28T11:50:00.000-08:00

I must say, I am so happy that we found hemp. There are days that J just will not eat, but he will always drink his hemp milk. I used to worry about his calorie intake, but now we can all relax because in his milk alone, he is getting all of his daily requirements. It tastes wonderful and has so many great features, it just does not compare to any other substitute milks.

J now weighs 26 lbs and is 33 inches tall. He eats his cereal, Koala Crisp, with his milk and a spoon now. He looks so grown up.

Video of F.P.I.E.S.

2008-02-12T09:57:00.000-08:00

Here is J's reaction to soy. The video was taken in September 2007. Our pediatrician wanted to see a reaction first hand, Big-D and I struggled with the idea, so I decided to bring my video camera. I am very glad that we decided to go ahead with the challenge, the video has been very helpful in explaining J's reaction.

SHOTS!

2008-02-06T13:51:00.000-08:00

Mr. J had his pediatrician appointment yesterday. He has only had 2 rounds of immunizations up until now, because every time that I took him for shots, they sent us away because they thought he was too sick. Because of all the controversy surrounding the shots I was determined to tell her to only give him one at a time, I even planned out how I thought the conversation would go, then I caved and let her go ahead with all of them. Anyway, he got 4! His thighs were sore for the day, but he lived through it.

I got the stats for 21 month old Jack;
25 lbs 7 oz
32 inches tall
He looks healthy and happy.

I left the appointment feeling discouraged because the doctor had never heard of J's condition. I called Dr. Fischler, our savior doctor from Scottsdale, and he said not to expect any doctor to hear of it or even understand it completely. He told me to have a doctor for colds, flu's, and immunizations and to have specialists that J sees regularly.
This sounds good to me.

This is J on the day of his shots!

Strawberry Muffulls

2008-01-24T19:14:00.000-08:00

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

2008-01-22T14:32:00.000-08:00

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

2008-01-19T10:52:00.000-08:00

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!

2008-01-16T23:08:00.000-08:00

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

2008-01-15T10:43:00.000-08:00

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!

2008-01-11T15:23:00.000-08:00

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

2008-01-09T13:12:00.000-08:00

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!

2008-01-08T20:18:00.000-08:00

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

2008-01-02T00:47:00.000-08:00

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

2008-01-02T00:02:00.000-08:00

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.