Brianna: Hope

(these photos can all be seen larger on my photography blog here)

Brianna has had a very exciting week! I decided that she was doing well enough with food lately that I'd let her start to eat normal food (though I should have started out more slowly with one type of food item at a time). She's been on a gluten, dairy, soy and nut free diet for almost 2 years. She was also free of eggs, citrus and berries for at least a year as well. Last week I let her eat "normal" food (anything except most citrus stuff) and she seems to be doing ok. She has had a little bit of a runny nose here and there which I'm not sure if it's food related or a little left over from a little cold she had already gotten over. I guess time will tell. I still need to look out for eczema patches, etc. but she seems to be doing pretty well. She hasn't had any tummy troubles though! Sooooo, she's been one super happy little girl! All throughout the day she asks, "Can I try______?" and then responds after eating the item, "Oh, it's so delicious!" She is in heaven...pure heaven I tell you! She'll just be absolutely devasted if I have to take it all away again. Maybe I should have introduced it more slowly, but I was feeling a little overwhelmed and seeing her so happy I couldn't help myself!
Cross your fingers that she can eat like a normal kid!!!! We are so excited to start taking her out on "dates" to eat things that she hasn't been able to do. We are still avoiding high doses of milk like ice cream or glasses of milk, and citrus, but most everything else is up for trying!!! This gives me hope that someday Panda will be able to eat something more than a rice cracker!
Here is Bri with her friend Kaylee. Kaylee just turned 8 and is getting baptized so I was taking her pictures and brought Bri along. Bri had a little mini shoot as well! She kills me with her poses. She asked me, "Mom, does Kaylee know how to model like me, or do I need to show her?" I guess we need to work on her being modest about her talents! Love her though!


I bought this rain jacket and boots for photoshoots and we ended up using it on the hottest day of the year so far!!! We'll have to try it again on a rainy day! I love it!
I also made these ruffle jeans the other day and was wanting to take pictures of them! They are so versatile with her outfits, and help dress things up "just enough." I just need to make Panda a pair!

She seems like such a "big girl" here!

FPIES Syndrome and an ER visit

Miranda's test results came back on Friday. The only food of the 23 we tested that came back positive for an allergy was pineapple! I was stunned! Really, just pineapple? Apparently that is the only food of the tests (though we need to tests peanuts because I tested peanut butter not realizing they were not the same) that has that type of response. Unfortunately, it doesn't mean she's not "allergic" to all of the other foods, she just has a different response than an IgE response, and they aren't easy to test. Soooo, we still have to stay on the strict diet because all of the foods we tested still make her sick. The doctor then diagnosed her with FPIES Syndrome (Food Protein Induced Entercolitis Syndrome). It is rare and not very well understood but it is a non IgE mediated immune reaction to the gastrointestinal system to one or more specific foods commonly characterized by profuse vomiting and diarrhea.... Upon removing the problem foods all symptoms subside. Having FPIES does not proclude one from having other allergies/intolerances to food. Symptoms can range from mild increase in reflux and several days of runny stools to life threatening shock. In severe cases after repeatedly vomiting, the children often begin vomiting bile. It can also lead to shock when the child becomes severely dehydrated!
The doctor that saw Miranda on Friday was the best doctor I've seen so far. He was so nice, listened to what I had to say, played with Miranda, talked to me about things and actually understood what was going on. I felt relief when I left knowing that I can now understand why she vomits so often and has severe diarrhea, and that it is food related and there is a reason it isn't showing up on the food allergy tests. However, after coming home, I still have some questions, like why does she get hives and welts with some foods because that is not FPIES syndrome and the foods aren't showing up with IgE testing?
Last night Chad and I came home from a date and the baby sitter said the girls were good, Miranda ate tons of chicken, but had a hard time going to sleep and cried a lot. I went to bed and woke up to her screaming at midnight. She was COVERED from head to toe in vomit and her crib was smothered with it! Unfortunately, this is a little too common these days. I changed her and changed the bed sheets, but she continued to vomit, and vomit and vomit. I think she vomited a total of 50 times last night. She was to the point of projectile vomiting bile. I drove her to the ER where she continued to vomit bile in the car. I walked into the ER and nobody was there at the desk. Finally a nurse walked by and told me to sign in and she left for her lunch break. Nobody would listen to me as I tried to explain that she needed IV's right away to avoid going into shock. Finally, after watching her spew bile all over the waiting room, the security guard went and got me help. A nurse finally started checking me in and nobody knew what FPIES was. I was told by my doctor that I'd have to educate them and have them look it up, but they wouldn't listen to me. The nurse said, "So you say she's been vomiting but we haven't seen her do any of it." Um seriously, did you not see the floor, or our clothes all covered in neon yellow/green stuff? So, Miranda, on cue, vomited towards the nurse! That's my girl, you tell her!!! The nurse finally started listening and helping, and then Miranda blew out her diaper. They took us back to a room and Miranda was so dehydrated it took over 45 min and 3 attempts to get an IV line going. She was still fighting strong and it took 3 of us to hold her down....so that was good news, but she was limp most of the time. She continued to vomit and have 5 more huge blowouts with the scariest diapers I've ever seen. They took the stool samples for tests as the doctor had never seen anything like them before! Once she got rid of all the food in her body and the IV liquids went through her she perked up to her normal self. She went from violently ill to her perky self...and that is the life with FPIES. Unfortunately, she had a babysitter so I am not sure what triggered the reaction, but I'm guessing chicken isn't ok. Which is unfortunate because she LOVES chicken and would have it for every meal if she could. This is the third time she's vomited after chicken (but the only time this extreme). She eats chicken every day, but the only time's she has vomited when she has eat A LOT of chicken. So, I'll have to check with the doctor at our follow up appointment on Monday. For now, she's resting and I'm doing a serious amount of laundry! We spent from midnight to 7 in the morning dealing with this, and we are both exhausted. She kept begging at the hospital "Mommy, night night!" in between throwing up! She broke my little heart!
Oh, and the best news???? Most kids grow out of FPIES by 4-5. They may still have intolerances to these foods, but they shouldn't have such severe episodes. And???? they gave me a prescription for and EPI pen!!! I finally feel a little safer watching my child!

Patch Testing

Miranda had some more allergy testing done today. They patched 23 foods to her back and they have to stay there til Friday morning. Her back looks alien like with all this stuff patched on it! She seems uncomfortable with all of the tape as she keeps saying "ow, off, bye bye, off" and points to her back! She didn't nap today due to discomfort and I'm hoping for a better few days as we wait for Friday's appointment to approach. I'm also hoping for a test that doesn't come back "inconclusive" again!!!

Food is Evil

(This is a long post about my frustation with food intolerances/allergies....feel free to just skip to the pictures instead!)
Food and I don't have a very healthy relationship! Since we've been working with all of our food allergies and intolerances, food feels like an enemy. One cheerio that Panda finds on the floor at church can cause a week of pain in her tummy! Because food makes my girls sick, makes Brianna's skin break out into rashes and eczema, and gives me back pain I find food to be evil! The problem is, we're surrounded by food everywhere. We have to eat multiple times a day and try to find a variety of foods that we can eat. Which is hard when you're so limited. (Here's a list of what we can't eat: no gluten, dairy, casein, soy, citrus, eggs, berries, nuts, tree nuts, legumes and beans, onion, tomato, celery, cantaloupe, watermelon, meat (except free range chicken is ok), corn, no grains except brown rice and a few white rices, and chocolate.) That doesn't leave much left that we CAN eat. It gets frustrating. Can you imagine what it's like to go to a grocery store and try to find something we can eat? It's like a hunt and it's difficult to be surrounded by food that looks good, tastes better and is cheaper. Which is why I gave up again this week and started eating normally. ( I kept the girls on the diet though. Brianna is only gluten, dairy, soy and egg free though. She can have organic eggs sparingly now.)
So, I've realized that dairy makes me sick to my tummy, something I knew before this. Gluten seems to be the culprit for all of my back pain for all of these years. My back felt great while I was avoiding these foods. Now that I'm eating "normally" my back aches again. Ahhh, back to the diet I guess.
I have learned a lot since we started some of this eliminating stuff last summer, but I still feel so lost as to what to eat most of the time. We have the same few meals, same snacks, same treats all of the time. Miranda is starting to get really bored with the foods she's eating and is starting to refuse some of the only things she can eat. I'm lost as to what to do?! She wants to eat whatever she sees other people eating and she just doesn't understand why she can't. Brianna is a trooper and has been very relaxed about not being able to eat stuff. She amazes me!
Back to the food as an enemy: We have a few road trips planned this summer and I'm already stressing about the food. We'll be gone for a week on the road and staying up in a cabin like place. I'm going to need to do some research to find a specialty food store where I can purchase foods for the girls that I can't pack for a 2 day car trip. I'm going to need to have foods available for Brianna that are similar to what other people are eating...if they're eating pizza she's going to want some of her "special pizza." I'm suddenly overwhelmed with how I'm going to figure this out.
Lastly, the foods we can eat are soooo expensive. A loaf of "bread" (which is usually nasty) is almost $8.00. Free range chicken for one person/week is $20.00. A HALF gallon if "milk" is over $4.00. Pancake mix for two small batches is almost $7.00. I finally found a cake mix I think Miranda can have for her birthday...it was nearly $6.00 and the "frosting" was $5.00. Can you see why I'm having a hard time following this diet?
Miranda's tummy has been bothering her again and I don't know what I'm feeding her that is causing it! She's not sleeping at night and will scream for 1-4 hours in the night until I get her gas out and she'll go back to sleep! Oh food, how I ate thee!!
I was excited to see Miranda eat one of her old "favorites" that she has been refusing. And she thoroughly enjoyed it as you can see! I was playing around with my camera after being challenged to take pictures of your child in a high chair, no cute outfit, cute hair do, etc. (Notice her "Rooster" hair? She won't keep her pony tails, hair clips or headbands in any more!)