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!!!

The Plague

We were hit by the plague this week! Brianna and Miranda had a runny nose and cough for a week and seemed to be getting better. Chad and I started to get sick on my birthday with colds as well. Then Bri took a turn for the worse and ran a high fever for 2 days. The highest was 105 degrees and she was very lethargic for those two days. She could hardly move and wouldn't walk. Miranda's cold seemed to be gone, but she was having some very cranky moments pretty often! So, I headed to the doctor to find out that Miranda had a double ear infection and Brianna had pneumonia! Thank heavens for modern medicine! They are both doing better after being on antibiotics. Brianna got an antibiotic shot, and within 12 hours was bouncing around the house again! She seems nearly back to normal, it's amazing! Chad however was feeling much worse today, so after a trip to Urgent Care he is on antibiotics for a sinus infection!!! I'm just hoping mine doesn't turn into bronchitis!!! Our new neighborhood is kind of in the middle of nowhere so I'm grateful that the one store out here is Walgreens. I believe I've made 7 trips there in the last few days!
Here's a picture of the girls feeling better, watching some tv (though they look a little orphaned due to a rough few days and no baths!) I'm so glad to see them smiling! Miranda loves to copy her sister and Bri thinks it hilarious!
As far as the allergy testing, both of the girl's tests came back "inconclusive" again! Miranda has another appointment next week for "patch testing" where they will make pastes out of the offending foods and leave them there for 72 hours...then check to see for a reaction. We may have to reschedule since she's on antibiotics...I'll just have to call and check!

Panda is 18 Months!

My little girl turned 18 months this week, and we all know that means she can FINALLY go to nursery! Well, I'm not so excited about it! In fact, I'm a complete mess! My kid could literally die in nursery!!! Last week, when I went to talk to the teacher to give her a warning about Miranda's food allergies they were serving peanut butter sandwiches for snack!!! It can't get much worse for my little girl! I walk in and just see "poison" everywhere! They were really kind and cleaned all of the toys this week, knowing she was coming. I made a batch of gluten free playdough which they will be using from now on. I also packed a month's worth of snacks, typed up a list of her food allergies, symptoms, etc. and left them with some Benadryl in case she breaks out into hives again. I went to drop her off today and there were nearly 20 little kids and one teacher! A few other moms and I stayed to help out!

Snack time was a disaster! With that many kids crammed around the table they were nearly sitting on top of eachother and all of the other kid's food was within inches of her little grabby fingers! Within two seconds her neighbor had already tried to give Miranda his snakc. So, Miranda had to sit in the corner of the room eating her snack today while the other kids ate at the table! She looked like she was in time out! After snack, there was food and crumbs all over the floor, so I had to get the "vacuum" to clean it up and we wiped the tables off really well! Ahhhh, nursery is going to be a nightmare! After talking to the teacher we decided it would be best if I came and got Miranda before snack time every week and didn't bring her back until snack was all cleaned up!

The teacher is really nice, but I just don't see it being possible for them to keep as close of an eye on her as she needs with the crazy amount of kids in there. (And this ward has 3 nurseries!!! They are all just as full!)

Miranda hasn't been doing as well lately in the food department. She has broken out into hives around the mouth about 5 times now, she is having horrible diapers again and she has thrown up 3 times now after eating something we thought was ok! I felt like I was getting on top of things til this last month! We finally got a referral to an allergy specialist and hopefully we can get to the bottom of this soon! I hate not feeling safe to feed my kid or to leave her anywhere!

I'm sorry I'm complaining, I know I have it easy compared to some! Days like today are just hard! In fact, every holiday is just kind of hard. We celebrate with food so much, that I find it rather depressing to not be able to participate with my girls. I always wanted to be that mom that made fun food, treats for holidays and my poor girls just get chicken and rice for every meal! Maybe I can spice it up with some salt for the holiday! Yippee!

I tried to do an 18 month photoshoot of Panda, but she is really difficult to take pictures of right now! I'm hoping I can find a time to bring Daddy along so she will cooperate a little more! I was really hoping to get a great one of the girls together to blow up on the wall....and this is what I got instead:

Gaining Independance

Miranda was thrilled the other day when I gave her a "nuk" brush to feed herself! She won't eat much these days, and usually does better if she can feed herself! The nuk brush is a much easier way to eat than a spoon and she acted like she was hot stuff with it! She enjoyed some coconut milk based yogurt with minimal mess!!! Well, as minimal as you get with a 16 month old!

She finished the last bits off with the good ol' fashioned finger feeding!

Miranda is also getting better at climbing and will put stools up to get on higher chairs, the piano bench, etc. I'm starting to get a little nervous about my little explorer!!!

A Little of This and That

Sorry, long time no post! Not a whole lot has been going on besides just trying to enjoy the summer and survive during all of Chad's business trips!
Miranda turned 15 months yesterday and is becoming such a funny little girl! She is constantly jibber jabbering all day long! She "sings" when she hears music and she has tons of signs to communicate with us. She is also talking alot, but her speech has been a little less understandable the last 2 weeks as she's been getting some molars! Blaste molars are taking forever to come in and have been causing some difficult nights, no nap days and overall more crankiness than usual! They're finally breaking through, so hopefully she'll feel better soon.
The "Hair Fairy" still hasn't visited so she's still quite bald. It makes me a little sad! I wish she had more hair for me to style! But who's kidding thinking she would even keep it in if I tried! We still try the little pony tail, but I give up after about the 5th time she's pulled it out!
She doesn't have her 15 month check up for a few weeks, but I have lots to ask the doctor about. Like, why haven't you give me an epi pen? Seriously! A few days ago I saw Miranda eat something off of the floor. I couldn't tell what it was but just thought that it was a small dried apple bite. Unfortunately I think it was a peanut. She immediately started to get hives all around and in her mouth! I started freaking out making sure she wasn't having trouble breathing! Now, we've done hives before, several times with both girls, but never around the mouth! Thank heavens Benadryl helped and she didn't seem to have a problem drooling. Still not sure what caused it, but my best guess is a peanut! Here's a picture of her mouth after she was starting to get better and the swelling was going down. Her poor lip was starting to get huge before this! The hives were calming down and by morning she just had a rash, some congestion and drooling, all symptoms of a food allergy.
I've had a really hard time getting Miranda to eat lately. Heaven knows I'm already really limited to what I can give her! Unfortunately the food she isn't allergic to just ends up all over her face, hair and body and the stuff she is allergic to magically appears on the carpet for her to consume in a flash! On a brighter note, Chad's dad was in San Francisco for a conference and came to stay with us for a little while. He spent Saturday golfing with Chad, we enjoyed some Chilis and went to church together on Sunday. After lunch he had to head back and the girls were sad! They loved their Grandpa! It was nice having him here!!