This is Emillia's story as seen through our eyes...... Emillia was diagnosed with FPIES right before christmas of 2009 she was almost 10 months old. We have had our challenges, our ups and downs, numerous tears, and even some laughs through our experiences.
We have met some amazing people during these trialing times and we are very thankful for them and all that they have done for us!
Emillia is a very sweet vibrant little girl as you will learn reading through this blog. She is a trooper and always seems to have a smile on her face through even some of the hardest times.
Emillia has taught us many lessons in life already and i know she will continue to do so, she is our princess!

God grant us
the serenity to accept
the things we cannot change..........

Tuesday, November 2, 2010

FINALLY! Food Trials again!

We took Emmy to see Dr. Helm about 2 weeks ago and the news he gave us made it feel like christmas morning!  He was very surprised that the only meat she was on was lamb, said she def needed to start another meat, yet was not surprised that she failed turkey and legumes. He was very patient with Emmy and talked to her like he'd talk to you or me which was nice to see again. He gave us the following list of foods we could trial with her: Quinoa, corn, soy margarine, olive oil, fish, pork and venison. So far we've trialed quinoa and corn and she's passed both of them!!! That was such a great feeling considering she hadnt really had a new food since her diagnosis last December.
   Emmy is now able to have quinoa, (inca red, flakes, regular and quinoa pasta!!!) she also passed gritts (corn) and thank goodness for KIX! (FPIES-Emmy tested mother approved!) Kix have been a blessing, it is the first food she will actually eat on her own and ask for more, its hard to keep her out of the kix box any more!
      As far as her other new "safe" foods go we have to hide them every time she gets them, that is proving to be a challenge, she doesn't take long to realize what we are doing. She def has phobias towards textures/new foods and i dont blame her. She associates new foods with getting sick. Sometimes i wonder if we are to blame for that, ever since her diagnosis we read labels like crazy and we ask her if she thinks she can have the food or not.... she's not used to being able to have so many "new" foods.
   She HATES gritts, absolutley despsises them, cries when they are set in front of her and wont touch them. The first time i gave her kix we were at the grocery store doing some shopping and 3 of my nephews were with and they were having treats, i stood there thinking to myself "what can i give M for a treat?" Kix was the first thing that popped into my mind knowing she passed her corn trial. I gave her about 12 of them and she gobbled them up, i was impressed. she then asked for more and about the 3rd "more please" i started feeling bad, i knew she should be ok having them but still worried about a reaction so i cut her off.  I turned around for 10 seconds and she had the kix box open, between her legs and was eating them by the fist full, i couldn't help but laugh at the sight! Its not every day you can enjoy something like that with an FPIES child, now if only i could get her to eat her gritts like that!!!! On our way home however i was in tears, she started getting the "glazed" spacey look in her eyes and started getting pale, she was also wipping her mouth telling me "yucky" NOT a good feeling, i had my phone beside me ready to call 911, worried that she was going to start having an episode while we were on the highway, its been almost a year since she has had her last episode. I felt horrible knowing that i probably allowed her to have too much and started worrying that if she was going to have an episode how bad itd be because of the amout i had allowed her to eat. With her previous episodes it took a pea sized amount to set her off. As a parent of an FPIES child i knew i had broken numerous cardinal rules, too many to list. However, great news....... she didnt react!!1
    Our next step (trial) will be one of her allowed meats (fish, pork or venison) most likely venison seeing how our families are so big into hunting. The following will be either her soy margarine or olive oil..... Im enjoying her new foods probably more than what she is, i feel like a kid in a candy store shopping for her now. With the new foods Dr. Helm has given us the ok to trial it has doubled her allowed food intake(as long as she passes all of them) that is my next concern, i feel like we are going to strike out with one of them soon, what are the chances she will pass all 7? we've been lucky with no episodes yet but not having any new foods kept them at bay.
   We will continue taking her syndrome and trials one day at a time, hopefully and continue putting one foot in front of another meeting new milestones with her syndrome.

1 comment:

  1. I am SO glad you went to see Dr.Helm and got a better eating plan in place for Emmy!! So,so,so glad. Praying she continues to do so well.