Hiding

I've been MIA. Hiding out. Avoiding. I wish everything could be normal. I want to eat more than just beef. I want to sleep longer than 90 minutes at a time. I want to not feel anxious and worried all the time, especially around food. I want to enjoy feeding my child, not fear it. As we approach Daniel's first birthday, I find myself feeling more fear and anxiety. We've made progress, but are not where the doctors would like us to be...but then again, what do they know? Technically, Daniel doesn't need anything except for breastmilk until he's a year old, and even then, he CAN survive on breastmilk alone. It's not an ideal situation for either of us, but we'll make it work. I'm not normally forthcoming with asking for prayers, but boy oh boy do we need them. I've seen prayer work wonderful things in people's lives, and if I'm going to keep this curent routine up, I need all the help I can get. So, here's my wishlist folks:

• For Daniel's iron levels to go up and/or hold steady
• For Daniel's body to detox all these wretched yeast it's holding onto from my rounds of antibiotics and steroids
• For us to pass a couple of nutrient dense foods so malnutrition doesn't become a concern
• For peace, calm, and acceptance in my heart as we trial foods and have possible reactions to deal with
• For guidance on which foods to trial
• For all of the other children and families dealing with this complicated syndrome

Please, if you have a special time when you pray everyday, add these items to your, whatI'm sure is already long, prayer list.

Waiting...

and waiting, and waiting. That seems like all we've been doing lately. Waiting for our colds to be over. Waiting for Daniel's teeth to come in. Waiting for antibiotics to get out of my system. Waiting for the new probiotics to come. Waiting to see if Daniel is reacting to the new probiotic or if he's just experiencing die off. Waiting seems to be the hardest part in all this FPIES mess. Now we are waiting to start Daniel's first direct ingestion food trial. He seems to be doing well with the pureed beef everyday, and so we're going to trial zucchini, peeled, seeded, fermented, boiled and pureed. Please pray for us that the trial is easy and that God will allow this food to nourish his body, not harm it, and if he reacts to zucchini, that it is a mild reaction with a quick recovery time. Our plan is to feed him 1 spoonful in the morning, then, you guessed it, WAIT with an ER bag ready in the car. God is the only one strong enough to get me through this. The guilt I feel, knowing I may be feeding my child something that could make him terribly sick is overwhelming!