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!

I'm Not Crazy

I repeat this to myself several times a day. "I'm not crazy, I'm not crazy, I'm not crazy." There is definitely something wrong with my son. No, it's not colic, no it's not just acid reflux, yes, I've tried the swing/bouncy seat/elevating the bed/every trick in the book and there is still no improvement. I hear all kinds of advice, and I just smile and nod. My baby isn't just a normal fussy baby, something is wrong. Unfortunately, what we suspect the problem is will turn our lives upside down for the next 2-5 years. It's more serious than I want to think about, and my stomach does flips and somersaults, my chest and throat tighten, and my jaw clamps every time I read another mom's story or another article on this syndrome. FPIES-Food Protein Induced Entercolitis Sydrome. We have no diagnosis yet, as we are still waiting for doctor's appointments with specialists who deal with this syndrome. There is no cure. There is no test for it. It is a clinical diagnosis, and the only treatment is to eliminate the foods that cause the symptoms. You can find information about FPIES and the difference between chronic and acute symptoms HERE. Daniel is experiencing the chronic symptoms through my breastmilk. Due to his hypersensitivity to the food proteins that are already broken down through my body, we are not starting ANY solids until we have our numerous doctors' appointments over the next month or two.

I am afraid. I am afraid for my son's life. I am afraid I will lose my milk supply. I am afraid to feed him or myself because it hurts him. My human nature has taken over and I've forgotten that God is on my side. So I dive into His word and remind myself that God is on my side.

So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.
-Isaiah 41:10

and if I get tired of holding this fear in my heart, He'll give me rest

“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.”
-Matthew 11:28-30

I wonder if God gave me this challenge as a way to pull me closer to Him. General statement here: Everyone always says the darker of a place you're in, the more you tend to rely on Him. Everything seemed to be cruising along almost effortlessly, and maybe I forgot during those easy times that God was the one making it effortless, so He wanted to remind me that I need Him. I have to not focus on the why's or the what if's, even though my heart and mind ask those questions often, and learn to trust that God knows the path ahead, and even if things get rough, He wants me, Daniel, and Jason to get through this.

For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.
-James 29:11