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.
prayers being sent. Cyber hugs too...
ReplyDeleteah I was just thinking of you this weekend. Thank you for the specific list of how to be praying. I remember how the one year mark was so incredibly depressing, and can not imagine the restrictions you face every day. You are a brave mama. As my husband reminded me last night, it feels like forever but it is a short piece of a bigger picture. Dont forget grace for yourself, too.
ReplyDeleteMy son is 4 and has severe FPIES as well to many foods. I breastfed him exclusively until he was 2 1/2 years old just to give him the nutrition he needed. I had to cut all milk, rice, oats etc out of my diet while I nursed him. It wore me down to the bone but it's your child and you will do anything and everything to help them. I understand everything you are dealing with and will pray for your child each night when I pray for my son. I is a horrible and scary syndrome. My son just had an episode in December that landed him in the hospital for 3 days from dehydration. He touched his new baby sister's hands after she had them in her mouth (after drinking a bottle of milk based formula) and then put his hands in his mouth. That little bit was enough to send him into a full blown FPIES attack. It was a nightmare because at 4 years old, he is no longer a baby who forgets easily. He is petrified of even going near his sister now. It's a shame. I wish there was something that could be done to help these kids. I have not even sent him to school yet out of fear of another kid eating on of his trigger foods and touching something my son touches. It can make you crazy with anxiety. Let's just keep Praying......
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ReplyDeleteJust found your blog :)
ReplyDeleteSorry it's so tough, and so dark right now. We have done the exclusive breast feeding until he was 2 as well, we are in a good stint right now, getting some food in, slowly but surely. Prayers for you and your little man.