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.

On a Whim

So I've been feeling desperate lately. We've been sick with a pretty nasty cold and I'm tired and run down and Daniel is teething, yet again, so I've been feeling sorry for myself. I'm fed up with eating only beef and I'm sick of having to feed my kid every 2 hours, especially since he won't take a bottle. I'm hate the crying and screaming when I have to force him to drink the beef broth. Everything just kept adding up and I fell to my knees, begging God for help!

It took a few days, and lots and lots of prayers, but He answered me last night. I had boiled some ground beef to make and freeze meat puree and broth for Daniel and I decided, on a whim, to try feeding him the puree again. Last time we tried he gagged and spit it all out and then proceeded to cry and scream until I washed him off and nursed him. Last night, he ate it off the spoon and then sucked on the spoon to make sure he got every last drop! No crying. No whining. No screaming. Just a happy baby, opening his mouth for the next spoonful. I almost began to cry. I don't even have words that describe the elation and joy that filled my heart last night. God gave me a huge boost of confidence and reminded me that His timing is perfect.

Daniel ate when God wanted him to. His teeth will come through when God wants them to. He'll start to crawl when God wants him to. All of these worries running through my head and God jumps in and says, "Chantelle, relax, kick back and let me take the reigns for a while. Enjoy Daniel and let him take his time doing the things he's 'supposed to be doing already'. I'm in charge and on your side, so don't worry!" So, that's what I'm going to try to do. Sit back, relax, and enjoy the ride, because Daniel is one amazing little guy, doing some amazing stuff, and I don't want to miss a thing!

A Surrendered Marriage Challenge

Dealing with the adjustment of becoming a parent to a healthy child adds stress to a marriage. Dealing with the adjustment of becoming the parent of a child who is less than healthy just adds to that stress. I had to go through the mourning process in June of 2010 when we lost our first baby and to my surprise, those feelings came rushing back as I realized I was mourning the loss of my idea of the perfect, healthy child upon finding out Daniel has FPIES. No fun filled dinners and funny, food smeared all over the face pictures for us. No cheerios or the infamous "puffs" every baby loves. No easy, fun, pity-less conversations with people about what foods Daniel eats. As I went through this mourning process, my husband has always been at my side, cheering me on, holding me up, and comforting me, just as he was almost 2 years ago. The amount of stress this monster called FPIES has put on our marriage is beyond what I ever thought we could handle. With God's help, we're still holding strong. In this time of stress, God has pointed me to something wonderful! Intentional by Grace is hosting A Surrendered Marriage Challenge. I have signed up for this in order to help jump start the strengthening process. Whether your marriage is strong or you're barely holding your head above water, prayer can always help!

If You're Happy and You Know It...

...Have a 6 month photo shoot! I have to say that I am so blessed to be this little guy's momma! He has taught me and my family a true lesson on happiness and joy! After all the pain and trials my little guy has gone through, he still presses on with big smiles like the ones pictured below!

 

Next time you feel bad or are in pain or are going through a rough patch in life, come back and take a look at how this little guy who has experienced so much in his short little life can still be all smiles and be inspired to smile yourself!

All photos are the work of the wonderful and talented René Tate over at René Tate Photography!

You Can Lead a Baby to Broth...

This week, we start pushing grass fed beef broth! I'm nervous, but excited. Our first attempts last week were unsuccessful. Daniel has no interest in food. Kind of disappointing, but a blessing at the same time. We need him to have a little bit of interest so he'll want to try the broth, but it's nice that I don't have to be worried about him reaching onto people's plates and putting stuff into his mouth that could cause a potential reaction. We're going to start having family dinner time. Hopefully, sitting at the table in his high chair, surrounded by people eating, will begin to peak his interest in the broth I'll pour onto his tray. Keep us in your prayers that we skate through, reaction free, and can then try bison or elk!

Some of you may be wondering why in the world I would be feeding my barely 6 month old baby meat broth. You may be asking yourself, "Don't you usually start with grain cereals?" Why yes, most doctors will tell you to start with grains, then veggies and fruits, then meats. My kid is unique. Due to the FPIES, we have a very high chance of him having a severe reaction to grains, specifically rice and oats, so those are out of the picture. "Why not sweet potatoes or peas?" Well, those common first foods are also very common FPIES trigger foods, along with a few others that you would normally feed first. So, for now, we know he handles beef through my milk, and he needs the gut healing properties of the broth, so grass fed beef broth it is! We're going GAPS, as it has been around for over a century, and has been proven time and time again to heal. God may not be snapping his fingers and healing Daniel in the blink of an eye, but He is giving me this protocol to follow. He's giving me the hope that other success stories provide. He's giving me the support of other mommas who are trusting in whole foods to heal their children from the same and similar issues. He's also giving me the support of a very loving family who is helping me to raise my son during this confusing stressful time! They say it takes a village, right?

Missing

Cabin Fever is hard enough to deal with, but throw in a sick kid who is attached to you (literally) every 2 hours, sleep deprivation, the same old daytime TV, and the inability to eat what's in the pantry and it makes it much more difficult. My days just seem to melt together. I rarely know the actual date, I just keep doing the same thing day in and day out, because right now, I have to be a machine. I have to keep going for my son.

I miss people. Specific people, yes, but just human interaction in general would be nice. I'm hoping my current friends will be understanding of my situation and not write me off just yet. I rarely get to leave my home or my parents' home. I have yet to be out on a date with my husband since my son was born more than 5 months ago. The only things I get to do are quick grocery runs and previously, an appointment or 2 at work. I can never be gone more than about 2 hours at a time because Daniel hates bottles and will only eat a very small amount from one, never enough to sustain him until the next feeding. If I get home and he ate that small amount just an hour before, he screams til I nurse him, then he pukes because he ate too soon. Something I've learned about my son's digestion is that he needs that full 2 hours to digest the first feeding before eating again or his tummy gets upset and stays upset for a few hours. I don't fully understand it, but from what I've gathered, it has to do with bile production and stomach acid not being at full strength because they're still working on his last meal. When you throw the new milk in there too soon, it doesn't get digested properly and I end up with a very upset baby. Another reason I have to be around to nurse him is my milk supply. I'm eating a very limited diet, and therefore my calorie intake isn't as high as it probably should be, making it harder for me to make enough milk to sustain Daniel unless he nurses from me directly as many times a day as he can. I need those nursing sessions to tell my body to keep making more milk, because unless you pump exclusively and set yourself up with it from the beginning, pumping doesn't keep your milk supply as abundant as a baby does.

Talking about my milk supply reminds me how much I miss food. I used to love watching cooking and food related shows, now, I avoid them like the plague. I loved reading cooking and recipe magazines, but now when they come in the mail, they go in the "read later" pile. I love experimenting in the kitchen and figuring out new ways to make gluten free taste yummy. I've started sewing more (in all my free time, lol) in order to keep a creative outlet for myself. So I think that's how I'm dealing with my inability to create tasty treats in the kitchen. Having to go through this really makes a person realize how much food tends to be the center of gatherings. Why does it always have to be about food? Can't you just have a game night/movie night with a few little snacks, have a visit with family without a meal being involved, meet a friend for something other than "lunch?" It's tough enough trying to figure out how to have people over and eat only what I can, but going out to eat is not even plausible for me.

I can't go anywhere without a plan. This kills me. I miss being spontaneous. Unfortunately, I know a lot of mommas go through this when they have a child with any type of food allergy or disability. I would love to be able to just grab the diaper bag and go, but people with "normal" children don't have to worry that there might be an hours worth of vomiting and pack tons of extra clothes and burp rags, or hours of screaming in pain, or that their child might accidentally chew on something that could have trace amounts of food proteins on it, or that someone might feed their child/kiss their child without washing their mouth out/let their child chew on a finger with lotion or residual food/etc.

Some may call me anal or over protective, but I know in my heart that I'm just keeping my son safe. It's sad that my social, food loving, spontaneous self has to suffer because of this, but I think of how things will eventually get easier as he grows older, and hopefully in 3-5 years, FPIES and all the challenges that come with it will be nothing but a memory. People live 80-100 years nowadays right? What I'm missing over these next 3-5 years will be well worth the rest of our lives being exciting!