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!

Just What I Needed

So I'm sitting in church this morning, half listening to the sermon, half occupying Daniel, and a very specific part of the sermon just happens to catch my ear. It's funny how God always sneaks things like this into my life. It was exactly what I needed to hear. The sermon was about Jesus being on the cross and feeling the weight of all of our sin on Himself and crying out to the Father, "My God, My God, Why have you forsaken me?" As the mother of a child with an illness, you experience many hardships. You may lose friends, feel stress about the health of your child, become angry at God, get in fights with your spouse, feel financial hardship while trying to feed your child and pay for doctors' visits and alternative medicine methods out of pocket, etc. Sometimes you may want to cry out those same words. BUT, you will NEVER EVER have to experience what it's like to be forsaken by God or feel the weight of the world's sin on your shoulders. EVER. You know why? Jesus felt it for us. And because God forsook Jesus as he hung there on the cross, feeling the weight of my sin, your sin, everyone's sin who has lived, is living, or will ever live, I will NEVER know what it's like to be forsaken by Him. I needed this reminder. Even though I sometimes feel alone and like God is not with me, carrying me, comforting me, and guiding me, He is catching my attention on a normal Sunday morning in church, as my mind wanders during the sermon while tending to my child's needs...

A Poisoned Mind

As I mentioned in an earlier post, there is definitely a different mind set when you decide to use GAPS to heal the gut for FPIES as opposed to the traditional trial and error and wait til your child "outgrows" it approach. With GAPS, there is some degree of pushing through symptoms, especially when you feel they are related to die off or detox. With the traditional approach, any sign of symptoms tend to cause bells and whistles to go off in the momma's head and she watches much more closely, sometimes pulling a food from the diet. GAPS focuses on healing and sealing the gut, so that any and all foods will someday be tolerated because the "leaks" of "foreign" proteins into the system are gone. The traditional approach focuses on trialing foods and watching for symptoms to find out if that specific protein will cause problems or a reaction. Unfortunately, it doesn't include healing. It's a waiting game. When will the immune system mature enough to not want to attack that specific protein, and when will the T cells finally forget about their earlier attack of that protein. GAPS doesn't recognize rotation diets for the sake of tolerating a food. You start with a VERY tiny amount of the food and if symptoms are seen, you remove it completely and try again in a few weeks after the body has had more time to heal. With the traditional approach, you start with a small amount, then if you get to a point where symptoms show up, but then back off the food to a smaller amount and they go away, you keep that food limited to a specific amount/day. For instance, a child can have 1 Tbs of carrots every other day and have little to no symptoms, but if they have more than that on any given day, or have it 2 days in a row, symptoms return.

I'm sure there are more differences, but these are the ones I have found to be most prominent for me. I am so blessed that I didn't have a long period of time thinking like an FPIES momma, and have transitioned much easier into the GAPS mindset. Everyone has a right to choose how they want to deal with their child's illnesses, so please don't take that as an attack on anyone who has decided to use the traditional approach to FPIES. I am just taking the path that I feel God has led me to, and He is blessing our steps down it so far. I meet more resistance, and get some eye rolls, but Daniel is showing GREAT improvements!


I'm ending with a little rambling from the mind of a sleep deprived momma...

I have a theory, that I have not had time to research or look into, but I'll share it as clearly as I can get it from my brain to my finger tips.

A lot of the foods that are common FPIES triggers are foods that are highly detoxifying or highly fibrous causing them to be harder to digest. My theory is that maybe FPIES is the body's way of saying, "WHOA! I am not ready for a detox/advanced food of this nature!" Our immune systems are there to help clean up and keep us healthy, so the fact that it has been shown to be an immune response makes sense. Detox and die off symptoms are similar, but not as extreme as FPIES symptoms. BUT if the body were being detoxed too quickly and too strongly, i believe it could produce a super strong immune reaction like the one seen with FPIES. Think about the food poisoning analogy that is often used: the body has something "foreign" introduced, and the body gets rid of it/detoxes as quickly as possible (vomit and diarrhea). Due to the leaky guts in these FPIES kiddos, and the immaturity of their immune systems, their detoxing symptoms would be much more severe, like food poisoning. Does that make ANY sense to anyone but myself? It's just a thought that was brought on by reading more about the GAPS process.

Update and Daniel's Current Regimen

As you know, FPIES blogs tend to talk a lot about poop. Just over the past 2 weeks or so, Daniel is finally having normal breastfed baby poops! This is a major step in the right direction! He now poops only 1-2 times a day, as opposed to 10-12, like before.

God has blessed us so richly with the ability to feed me my very expensive diet and to have found good probiotics. As of today, Daniel gets a 1/4 of the children's recommended dose for the probiotic we use and about 1-2 tsp of 100% grassfed beef broth. So far, things are going great, and he's still gaining weight and meeting milestones! As I said above, his poops are normal, and other than a few extra hiccups (common with adjusting to food other than breastmilk) and the normal disturbed sleep from teething, he has no symptoms that warrant alarm. I can't help but say it again that God has led us to the right path for healing! I pray daily that GAPS will be our family's answer to our digestive problems and that God has given us this diet to also help us have the chance that our next child will not have to suffer the way that Daniel has!

We tried using coconut oil for his dry skin a few days ago, and he was chewing on his hands...that night we were reminded where we have come from: screaming, gas, bloody mucousy bright yellow/green diarrhea. BUT, it didn't take him DAYS to recover, it took the 2 hours or so that he was up in the night, and once the diarrhea was over, he slept great and was his same old self the next day. Just a month ago, he would have been "off" and having symptoms for days following any kind of upset to his system. It's amazing to see how far we've come. I thank God every day for giving me such a happy baby in spite of all this mess!

Up next, we plan to finally get brave and try elk and bison, and possibly fish broth. Rotating the broths gives a better variety of nutrients and the good fats and gelatin that help heal the gut. Once we can get Daniel's gut a little more healed, we'll be able to start trying to add some veggies and fruits! I'm hoping we can find a fruit he'll tolerate before his first birthday so he can have a nice frozen, fruity treat on his birthday...if not, I have made a promise to myself to not be disappointed or mope about it. He is healing, and that is more important to me than him having a special birthday treat. He won't remember it anyway!

That's where we're at!

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!

Little House on the Prairie

If you're a woman, I'm sure you've read the books, at least once in your life time. Lately, I've been longing for the pioneer days. I always used to think I would have been better suited to grow up in the 60's or 70's due to my attachment parenting, breastfeeding, baby wearing, non-vaxing, parenting style, but the deeper I go with my research into using traditional whole foods to heal my son and my family, the more I feel I should have been born long before the 60's. I've become so enthralled with the traditional way of doing things, that I have actually searched our area for real estate on the prairie so I can live on a farm and raise chickens and goats and pigs, and have a root cellar and a dairy cow, and a cute little farm house for Daniel and our future children to grow up in. I've researched canning, preserving, fermenting, kefiring, soaking/sprouting of grains, stocks/broths for healing, becoming a homeopath or herbalist, homeschooling, etc. You name it, I want to learn more about it! When I think about it even more, I feel that God put me in the perfect era. I am different and unique. I am a pioneer of my own, banning together with and learning from others, trying to bring back these most basic of skills and ideals. By allowing this challenging FPIES diagnosis for Daniel, God has ignited a passion in my heart to learn more about how to use the gifts He's given us in a way to improve Daniel's health, my health, and my husband's health. He has given me the ability to share information with members of my family, and has increased my confidence when dealing with resistance. So many wonderful blessings have come from something I once thought to be a doom filled diagnosis! I'm blessed with the fact that I am learning about using these whole foods to heal through the GAPS diet as early in our journey with FPIES as I am. Once you get into the mind set of an FPIES momma, it can be hard to break into thinking like a GAPS momma. I'll be writing more on that in a later post, so now back to my regularly scheduled thoughts...Little House on the Prairie, yes, now where was I? Sleep deprivation anybody? I have recently looked into taking some classes in nutrition based on the traditional whole foods movement, sponsored by the Weston A. Price Foundation via Hawthorn University. As of right now, I don't have the time or money to pursue these classes, but as Jason climbs the corporate ladder and Daniel becomes more able to entertain himself for longer periods of time, I plan to make this dream a reality. In the mean time, I have discovered an amazing website and blog called GNOWFGLINS, Enjoying "God's Natural, Organic, Whole Foods, Grown Locally, In Season". On this site, there is a wealth of information pertaining to GAPS, Whole Foods, and Homesteading, and she offers a membership option where you can take online classes. I have found many other blogs devoted to these subjects also, and plan to compile a list for the sidebar here. I feel like a sponge right now, just soaking up every last drop of information set before me.

Jason and I have had many discussions concerning these subjects over the past few weeks and have decided that we have a goal! We eventually want to live out on the plains, east of our city, but close enough to "come into town" for activities and family events, on a small farm with chickens, dairy goats, possibly pigs, a dairy cow, a rather large organic garden, a greenhouse, and of course Jason had to add he'll need a big truck, lol. This is our ULTIMATE goal, and we know it will take time and a lot of work to get there, but we have also set some short term goals and are working on our plan to make this happen! Who knows, maybe in a few years you all will start calling me "Laura."

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?

My Heart Goes Out to You

It's hard to understand what FPIES children, mommas, and families go through. Before I had to deal with a child who wouldn't be considered "normal," I always felt compassion and sympathy for families of children with illnesses, but it was hard to empathize with them. Now, my heart truly feels the weight of the grief that comes with mourning the loss of the idea of a "perfect,"" normal" baby. This new found empathy has moved me. I previously posted that I was trying to sew more to give myself a creative outlet for my stress. I have been able to do this, and it really does help me feel more relaxed. I figured that if the sewing helps me, why couldn't I use that  stress relief time to help others too? So I decided to set a goal to use my sewing and/or crafting skills to complete at least 1 project a month to donate to a charity/children's hospital/shelter. If you look to the left of my blog posts, you'll see a link to a website called Hopeful Threads. This website has been my inspiration. I will be following along with her projects, but if I feel that I cannot finish her posted project, or my skills aren't good enough, then I will choose something of my own. I will post my finished projects, along with links to the charities they are being donated to. I feel that God has given us so much hope and has been so gracious to us in these past couple of months, that I need to share that with others in need. Please pray that I have the time and energy every month to complete these projects!

One Foot in Front of the Other

So after another uneventful doctor's appointment, we've just been doing the same old same old. One useful bit of information we received from this GI appoinment was that Daniel is not anemic! I said a huge prayer of thanks the second I heard the nurse say that his test results were "completely normal" in her voicemail. If I hadn't just woken up, I'd have been jumping up and down, dancing around like a mad woman. God has answered another prayer with a big fat postitive for us! I can't imagine how much worse this could be if I wasn't able to eat such an iron rich food source, thank you grassfed beef!

Daniel is still growing, and due to my extremely limited diet, he is doing VERY well. Almost no symptoms whatsoever. He's sleeping better, his poops are what I like to call peanut butter pudding consistency, and reflux is almost non existent! He is rolling over now, but hasn't realized that he can continue to roll in the same direction to get somewhere. He loves singing and dancing in his jumperoo, along with "walking" the kitchen in his walker! He smiles and laughs just like any other "normal" baby when his guts aren't being torn to shreds by his overactive T-cells! I am so thankful that he is continuing to thrive, and that God is giving me the resources and strength to continue caring for this wonderful blessing He placed in my life! This past week has made me almost forget that he has FPIES and MFPI.

BUT...

I was reminded the other day that I have to keep slow and steady. I tried eating grapes. I love grapes. I have eaten them in the past when things were still muddy, and suspected they might have been a problem. They were staring at me in the fridge just screaming my name, so I gave in due to his amazing progress...bad idea. We spent yesterday, about 24 hours post grape ingestion by me, cleaning up lots of vomit and spit up. I'm just happy to say it hasn't affected him in any other ways, YET. I'll continue to keep a watchful eye on him for the next few days, but he seems to have recovered quickly from this impromtu trial.

For now, that is the update I have for you. We just keep putting one foot in front of the other, at a steady pace. We aren't to the point of running this race yet, but God is providing us with everything we need to walk it, and in the darkest times, when we are stumbling, He's carrying us in His arms.