Slow and Steady

Over the past few weeks, we decided to bite the bullet, conquer our fears, and with a lot of prayer and the support of some amazing mamas, start D on a rotation of broths! Boy oh boy, has this been an adventure. So far, D has had each of 5 different broths about 3 times. He has not had any FPIES reactions, but I wouldn't say it's been easy, and we have a ways to go. He gets Beef, Elk, Salmon, Buffalo, and Snapper in rotation, every other day. We are currently giving him 1 1/2 tsp by medicine syringe because he still refuses a bottle and just wants to splash the broth around when given a spoon. I'm sure the taste is definitely not something he enjoys much either. When you're used to sweet, creamy breastmilk, why would you want salty or fishy or gamey tasting broth?? Next rotation we up it to 3 tsp every other day. He seems to be tolerating them pretty well, but still has some crankiness, restless nights, gas, and mucousy poops, but he's not in pain from these symptoms, and all of them are usually related to die off. They don't really concern me because it's just his body doing what it's supposed to, healing itself. God created our bodies to heal and by giving him these nutrient rich, gelatin filled, good fat containing broths, D's gut is healing!

Please keep prayers coming for Daniel's healing gut! We are on the right track here and I thank God daily for leading me to GAPS to not only heal my son, but to heal my whole family also!

An FPIES Birthday

 

Celebrations and holidays can be very hard on FPIES families and GAPS families because they are often filled with high fructose corn syrup, sugar, grains, and many of the common FPIES trigger foods. Our culture tends to place the focus on food as opposed to the actual event. Although I did have food at Daniel's birthday party for the adults, there were only grandparents and an uncle in attendance, so it was very low key. We focused on watching Daniel open presents, he had a present cake, and blew out a candle after we sang "Happy Birthday."

He seemed to have an amazing time and slept so well that night from all of the extra attention and excitement! He'll never know that his party was "not normal" and he didn't even realize that he was "missing out" on the smashing of the cake experience. He loves his Mama milk and still doesn't show a major interest in food. It saddens me when I hear mama's saying their doctors told them that their babies NEED more than just breastmilk to grow and develop. I'm not a doctor of course, but I have a healthy, smart, energetic little boy who is thriving at the age of 12 months on breastmilk alone! What more could I ask for?!

Our (Not) Vacation

Daniel and I had a nice, although somewhat stressful, vacation. We visited friends and family during the midwestern heat wave. 100+ heat indexes almost the entire 3 weeks we were gone. Weird looks from people at rest stops while I cooked hamburgers in the express cooker. Having to explain myself to every new family member or friend we visited. Keeping a VERY close eye on Daniel to make sure he didn't put anything in his mouth or get kissed by unwashed mouths and held by unwashed hands. I vow to never travel with Daniel again until he's healed of these numerous food intolerances. It was definitely worth all the trouble so he could meet all his family members who hadn't seen him yet. It was awesome to see him with his great grandparents and his cousins and aunts and uncles. We only had a couple of reactions the whole 3 weeks so my paranoia and overprotectiveness paid off. I'm happy to be home and back into our old routine. The trip made me really value having our safe zone for Daniel and renewed my spirits about feeling like a shut-in. We may have no social life right now, but it's far less stressful this way for us and in a couple years, maybe sooner, we won't have to be so careful anymore.

My How Time Flies

It's been a while. We've been busy with summer vacation, a birthday party and life in general. We're still kind of hiding from everything. Trying not to rock the boat. Avoiding doctors. I have a lot of catching up to do, and I plan to do it...just not today. Daniel's first birthday party was last night and I am exhausted from all the prep work it entailed. I'm writing this as an IOU for the many blogposts I have to write! In general, we are all doing well!

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!

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.

Dr. Know It All

Our doctor appointment with the allergist at Children's in Denver left a lot to be desired. No new information was given to us.

He just confirmed that we're dealing with non IgE mediated reactions to foods. DUH! I'm not the parent who comes into an appointment with a specialist without doing her research first. I'd already seen 2 allergists before this appointment, 1 of which was actually helpful. I've been reading every medical journal article I can find on the subject of FPIES and food intolerances. I've been talking with mom's who have walked this same path and reading their stories through blogs and email contact. I went in there as prepared as any parent can be when dealing with FPIES. There are no rules, and every kid is so different, so you have to do what is best for your child as a whole.

I expressed my extreme desire to continue breastfeeding through all this mess, and was greeted with some opposition, which I figured would be the case. The allergist told me that elemental formula may be our only option as things progress. BLECH! Both formulas available contain over 50% corn syrup solids and they cost a pretty penny. Daniel reacts to broken down corn proteins in my milk. These corn syrup solids can set your child up for a lifetime of health problems (obesity, diabetes, more allergies). One FPIES mom had her son, who reacts to corn, on an elemental formula for 5 months. His intestines were scoped at that point only to find craters in the walls equivalent to those they would find in a severely malnourished child in a 3rd world country. You can find her story about elemental formulas HERE and HERE. Often, you have to fight the insurance company for coverage, and even when approved, you'll still be spending quite a bit. So why would I want to feed my child a formula that can cause more harm than good, and have to pay an arm and a leg for it? God is working to help us find a baseline with my breastmilk, and we are getting SO close! Hopefully, by the time he sees the GI we'll have it figured out so I can start adding more foods into my diet!

The allergist said I need a calcium supplement, which I already knew. I've been planning for a while to trial some calcium rich foods in my diet (organic unsulphered blackstrap molasses, broccoli, bok choy, figs) due to the difficulty of finding a supplement free of Daniel's triggers. Plus, the body absorbs nutrients from whole foods, much better than from a lab created pill. I also need vitamin D, which is easy here in good ol' sunny Colorado! I have a supplement that is vitamin D suspended in olive oil with nothing else, so that could be an easy addition as long as olive oil doesn't bother him.

Their biggest concern was Daniel's iron level, which is something I've been concerned about too, due to his daily blood loss through his diapers. He decided not to test him that day because we have a GI appointment in 10 days and he didn't want to do any more needles than necessary since the GI doctor will probably test his iron levels. Something I've learned in my research is that these kids with "leaky guts" have an imbalance in the bacteria in their guts. The bad bacteria tend to feed on iron. On top of him bleeding on a daily basis for the past 3 months, these bad bacteria are eating all his iron. When you give a child with this problem an iron supplement, the bad bacteria multiply, causing an even worse imbalance. This cancels out the progress in healing that may have happened. It's a very vicious cycle! I plan to combat the vicious cycle by using probiotics in my diet and starting Daniel on a safe one, and only using iron rich foods (enter blackstrap molasses again and of course, my 2-3 lbs of grass fed beef per day) to up the iron content of my breastmilk, which is more bio-available than supplements anyway. In order for the body to absorb iron, it needs vitamin C, that's where my brussels sprouts and mangoes come in handy.

I don't feel that this allergist is going to be the right fit for our team, but I think we have to give him another shot since he is one of the "best in the country." I may not be a doctor, but I'm definitely not an idiot, and I won't allow myself to be backed into a corner just because there's an M.D. after his name. I am the parent, and I get to make the decisions about what is best for my child. After all, I am the one who grew him and pushed him out pain med free, I change his dirty diapers, clean up all the vomit/spit up, wipe all the tears, comfort away the pain, eat next to nothing to keep him alive and growing, I am the one who knows him best.

Now that I think about it, I'm wrong. I don't know him best. God does.

PSALM 139

You have searched me, LORD,
   and you know me.
² You know when I sit and when I rise;
   you perceive my thoughts from afar.
³ You discern my going out and my lying down;
   you are familiar with all my ways.
⁴ Before a word is on my tongue
   you, LORD, know it completely.
⁵ You hem me in behind and before,
   and you lay your hand upon me.
⁶ Such knowledge is too wonderful for me,
   too lofty for me to attain.
 ⁷ Where can I go from your Spirit?
   Where can I flee from your presence?
⁸ If I go up to the heavens, you are there;
   if I make my bed in the depths, you are there.
⁹ If I rise on the wings of the dawn,
   if I settle on the far side of the sea,
¹⁰ even there your hand will guide me,
   your right hand will hold me fast.
¹¹ If I say, “Surely the darkness will hide me
   and the light become night around me,”
¹² even the darkness will not be dark to you;
   the night will shine like the day,
   for darkness is as light to you.
 ¹³ For you created my inmost being;
   you knit me together in my mother’s womb.
¹⁴ I praise you because I am fearfully and wonderfully made;
   your works are wonderful,
   I know that full well.
¹⁵ My frame was not hidden from you
   when I was made in the secret place,
   when I was woven together in the depths of the earth.
¹⁶ Your eyes saw my unformed body;
   all the days ordained for me were written in your book
   before one of them came to be.
¹⁷ How precious to me are your thoughts,^[a] God!
   How vast is the sum of them!
¹⁸ Were I to count them,
   they would outnumber the grains of sand—
   when I awake, I am still with you.
 ¹⁹ If only you, God, would slay the wicked!
   Away from me, you who are bloodthirsty!
²⁰ They speak of you with evil intent;
   your adversaries misuse your name.
²¹ Do I not hate those who hate you, LORD,
   and abhor those who are in rebellion against you?
²² I have nothing but hatred for them;
   I count them my enemies.
²³ Search me, God, and know my heart;
   test me and know my anxious thoughts.
²⁴ See if there is any offensive way in me,
   and lead me in the way everlasting. 

God is the all powerful one in this situation. I don't know how I would get through this without Him. Not only does He know Daniel best, but He knows me best too. He is the one who gives me the strength to continue on this rocky road every day. He leads me when I'm lost. He carries me when I'm weak. He gives me the knowledge to make the best decisions for Daniel whom he has placed in my care. Everything I have comes from Him.

Even our appointment with Dr. Know It All...

Oh Glorious Baseline...

I think we've almost found you! Thank you so much for all of the prayers from those of you who have been praying for baseline for Daniel! I think we've almost made it! His poops are yellow and seedy, still quite loose, but they haven't looked this normal in over 2 months. He's sleeping better for naps and overnight, even though he's still up every 2-3 hours to nurse, and his mood is greatly improved! I am beyond excited right now because this means I've found a combination of foods that I can successfully eat, along with the new found ability to start adding foods one by one into my diet to test their safety for Daniel! It seems God is showing me His timing is perfect once again, because as you'll see from my next post, the doctors are losing faith in my breastmilk.

Dear Father in Heaven, you have once again shown me how awesome you truly are! I thank you for answering our prayers by helping Daniel and I find a combination of food that works for us. Please continue to bless me with the knowledge to figure out what foods to try next and keep us on the path of healing. Put the right doctors in place to give Daniel the care he needs. In Jesus name, Amen.

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!

What Is This You Speak Of?

From the FPIES Foundation homepage:

	"Food Protein-Induced Enterocolitis Syndrome is a rare, severe food allergy of the gut. Classic symptoms to this allergy are delayed following food ingestion (~2hrs or more) and include profound vomiting (often to bile), diarrhea and dehydration. These symptoms can quickly lead to lethargy, change in body temperature and blood pressure, and in severe cases, sepsis-like shock. Immediate medical attention is needed for IV hydration and monitoring.
FPIES symptoms can also include persistent reflux, abdominal pain and mucous and/or blood in stools. Multiple food exposures may occur before a reaction is seen. Delayed reactions are also common. Please note that each child is unique and your child may experience their own range and intensity of these symptoms. Please seek medical advice if your child is displaying any of these symptoms." That about sums it up right? WRONG! Each child is so different and each child reacts in their own unique ways. Some of my posts might be a bit "gross" to all you lovely readers, but it's a part of my daily life! Daniel's symptoms of reaction include: Reflux Vomiting Vomiting to Bile Stomach Pain Gas Pain with Pooping Diarrhea Blood in Stool Mucous in Stool Hives Diaper Rash Pin Prick Rashes on Chest, Neck, and Trunk Cradle Cap Sleeplessness/Restlessness He has blood and mucous in his stools on a daily basis, although I am trying to fix this by rotating foods through my diet in order to make sure his system doesn't get overloaded with tons of the same food protein. Yesterday morning, he vomited about every 10 minutes until it turned green/yellow and mucousy about an hour later. All I could do was hold him across my lap with a receiving blanket ready to catch the next vomit, and try to keep him distracted in between. People didn't see the dark side because I didn't feel that they needed to, but I guess writing this blog has changed that. People look at pictures of Daniel and say, "He looks so healthy and happy," and I wonder why they would think I would take pictures of him draped across my lap, crying and vomiting? Why would I want to freeze that moment forever? People look at Daniel and say, "He's such a big boy!" That's because he nurses every 2 hours, at least, and most of the time it's because he needs comfort from the rumbling in his guts. Here you can find an article titled "Empathy," written about reflux, that a mom at the Protein Intolerant Child Foundation tailored to fit FPIES and MFPI(Multiple Food Protein Intolerances). It explains most of my feelings over the past few months while we were in limbo. It's a good reminder of how much words can hurt and/or help. Now you've got the low down on what FPIES is and how Daniel's body reacts to food proteins through my breastmilk. His body, specifically T Cells, attack his stomach/intestines/colon like he's eaten poison, every time I eat one of his trigger foods. This is why I have had to eliminate so many things from my diet. I still don't know what foods are safe for him, and we still haven't reached a good baseline(no symptoms of reaction present) for me to work off of. That is my goal. Find baseline. If  you like to pray for specific things, pray for baseline for Daniel. I know that God can heal my son if He wants to, just like He could have saved Jesus from being crucified, but God's will isn't always what we WANT, although I've always found that it does provide what I NEED. What I need right now is baseline for Daniel so we can press forward and hopefully add more foods to my diet, and then start him on solids. I love my son more than I ever imagined possible, but it's a drop in the bucket compared to the love God feels for him. He doesn't want us to hurt or suffer, He wants us to be successful, and in order for us to be successful, we need to reach baseline.

Peace of Heart

Have you ever gotten  news that was not neccesarily "good" news, but felt a million pounds lighter after hearing it? Yesterday I got that news. When the doctor said, "FPIES," without me even mentioning it, I almost squealed with delight! You FPIES mommas might be wondering, "What the...?! Are you nuts?!" I think I already answered that question in my first post. You see, when you're in a constant state of limbo, with no support from a medical professional, and your kid doesn't LOOK sick, getting a concrete answer is like having the heavens open with a group of angels singing the hallelujah chorus and God's glory shining on you, warming your cheek (and heart for that matter) like the sun. Yesterday was a HUGE blessing. That's the way I am choosing to see this diagnosis. I know we'll have dark days filled with vomit, diarrhea, and crying, but now, I have an answer as to why. So with that, I will end with a prayer of thanksgiving!

Dear Father in heaven, I thank you for bringing me answers about Daniel, and for giving me peace in my heart about the answers. Please continue to guide us in this race you have marked out for us. You are a truly gracious God and I thank you for loving me and my family. I thank you for blessing me with an amazing son to care for, along with the resources and people neccesary! In Jesus name, Amen.