REcalculating and a LIST

We've been out and about a lot lately.

We went and celebrated the life of my grandma last week.  If a funeral can be beautiful, this was the one.  My grandmother left a legacy of love and kindness.  Over and over we were told of how she touched peoples lives in love.   She lived 95 years and it was not an easy life by any means at all.   A diary of hers was found.  She ended many entries with a line from a hymn, or a bible verse, or something she was thankful for.  She choose to be thankful in everything, and love everyone, no matter the circumstance.   She was a wonderful woman, one I'm very proud to say was my Grandmother.  I want to be just like her when I grow up, and hopefully walking this journey of FPIES has got me started. 

And so back to FPIES we go.   We did nine days of pumpkin, and it was deemed a past.  We did however see some stuff.  Stuff that will surely make me seem or go crazy.   The stuff we saw, was a red cheek that looked like he was running a fever about 2 hours after he ate it.....  I would have taken it, if that was all we saw,  but around Day 6 he started waking up every 40 mins.  ALL NIGHT LONG.  sigh.  This happened 3 nights in a row, then I,  in my semi conscious brain,  decided (mostly because I forgot to thaw some out) to give pumpkin a day off.  Well if I  didn't get a 3 hour stretch of zzzzz's that night.  Dang Pumpkin..... couldn't just be an easy pass.   And so we quit pumpkin for a few days while I  tried to figure out our next move.  I didn't want to pull it completely, but I also didn't want to keep giving it to him IF these were the beginning signs that maybe his little body couldn't really tolerate it so many days in a row.   I don't blame his little gut,  I mean I get it.  WHO really wants to eat pumpkin every single day in a row (or any)?   But I keep telling Levi.  Beggars can not be choosers, and we be the beggars. Thus the recalculating began.   I went back to our rotation days.  NOW you may call me crazy.  5 veggies.  Yes peeps, you read that right.  5.   Here goes the list.  Pumpkin, celery, cauliflower, zucchini, and carrots.  We have done one bite of each of those in a row.  Then he got a runny nose and really mucous y cough, BUT so did Silas.  Sometimes I think God kinda lets someone else get cold symptoms before Levi does.  Cause you see.  I become a doubter when Levi gets sick.  He perfectly healthy before we give him food and most often (well kinda like ALWAYS) by Day 5 he is either sick or showing signs of becoming sick.   So I get scared and panicky and quit, falling back on MY safe, nursing.  But lets get real, I can't nurse the dude till he's 5 (or longer) eek.   Not gonna lie, even as unpleasant as that sounds, I am tempted to DO just that.  But that isn't what God has planned for us, so I will keep on, keeping on, and most often when we do that, we get over that hurdle, unnerving as it is, and find something great on the other side, like a list.  A list of things Levi can eat.  Even if it is one bite a day.  Cause that one bite builds to 2 then 3 and before you know it becomes  3 whole ice cube sized portions a day..... like we have with beef.  So today I would like to share our list of things that Levi is eating.

All of the below is given everyday with no concerns:

Broth: Beef, Pork, Fish, Buffalo, Deer

Grass Fed Beef meat (up to 3 ice cubes of puree in a day)

Sauerkraut, mostly the juice, but some tiny pieces of kraut as well.  (you may think this is bizarre, and that I may be a slightly silly mom giving him kraut juice,  but I would like you to know that Levi is obsessed with it.  It is by far his FAVORITE thing, and he begs for it.)

Tea:  Nettel with a touch of honey
         Yellow Dock

One full capsule of a pro biotic

Homeopathic remedies that are helping with heavy metal detox, and iron absorption


 Here is what we are just in the beginning stages of, but have seen no major reactions:

Peppermint tea with a touch of honey


Veggies: Pumpkin, celery, cauliflower, zucchini, carrot

Isn't this AWESOME?!?!  In January we had NOTHING!  Whoop!  God is forever faithful!!

I do ask for a prayer request though,
Levi is having a very hard time (he can't) swallow anything that is not in liquid form.  Could you please pray that this may be a concern that we can cross off our list soon!  

Grandma

All Heaven Stands today.

Today they welcome another one home.  My Grandma.  Today she is free from all pain, all sorrow, all heartache.  Today she rejoices.  She dances.  She sings with angels.  Her eyes get to feast on colors that we have never witnessed.  She gets to hug those who have gone before her.  A husband.  Siblings.  Friends.  She is meeting people like Adam and Eve.  Job.  Daniel.  Ruth, and Naomi.  What a glorious day!  But not only that she gets to do it again tomorrow and the day after.  She is in Heaven.  All Heaven stands today as Jesus gently cups her face in His hands and looks adoringly in her eyes and says "Welcome Home my daughter".  You have won the race Grandma.  You did it with beauty, and grace and forgiveness.  Welcome Home!!

Peter, Peter....

Pumpkin eater.  That's right folks, I think we did it.  Passed pumpkin.  Day 6 today, one bite everyday.   Yellow Dock tea is going down just as good.  Can I get a little happy dance?

“Our mouths were filled with laughter, our tongues with songs of joy. Then it was said among the nations, “The LORD has done great things for them. Psalm 126:2”

A year ago

today we were admitted into London's Children's Hospital.  It had been a LONG hard winter of much sickness and food fails.  Those were very dark days for me.  Days when tears streamed down my face constantly.  Days when I found it hard to breathe.  Having a kiddo with a illness you can't *fix* as mama is a heavy burden, those were days I certainly would not have made it through if I hadn't hung on to God for everything.   There were so many mixed emotions being in the hospital.  Relief because I had nurses and doctors watching Levi, making sure he was okay.  Guilt because I had just left my other 2 babes in a panic as Levi was vomiting blood on the kitchen floor,  leaving my parents to pick up the pieces of our day to day life with Maggs and Si.  I was tired, oh so tired.  Emotionally and physically.  Last year my life changed drastically.   When we got his diagnosis,  I started reading blogs on FPIES.  They were unnerving, but I was optimistic that we would be okay, we would start Levi on Neocate, an elemental formula.  A medical formula that was broken down to it's amino acids so that Levi's body wouldn't have to do it.  It has all the *nutrients* a person needs to live.  I would be able to stop nursing and start doing food trials.  Problem was Levi failed Neocate.  He didn't tolerate it at all, he started vomiting more, sleeping less (which was a problem considering he was maybe only sleeping 2 hours at a time) then he got pneumonia.  Not only that, he failed the antibiotics that they used to try and get rid of the pneumonia.   We realized then, Levi's FPIES was going to be a little more severe then originally "planned".  And I was mad.  Mad at God then, about why we just couldn't be like so many other FPIES kids that at least had a formula to live on.  I had wanted that formula to work SO bad.  Now I can truly and thankful say that Levi failing Neocate was one of our biggest blessings.  It is number one on my "blessings in hindsight" list.   Because he did, I had to begin my research for a natural way of feeding him.   FPIES has stretched me in more ways than one.  I now have a vocabulary filled with some medical jargon :p   I have learned so much about food, and how it can reek havoc in your body, or how it can become truly healing.   Ultimately though God is the only, perfect Healer.   It has taught me that God has a perfect plan for my life, it might not always be the way I want, but it is good.   He is watching over me, and He grants peace in the most unexpected places and times.  He is my strength when I am weak.  Today Levi is healthy.   He is eating broth, beef, a small amount of fish and tolerating many natural supplements that we are using to try and even out the way is body reacts and tolerates foods.   He is silly and naughty and definitely two.   Last year at this time this all seemed unattainable.  But here are.   Today we started yellow dock tea,  its an herb that is very rich in iron, and hopefully by the end of the week we'll have started a veggie too!  It's amazing where God can take you in a year!!

Seriously, he chooses his own shirts out, that's why he ALWAYS has this red train one on.  He throws a huge fit if I don't let him wear it.  I think maybe it is time to hide it.

Crazy

Someone said to me "Doctor's must just think you are amazing".   My answer.....  No, not really.  They just think I'm crazy.   Our GI appt came and went at the beginning of this month.  I like our GI.  He is nice guy, he doesn't think (or at least let on) that I am crazy.   He lets me do my thing.  Even agreeing that some of his patients with severe protein intolerances do every well with a natural path, and eating natural food, rather than *industrial* food (food from a grocery store).   But he is doctor, so he still is very scientific and still concerned with labs and numbers.   Levi's labs are always bad.  Not just bad, but really, really bad.   His last lab results for iron are "transfusion worthy" our nurse told me.  That one was hard to swallow.  It knocked the wind out of me.  I wanted to puke.  This is when I have a hard time trusting.  I want to do everything I can to protect this little dude of mine.   You see, we've tried a few iron supplements.   Levi doesn't handle them well.   They have talked IV iron, which means they will admit us into the hospital and course an iron supplement through his veins by passing his stomach, but he can still can react to that, I don't KNOW for sure that he will, but he very well could.  I know the small amount I have put into his mouth didn't agree with him at all.   My gut feeling is that he doesn't need that iron as much as the labs are saying.   I know how important iron is for the body and brain to function properly, but Levi shows NO outward signs of being anemic.  So getting that news was tough.  I panicked, I cried.  I prayed.... no I begged God to show me what I had to do.  Do we do the IV iron or not?   I wanted to give up....... we have worked so hard, only to be put back in the hospital for something that could set us back huge??  Or be good for us??    I wrote to some of my FPIE mamas.  Those mamas.  The ones who walk this walk with me everyday, the ones whose kids are going through a tougher things than we are..... they talked me through, they prayed with me.  For me.  Then the next morning this devotional came across my screen: 

Do Something
Posted: 08 Mar 2012 10:01 PM PST

“Blessed are those who hunger and thirst for righteousness, for they shall be filled. Matthew 5:6”

Healing begins when you do something.  God’s help is near and always available, but it’s given to those who seek it.  Healing starts when you take a step.  God honors radical, risk-taking faith.

When arks are built, lives are saved.  When soldiers march, Jerichos tumble.

When staffs are raised, seas still open.  When a lunch is shared, thousands are fed.

And when a garment is touched by the hand of an anemic woman in Galilee—Jesus stops!

He stops and responds.

Compared to God’s part, our part is minuscule—but necessary.  We don’t have to do much, but we do have to do something!  Faith with no effort is not faith at all!

Write a letter.  Ask forgiveness.

Call a counselor.  Call a mom!

Visit a doctor.  Be baptized.

Feed a hungry person.

Pray.  Teach.  Go.

God honors radical, risk-taking faith.  And He will respond.
(Max Lucado)

Words I swear were written just for me.  I was once again humbled by God's love for me, for His provision.  Our nurse also called back.  Our GI does not want to do IV iron, he thinks that if any kid would react to IV iron, Levi would be that kid.   But she asked me to please find a supplement for him.  So my hunt for something as natural as can be is on once again.  This is just another little push for me to "do something" push a little hard, because God is with us,  just a little up ahead.  Not always were I can see, but always there.

Two

 Tomorrow Levi turns 2.   Although these last 2 years have held some of the most hardest and scariest times for me, I have also witnessed many blessings and many times of peace.   We have prayed big and I am happy with all the progress we have made.   Levi is eating.  That is amazing!!  He is having 4 ice cubes of broth a day.  Sometimes I don't rotate any more and he eats the same broth for a couple days in a row.  He has 5 broths to choose from.  He eats beef in the form of puree,  tiny pieces of roast beef, meat balls, and liver.  He really doesn't like the texture of any of them, he prefers the most liquid form of anything.  But at least he has a preference :)   He also gets a bit of sauerkraut juice, and fish.   This year is going to be good.  I can feel it, and next year I'm praying for cake!

Fear

It has taken so much.  I can continue to let it take more or I can choose to believe.  Believe that God is going to heal Levi.  I know that to be true.  The healing bit.  Without a doubt in my mind.  I KNOW it, but I still have a hard time releasing myself to completely rest in it.  In my devotions this week, fear has been coming up a lot.  I am the first to admit,  I am very fearful when I feed Levi.  I make a conscious note of the time.  I watch the clock and when the 2 hour mark hits and he is still good, I breathe a little easier.  When the 3 hour mark hits its like a wave of relief flows though me.  "It is hard to walk where we can't see"  is what Max Lucado wrote.  (the dude who writes the devotion I read every morning)  He (Max) also pointed me to the bible story of Jairus in Mark 5.  Jairus' daughter was sick, on her death bed to be exact.  He left her side and went to Jesus with the belief that if he could just get Jesus to just come with him, and touch his daughter, she would be healed.  While Jesus and Jairus were walking to the house someone came and said his daughter had died.   Here is where the story gets good ...... Jesus paid NO attention to the news.   Wanna know why? Because He is the unseen.  He kept walking and went into the house and healed Jairus' daughter.  Jesus walks ahead of every persons "story".   When we can't see, and it's hard to just keep walking, because it so dark and unknown..... Jesus is just ahead, pleading for us to just believe.

 "Overhearing what they said, Jesus told him,  "Don't be afraid; only believe".  Mark 5:36

That verse is on my fridge.  I read it over and over again all day long.   I am choosing to believe.  I will still be cautious, and when he gets sick I will probably still doubt.  But I am going to start taking joy in feeding Levi.  Fear is no longer welcome.   Tonight Levi ate an entire ice cube of beef broth and pureed to liquid beef meat.  He is SO proud of that bowl.  He squeals with delight,  please do not even try to take that bowl away!!