Tuesday, July 31, 2012


Confession time.  This last 10 days I have been a wreck.  Our laser surgery experience was so bad that I have not wanted to think about it, talk about it, or even come close to blogging about it.  I have been so busy dealing with fall out, disappointment, questioning God, and fear for our next steps that I have had no problem ignoring everyone who asks how it went.

*deep breath*

I did an incredible amount of research on tongue and lip tie.  One of the newest doctors on our rock star list is actually a dentist.  Dr. Kotlow is the leading tongue and lip tie specialist in the world, and maintains a very busy dental practice in Albany, N.Y.  Unfortunately there are only a handful of dentists in the country that can perform the minimally invasive and extremely fast laser surgeries that he does to correct tongue and lip ties.

We are limited on money.  If I had the money I would have loaded up the girls and flew them to N.Y. for a fast procedure that would have changed their lives.  Within 24 hours they would have gone from limitations to freedom, but there was no way I could see that as a financial reality.  Air plane tickets, place to stay, rental car, figuring out Ellie's food for travel, and the cost of the procedure (because we all know how great dental insurance is) were all expenses that made me have small panic attacks.  So I spent months searching for a doctor within driving distance.

There is one doctor recommended by Dr. Kotlow on the west coast.  He is in the L.A. area and known for being an excellent pediatric dentist, as well as having the ability to perform the procedures that Dr. Kotlow does.  I called their office and spoke to their receptionist at least half a dozen times.  Each time she sweetly reassured me that Dr. James Jesse could do the procedure, and that the girls would not need sedation.  What!  This was my major hang up.  In their office they have the parent hold the child and help restrain for the procedure. No matter how fast the procedure was, I could not imagine subjecting Ellie to that.  Her years of poking and prodding have caused her to ask 'doctor hurt me?' before we enter any appointment of any kind.  I did not want her associating me holding her down with the procedure, and felt that if she was awake she would most likely never open her mouth for a spoon again.  I prayed and prayed and prayed, and every time I thought of taking them to L.A. and holding her down, or expecting big sister to sit still, I wanted to vomit.  The cost of travel down seemed out of reach as well, and at the time we did not have a reliable vehicle that we could risk driving that far.  It all seemed like the wrong choice.

I kept calling until I happened to find a doctor that was closer and within a 2 hours drive.  He is not  pediatric dentist, but is known for being a most excellent laser dentist, which I confirmed with Dr. Kotlow by email.  This doctor is familiar with Dr. Kotlow and his procedures, and I was told by the receptionist that he had attended Dr. Kotlow's training.  They don't typically do children between the ages of 2 and 6 because they do not sedate them and they do not have restraints; they, too, expect the parent to hold the child.  However, they heard our need, and wanted to help.  They researched sedatives and those that Dr. Kotlow uses, and they worked with us, as I had multiple emails back and forth regarding compounded solutions for Ellie.  I insisted we find something, because I really wanted the girls to be relaxed and as 'out of it' as possible. The receptionist continued to remind me that the "goal is not to knock them out completely - just relax them enough so that they don't fret/get too anxious/be very wiggly during their appointment".  They scheduled both girls on the same day, half an hour apart. Daddy took the day off and it all seemed stressful but like it had worked out.  The procedure is 10-15 minutes from start to finish, so we should be on the road and headed home within an hour.

The week prior to the appointment there was complication after complication regarding the sedatives.  The first one didn't work at all, the second on was out of production, and the third one we were unable to do a trial run prior to the appointment.  The girls' previous pediatrician expressed his concern about the procedure and was not on board.  But this was the only dentist we could get to, who knew of all three mouth ties, and we are running out of time for big sis.  I prayed non-stop for months and saw this as the only option, and the best option.  In spite of my anxiety, I was excited - excited for what this would mean for both girls.

That day did not go as we had hoped.

That morning we got up extremely early, loaded up the girls, packed our lunch and all of Ellie's food, and headed to the dentist office.  We planned to arrive in town early to administer the sedatives because we did not want to do that in the car on the way there and then watch for symptoms, etc.  We left early enough to avoid Ellie falling asleep in the car, in hopes it would help with the procedure.  We were well planned out.

We got stuck in traffic and were 30 minutes late arriving to a local park where we fed them a small lunch and gave them their sedative (Valium - the easiest to compound, and best suggested sedative by our respected doctors).  They did not have enough time for it to entirely kick in and were only groggy and goofy, but that was ok because we (they) only wanted them relaxed, so I had to let that go.  Off to the appointments we went.

(part two)

Sunday, July 29, 2012

Leaving On A Jet Plane

About 2 years ago a group of 5 semi-local FPIES moms gathered at my home.  We had 'found' each other via some online support systems.  Looking back it is quite amazing considering they all loaded up their young, vomiting children and lugged them to my home without any previous knowledge of who I was.  The farthest drove 4 hours to get here.  We were desperate for interaction with other mamas that were adjusting to the life of FPIES, and desperate for hope.  So desperate in fact that four of these mamas went on to help found non-profit organizations, and the fifth currently serves on the board of another.

One of those moms lives within close driving distance of our home, and has a daughter two months older than Ellie.  She has not one, but TWO kiddos with an EGID being healed with GAPS.  Over the course of the last 2 years I have been incredibly blessed to have her along the FPIES/EGID/GAPS journey.  

When someone has experienced a struggle similar to your own, they understand.  When someone is where you are, then you can trudge the journey together - side by side, working to jump the hurdles. This mama is such a friend. 

She has come along side me in the good, the bad, and the ugly.  And I am incredibly privileged that she has shared hers with me, as well.  She has said 'hooray for good poops', and 'I'm so sorry for that set back', and 'put on your big girl panties-it is what it is'.  She has reminded me to slow down, and speed up, and that sometimes we just won't know.  She has kept me from looking back unless it is only see to see how far we have come.  And what better way to feel 'normal' while in the midst of massive life changes, than to see someone on the journey with you, running alongside, and helping you to laugh along the way?

Words can not capture how valuable this mama and her family are to us.  She has shared her family, and my family loves hers. And I have found it incredibly comforting and....happy, to think of my Ellie growing up with a best friend who has a similar medical history, food story, and journey to healing.  Whose parents both tried hard to give them the world within the priority of getting them healed.

But it is not to be so.

In less than 2 weeks our friends are leaving on a jet plane for the other side of the continent, for that is where their new normal is taking them.  And we are sad.  I am sad. We will grieve when they go.

But we are happy for them, and excited for them, and nervous for them, and know that thanks to technology we can still stay 'close'.  And we will still talk chickens, and sourcing meat, and making kraut, and poop (goodness we have talked a lot of poop!).  And we will wait anxiously to hear all about their new adventures.  For they will most certainly be missed.

Godspeed friends. May the Lord bless you and keep you. And may we hug you again soon.

Tuesday, July 10, 2012

The Promised Land

Just like her big sister, Ellie absolutely loves music and dancing.  Last week she was dancing her heart out in the living room when a Veggie Tales song came on, and suddenly I heard the words:

It's time! It's time! Did he just say it's time?! 
We didn't have a lot of fun in the desert.  We didn't have a lot of fun in the sand. 
But saddle up your cow, and fall behind us now, because we're going to the promised land. 

I looked up at Ellie and grinned.  She kept bouncing.

For years I've eaten nothing but manna - a dish that is filling, but bland. 
But now we're on our way, I'll have a cheese souffle, because we're going to the promised land!

At one time this song would have made my heart hurt.  It was about food, and the promised land, and all those things so far out of reach. But this time all I could do was grin.

Sometimes it takes 40 years of work and waiting because of choices other people make, choices you have made, environment, things outside of our control, genetics, and who-knows-what-else in order to find healing and see promises fulfilled.  It's part of the big picture. It's part of His plan.

He is always faithful to complete that which He starts.

My biggest realization that she has had significant progress occurred a couple weeks ago.  We have been using a medicated lotion for Ellie's eczema and persistent skin staph.  The goal has been to avoid additional rounds of oral antibiotics, so I began lathering her with something I would normally avoid.  It has worked fantastic, and we have slowly decreased how much we use it. On the surface this sounds like it is not a big deal, except this lotion has three things that would have sent Ellie into a standard FPIES episode 16 months ago (complete with respiratory response and vomiting).  Let me try and put it into perspective:

The lotion has lactic acid (from milk), and propylene glycol monocaprylat (propylene glycol can be derived from corn) as ingredients.  These are two of her biggest FPIES triggers.  I now know that with immune system dysfunction it really doesn't matter what things are derived from.  The body has the potential to react to anything, be it food, environment, chemical or natural.  In fact, there is even more chance that the body will respond negatively to chemicals because they are toxins and must be detoxed through the body, and with leaky gut the body's natural detoxification system is broken.  This was Ellie. There is not an ingredient in this lotion that should not send Ellie into a profuse vomiting and pooping state of affairs.  But instead this lotion has made her skin better.  (Please note that this lotion is still not perfect and we are happy to use it less and less as the ingredients tax her detoxification process, but it is a million times better than multiple rounds of oral antibiotics.  We use it only when our natural options are not working)

Here are some of the other ways we have seen Ellie's healing in the last couple of weeks:

We no longer need to seed her zucchini.  She tolerates the seeds fine.  We do still peel it though because the skin holds oxalates that are harder on a newly healing body.

She is eating all grey, green, white, etc. colored summer squash without problems.  Still squash, but still amazing.

She is also eating fermented red cabbage juice, fermented summer squash juice, and fermented coconut
water.  These provide her with amazing benefits.

Things that have changed in our home and no longer bring FPIES reactions (or panic):

When I wasn't looking she stuck her finger in the (GAPS friendly) pancake batter and stuck it in her mouth.

She picked up a package of Pink Popcorn at the zoo and carried it around before putting it back.

We used a very very small amount of NON-compounded topical medication on her staph skin bumps.

She crawls around on our kitchen floor when I have not swept for a week, and I don't have to brush all crumbs off of her skin immediately.  OK, so I don't have to keep the floor swept by the hour!

She helps cook foods she cannot eat.

She uses markers, crayons and stickers without incident.

Ellie is sleeping better, eating less at night, poops more regularly, and has less constipation

Her belly is flatter.

She recognizes when she is hungry and when she is full.  She has said 'I ate too much; my belly hurts', an ability she did not have 12 months ago. 

We are gearing up to move forward in GAPS.  We are ready to leave the desert.  We are ready to test what we think we are hearing - it is time.  And I am ready to bust at the seams with anticipation. Stay tuned!

Sunday, July 8, 2012

My Unbelief

I've had a change in perspective.

When Ellie was born I began to use the phrase 'here we go'.  Here we go with a newborn who vomits, here we go moving to a new house two weeks before Christmas, here we go to the doctor again, here we go living in a bubble, here we go GAPS...here we go...here we go...here we go.  That phrase always seemed to illustrate what I was feeling:  deep breath, close your eyes, and JUMP!  Each time I mustered up the ability to make the next leap, I was never quite sure how far I might fall or where I would land.

I have a couple of favorite Bible stories - and Peter walking on water is one of them.  In case you are unfamiliar it goes something like this (a.la.my version) - The disciples of Jesus were in a boat in the sea during a crazy storm.  They looked out across the water and saw a figure walking towards them. They yelled "ghost!" and were afraid.  Through the loud and crazy rain, the bold, impulsive Peter called out, "Hey Jesus! If that is you tell me to come to you on the water!" To which Jesus shouted back, "come on out!"  So Peter stepped out of the boat and onto the water, where he walked!  But alas, it did not take him long to loose his faith and down he went into the water where he was forced to call out for help.  Jesus reached out, and grabbed his hand before he sank into the waves.

This is the way I have always 'heard' the story - be it in my own reading, or listening to it taught.  Poor Peter. He of little faith.  He diverted his eyes from the One who kept him afloat, and down he sank.  His bold, impulsive self was not faithful enough.

A few months back the Sunday sermon included this favorite story of mine, but this time it held a new significance.  The pastor suggested that instead of focusing on the fact that Peter sank, we might make note of the fact that he was the only one that got out of the boat. Everyone else was a boat-sitter.  Because of his faith, Peter was the only water-walker.

And then I realized:  Peter stepped out of the boat expecting to walk on water. Why would he step out and expect to sink?  He did not say 'here we go' and wait to see how far he would sink.  Peter stepped out of the boat because he could see Jesus right there. Right in front of him. If he sank, He could shout out and He would be saved.  He didn't worry about the end result because he knew it was taken care of by the One who loved Him the most.  He had an expectation because he knew the promise: to be saved. Instead of saying "here we go!", Peter begged for permission to jump, and then shouted "I'm coming! Stay tuned for what Jesus is going to do!"

Oh, me of little faith. 

I headed to the Bible again and began re-reading all the stories of the new testament where Jesus healed the sick, focusing on His interactions with children.  And what I discovered is that Jesus healed anyone that came.  He healed multitudes.  And when he healed children, He told their parents to expect it.

He told them to have faith.

Mark 9: 21-27
Jesus asked the boy’s father, “How long has he been like this?”
“From childhood,” he answered. “It has often thrown him into fire or water to kill him. But if you can do anything, take pity on us and help us.”
 “‘If you can’?” said Jesus. “Everything is possible for one who believes.”
Immediately the boy’s father exclaimed, “I do believe; help me overcome my unbelief!”
When Jesus saw that a crowd was running to the scene, he rebuked the impure spirit. “You deaf and mute spirit,” he said, “I command you, come out of him and never enter him again.”
The spirit shrieked, convulsed him violently and came out. The boy looked so much like a corpse that many said, “He’s dead.” But Jesus took him by the hand and lifted him to his feet, and he stood up.

 I prayed: help my unbelief.  

And He answered.

I retired the phrase 'here we go', and began expecting miracles.  And He has been oh.so.faithful.

One night I was doing more reading about the quality of (stainless steel) pots and thought to myself: 'I suppose I should check the quality of the pot I warm Ellie's bottles in. I wonder why that has never occurred to me before. I will look into that tomorow.'

The next morning, for no reason, the handle broke off of that pot.

Ellie has not been sleeping well for several months, waking several times a night.  I mentioned to a friend 'I wonder if I should start her back on this medication.  I just don't know what I should do.'

That night she slept for 7 hours straight.  And has dramatically improved sleep patterns every since.

Almost 1.5 years ago we began Ellie on the road to healing.  She was 18 months old, and horribly sick. Critical, missing milestones and starving, with an empty promise of 'outgrowing it'...someday.  That little girl no longer lives in this house.

Stay tuned for this little girl.

She may not eat much yet, but she is already well on her way.  She won't just walk on water; she will move mountains.

Stay tuned.