Monday, August 20, 2012

Eggs: A Labor of Love


Grain free eggs.

Eggs from hens that were fed no corn or soy 6 months prior, and I drove 2 hours to pick up once I found them.

Eggs we hatched, and chicks we raised into 6 prized grain free hens on our suburban lot.

Eggs which Ellie is now eating!!!

After 18 months on stage 1 of GAPS, Ellie is now eating egg yolk, and in GAPS land that means she is on stage 2.

STAGE 2!!!!!!!!!!!

Thursday, August 16, 2012

No, Thanks.

With the change of medical groups Ellie became the proud recipient of 7 specialist referrals. I think. I lost count. Some good. Some ridiculous. And some a flat waste of time.

My personal favorite was the new neurologists referral for an autism evaluation.  Huh?  When I questioned her she explained that she felt Ellie needed to be evaluated for harbored anger and management of emotion. Oh, and she would not look the doctor in the eye when on the examining table alone.  Whatever.  It was obvious that she really wanted to help get her the intense feeding and sensory therapy that she needs, so we will jump through whatever hoops we need to.

Neurologist also wants an EEG. No harm, no foul is the motto. What could it hurt? It would be good just to see. Might show something, or might show nothing.  Afterwards we will determine if we should use medication.  *AHEM* No, thanks. For starters, Ellie's seizures have been controlled since starting GAPS.  Seizures are directly related to the immune system.  Standard treatment protocols for epilepsy includes gut-thrashing medication and hope for seizure control through the ketogenic diet.  Kids on keto have to be strictly monitored because keto does not meet all of their nutritional needs.  In addition, kids with an epilepsy diagnosis can have treatment mandated should the doctor deem it necessary, and then Child Protective Services become involved. (yes, seriously.)  An EEG may show seizure activity or it may not.  In fact, I found it interesting that the first neurologist had one way he wanted the EEG done and the new neurologist another.  At this point in time, there is no helpful reason to put Ellie through an EEG.  An official epilepsy diagnosis at this point in the journey would add nothing.  We are declining.

Another more obvious referral was to the allergist.  It makes sense to the pediatrician we would need one of those.  I didn't see the need quite as much, but agreed. I received a call from the allergist's office.  They informed me that they were unable to get the information they needed so they expected me to get copies of all her medical records showing office visits, tests, summaries, etc. and once received the doctor would evaluate if she authorized an appointment (or some other funky wording like that). No, thanks. We declined. Not to sound like a smarty pants, but I think we have a pretty good handle on what her allergies are.

Referral to the Pediatric GI was up next.  Good to know there is one of those around. I suppose at some point we should go meet him or her.  One thing Ellie needs investigating right now is the neurological function of her lower spine and how it relates to her ability to go poop.  There are lots of spinal complications (aside from Spina Bifida) that have potential to cause issue.  The Pediatric GI would be aware of that and would help with getting any tests done.  I had thought that would be the neurologist, (wouldnt that make sense - it is a neurological complication) but not so much.  They just care about her brain.

Finally is the referral to genetics. Oh yea. That one. The referral that the first neurologist was wondering why I had never received. How could a child with such complications have never received a genetic work up? Especially one with EGID (oh, did I mention that? She has a new diagnosis in her file. We are compiling them at this point like hotels in Monopoly.).  The EGID diagnosis is clinical, because I won't take her in for genetic testing or allow for another scope.  They looked at her eosinophils from when she was an infant, reviewed her tests for the first 18 months of her life, evaluated her current sensitivities, and said it is an EGID.  The first neurologist agreed that genetic testing was only if I was curious.  He is one of the top neurologists in the country, so I found that interesting - he knew all about EGID and seizures.

At this point there is no reason for us to head to genetics. In fact, it could be harmful to Ellie to have the genetically proven diagnosis of EGID in her medical file, because it is considered an illness for life. (Pre-existing condition anyone? The girl has already had a colonsocopy.)  Genetics will attempt to put Ellie in a box, where there is nothing but an excuse for her to be sick.  Mainstream medicine would love to find a genetic tie to all conditions from a cold to a heart attack, which does nothing other than rip away hope for healing.  The reality is that science is piling up for epi-genetics.  Epi-genetics is the concept that environmental factors determine which genes turn on and off, and acknowledges that there are many genes that never 'turn on'.  Over time some genes can even 'turn off'.  How's that for hope?  *insert thumbs up here*

By the way, at no time did anyone think we needed to see a nutritionist. Their examination of Ellie, review of her file, and who.knows.what.else was enough for them to believe she was getting her nutritional needs met.  Or not, and just figured an EGID was enough proof that she shouldn't be eating.  I found it amusing.  In fact when I finally said to the second neurologist that 1.5 years ago her allergy patch testing left a third degree burn on her back from corn, she said: "Oh wow. She is so severe. You really need to make that clear to everyone you come into contact with, all the time, multiple times, because we as doctors hear 'food allergy' all the time and it usually means something very minor."  Funny.

Saturday, August 11, 2012

Life Change

"Your patient will never be able to go back to the typical modern diet full of sugar, artificial and processed ingredients and other harmful "foods".  Use the years of following GAPS nutritional protocol for developing healthy eating habits for life!" 
- Dr. Natasha Campbell-Mcbride, 
Gut and Psychology Syndrome, pg. 155

We bought this house when Ellie was 2 months old.  We moved in one month later, two weeks before Christmas, and have never fully unpacked.  Boxes and piles throughout the house have sat untouched for over two years. We are selling.  As I clean and pack I am witness to the insanity and change of the last 2.5 years. We have never really had the chance to make this place home, and though we didnt know it at the time, this house would not be what we needed.

When we bought this house it seemed ideal.  It is located on the fringe of a newer subdivision, a couple blocks from farm fields, and within 20 minutes of most everything. On 1/4 acre corner lot it has a huge backyard and we made plans for a play structure, sand box, raised beds, and fruit trees.  Now it sits with chickens, chicken coop, metal swing set, sand box, and a half-dozen unfinished projects.  We did get in three raspberry bushes that the pet rabbit loves to torture.

The last 18 months have been absorbed with finding safe food for Ellie, and now my family. The hunt has been tough.  Regardless of how I tried to phrase the question the results were often the same.  Farmer's were offended that I questioned their feed practices, and some were dishonest which put Ellie's healing at risk.  Safe food has been hard to come by, and often expensive.  When I find it, I stock the freezer like a beef bone hoarder.  Often times my sources will just disappear.  Randomly they just stop calling me back, or tell me they are not comfortable selling their products to me.  This has gone on for over a year.  Search time and drive time have kept my days tense.

About a year ago I was in the thick of searching for Ellie safe meats when our local chicken guy just didn't show up to give me my eggs. He literally went from weekly chatting it up with me, to dropping off the planet.  It was so bizarre.  It caused me to pause and seriously examine our situation.  There has always been this underlying fear of 'what if we can't find food for her' or 'what if we don't have the money to feed her'.  This incident made those fears very real, and pushed me to my knees.

I told God that I knew He would heal her, and thanked Him for hope. I told him that I was tired of chasing safe food and unsure how to continue.  I asked Him if I was to continue searching, or make a change. Was He really expecting me to spend an unknown amount of years driving my car all over hill and dale to find food for her?  Food that I couldn't always even trust entirely? He knew our situation. He knew that I simply could not continue to squeeze a GAPS family, an FPIES toddler, working full time, and hours of searching for safe food into every day.  He also knew I was willing to do whatever it took, for as long as needed.  His response response gave me clarity and a vision.

What I realized was this:
I do not wish for Ellie to be 30 and looking for safe food on craigslist.
As the parents, I believe it is our job to make sure she grows up to be an adult 
who can provide for, and take care of herself.  
In addition, we want to always have a safe place
for her to come home to.

I took that to daddy, and he agreed.  We didn't know how we would get there, but we knew God had that plan for us.  We laid it at His feet, and the rest is history.  

Here we are a year or so later.  We are making a life change.  We are moving.  We have a vision. We have an idea of what we want to do.  We are even a little bit excited.  We plan to raise some animals for Ellie, for the family, and for other's in need.  Sounds exciting, eh?  It  It was not all roses getting to that point, let me tell you. When I was a little girl I never said 'I can't wait to grow up and be a chicken farmer'.  We have had to do more accepting of our new normal, but that is o.k. Things don't always go as planned, and certainly not when we decide to have children.  But isn't that how it is supposed to be?  

We are officially on the hunt.  We are looking for a home.  We are open to most anything, and I am just specifically asking that it not be under a bridge (truly).  In all reality I am very comfortable saying:

It doesn't have to be big enough.  It doesn't have to be fancy enough.  It just has to be safe enough.  

And with that we have hopes of acreage and the start of a chicken farm.  Want to help? Know of a lead? Have a safe place for Ellie? Have a rental property that needs some great tenants? Want to sponsor a barn raising?  Or help us launch our business?

By the way, Big Sis has been asking to live on a farm since she could speak.  After we moved to this house she informed us that she liked it, it was nice, but when was God going to give us that farm?  We laughed.  And I am certain God did, too.  He clearly hears the prayers of children.  

For more info on how you can help or what we are looking for click HERE

Friday, August 3, 2012

A Lesson Learned

I have been angry at doctors in the past, and it has been a process coming to understand that they did the best they could with the information they had - that they truly did not know they were hurting Ellie. I vowed to move past that, accepting doctors for their limitations and faults.  And I vowed I would be the advocate for my child, because I know her best.  I would be in control and we would not be pushed around.  Until this experience I had no idea how the details of my new resolution had affected my faith.
There are so many things I wish I had done differently that day.  I most certainly will never schedule procedures for more than one child on the same day ever again.  I was wrong to want them so sedated, especially in a dentist office.  And I was wrong to not be part of the procedure, even providing the restraint if needed.  I had made the best choices I could, after much consideration and prayer.  I prayed, and had others praying, and am confident this was the path we were supposed to walk down. But I have no idea why.  And I have been questioning it for two weeks.

It has taken over a week to not cry at the memory of those crocodile tears, or the disappointment that the procedure was not even completed.  It has taken over a week to talk about it, or acknowledge my anger even with my husband.  It has taken over a week to shake feeling defeated, and sad, and question God.  It has taken almost two weeks to begin the process of letting it go and forgive myself for doing the best that I could - and to believe that I had heard from God and that we had walked the path we were meant to.

For almost two weeks I have questioned my discernment and my ability to hear God.  I was certain this was the dentist we were to go see.  So what happened? How could something go wrong? This was not how it was supposed to turn out!  While grieving the consequences of this experience, I forgot that God was in control of the outcome as well.  I had become trapped in the idea that as long as I was following the will of God, nothing could go wrong.

God operates outside the laws and limits of our physical world.  That is what makes him GOD.  We pray, we ask, we petition, and we get answers that are not always the ones we want to hear.  There is still poverty.  There is still famine.  There is still disease.  And there are still medical procedures that go wrong.  Because He is a sovereign and faithful God I know that He allows these things to bring about HIS will - not mine.

After several days of praying and hearing 'nothing', a friend called and said: Have you heard anything? I said NO! I hear NOTHING!  I was truly grieving. She responded with: Then there is something I am supposed to tell you - He sees.

I instantly felt my body relax. HE SEES.  He sees us.  He sees my children. And He knows.

Matthew 10:29-31  Are not two sparrows sold for a penny? Yet not one of them will fall to the ground apart from the will of your Father. And even the very hairs of your head are all numbered.  So do not be afraid; you are worth more than many sparrows.

My questioning came during a very important week.  We are making some major family adjustments and some of them hit this week.  One is my taking leave from work for the year.  August 1 I should have been headed back to work, and I am not.  We are down one income, and I am adjusting to a year at home. (And I really do love my job by the way.)  A year of recouping and focusing on helping Ellie progress, along with an entire list of other things.  We are beginning a new chapter for our family in many ways, and it is extremely scary.  It is not what we had planned for our family.

But my girls? They are worth WAY more than any sparrows.  He sees them.  He sees us all.  And He promises each of us a future and a hope. And I got my little reminder that I am not the One in control.

Thursday, August 2, 2012

Post Procedure Confirmation

I didn't talk about the trip to the dentist for over a week. To anyone.  Daddy and I didn't even talk about it, and spent the week fighting nasty fights spurred by guilt and anxiety.

The revision site for Big Sis does not go between her teeth, and the muscle is still very obvious there.  I was worried that the surgery did not release enough of her lip, and that the surgery was incomplete.  The photos included in Dr. Kotlow's literature show revision between the teeth with severe lip tie.  How was I to find out if the surgery was complete or not?

Big Sis Before
Big Sis After
As for Ellie, obviously hers was not complete.  Now what?  Could I seriously take her anywhere except for someone who would put her under general anesthesia? We can't mess around. She will now need to see either Dr. James Jesse in L.A., or Dr. Kotlow in NY, but neither of them use general anesthesia.  We can NOT allow another event like this.  Will we ever get her into a dentist chair again?

Ellie Before
Ellie After
Over a week later I began to process things with a friend.  She suggested emailing Dr. Kotlow about the procedures, and ask him the questions directly.  Was Big Sis' procedure complete?  Would he recommend just doing a general anesthesia with Ellie considering her history and this experience?  So I did.  I sent the before and after pictures, along with a very brief email.  I purposefully left out the name of the dentist who we saw. I have no desire to bash him publically or appear as if that was my motive.  And at one point the receptionist had said she knew Dr. Kotlow personally, so I really did not want to bring that up.

The following morning my phone rang, and when I answered it I heard "Hello, this is Dr. Larry Kotlow in Albany, New York." Say WHAT? That caught me off guard. WOW!  We chatted. Actually, I mostly just listened.

Confirmed: Dr. Kotlow would have cut between her teeth and saved her the complication of additional orthodontics in the future.  Not all dentists do this.  He is not concerned about her lip which looks resolved; he is concerned about her teeth. She needs a palate spacer immediately.  It's not too late to go back and finish the procedure.

Confirmed:  The experience with Ellie was set up to fail.  She would have been in the chair for 90 seconds in his office.  He does not recommend nitrous oxide.  He does not recommend valium.  Obviously she still needs the procedure.

I can not explain how grateful I am for that phone call.  The top tongue and lip tie specialist in the world  took the time to call and answer my questions.  This confirmed his rock star status for us.  A doctor who cares about what he does.  Who takes the extra time out of his day incredibly busy day to phone a very upset mama.

Big Sis has recovered nicely.  She still has a little residual anxiety, but the revision site is almost entirely healed and thanks to some homeopathic remedies she had almost no swelling or pain.

Two weeks later and we still have one angry, angry little Ellie on our hands.  I prayed for three days that she would not turn inward like she normally does. On day three she started yelling. And screaming.  And hitting.  And yelling a lot more.  I have spent at least three times every day watching her escalate in frustration over anything or nothing.  Screaming which becomes banging her head, hitting herself, and then rocking her on my lap until her yelling stops and she cries.  And in the middle of it all God is gracious.  I have prayed for two weeks straight - I have begged - that she wouldn't refuse food other than her bottle and clamp her mouth shut permanently, and those prayers were answered.  Instead of regressing she has decided she wants to eat.  For the first time in her life she shows signs of understanding the difference between 'liquid' full and 'solid' full, and is asking to eat bites.  She is eating puree for the first time since she was 10 months old!

As for our next steps, we are looking for a functional orthopedic for Big Sis' palate spacer. And I have no idea how, but it looks like we may need to go to New York.

The Rest of the Story

("Botched" part two)

We arrived at the dental surgery appointments with nervous anxiety.  We had preconceived ideas of how things would go, and I comforted myself by reminding myself it would go quickly. They were ready to go when we got there.

Ellie went first.  I took her back to the room and placed her in the chair, and then ran out to the car to get the Valium bottle we had forgotten so that they could log it in her chart.  They covered her with a blanket to make her comfortable, which was my first major mistake.  I allowed that, which in retrospect was a major invasion on her little sensory issue body.  Fine for 99.9% of the population I am sure, but was not o.k. for Ellie.  Then again maybe not.  It seems a bit scary to me for any 3 year old to be put into a dentist chair and then covered with a blanket.  When I got back I was asked to wait out front and told it would be better if I was not in the room.  I figured since it was a fast procedure and I was not thrilled with the idea of watching, that would be o.k.

Time went on and she was not done. We were reassured several times that she was fine, not crying and just sitting in the chair. They were waiting for her to go to sleep. This bothered me tremendously, as we were told prior to coming that the goal was *not* for her to be asleep, just 'relaxed'.  Time ticked on.  We had an additional dosage of Valium left, because per doctors orders I had dosed her low.  We didn't know how much she would need.  They asked how I administered it and said they were going to give her the remaining dose.  Uhm...O.k.  I said I would get her water and they said, no worries we have ours.  I was not prepared for this.  I froze. And I totally regret allowing this.  FPIES complications allow for cross-contamination fears and I did not like the idea of them feeding her anything with anything.  Was the water filtered? Did they use a cup with wax? I decided that one time, small amount would be fine.  It did not occur to me until later that Ellie barely lets her daddy and I feed her anything.  Had she been scared that they had fed her? How did they get her to take it?

I also had not gone back to the room to check on her.  Every time I got up I was reassured everything was fine.  She wasn't that far away, and I didn't hear her crying.  I was told she was asleep, and then told she wasn't, and then told they were just waiting for her to go to sleep. And then told the dentist gave her nitrous oxide, and that he had checked and it was perfectly safe.  At this point I began to get angry, but felt totally and completely trapped. I desperately wanted this procedure done and successful, but had no information on laughing gas, was not told it was a possibility, and the idea that they found a document saying it was 'FPIES safe' was laughable alone. Those types of documents do.not.exist.  We were an hour in.  And at this point I did not go back to check on her; I took their word that she was o.k.  I regret it terribly.

At this point we were so far behind they said they were going to go ahead and get Big Sis situated and ready.  My anxiety and feeling of being overwhelmed because immeasurable. Two kids in separate chairs at the same time.  We went back with Big Sis to the room next to Ellie.  They also gave her a blanket, and another dose of Valium since she wasn't sleepy enough.  She was a trooper.  She had no fear and barely wanted us in the room.  Daddy said he was going to check on Ellie. I said I couldn't look or I would just go get her and the procedure will be done. And that's what I should have done. I should have gone and got her and called it quits then.  I thought I was doing the best thing by staying away because she would not go to sleep if I was there. She HAD to go to sleep for them to do the procedure.  She MUST have the procedure. We don't have the money to go to anyone else.

Daddy said he thought Ellie could hear us in the next room and she was stirring.  I told Big Sis to talk quieter and was horrified.  All three of us were next door where she could hears us, and she was alone and scared.  We backed to the wall between and I peeked in on Ellie.  She was not moving and I couldn't see her clearly.  She was being monitored but I couldn't stand it anymore and went in. Daddy followed close behind.

What I found will be etched in my mommy mind forever.  I have never, nor do I ever wish to see again, the look of fear that was on her face when we approached the table. I don't really remember what happened in what order for the next 45 minutes or hour.  She was wrapped in a heavy blanket, her body stiff as a board, her mouth clenched shut so that her jaw muscles were visible and her eyes huge.  She was not crying.  She was not moving.  I was worried about the medication so I checked for breathing. It was shallow but there. I asked her if she was breathing ok and she nodded a little.  She never opened her mouth.  She saw us but did not move, or even turn her head.   I stroked her forehead and said 'mommy is right here'.  Large crocodile tears rolled down her cheeks but she still did not cry or relax her jaw.  At some point we backed out of the room to try and get her to sleep. Somewhere in there we heard Big Sis start to cry and I went to comfort her. I had told Ellie I was right there and going to check on Big Sis.  As I walked away her lip began to quiver and more tears.  Big Sis was ok. Her fear and crying was from the shot of Novocaine.  It was impossible to be in both places at the same time. I heard Ellie call a cracked "mommy!"  Daddy stayed and kept an eye on Big Sis, and I hurried over to her.  She was sweating.  I pulled back the blanket and her arms were stiff and stuck to her side, her fists clenched.  She did not hold her comfort bear.  'Owie lip' she said.  That was from the novacaine shot.  It wasn't until the next day that I realized she was so afraid to open her mouth that she didn't cry, and she didn't call out for me.  That makes me want to vomit.

I picked her up and comforted her.  It took many minutes for her to relax and for her breathing to return to normal.  Maybe if I held her she would go to sleep and they could do the procedure?  No way.  It didn't take long for her to continually beg to leave to the other room.  I can't say I blame her.

Procedure done for Big Sis, and called quits for Ellie. Big Sis did great and he had to 'cut more than he had thought, and he could have cut more'.  We received instructions on how to care for the revision site.  For Ellie, we were told they had started and done one quick swipe with the laser but it was nothing to even check on.  It was nothing that needed cared for and even worth mentioning.  Later I discovered a milimeter of a revision site when it started to tear at home and bleed.  She would not let us near her mouth and I had not known.  I thought there was 'nothing', so I had not even given her motrin or homeopathics for pain.

By the time we left we were stuck in construction and traffic.  It took us over 4 hours to get home.  Maybe 5.  I cant remember.