The Beautiful Act of Cleaning the Broth Pot

For the past year and a half we have cooked more broth than I can really even figure out. Until recently my process was to pretty much keep the broth pot on the stove all the time. I would then blend a couple of “bottles” worth of meat/broth formula for each of the twins as needed. This was not really the adhering to the “work smarter not harder” train of thought. It was more of a “head above water” train of thought. Recently, as we moved in with my in-laws I realized that we really had to get a better process going since we would be sharing the kitchen.

Here we are about a month later and the process is quite a bit better. We cook a pot of broth and meat and then blend two days worth of formula all at one time. After this big blending job is done the hefty stock pot gets a much deserved rest on the baker’s rack. But the effort to get “old faithful” onto that baker’s rack has been a much dreaded effort for me. At some point over the last year and a half I have come to DESPISE cleaning this thing. The very thought of it was part of the reason I used to leave the thing on the stove all the time rather than blending the contents all at one time. It had gotten so bad that I pretty much refused to clean it and asked Shawn to be the official broth pot cleaner.

About a week ago something occurred to me that changed all of this. I am certain that it was that “still small voice” of the Holy Spirit in me – challenging me. I suddenly had a change of perspective. I realized that in reality the act of cleaning this dirty broth pot was really such a joyous honor. This pot that is instrumental in nourishing my children…this pot that nurtures the very “medicine” that is healing my children’s bodies…this pot is akin to the “hearth” in our home – the place where we gather as a family for warmth and togetherness. No, we don’t actually gather around the broth pot. Ha! But this pot – it is beautiful, and the act of cleaning it – the same! It has only needed to be cleaned twice since this great realization, but both of those times I thanked the Lord not just for the pot, but also for the opportunity to clean it again.

***

A few days ago my sister told me of a couple who shared their story in her church recently. When she told me that she gave them this blog address I thought, “Oh no.” Not that I didn’t want her to pass on the information, but their story…it makes the struggles we have faced seem so insignificant and writing about them, well, almost silly. This couple’s 10 month old baby had a degenerative condition. I believe they were told that their precious little girl would not live past the age of two.

Today I got word to pray for this family as their little girl went to be with Jesus.

***

Though I was already writing this blog post and had already decided that cleaning the broth pot would be an act of joy, the sobering reality of how blessed we are is overwhelming. The fact of the matter is that for some reason LittleM and LittleR were born with a rare and strange condition – a serious condition, BUT they are growing, healing, and even thriving. I am so thankful for the ways in which the Holy Spirit has changed my heart over the last year, but I am truly ashamed for some of the attitudes I held onto.

The broth pot --- case in point.

Please pray for BabyP’s family.

We Are IN the Ark

Divine Provision

I think that here in the US we think God’s provision is supposed to look a certain way.  God should provide a good job, a nice house, 2 cars, nice clothes, plenty of money for a nice vacation, extra funds for entertainment and on and on. 

I think about this and I have a difficult time.  I just know that my family is in the will and plan of God and yet look at some of his provision in our lives (not even to mention those in 3rd world countries). 

• We have twin children who are allergic/intolerant to food and who have spent the majority of their lives really sick.  God’s provision was not supernatural healing, but insurance coverage for “liquid gold" and then later the GAPS healing protocol. 
• When the kids were babies we operated our family with one car – not as though we didn’t need two – with the number of doctor appointments for the children.  Provision was loading up twin babies most mornings and driving Shawn to work so that we would have the car during the day.  (Later provision was God GIVING us a 1999 Saturn, but that is a different story really.)
• Today with a little over a dozen special foods for the children, we don’t make enough money to feed them, but by the grace of God they have never gone without a single need. 
• At this point, we literally don’t have the money to provide a safe living environment for the medical needs of our family and yet we are living in a safe environment as we speak.  God’s provision was to move us in with my in-laws. 
•  A year ago Shawn finished his undergraduate degree and not for lack of trying he has still not been able to get a better paying position within his company.  Somehow I am sure this is part of the Lord's provision for our family. 

In obedience to the voice of God, we moved our independent – sovereign – “leave and cleave” family in with our parents.  This seems like such a backward move – and in many ways it is, but this folks, is provision.

The Ark

What a whirlwind summer this has been.  It seems like a near eternity since we first found out that there was mold in our home.  Though in reality it has only been about three months.  Even so, the Lord gave me complete peace that he was in control of the situation and that he would provide – even supernaturally for our health/medical needs in the interim of remediating the mold.  The Lord spoke to my heart as Abba Father, speaking into my spirit that I was simply waiting for my father to call (and tell me what to do next).

Then the word came – word of the estimate to remediate the mold and repair all of the necessary things in order to prevent the mold from repopulating immediately.  Since we couldn’t give the children their allergy immuno-therapy treatment while living in an environment contaminated with mold, we had decided to allocate the funds from a year’s worth of this treatment toward helping our landlord with the mold repairs.  We were excited to be able to offer that $2200 toward the project.  We were hopeful that this would cover a large portion of the cost.  When the actual cost came in we were shocked and overwhelmed - $30,000 No, I didn’t put the comma in the wrong place. 

It Looks Like We’re Moving

There are a couple of things I KNOW about our landlords.

• First, these are good people – they don’t come any better.
• Second, they love the Lord and they do not make hasty decisions.
• Third, they are invested in our lives – as the parents of my brother’s wife – and as friends of my family and me since I was a kid.  Simply put, they love us.
• Lastly, in addition to the above facts, I also know that they gave us there home in a time when my family needed a place to live for a price that was a fraction of the market rent.  This was a gift. 

The Lord in his grace and provision prepared my heart the very same day that they told us that they couldn’t fix the mold right now – I already knew.  Although I wanted to cry when I read their letter explaining this, I was completely at peace in my spirit.  Although my flesh wanted to panic, my spirit was at peace.  In the days and weeks to come there would even well-up moments in my “heart” and mind when I was inclined to be angry – but still my SPIRIT was at rest.  The Holy Spirit was no doubt at work in communion with mine. 

We knew it was time to move on.  In my spirit I heard the words of a song, “the Lord has promised good to me…” I heard this as the song of the Lord to my heart – a promise in this situation.

Building the Ark

We began looking for homes to rent the day before we got the news.  There was nothing in the miniscule budget that we have to work within.  We knew that we would have to purchase a home.  Given our budget we figured we could afford a home at about $60,000.  The next day we began driving by the homes in our area in this range.  Some were horrible – some were possible – but they were all old, needing work, and questions remained about the safety of these homes for the  physical health of our family. 

We drove by a home in an undesirable location – it was newer, the price was good – but the location… yikes.  As we were driving away Shawn looked at me and said, “I would sooner move in with my parents than move my family into this area.”  YEAH RIGHT.  I laughed and said, “I would sooner move to Maine.”  I truly thought the idea was laughable – I wasn’t about to move in with anybody.  That very afternoon my husband’s parents were coming over for a cook-out.  I laughingly replayed the conversation for my mother-in-law.  She laughed for a few moments and then she and my father-in-law started informing us that we were certainly welcome.  They started going over the details of how we could make it work. 

I didn’t like this idea, but somehow…I just knew – even in that very moment – that his was the answer to our immediate problem.  I didn’t accept it right then.  The fact that my husband was adamantly against it allowed me to fight the idea in my head – for a short while anyway.   Still, the Lord was working on my heart and within 24 hours I was praying and decided that if this was His plan I would leave it in his hands to change Shawn’s heart.  I am sure that you can guess that is exactly what God did.  It was Saturday when we drove past the house.  By Wednesday when I asked Shawn if he had thought any more about the idea of moving in with his parents, he answered that he had already called his mom about it.  We were on our way to Maine for a week of vacation (paid for by my mom – provision) and we knew that God was moving us in with my in-laws when we got home. 

After talking with my sister-in-law (daughter of our landlords) I knew that there was still one thing the Lord would have to work out.  What would we do with our things?  The very next morning after talking about this with her we got a phone call.  My in-laws had arranged people and trucks to move us, as well as a place to store our things.  This was just one of the many confirmations that we were moving in with Shawn’s parents. 

It took 100 years for Noah to build the ark.  It took only 14 days for us to actually move into this one.

This Truly is Our Ark

Two weeks after moving in with the in-laws our pastor preached on Noah.  He likened the ark to a place of provision, rest, and safety.  He talked about the ark being that place of safety as the storm raged around it.  He told those of us listening to look at the person next to us and tell them, “There may be a storm coming.”  I looked at Shawn and said, “We are IN the middle of the storm!”  We sat there for a moment whispering back and forth about how we don’t feel like we are in a storm.  We feel at rest.  We know that this strange and “backward” move is the Lord’s provision.   “It’s because we are IN the ark,” I said to him. 

He agreed.

A Word From the Lord

Before the move there was a short time when I was truly fighting this whole idea.  But I lived many years outside of the Lord’s plan.  The past handful of years has shown me that I have no interest in living contrary to his plan for my life.  No matter how hard it is, I want to be right in the middle of it.  His plan is not always easy.  I am certain that the ark was no picnic.  I am sure it was hard work, crowded, and seemed to stretch on forever. 

In a short period of time, I decided I would just open my heart the master sculptor.  I opened myself up to allowing him to mold my heart toward his will.  In that time I heard him speak into my heart very clearly.  I heard what I know to be a promise, “I need you to be obedient in this so that I can do what I am trying to do.”  With that statement in the “still small” of my spirit I knew that he was talking about our living situation (at least in part).

I am still not certain what the Lord is doing, but I know that He is in control – and that he has promised “good to me.”

The Hard Work

I have recently been in a situation where I have had to hear the Lord’s voice and then act. Even as I was acting out the things that I was hearing God lead me to, it was difficult not to second guess myself each step of the way. It was in those moments that I had to really think about what I heard God telling me, and then consider all of the confirmations that allowed me to know it was really God. As I did this and weighed the cost of following through with what I knew I had to do I was confident. In this situation I was blessed to see the Lord work within 24 hours. It’s not that the entire situation was resolved that quickly, but there was a “game changing event” that once and for all confirmed that what I had been hearing was surely from the Lord. This was not about doubt to begin with, but about building my faith.


The night after this “game changing event” I heard a new message from the Lord deep in my heart. I heard him saying, “You hear my voice, you know what I have said (about the kids). Now you have to act in faith.” That night I really hadn’t thought about how the situation at hand was about me. I really thought of it as me being in the right place at the right time to intervene in a hard situation. But after the Lord showed himself in it, I realized that he was using it as part of my testimony as well. He is so amazing like that. I realized that not only do I KNOW what God has told me about the children, but that I HAVE to walk in faith. It is my responsibility now to do the hard work in what he has showed me. In faith I have to go through this healing protocol for LittleM and LittleR. I have been stuck. During the fall and winter we were actually not stuck, we had gone so far backward, but that was not as a result of us following the protocol. It was actually a result of us getting too far ahead of the protocol and not paying attention to some of the details because they were too hard.

Right now I know what I have to do. I also know that with all of the hard work of the protocol as we already follow it, adding in each new step is going to be SO MUCH work. Honestly it is overwhelming to consider right now as I sit here and type. In these moments when I feel so overwhelmed at the mountain before me, I just have to reel my thoughts back in and rest in a few things:

It is the voice of the Lord that I am believing in and following.
My sheep hear My voice, and I know them, and they follow Me. John 10:27

If he has called me to it he will give me the strength that I need.
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.”ThereforeI will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. 1 Corinthians 12: 7-10

As I rest in him, he will continue to work on my behalf.
It is vain for you to rise up early, To retire late, To eat the bread of painful labors; For He gives to His beloved even in his sleep. Psalm 127:2

So what does this mean for LittleM and LittleR? We will be walking in faith through each step of the healing protocol. I don’t know how long it will take, but there are certain components that we have been avoiding because they are difficult (fermented fish) scary or because they “should” be avoided in very extreme children (things like dairy and nuts). BUT if the Lord himself gives us an instruction – that’s all I need to know.

Now faith is the assurance of things hoped for,

the conviction of things not seen.

Hebrews 11:1

It Took All of TWO Minutes!

LittleM has had extreme feeding (specifically swallowing difficulties)for her entire life. She has seen more than her fair share of medical providers for various reasons, and SPECIFICALLY fo rher feeding issues. She has been unable to eat properly which in part has led her to be diagnosed as Failure to Thrive for 3 years.

Provider after provider – we have been told that there was no diagnosable reason for her difficulties. Then one day, after some research on LittleM’s behalf, Kelly Rice of Sovia Therapy (our occupational therapist) came up with an idea. Could LittleM have a posterior (hidden)tongue tie? We researched this and thought it made sense. Then the diagnostic battle began. It was at this time, with this diagnosis in mind, that we took her to the ENT and Oral Surgeons. They both said, “NO tongue tie.” They were sure, adamant, but my gut said they were wrong.

Later we traveled over 2 hours to see a pediatrician. She had no additional degree or training, but an interest in tongue tie. Dr. Penny Soppas is considered to be an expert, but with her gentle nature and humility, she did not want to take on that label. Though she could not definitively diagnose LittleM’s tongue as tied, she clearly recognized the abnormal range of motion and suspected “hidden” tongue tie. After consulting the International Affiliation of Tongue Tie Professionals (of which she is a member) with LittleM’s history including photos and videos Dr. Soppas was certain that LittleM indeed had a posterior tongue tie.

Dr. Soppas told us that there was a pediatric dentist in Albany, NewYork, and that he was the ONLY one she would recommend for this severe and unusual tie. We opted to try a form official therapy before going for the surgery. This therapy given by Kelly Rice of Sovia Therapy, did a great deal for LittleM’s ability. It was really a game changer. The tongue tie was released to a noticeable degree and LittleM’s ability to swallow improved. But it wasn’t enough. After LittleM aged out of Early Intervention we had to make a decision. Would be keep going hoping more therapy would completely release her tie or get the surgery. I prayed and prayed about this and finally felt that the answer was clear.

Yesterday we woke up at 4:00am. We were on the road by 5:30 and arrived in Albany, NY at the office of Dr. Kotlow at around 11:30 in the morning. The evaluation to diagnose LittleM’s posterior tongue tie, maxillary lip tie, and abnormal jaw positioning took all of 2 minutes. With a little silver measuring tool for the tongue, a light, and the eyes of probably THE leading expert in this area, it was all confirmed.

At 1:30pm yesterday, Dr. Kotlow took LittleM to the room with the dental laser. About 15 minutes later he returned with a less than hysterical, but sobbing little girl who just kept repeating, “You were so scared, you were so scared.”

.

Laser incision of the Maxillary Lip Tie

Note the space between the 2 front teeth. This is an obvious sign of lip tie.

Laser Incision of the Posterior (Hidden) Tongue Tie

Not how NOT hidden this incision is...hmmmm....strange it is SO difficult to find!

Though she was clearly traumatized by the event she was not in a lot of pain and it was DONE! By 3:30pm we were back on the road. We stopped to give the kids dinner around6:00pm and LittleM was in some pain. Trying to eat made it much worse. “When you get your lip-tie fixed, that makes your carrots hurt your liptie,” she kept saying. After giving her a little benzocane to numb the area, LittleM proceeded to eat an entire meal WITHOUT a water wash. She used puree to wash her food down, but she could never even do THAT before. This was new and clearly improved!

We arrived home with 2 sleeping children last night at 11:00pm. Within less than 24 hours this 3 year old problem was corrected. This is not the end of the road to fix the damage done. LittleM will have a short recovery from the surgery. It is important to make sure that the tissue doesn’t reattach as it heals. Then we will have to begin helping her to re-learn all of the adaptations that she taught herself in order to swallow. The habit of swallowing with a “water wash”will have to be broken. She will have to build enough strength in her tongue and neck to swallow correctly. Even with this work ahead, I feel confident that this is a pivotal moment for LittleM. I think she proved that at dinner last night!

3 Years of Intensive Medical Involvement

All but 4 of these professionals were seen or consulted with SPECIFICALLY for LittleM’s feeding issues. Some of them were only seen for a one time consult but most of them were long term providers.

THESE GUYS TOTALLY MISSED IT –Some of them really should have known.

1 Pediatric Maxillofacial Surgeon

1 Pediatric ENT Surgeon

2 Gastroenterologists

3 Pediatric Allergists

1 Chiropractor

1 Neurological Chiropractor

1 Nutritionist

1 Physical Therapist

2 Occupational Therapists for Feeding

4 Pediatricians (from 2 Practices)

1 Family Medicine Doctor

1 Pediatric Endocrinologist

2 Evaluations by speech therapists

THESE FOLKS GOT IT RIGHT

1 (of the 3) Occupational Therapist for Feeding

1 Pediatrician with an interest in tongue tie

1 Pediatric Dentist

LITTLEM’s SYMPTOMS

Infant Feeding Difficulties

Lost too much weight in hospital as newborn due to inadequate feeding

Unable to Latch on Properly

SUPER Long Feeding Times (ALWAYS over an hour for 4 ounces)

Syringe Feeding

Inability to use a bottle (tried more than 10 bottles before finding one that was workable)

Gagging

Reflux

Vomiting

Drooling while feeding

Motor Planning Difficulties with Feeding ONLY – unorganized suck swallow breath pattern

Abnormal range of motion for tongue(unnoticed)

Failure to Thrive

Older Baby Feeding Difficulties

Long Feeding Times

Motor Planning Difficulties (Self-adapted so not as bad now)

Reflux

Gagging

Difficulty taking a spoon

Abnormal swallow pattern of purees(V-Shaped swallow)

Inability to swallow anything other than Stage 1 purees (even thicker purees refused)

Complete lack of ability to swallow solids of any kind

Abnormal range of motion for tongue (beginning to be noticeable)

Failure to Thrive

Toddler Feeding Difficulties

Inability to swallow solids without a significant “water wash”

Inability to swallow some solids even with a “water wash”

Abnormal swallow pattern of solids and purees (V-Shaped swallow)

Very extended meal times

Inability to take adequate calories through eating

Bottle Feeding in order to take adequate calories

Some speech problems – despite above average communication skills

Gagging

Motor Planning Difficulties (Completely Self-adapted)

Abnormal range of motion for tongue (completely noticeable)

Failure to Thrive (until recently)

You Can't Stay Here Mold!

What a month…I feel like that is all I have the energy to say, but there is so much more to be said! If I had to sum it up in one sentence I would say: we found out we have mold (and have confirmed that it is a part of the problem), but I have peace that it is all going to be ok.

It all started when we noticed that the dingy grey discoloration that we had noticed on LittleR’s closet ceiling was spreading. We sent a sample to Mold Labs and sure enough – it was mold. Though a bit disconcerting we didn’t worry too much. We did wonder if this explained why LittleR would always wake up with a “snuffy nose” or if it was part of the reason for all the respiratory distress. We moved LittleR ‘s bed into LittleM’s room and put the kid’s toys in his room. I figured that short exposure to the room during the day would be ok. Wrong.

I had told our immunotherapy tech. what was going on for the purpose of explaining why we had to delay further treatments (you cannot have low dose immunotherapy unless you can ensure that your environment is free of allergens). Two days later I got a call from our now retired physician. His first question really got my attention; “Can you move out?” Ummmmm……No. Realizing that this was so serious that our environmental medicine specialist doc who is retired (he now works one week per month) who we were scheduled to see during his next work week on May 11^th called me from “vacation” on April 13^th AND ASKED US TO MOVE OUT OF OUR HOME – this really freaked me out.

He told me what to do since we could not move out. I followed his instructions, but still started freaking out inside. We were to seal off the problem rooms entirely, get a GOOD HEPA air purifier and run it in the kid’s bedroom 24/7, support the kid’s immune and respiratory systems with stinging nettle, and FIX THE MOLD. This doctor who isn’t the biggest fan of medications and knows that I am not either told me that if the stinging nettle and homeopathic allergy supplement that we had already started didn’t work we would HAVE to put them on Cingulair in order to prevent a reactive airway cycle like the one we couldn’t seem to get out of all winter.

We started exploring the house to see what was going on with the mold. It didn’t take long to realize that the attack is FULL of it. With all of the exploration we must have stirred up a significant amount of mold, because the kids and I all got sick. I could feel it in my throat and lungs. They started coughing and I just knew we were in for a vicious cycle of respiratory illness. This was bad.

Then I heard from the Lord “loud and clear” in my heart that we were doing what he wanted us to by following the instructions of the doctor. The very day that Doc called me I was looking for a new doctor since he has retired. I was praying – well more like yelling – in my head. Just as I asked, “Who is our new doctor God?” The phone rang and it was Doc about the mold. This was one of many confirmations that we were to follow his instructions. God impressed upon me that discovering this mold was a blessing. This was an opportunity for us to eradicate at least a part of what has been making the twins so sick. The fact that disturbing the mold made them sick was also a blessing. This too confirmed that the mold has in fact been making them sick. One thing that the Lord spoke to me in such a gentle and gracious way is that He would take care of them during this time of waiting (as we gather quotes and wait for the work to be completed). He was been so faithful. The kids came out of the illness amazingly – no reactive airway CYCLE. The mold is still here but with the interventions that the doctor prescribed, the children are well.

Though it took me about 24 hours to get past my panic, I am confident that this is a good thing. I am confident that this is Divine Providence and I declare that because I have made the Lord my refuge, and the Most High my dwelling place, no evil shall befall me, nor any plague or calamity come near my home. You can’t stay here mold. Ha!

I also declare that the effects of the mold – as well as the kid’s immune system dysfunction, and all the other aspects of their illness, have already been defeated and will be overcome by the blood of the Lamb and the word of our testimony. And I declare that LittleR and LittleM’s testimony is this: Jesus was wounded for their wrong-doing, Jesus was bruised for their sin; the punishment of their peace upon Jesus, and by HIS stripes LittleM and LittleR are healed.

Voices in Your Head

Jesus said that his sheep know his voice.

Prior to the last year or so I knew this to be true but I had never realized just how tangible his voice is. I grew up in a denominational experience that (at least in my perspective) nurtured the idea that God speaks only through a “still small voice” or the “peace of God.” It wasn’t until I came to my adult years that I truly encountered the person of Jesus Christ in my life. This was driven by many personal experiences, but precipitated by my reaching the absolute end of myself. In that place – at the edge of the pit – I knew that there were only two options. As I called out to the Lord, I knew that he would either answer me or I would plummet into that pit to the end of my existence. Even then, when I barely knew His voice, He answered me loudly – and immediately. That was a number of years ago, and it marked the start of my journey with Jesus. Prior to that event I just didn’t realize that I could truly hear His voice.

Since that first experience with the Lord, I have heard him many times, but still His voice has not been all that clear most of the time. How is it that “his sheep know his voice,” but we have such a difficult time figuring out what he is saying? I have realized more recently that there is just so much going on inside of my head that I often have a difficult time discerning who is saying what.

Have you ever considered just how vast your own inner dialogue is? A recent study reports that the average person speaks 16,000 words per day. With this in mind I cannot even imagine how many words we think. Recently I have been working through a healing prayer ministry. The idea is to allow the Holy Spirit to heal inner hurts caused by events and/or people of your past. Through the educational piece of this ministry, I have been learning a lot about this inner dialogue and where it comes from. There are so many factors creating a whole lot of noise.

Consider the following “voices” in your own head:

Your own Voice… not so simple when you realize that your own thoughts are based on truths, untruths, things others have said to you, things others have done to you, things you have learned and witnessed, things you have believed…this list can go on and on. Yes, we are talking about your own thoughts, but they are based on SO many factors and each of those things is also filtered through the difficult thing called perception. This complicated matters even more.

The Voice of Others… we are all tasked with weeding through the influence of others words and actions on our own lives. There is a song I love by a band called Sleeping at Last. It sums this all up for me stating, “We are made of love and all the beauty stemming from it, we are made of love and all the fractures caused by the lack of it.”

The voice of the Enemy… here we go, right? I don’t believe in some enigmatic force of evil that simply exists in the universe. No, I believe that there is a “person” – an Enemy – that is evil, and that this Enemy works to further separate all of human kind from our Lord and Creator. I do not think for a moment that just because I am covered by the blood of Jesus that the Enemy (or his minions) do not “whisper” into my ear as much as they are allowed to (consider Job). I believe that the dominion of the Enemy is at least a factor in the foundation of each of our belief systems, and that this begins long before any of us comes to faith in the Lord (consider our inherent sin nature). And don’t think I believe we can’t overcome this one – I believe that though we rejoice that are names are “written in heaven” we have “authority…to overcome all the power of the enemy.” (But we have to recognize the need and exercise the authority!)

His Voice…this is the whole point of the thought right? How do “his sheep know his voice?” It is not as if the Lord is speaking to us in an audible voice (not saying he won’t, but it is not commonplace). This is an inner communication through the power of the Holy Spirit.

So where am I going with this? I have come to realize that there is just so much noise in my own head. I believe Jesus when he says that I know his voice. I am one of his sheep after all. What I have come to realize though is that this is a matter of discipline. This is truly a matter of holding every thought captive to Christ. The only way I can know for sure if something I think is from God (or at least in line with the truth or His will) is to hold it up to the light –God himself. I have become better at hearing His voice, but have also come to realize that when He speaks to me about something that I agree with I hear His voice and KNOW it is him. Then there are those times when I hear Him, but I am not real thrilled with what I hear him saying and then I wonder, “Is that God or is that me?”

This is especially difficult when I am trying to listen to Him regarding the kids’ health and treatment. It is even more complicated when things are not going well in this area and when there are times of waiting and times of silence. Still, I trust in His word. I trust that I will seek him and he will be found by me.

Jeremiah 29:12-13

Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.

Hebrews 11:6

And without faith it is impossible to please God, because anyone who comes to him must believe that he exists and that he rewards those who earnestly seek him.

James 1:5-6

If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him. But when he asks, he must believe and not doubt, because he who doubts is like a wave of the sea, blown and tossed by the wind.

I have a really cool story to share concerning this concept, but I have no more time to write today. Next time I write I will share how listening to his voice multiplied $230 into $580 and provided some much needed peace about the latest “unknown” for the kids’ condition!

Hunker Down...A Long Road

God is good (as we say in my circle of girl friends) all the time.

The last 5 months have been pretty difficult ones. As I reported previously, the twins spent most of November, December, and January plagued by infection after infection. It was only recently that I realized that we had become pretty lax in making sure that we were truly following the healing protocol and giving enough time at each new step.

Today we had our third appointment with our new doc. Dr. Chris is actually a neurological chiropractor who we began consulting in order to rule out any subclinical or subtle neurological explanation for why LittleM cannot swallow. Even after releasing her posterior tongue-tie (which was very severe) this kid still cannot swallow without washing her food down with a large gulp of water. Just image how full she gets this way – on water – not food. It is definitely a problem. It is this reason that she still has to drink most of her nutrition.

Dr. Chris is literally the first person I have found who can truly carry a conversation about FPIES in relation to the immune system in relation to the respiratory involvement, in relation to the neurological involvement… This doctor has been dealing with this issue on a daily basis from a holistic approach long before he met us. This is SO refreshing!

Here is the plan:

Blood Work

Dr. Chris is ordering a number of tests. He is looking at things that have not been looked at like thyroid function, ANA, C-Reactive Protein, Cortisol, and other things as well. Most reassuring is that he is listening to EVERYTHING I am telling me, assuming that I am telling the truth and trying to determine how it all fits together.

We have always said, “These things are a piece of the puzzle, and our doctors don’t even admit that there IS a puzzle.” It is pretty shocking that we have found this kind of medical collaboration with a chiropractor, but hey, I’ll take it!

Diet

Dr. Chris wants us to further restrict the diet until there is significant healing. He is thinking that we may see enough healing in a matter of months to THINK about starting food trials again. As of now, we are not to introduce any new foods (except avocado).

We are adding a supplement that is designed to heal the gut lining. For the first 2 weeks we are to remove all other supplements including probiotics (Dr. Chris explains that the probiotics can be leaking from the damaged gut lining and antibodies may be produced to those as well).

Consultation

Dr. Chris is very humble. He repeatedly tells me that he doesn’t know everything and points out things that are “his opinion.” Today he actually told me that he is not 100% sure of what we SHOULD do, but he is extremely confident of what we SHOULD NOT do.

To that end he informed me that there may come a time when we want to consult with an immunologist that he works with in North Carolina. This man doesn’t see patients. He consults with doctors. He would take the history and labs and then actually do research. He is over $300 per hour! It may or may not come to it, but WOW this is something new!

Lip Tie

Dr. Chris advised us that while trying facial release therapy may be in order to treat LittleM’s newly discovered lip tie, he doesn’t recommend that we give it very long. He feels that it is imperative to get this resolved as soon as possible. After trying to simulate the effect of a major lip-tie in my own mouth and then trying to chew and swallow, I am inclined to schedule the surgery as soon as we can.

LittleR also has multiple lip ties off to the side of his mouth on both sides, but I am not sure if this is restricting his ability or not. I am assuming (simply by the fact that it takes him so long to eat) that it is.

Hunker Down

The main message that Dr. Chris conveyed to me is that we are only in the infantile stages of “attacking” this condition. He warned me that this was going to be a long road, and that there were many issues going on right now that we can’t even THINK about addressing because with the immune system in the state it is in, these issues would not remain resolved.

My favorite thing that he said (only since I KNOW it to be true and people think I am over-reacting), is that the twins have NEVER been “immune-neutral” in their lives.