Broken Men Break Their Children....I'm Bigger Than That

About two weeks ago LittleM began having a hysterical over-reaction to being buckled in the car if there was not a grown-up IN the car with her.  Even though we don’t leave the kid’s in the car alone she would FREAK out!  After buckling the twins in their seats I would close the door and walk around the car to the driver’s seat.  In that amount of time she would be literally in hysterics.  Overnight this little girl became completely terrified of being left in the car.  

One day she got into her seat, but refused to buckle herself until I was in the car.  Thinking we were simply dealing with the next chapter in the developing war of wills with your typical toddler, I verbally forced her to buckle herself.  I told her that she needed to obey and if she did not she would have a punishment.  She cried and cried, but as I firmly repeated myself she obeyed.  BUT by the time I got from the passenger seat (where I had been putting the lunch and diaper bag in) to the driver’s seat she was a mess.  What I learned that day though, was that if she was not buckled in (read: trapped) she could handle herself much better.  

On another occasion my sister-in-law had LittleM.  She stepped out of her mini-van to walk her son to the front door for a play-date.  LittleM FREAKED out.  She was scared of being left alone in the van.  We don’t leave the kid’s in the car when we go places, but of course there have been plenty of times when we’ve loaded them in the car and needed to run back into the house to get whatever it was we might have forgotten inside.  In all of her 3.5 years of life this reaction has NEVER occurred.

I began praying about this.  Had something happened when I was not home that scared her?  Had she been trapped in a closet (a favorite playing spot) or the bathroom?  Had there been a punishment that made her feel particularly trapped?  I asked my husband and there had been nothing.  One morning after praying about it, I remembered an event that happened shortly after we moved in with my in-laws.  For various reasons, we put a gate at the top of the stairs once we go to bed at night.  We use both of the two bedrooms upstairs and don’t want the kids wandering downstairs during the night.  A few mornings when I went downstairs to make the kid’s breakfast “bottle” I left the gate up.  After only moments in the kitchen I was running to the steps to help LittleM – who was hysterical at the top of the steps because she was trapped upstairs without mommy.  I realized that this was somehow related to her fear in the car, but it was still a mystery to me.   

The other thing I have noticed in this same time frame has been a deep inward breath that I clearly recognize as anxiety.  This has also been most concerning to me.  I personally had a childhood wrought with anxiety.  I was painfully shy and insecure (that is a whole other topic!).  Watching the birth of this anxiety in LittleM was more difficult for me than the hysteria really.  So I continued to pray that God would reveal the root.

Today I made “soup” for LittleM and LittleR.  "Soup" - this was what we called vegetable and meat puree before LittleM had her tongue-tie revision this May.  There was a time when the kids were about 2 when this is what we were trying to get them to swallow.  For some reason LittleM couldn’t even swallow this!  All she could accomplish was a loose stage 1 baby food.  The thicker “soup” puree was too much and she would not swallow it.  We were told again and again by the occupational therapist that we were seeing that this was a behavioral issue.  Though I really didn’t think so, the doctors continued to tell us that there was nothing wrong with LittleM’s mouth.  In a moment of doubting myself I entertained this theory.  I decided that LittleM was GOING to swallow her soup or suffer the age appropriate punishment.  This little 28 month old repeatedly chose punishment over swallowing her “soup.”  Thinking about this now brings tears to my eyes.  We sat there at the table battling for hours.  I decided that one day that she would not get up from the table until she had eaten her 2 ounces.  We literally sat there all morning.  She was faling asleep at the table – both from being tired and from being emotionally exhausted from the timeouts, spanks, and yelling that she was enduring.   I am not advocating this approach – not at all.  When I took her from the table and carried her sleeping into her room, I sat there on the floor at her crib rocking her while I cried.  It was terrible.  After nap we went at it one more time.  Later that evening I called my mom – I was at the end of myself.  After going over a 2-year-old's choice of discipline over swallowing some soup – a two-year-old who loved the approval of her parents – my mother helped me to see that this was crazy.  She helped me to stand on what I knew in my heart – something was physically wrong with LittleM’s mouth.  As a side-note, it wasn’t long after that that this OT and I simply COULD NOT work together.  

Fast forward to today.  For the first time since those days, I made “soup” for the kid’s.  I didn’t call it soup because I didn’t want to revisit that horrible experience on LittleM.   I called it broccoli/carrot puree, but as soon as LittleM saw it she said, “Did you make us soup?”  I had to answer honestly, but I didn’t really want to.  I asked her if she wanted to have it to which she said yes.  That in and of itself was a shock to me.  She asked, “Is this the same soup that I had when you made me a crib and I couldn’t get out of there?”  My heart fell like a stone into my stomach.  “Yes, it was honey.”  She just kept eating as though it all meant nothing.  

I sat there for a few moments wanting to cry, and then I began talking.  I knew that this was my opportunity to do some repair work with my daughter. 

“M,” I began, “Did that scare you when you were in your crib and you couldn’t get out?”  

“Yes it did, because I needed you and you didn’t come, and I was screaming (yes she used the word screaming),” she answered.

Tears were welling up in my eyes.  I had put her in her crib several times as punishment in between each horrible bite.  At one point I was so angry/confused/frustrated that I closed the door to her room and left her in there screaming for probably 10 minutes.  Oh – I will never forget that day and I so wish I could do it over again.  Thank God that he is bigger than that day.

“M. did you know that mommy made a mistake that day?  Were you getting in trouble because you weren’t swallowing your soup?”  With a mouthful of meatball, she shook her head yes. 

“Mommy is very sorry, M.   I didn’t know that you had a tongue tie.  I didn’t know that you COULDN’T swallow your soup because your mouth wouldn’t work right.” 

She talked with me about it for a few minutes.  She was very matter of fact about it – not upset.   I was absolutely shocked that she remembered this event.  I was not shocked that it had affected her, but that she REMEMBERED it.  Right now as I am writing there are tears in my eyes and a big hard lump in my throat.  But THANK THE LORD He is BIGGER than this historical event in my daughter’s life. 

I reiterated my sorrow over these events several times to my 3.5 year old – in 3.5 year old language.  LittleR was there participating in the conversation too.  He had some significant stress watching this event when it happened.   At one point I very seriously called LittleM’s name and told her to look at me.  When she took in one of those deep anxious breaths I knew that she thought I was about to say something of a disciplinary nature; to the contrary, I reiterated my regret and remorse to my children.  At that moment I believe I saw a change in her countenance.  It was as though that little girl exhaled all that anxiety right out of her little body. 

When she was finished eating all of her lunch I got her down from her booster seat and held both of her hands.  I looked in her eyes and said, “M, mommy made a big mistake and I am SO sorry.”  This beautiful, articulate little girl looked at me and said, “You ARE sorry, and I am sorry too.”  My heart melted and then she melted it again when she reached her little arms around me and hugged me tighter than ever before.  

We always end timeout conversations in that way – holding hands, conversation, hug…forgiven, but never before has that little girl reached out and actively hugged me in one of those moments.  Usually she passively lets me hug her.  This was different.  I am just believing that the Lord healed something in that little one today – something that I had done to her.

Thank you Lord that YOU are bigger than my brokenness.

Listen to this beautiful truth – spoken by the Lord to you and me.

Misty Edwards
"I Knew What I Was Getting Into/All Men Are Broken"

“I knew what I was getting into when I called you I knew what I was getting into when I said your name – I said it just the same.
I knew what I was getting into and I still like you.
I knew what I was getting into.
Listen my beloved,
I am not shocked by your failure.
I am not shocked even by your sin.
Only I can see the end from the beginning.
Only I can see where this is going.
Where you see only your failures, I see a fighter .
When you see only your brokenness, I see a lover.
I am not shocked by your failure.
I am not shocked even by your sin.
Listen, listen, I knew what I was getting into when I called you.
I knew what I was getting into when I said your name – I said it just the same.
I knew what I was getting into and I still like you.
I knew what I was getting into.
Just don’t give up. Don’t give in.
If you don’t quit you will, you win.
It’s all that I’m asking,
Just don’t give up. Don’t give in.
If you don’t quit you win, you win.
Listen, cause everything is in my hands.
It’s gonna be all right - gonna be ok”

I hear him singing over you.
He says:

“Everything is in my hands – it’s gonna be alright, gonna be ok.”
He says,
“Everything is in my hands. It’s gonna be alright.”
I hear him singing over you. And some of you are hearing Him saying your name. Saying your name – he says to you,"

“I’m not like your father.
Listen my beloved one, I’m not like your father.
Cause even the best of them are just broken brothers.
Listen my child, listen to me I’m not like your father,
why are you putting that on me?
Listen, listen, I’m not like your father.
I’m not like your father.
Cause even the best of them are just broken brothers.
Listen, For all men broken,
and broken men break their children,
Who grow up to be broken men…
BUT I’m bigger than that."

"Listen, I’m bigger than that.
And all men are broken,
And broken me break their children,
Who grow up to be broken men…
But I’m bigger than that
Come to me – I’m bigger than that."

"I’m not like your father,
and some of you have been so afraid of repeating the same mistakes –
that fear has you frozen.
But listen, listen,
I have the power to change things,
and I have the power to make you new,
and I have the power to rearrange that same old chain.
And listen you’re not like your father.
It’s a new day, it’s a new day.
Your not like your father and the sins of their fathers, and their fathers, and their fathers and their fathers fathers will not be on you.
Just keep on, keep on coming…
Listen my beloved,
All men are broken
and broken men break their children
who grow up to be broken men.
Listen, I’m bigger than that.
You gotta let your fathers go.
Your fathers were broken by their fathers, who were broken by their fathers and their fathers and their fathers and on and on and on…”

We’re all in this together.
And there’s only one good father.
He’s the father of all creation.
He’s the father of lights,
the father of glory
and He loves us so well.

And he says,
“Everything is in my hands -
it’s gonna be alright –
you’re gonna be ok.
No regrets.
Everything is in my hands -
it’s gonna be alright –
you’re gonna be ok."

"And some of you have been so full of regrets.
Your babies are my babies.
Listen, your babies are my babies.
And I will be the father.
Cause your babies are my babies.
I’m gonna turn it all around - just wait and see.
I’m gonna make everything beautiful just in time.
I’m gonna turn it all around - just wait and see.
No regrets.
I’m gonna make everything beautiful just in time.
It’s just a matter of time."

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.