Clarification...

I feel the need to clarify some of my recent activity on my facebook page. I have been a bit more transparent about my children and our lives together as a family. I think that I am comfortable sharing all the crap now because Truth is officially ours and the fear that someone will stop that adoption is gone!

Here it goes...

The recent behavior of my children, unfortunately, is my normal...It is COMPLETELY NORMAL, like everyday morning to night does not skip a day normal for the following things.

-At least a few times a day I am in one way shape or form physically hurt during the day, that may look like being punched, kicked, bit, slapped, pushed, or just plain beaten (and yes I can say beaten bc over the years I have been sent to the hospital about 5 times from the physical abuse of my children)...This has made me a STRONG woman, physically and mentally, becuase not only can I still handle my 50lber I KNOW that they do not mean to hurt mommy, they are coming from a place of deep pain and do not know how to handle that yet.

-At least once an hour I am reminded that my children hate me, want to kill me, I am told details of how to plan to hurt me, I am called a bully, told I don't care, that they wish I would leave, that I am not fair, and somethings I cannot bring myself to type...This has given me an amazing ability not to believe in Satans lies! My God LOVES these children and they love their mommy enough to trust that I am NOT going ANYWHERE so they can treat me like dirt.

-I am very comfrotable with having prifessionals in my home at all hours of the day or night! Right now we are at an all time low with therapy hours (all combined) being only about 40 hours a week! I have been analysed FOR YEARS to see if any piece of my parenting may be causing my children to have their struggles and FOR YEARS I have passed all the tests and been told that I couldn't do any better with my children!...This has shown me that God gave me excatly who I was ment to parent, not any more not any less, In all honesty I WISH that is was my fault somehow so that I could change something that would help my children!

-A few times a week I am reminded that school, church, and society truly does NOT understand the effects of trauma on a child...This has pushed me to become a fierce advocate for my children! Do not tell me that you are not willing to help a Fasnacht, this mommy bear is ready ;)

So here are some important things to know about my children...
-They do not have typical responses to changes within our family...
-They are amazing caring, loving children...
-They each have a unique struggle (which I believe will be an incrediable strength as they grow!)...
-They do not intend to harm others...
-They LOVE Jesus!...

So when the outside world wants to try to "fix" my children and find "reasons" to their behavior...this is nothing new for us! This is an everyday, all day battle with sin that we are fighting together as a family!...The childrens behavior is not any worse because Selah has a feeding tube or Truth is soon to come home they have not had an increase in behavior with Ryan out of the country...There has just been an increase in sharing with full transparency what our current struggles have been.

As I said before I KNOW for a fact that my childrens challenges NOW will lead to incrediable strength later in their lives! I have met very few children with as much fight as my children, as adults they will be completely unstoppable! I pray often that they will use this inside fire for good and to show the amazing love and forgivness of Jesus!!!!!

Special Consideration...

Dear woman at the school who chose to roll your eyes at me and look completely disgusted,

I would like to give you a chance to look at me with a different perspective, a perspective full of truth. The next time you see a parent who is physically struggling with a child of any age I ask that you ask yourself if maybe, just maybe this situation needs some special consideration. If I had had it in me I would have stopped you to try to explain what was happening but honestly all my energy reserves for the day were being used to contain my child.

Please I ask of you to make sure that you filter your responses. I have children who wake up around 4:45am...My youngest, because of her feeding tube schedule goes to bed between 9:00pm and 10:00pm, meaning that on a good night, after the dishes are done, house picked up, and time spent with hubby I get about 5-7 hours of sleep but I am up about 3-4 times during that time to deal with some need that someone has...So I am tired

I have children with mental health concern who require extra parenting, hours of therapy, and frequent visits to a variety of doctors. I myself have to offer these children constant special considerations...not because I expect less from them but because I have extra high expectations of how great their potential truly is!...So I am over booked.

We are waiting on the embassy in Ethiopia to tell us we can bring out oldest daughter home for good! We miss her and long for her to be here with us...So I am longing.

My youngest is unable to eat anything, details are not necessary, so she is on a feeding tube. Due to the feeding tube I have zero, let me repeat, zero people who are currently able to watch her for me...So I am alone.

I run into "you" everywhere we go, the store, school, the park, the drop off line at preschool. "You" are the face that I so disparately wish to avoid .."You" are the teacher who means well but truly does not get it..."You" are the friend who silently judges, but I feel it..."You" are the ones who think that my children's "issues" are made up..."You" are the one that I pray for.

So, Dear "You" I ask that you use the filter of the possibility that the mother you are rolling your eyes at is tired, is over booked, is longing, is alone. I challenge you that when you see that mother that makes you turn your nose up in disgust that you instead try out a smile...honestly it could be the ONLY friendly gesture she encounters in a days time.

What if that mother is not blessed as I am to know Jesus...because sometimes it is ONLY my relationship with HIM that keeps me placing one foot in front of another! What if that was your chance to be Jesus to someone and you missed it! What if your nasty judgmental attitude was how Jesus looked at you, I am sure your life is not perfect.

I would like to thank "You" for reading this...as I am sure that we are ALL guilty of judging a situation we know nothing about.

The fork in Selah's road...

The fork in Selah's road...

We stood at a point in this FPIES road where we were to find out how "serious" it is and what we do next...turns out that Selah is blessed to walk the path that only 5% of children with FPIES will be able to walk. The allergist today explained that 95% of children with FPIES have reactions to 3-5 foods, now remember that may not sound tough but if soy is a trigger it is in SO MUCH same as milk or wheat so this comes with MANY challenges!!!! Then there are 5% of children with FPIES who have reactions to all foods...Selah is there. She believes that this group of children actually have something other then FPIES but currently there is not another diagnosis so they are under the FPIES umbrella...

What does this mean...Things Dr Brown said during the appointment...

"You will need to get used to the NG Tube...Selah will more then likely rely on it for years to come."

"I would not recommend a G Tube unless absolutely necessary, I have seen children be successful with NG Tubes for years."

"Please remember that the 5% never truly have safe foods...any food can become a trigger at any time"

...I asked her about food combinations and she said that we just never know, Selah may be fine with bananas and fine with blueberries but when eaten together may cause a reaction...

"It does not matter which foods you try because she will more then likely have a reaction some day to it"

"A food rotation may work but we have not seen success in other children like Selah."

"Selah should stay on the infant formula."

...SHE BLESSED US WITH 6 CANS!!!!!!!!!!!!!!!!!!!...

"When Selah hits school age you could switch to night feeds and remove the tube during the day so that she fits in better with her classmates."

"You have done a great job so far with her Mom so keep doing what you have been."

"Watch for dehydration and take her to the hospital if need be."

We were not given ANY sort of a road map for a 5% child...we were not provided a flashlight, or the promise of a light at the end of this tunnel...we were not even given hope of an easier path in the future...we were gently pushed to this side of the FPIES fork and told to try our best, take good, notes, and look to the hospital for hydration when needed.

No follow up appointment is needed because there is nothing that can be done. The Dr truly believes that 5-10 years down the road they will have a way to test for this but does not see a treatment option anytime in Selah's childhood.

These words sound SAD, HOPELESS, and HURTFUL...BUT I have to say that Dr Brown was so pleasant, loving, and praise filled!!! Selah LOVED her and allowed her to examine her (HUGE FOR SELAH). I feel obviously a little hesitant in my confidence of parenting Selah THOUGH truly truly blessed that God is allowing us as a family to walk a new path of need! I know for sure that I can not make it though one minute with out His help, His guidance, His peace!!!!

So I refuse to be knocked down by this!!! I refuse to allow Selah to be hindered in ANY WAY...SATAN CAN JUST LEAVE THE FASNACHT FAMILY ALONE ALREADY!!!!!!!!!!!! We love Jesus, Hate sin, and truly believe that all of this crap that we walk with daily is the best possible plan for our family!!! Some day when we arrive in Heaven that is were we will know healing!!!!

Please know I do ask daily for my children to be healed and daily I am told NO... absolutely NO. I have even done the awful thing of saying "why can I not have ONE child with out such a tough walk in life..." to which God QUICKLY reminds me of my precious Aurora!!!! Every time I talk to Jesus about taking away some of the burden He provides a friend to pray for me, a random meal, so small piece of comfort. He does not heal my children...at this point in their lives they need these struggles, they need this pain or they may not be the Jesus loving children I see in them! They talk to Jesus ALL DAY LONG!!!!! about EVERYTHING!!!! They understand hard things, hurt, disappointment, grace, mercy, and forgiveness!!!

I was reminded today by a dear friend of my about all the things that God has said YES to :)...such as, and yes I ACTUALLY asked for all these things...Lunch meat, brought by a friend about 20 mins after I asked...Candles, received a text that day from a friend cleaning out her closet...baby wash (saving $$ to get TRUTH), brought by a friend the very next morning!...formula, free from Drs...a garden, received a fb message almost INSTANTLY from a friend wanting to split a garden with me this summer!!!! So in all honestly Jesus says YES to hundreds of tiny needs I have along then never ending journey!!!!!

beauty from ashes...even covered in ashes from head to toe as long as we can believe in the promise of the beauty there is reason to take the next step!

4.5 hours...

This post is more for Ryan but thought everyone could get a good laugh out of my day ;)

Alarm, aka Selah, goes off at 6:40am
I awake to find my princess up and cheery...but tube free.
6:45 5 children come racing down the stairs for breakfast (Graham, Everett, Blake, Israel, and Aurora)
Ryan prepares breakfast while I clean the tape gunk off the tube
I quickly jump onto facebook to search out some answers to a tube related question
7:30 5 kids are fed hubby is in the shower...
I start the morning routine of kids getting dressed, teeth brushed, faces washed, hair done, chores started...
I send my 7 and 5 year olds back up stairs to change into warmed clothing...
I am hand washing the kitchen floor by hand to insure that Selah cannot get ANY food (first of 3 times this happens in a day)
As I prepare her supplies to out the tube back in one of my children asks "what can I do for you mommy" to which I reply "please talk to Selah for a min while I do this"...to which they reply by becoming violent and totally freaking out...
I pause my tube prep to place said child into a safe predesignated area...getting beaten, spit on, called names, and finally kicked while doing so...and then return to preparing to put Selah's tube in.
Ryan is done in the shower and ready to help hold Selah down...
Tube procedure...
clean tube
put medal thing back into tube so that it can be inserted properly
cut 3 different types of tape so it is ready to go
lay out a blanket to swaddle her in
measure the tube on Selah
Swaddle screaming baby
put tape on her cheek
insert tube...first try did not work, pick up and hug, try again SUCCESS
quickly tape tube, and pull out medal thing
use syringe to pull out stomach contents and make sure tube is in correct spot
flush tube
finish taping and LOVE ON BABY!!!
Once this is done Ryan addresses child who was violent and runs out the door with another child who needs to catch the bus
I finish cleaning the kitchen and move to the dinning room (trust me NOT spotless just the floors)
Start the laundry
Prepare Selah's first feed of the day with her new pump...
oh and by the way it is now 8:20 ;)
I get her all hooked up she is walking around sporting her new backpack...
I finish vacuuming the dining room
Kristi calls and we spent a couple mins chatting about nothing
Selah comes to sit on my lap, I cuddle her
She then VOMITS all over both of us!!!
I quickly stop feed and hang up the phone.
I clean the vomit off the floor, check her pump to see how much she ate about 129 of the 220ml needed
I jump back on the phone an call the Dr, they put me straight threw to the nurse based on the Drs notes
The nurse is not sure what we should so and asks me to keep updating her as to how Selah is acting...our Dr will be in this afternoon
9:00...TSS arrives and we need to rush Israel and Aurora to preschool
(bad mommy moment this is where i mention that my kids woke up and took annoying pills this am ;) )
PLEASE NOTE...Selah and I are STILL covered in vomit
We drop the kids at school
Arrive home in time for a wonderful friend to drop off a ton of pedialyte!
Enjoy a short visit, during which Selah vomits again (small)
Friend leaves and I call the nurse back
Nurse takes notes and asks if I can manage her at home, yes, and says that it does not sound like a virus but she is not familiar with FPIES so just to keep her updated...I explain that I would like to give her a tube feed of pedialyte to insure hydration, nurse agrees that sounds good.
10:30 give pedialyte feed...
Selah and Everett play wonderfully while mommy researches FPIES, and cleans the tube supplies from the am...along with various other Mommy things ;) and start this post!
Ryan picks up Israel and Aurora from preschool and arrives home with them around 11:55
Daddy picks up Selah and says something like "She smells a little funny" and I am reminded SHE IS STILL COVERED IN VOMIT!!!!
I stop writing, dance with the kids through "these are the things" song...and change Selah
Changing Selah is MUCH more in depth now!!!...I need to unpin the tube from her shirt, clean the tape off...change clothing and diaper...redress, repin, retape...
Now it is time to start the LUNCH RUSH ;) and clean up procedure again...time to start a tube feed and prepare lunch

AAAAAAAAAAAAHHHHHHHHHHHH is anyone else laughing?????? I totally am :) while writing all this out I am reminded of other things like Selah almost knocking her poll over which leads me to laugh that we HAVE A HOSPITAL POLL IN MY HOUSE!!! I am brought to giggles over HOW EXCITED Selah was cleaning up her crayons and her goofy grin she would give when we cheered for her!!! I am smirking over Everett coming downstairs while my friend was here and saying "Who is that lady" ;)...I am still VERY confused by this FPIES but it sure does add a whole new level of crazy to the household!!!

And Honey if you ever arrive home and wonder what I have done all day here are the first 4 and a half hours typed out just hit copy and pate ;)...

Part way down the road...

I would like to say thank you to everyone who has been praying us through everything with Selah!!! I would also like to say PLEASE do not think that I am ignoring your wonderful suggestions! I know that everyone is well meaning...but...Selah's little body is just different, it views protein as an illness (along with multiple other things) and starts to "fight" when they are introduced to her. It fights so hard that her white blood count goes up, to about 22 (should be around 10), she begins to have pure water bowel movements full of mucus. The mucus shows that her intestines are irritated or inflamed and that she is not absorbing the nutrients from whatever just went through her. She can even go so far as throwing up to the point of dehydration at the introduction of a "trigger" food or substance.

Though this all may be new news to my friends and family we have been going through this from the time that Selah was born, just without a name to go with it! It is as if I am part way down the road looking back now with some understanding. She even lost weight last summer when foods were introduced! We have had to get up at least twice a night every night to feed her extra bottles because everything would just run out of her causing her to loose weight and hydration. I have spent more hours then I can count with a syringe following her around the house squirting 5mls at a time into her little mouth trying to avoid a hospital stay. We have sat on the phone with Dr after Dr for hours on end! This is not new to us! We "lost" our "proactive" approach to her hydration the beginning of March and that started this snowball effect coming to the possible diagnosis of FPIES.

We have tried the probiotics, prebiotics, slippery elm, pure organic fruits, veggies, meats, and grains, one dear friend even BROUGHT be ALL the ingredients to make my own pedialyte!!!! The problem with all this is that they all have caused "FPIES reactions". She cannot tolerate (at this time) ANYTHING natural :(. Such as her reaction to the orange pedialyte the other day...I should have put in the post that she drank maybe half an ounce in the am! not even very much at all!!!!!! Her reaction started around lunch time, classic of FPIES to start hours later, and continues still today in her stool.

I am in NO WAY an expert on this subject and it does not make ANY sense to me how a child can be "allergic" to pretty much all food. It still is shocking that if she gets ONE piece of rice just IN her mouth I KNOW that she will have water for poop later in the day!!!!

BUT PEOPLE! I rest in the knowledge that God can use ALL THINGS for good! I believe that we have sin in this world and that God may NOT heal her. I know that this may be tough for some to understand but God uses people such as Selah to touch SO MANY lives for his kingdom!!! I only want her to be healed if that is Gods plan for her life!! YES the easy way would be for healing BUT would she appreciate life enough? Would we appreciate her enough? Would I have been able to share about my WONDERFULLY LOVING JESUS with SO MANY if not for her FPIES? I have met so many lovely people on this journey that I can not even say that I would change it if I could. I know that may sound cruel...SO many people have been SO giving of their time, abilities, and resources!!!!! I can NEVER thank them properly!!!

I have more fear, sadness, and worry for the "perfect" families who have very few reasons to talk to Jesus every minute of every day...I feel deeply for people whose biggest struggles are some of my greatest joys! Look not at your children as little inconveniences but as mini miracles that they are in this world with out the struggles that we all could face!