Johns Hopkins & Cohen (a match made in heaven)

I think I can just about reach one!

Here fishy, fishy...

We are so grateful for all the prayers that have been going up on our behalf.  It is so humbling to walk through this journey with Cohen, where we are in a constant state of learning.  After having four children I had apparently convinced myself that I had seen and experienced almost everything....and then I met Cohen!

We were truly blessed to have been directed to Dr. Robert Wood by a veteran FPIES mother and the founder of the IAFFPE organization.  And lets not forget my very pushy and well intended sister that helped me realize that it was time to change physicians.  Dr. Wood is considered to be one of the top three experts for FPIES and has been not only writing journals about the subject but has been involved in research as well.  He has treated over 500 patients with this condition....it is safe to say HE IS AN EXPERT!!

Cohen, making new friends!

Oh what a difference it makes when you are sitting in the presences of someone that knows your child's illness inside and out.   Todd and I left the appointment with full confidence that our little man was finally in the right hands.

For those of you that don't know Cohen was diagnosed earlier this year with a condition called:
~ Food Protein Induced Entercolitis Syndrome..... or FPIES [pronounced F-pies]

Food Protein Induced Enterocolitis Syndrome (FPIES) is an allergic reaction in the gastrointestinal system. The most common triggers are milk and soy, but any food (even those thought to be hypoallergenic e.g. rice, oat) can cause an FPIES reaction. FPIES typically starts within the first year of life.

Unlike most food allergies, the FPIES reactions are delayed and usually begin about 2 hours after ingestion of the causative food. FPIES reactions are characterized by profuse vomiting and diarrhea. In about 20% of cases the child will have such an extreme reaction to a food that they will go into shock and need to be taken quickly to the Emergency Room for immediate treatment. ~IAFFPE

Where we are now:
Cohen has either vomited and gone into shock or had blood in his stools from every food that we have given him up to this point.  He currently receives all of his nutrition from a special Amino Acid based formula via a NG tube (aside from nursing at bedtime).  We are working to help him take in more formula orally but it has been a challenge.  Trialing foods has also been extremely difficult because Cohen has developed a food aversion.

What we learned at Johns Hopkins:
Dr. Wood impressed us immensely with how thoroughly he had investigated Cohen's case before he ever walked into the room.  He was able to fill in the gaps for us and explain how all of this fits together, shedding some light on the struggles we have faced in the past few months.  

Dr. Wood began to inform us, in a very, "let's cut to the chase" manner, that Cohen has a very complicated case of FPIES, and proceeded to give us a list of expectations. 

 The Hard to Hear

~We are dealing with an atypical or more severe case of FPIES
~We can expect to be on this special formula for a very long time... years
~Cohen's body doesn't handle food well
~It is very likely that he has some additional GI issues
~Given Cohen's history, we must expect to fail far more food trials than we will pass 
~Not to be surprised if we don't have any or only a couple of safe foods by the time he turns two
~Be patient and prepared for a very long difficult road
~There are no tests that can guide us, just our instincts and Cohen's history
~Stop all food trials for the next four weeks and push formula
~Cohen's food aversion will probably get worse before it gets better "because frankly food as always hurt him"
~Consider placing a g-tube into his stomach to feed him his formula
~In 6 weeks we will begin trailing some lower risk foods at home and then later on we will trial big triggers in the hospital

The Hope

~That he and his staff will be there for us every step of the way
~That most kids outgrow this condition around the age of five (probably the only time I smiled during the appointment)

Although nothing Dr. Wood said was a shock to either of us, it was still difficult to hear the words come from him.  I guess there was the hope that things weren't as bad as they seemed.  However, with all that what was said we still brought home a smiling little boy to love-on and enjoy.  

I am learning that moving forward will quite often resemble backwards steps.  Excepting the obstacles ahead allows me to prepare myself for our battle and to no longer feel side blinded by set backs.  Things won't be easy but we are very fortunate to have hope that one day Cohen will no longer have to deal with his allergies.  We are confident that we will eventually find our groove and begin to live a new kind of "normal".... I mean really, who defines "normal" anyway??

What I am sure of:
Cohen is not FPIES, it is merely part of what makes him unique and wonderfully made.   FPIES may slow us down a bit but it will never keep us from making the most of this beautiful life that God has given us.  This journey has so much to teach us and I pray that someday we will be able to use our experience to help others.  

Today, in the midst of learning how to navigate through this new way of life we will focus on finding the good in our circumstance... and give thanks for having been given this wonderful little guy that just happens to need a little extra care!

Psalm 25:1-3a  
In you, Lord my God, I put my trust.  I trust in you; do not let me be put to shame, nor let my enemies triumph over me.  No one who hopes in you will ever be put to shame.

How are journey began...


Current Studies:
http://iaffpe.org/docs/Ruffner_et_al_JACI-IP_2013.pdf

http://iaffpe.org/docs/FPIES_to_trivial_contact_w_rice_EJP_May_2013.pdf

Talk or Tell

My goal as a parent is to equip my children with the necessary tools for them to have the ability to mange themselves and learn self control...so that they may grow into adults that know how to manage themselves and demonstrate self control.   

One of my greatest priorities is to provide my children with the ability to resolve conflict with others.  Kids aren't born knowing how to handle situations, we all must learn the techniques to bring resolution.

I think one of this biggest problems that we as parents face in our day to day parenting is the dreaded "Tattling!"  It it often seems like it is more of an instinctive trait... as oppose to a learned behavior.      

It is tempting for us parents to intervene and problem solve for our children but this doesn't teach our little ones to be able to resolve the inevitable conflicts that are lurking in their futures.  If we don't equip them with the knowledge and skills needed to work through disputes than we are disabling them to stand on their own in the face of trouble.

You could say that I have my own little focus group in my house, which makes it ideal for testing and trying out techniques for child rearing!  There are plenty of opportunities in our home for children to practice self control and conflict resolution....but first I must teach it.

So here is the method that seems to be working amazingly well with our five little blessings.  However, it could work with any number of children, whether you have one or twenty.  

"Talk or Tell" has revolutionized the way my children deal with each other and their disputes.


What is it:

Tell, (a.k.a) Tattling:  Seeking an adult with the goal of getting another child in trouble.  However, telling has one exception..... Seeking an adult with the goal of keeping yourself or another child safe.

Talk:  This is the act of handling a situation by talking it over with the person offending you or disobeying the rules.  For example: "Bob you know that I don't like it when you hit me, it hurts and doesn't make me want to play with you." or "Sally you know mama told us not to eat a snack before dinner."

How to apply it:

First, define the difference between tell/tattling on someone and talking with someone.

Next, spend time working through scenarios of when to Tell and when to Talk, make it a fun game and give them lots of chances to practice the appropriate responses.

Tattling is an easy concept for little ones to understand, the usually pick it up quickly and on their own....lol!  Talking on the other hand takes some practice to learn how to do it correctly, which is especially important for our children as they get older.

Talking requires you to care about the other person and their well being and having a desire for them to avoid bringing consequences upon themselves.   When we practice "Talk" scenarios we also discuss consequences of our actions when one refuses to listen to the voice of reason.  I teach my children that if the person you are trying to "Talk" with doesn't heed your wisdom then remove yourself from the situation and let them accept their consequences (this is not a chance for you to tattle).   It only takes a few times of receiving consequences for them to realize that taking the advice would have been the better choice. 

When my children come to me with the News Reporter Look on their face I simply say....Tell or Talk?  Their look quickly changes to one of deep thought.  Usually, they respond with, "Hum, never mind."  

The Telling Consequence:
Well, every good method must have it's motivation!  I make sure that whenever I hear them using the "Talk" approach I praise them.....I praise them in front of each other.....I praise them to their daddy, and I praise them in front of family and friends.  Praise goes a long, long way, which isn't surprising it's the best motivation for all of us!!  

However, on occasion you will have a News Reporter that just can't help themselves.  If someone tattles on another person......well then both the Teller and the Tell'e receive a consequence.  Yup, this motivates all parties to either, not commit offenses or to quickly encourage each other to resolve the conflict on their own.... without ME (the Consequence Giver).

We have a consequence chart on our wall, which is kept in a highly visible place where the kids can get to it.  If they receive a consequence than they must take a yellow strip out of the little blue folder and put it in their pocket.  Each strip has a household chore written on the back (these are not their regular chore)  Their conssequence remains a mistery until the end of the day when it is time to "pay the piper"...lol (this cuts down on all day pouting about their new chore).  Really, it's a win-win for all of us!  They learn valuable lessons and I get much needed extra help around the house. 

Since my ultimate goal is to TEACH them, I use a discipline approach  to change the undesirable behavior. 

*discipline- the act of  teaching appropriate behavior given along side of a consequence
*punishment-  consequence without correction

It is essential for the "News Reporter" and I discuss the proper way to handle the situation, so each mistake becomes an opportunity to learn how to succeed.  We then go and find the Tellie so that we can have a " DO OVER".  The two practice the correct responses using our "Talk" method, we also discuss how we could have avoided the problem in the first place.  

It is extremely important to be patient and willing to teach our children, so that they will be better equipped adults.... which is our ultimate goal!!  Kids aren't going to get this right every time....lets face it most of us adults still struggle with proper conflict resolution.   

I would love to hear if you tried this method and if it worked for your family.  Please feel free to share methods that you use that work for your family, after all it takes a village and we are all in this together!



Proverbs 20:11
Even a child is known by his actions, by whether his conduct is pure and right.



Other Post on Similar Topics:

Winning Their Hearts                            Learning Grace  
                                                                   



Yes Ma'am

                                                                                   
Big Little Blessings

Devil May Have Scored But God's Still Ahead!

You could say that it has been a rough few months for our family.  If you have been following our story you know about our struggle with Cohen's FPIES and his surgery and hospital stays.  In addition to what has been going on with Cohen we have had two of our little butterflies undergo surgeries as well. Then....just to top things off my wonderful husband's car decided to end it's life, no worries though God provided for us once again..bigger and better than we could have imagined.  During that process our little bullfrogs, butterflies, and myself had been left to spend a lot of time together hanging out at home while daddy used our car to get back and forth to work, which made grocery shopping extremely difficult.
Even beyond the recent trials there were many, many visits to many different doctors throughout this past year (that's a lot of many(s)....right!).  Our list includes...  x-rays, ultrasounds, pulmonary test, scopes, blood work, I.Vs., echo cardiograms,

and...
hospitals stays. I lost count somewhere around 75 (seriously no exaggerating just ask my friends that graciously kept my other children so that I could make these appointments).   I think I forgot to mention that somewhere in the midst of all this my big bullfrog was shot by an air soft gun damaging his retina and drain in his eye, I think he just felt left out of all the doctor visits.  Thankfully he is almost fully recovered and doing well but he required two appointments a week for over a month and then every week for two more.  So I guess you could say we have been rather busy for awhile...... but hey let's be honest I really brought all of this on myself!

Yep...I am ready to accept responsibility, I have blatantly made myself a perfect target for trials.  I have been working hard on my relationship with God and digging into His word trying to figure out His will for my family.  So you see it stands to reason that I am going to be attacked....and attacked I have been!  But I refuse to let the devil win!!  Those who have encountered his attacks know that he doesn't fight fair and he loves to kick us when we were are down....in fact when we are down is his favorite time to strike us hard.

What the devil doesn't get is that I am never down by myself, and I am never without my greatest source of strength.  My God will never forsake me or leave me and in the midst of any trial I will always have my joy.  So I will choose to find joy in these trials as well...

I could be mad that my children are chronically ill..... but I will choose to be glad that they will survive their illness.

I could be frustrated with doctors appointments and hospital stays.... but I choose to be glad that they have brought us closer to managing my little ones illnesses.

I could say why them, why me.... but I choose to say "how can we be used for Your kingdom through these experiences?"

I could complain about how much easier life should be... but I choose to be thankful that it isn't more difficult.

I could be angry that I can't do more to help my little ones... but I choose to be grateful that the One that loves them even more than me..... can!

I could be hurt that difficult times seem to continuously fall upon our family... but I choose to be thankful that I have been given the opportunity to be a part of this beautiful family.

I could hide behind my insecurities of being different from others and give into my fear of being a lesser mother than my peers... but I choose to shout to the world about what God is doing through these trials and accept my inequities, embracing my lessons in humility.

I could blame my God for all of this... but I choose to believe that He never wanted this world to contain sin and it is that same sin that causes trials in our lives. Once sin entered this world we all became destined to face trials in our lives (we can thank Adam and Eve for that one).

If I give into every "I could" I will be allowing the devil to score, so I will stick with the "I chooses" and give my God the upper hand, while I watch in astonishment as once again He defeats the enemy.  Unfortunately, these attacks will never cease and I know that the devil will not give up, so I will shield myself as best I can with the Words of my God.  It is through His strength that I can get back up and prepare myself for the next battle, knowing that something greater is at stake.  The devil will never stop....but he will never win!

Thank you God for never giving up on this imperfect person that I have become, one day I will once again be the perfect creation that you molded into existence.

Ephesians 6:10-18

The Armor of God                                                                                                            Finally, be strong in the Lord and in his mighty power. 11 Put on the full armor of God, so that you can take your stand against the devil’s schemes. 12 For our struggle is not against flesh and blood,but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. 13 Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. 14 Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, 15 and with your feet fitted with the readiness that comes from the gospel of peace. 16 In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. 17 Take the helmet of salvation and the sword of the Spirit, which is the word of God.18 And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the Lord’s people.                                        

Sugar and Spice and All Things Nice...

It was almost exactly 9 years ago to the minute when my world of bows, glitter, baby dolls and PINK began!  I was already blessed with a little boy and now I would have a sweet little girl to play dress-up with...because everyone knows baby boy clothes are just not as much fun as baby girl clothes.

This amazing little girl's gentle spirit has blessed me everyday since she was born.  Somehow she always knows when I need a hug or a cuddle.  I love my big butterfly with all my heart and I am so proud of the beautiful person that she is becoming.

Everyday I am more amazed with you sweet baby girl, you have such a kind a generous heart... as my grandmother would say, "You are as pretty on the inside as you are on the out!"  Thank you for being my extra arms, you are a wonderful sister and mentor to all of your siblings.  But most of all I love the way you love the Lord and the passion you have when you teach your sisters about Him. I love you more than all of the grains of sand, on all of the beaches, in all of the towns, in all of the countries, in all of the continents in all of the world!

Favorites

Food: Crab

Color: Purple

Number: 8

Letter: K 

T.V. Show: Little House on the Prairie

Movie:  All American Doll Movies

Book: Little House on the Prairie & Daniels Duck

Pair of Shoes: Pink and Blue Tennis Shoes

Place to Visit: Anywhere I just Like to Travel

Thing to Play:  Games

Animal: Horse

Time of Day: Lunch Time

Song: You are a Strong Towers

Thing to do With Daddy: Go Fishing

Thing to do With Mama: Cooking

Memory: Trip to See Noah in Pennsylvania

Season: Summer

Holiday: Christmas

Sport: Gymnastics & Soccer

Hobby: Pressing Flowers

Big Butterflies Letter to Her Future Self:

Dear Feature Me,
I hope that you still like to play with Lego's and American Girl dolls. And I hope you like
Star Wars too.  My favorite thing to do is draw pictures of horses, I hope to be an artist one day.  I love my great parents, going to church, playing with my friends, and soccer.  I hope that you are taking gymnastics and have worked really hard to get good at it.  I also hope that you are still an artist and like to write.

I have been studying my Bible everyday so that I can get closer to God, I hope you are still reading your Bible everyday.  Happy Birthday to you and me.

All of my Love,
Myself


Happy Birthday Sweet Girl you are growing up way to fast.  Thank you for being such an incredible source of strength for your Mama!

Deuteronomy 4:9  “Only take care, and keep your soul diligently, lest you forget the things that your eyes have seen, and lest they depart from your heart all the days of your life. Make them known to your children and your children’s children

When Life Gives You Lemons....

What do you do when life gives you lemons.......  well you build a fort in your living room of course.  It seems lately that we have had more than a fair share of disappointments but my crew handles it like champs.  I am so proud of this little gang that I have been blessed with and so it stands to reason that they should be rewarded.  

There are few things that could be classified as more fun to a group little people than a giant fort in the living room.   Believe it or not, there was a time in my life when the thought of cleaning up this montrosity would have halted the  fun  and  the opportunity  for making a new memory.  I am so glad that I am no longer that stick in the mud. 

mean really, there's only so many times in your life when camping out on the hard floor in the living room beneath a countless amount of blankets sounds like fun.  So tonight we camp...... because it's a lot more fun that wallowing in disappointment!!!

I have to admit it that it turned out  to be an extremely awsome fort!

John 16:22

So also you have sorrow now, but I will see you again, and your hearts will rejoice, and no one will take your joy from you.                                      

Life With a NG Tube

Dawn hadn't finished making it's debut when somewhere out of the ten pairs of eyes peering my way came the question.... "Are you okay with him going home with a NG tube?"    This was a brand new place in life for me and I wasn't sure what to say, but then I heard the words "I will do whatever is best for Cohen", leave my mouth.  The room became a sea of nodding heads and voices that murmured in agreement, "We feel this is necessary for your baby to thrive properly".  

The next question that came through the crowd of white coats was, "Do you have any questions?"  Do I have any questions????   I looked around the room and suddenly I had immense compassion for the zoo animals that find themselves gawked at through cages on a daily basis.  Confusion raced through my mind... how did we end up at this place in life?  I gave birth to a beautiful healthy baby boy and now somehow we are in a hospital room surrounded by well intended individuals that appear to have as much concern over my child's well being as I do.  The long week in that small sterile room was beginning to take a toll on me and I was ready to get my family home. 

Just a boy and his pole!

It was pitch black outside and quickly approaching midnight when the headlights finally pulled into my driveway. As I opened the door the man handed me a large bag of supplies and an I.V. pole then he disappeared as quickly as he came.  I stood there in my living room staring at these foreign objects that were left in my care.  I opened the bag and began to fumble through the instruction for putting together this vaguely familiar equipment. It resembled the hospital machines that I spent day after day with... but this was different, now I am the one responsible for these beeps and buzzes.

When I reflect back on all of those faces and the questions that they posed I realize now.... that in all of my educational experience there was nothing that had prepared me for this part of our journey.  I have cared for the needs of four other little ones and thought that I had seen or experienced most everything.... until now.

I have been left to my own devices  for figuring out this new way of feeding my sweet boy.  Prior to leaving the hospital I was given a brief lesson on how to run the feeding pump but that was the extent of my tutorial on the matter.  I am teaching myself as we go and much to my surprise there is more to it than I had imagined.  I'm not sure what I thought it would be like... to be honest I couldn't see that far down the road at the time.

I am grateful for a wonderful on-line community of parents that are walking this very similar journey with us.  It has been through their direction that I have been able to learn how to care for my child and his feeding tube.  When we began this FPIES adventure I frequently saw the enduring term "tubies" used in reference to children with severe feeding issues, but there was a line of separation for me.  Feeding tubes happened to other unfortunate children with FPIES and I rested comfortably knowing that this would never be a reality for our little guy (those things happen to other people).  It was never on my child-rearing radar that I would find myself with the unique challenge of caring for my own little "tubie".  

I am learning something new every day about properly caring for Cohen and his tube.  With the help of some very experienced mothers I was able to learn a new way of taping his tube against his face.  Cohen has been wearing his "no-no's" since he left the hospital, my little opportunist would seize every chance he could to rip that plastic nuisance off his face.  Although, it broke my heart to keep him in those arm guards I knew that it was a necessity, the pain from ripping out his tube would be far greater than the discomfort of the restraints.

   

Last night was the first time in two weeks that my sweet little man was able to enjoy the freedom of sleeping without his "no-no"s"...   his mama finally learned how to properly tape the NG tube so that he can't pull it out.   My on-line research also opened my eyes to the possibility of allowing my little guy the ability to be mobile during his HOUR long feeds.  His new back-pack arrived today in a highly anticipated, much-like-a-Christmas package shipment excitement (seriously there were shouts of fanfare as the truck pulled up and a greeting committee of four little package ushers).  We are all a little excited at the opportunity for freedom that this gives our newly waddling toddler.

Not quite digging the back pack yet!

Apparently someone has been watching his
doctors and has learned a thing or two!

Finally, just as I am beginning to feel like I am getting a handle on all of this... the UPS shipments begin to roll in.  Big Brown has been quite the frequent visitor at our home lately.  Once again I am hit with a whole spectrum of emotions as the huge pile of supplies and equipment create a new realization for me.... turns out that we aren't exempt from this reality after all!

2 Corinthians 4:8-9  We are hard pressed on every side, but not crushed; perplexed, but not in despair; 9 persecuted, but not abandoned; struck down, but not destroyed.                                                                                  

http://www.feedingtubeawareness.org/index.htmlhttp://www.feedingtubeawareness.org/index.html

365 Days Old

I can't believe an entire year has passed since I held that sweet little guy in my arms for the first time.  I think all mothers must go through that same disbelief, wondering how so much time can pass without us realizing it. We get so busy with the day to day stuff that we forget that each of those minutes will pass by us virtually unnoticed.

I have learned so much this past year, things that I wish I wouldn't have had to add to my knowledge base.  I would have thought that after having four children I would have seen and experienced almost everything...and then I meet my little bullfrog!  I am a different person because of this sweet boy and his special needs...I am more compassionate, more understanding of what others are going through, and far more appreciative of the joy within me.  I am learning to embrace what makes him different because it is what makes him so special.  Someone asked me the other day, "how can you still be smiling after all that you are going through?"  My answer is the same for this situation as it is for all hard times that I face.... my strength doesn't not come from this earth therefore nothing from this earth will ever been strong enough to steal my joy!

Psalm 5:11 But let all who take refuge in you be glad; Spread your protection over them,    let them ever sing for joy.    that those who love your name may rejoice in you.

                                           My dear little man,

I feel so blessed to have been chosen to be your mother and  I am so grateful for the little things that your life teaches me daily.  You are such a special boy and  have so much strength for someone so little.  Thank you for the sweet ways that you show your love for me and for the smiles that you still manage to freely give after so much turmoil.  You are an amazingly resilient little man that has blessed this family with your presence.  I can't wait to see all of the extraordinary things that God has planned for your life.

Love you always and forever,

Mama

Things that you are doing~
*Speed crawling everywhere
*Taking many steps (but not yet taking off walking....although you could if you wanted too)
*You have a bashful little head tilt that you do when people talk to you (probably my favorite thing you do)
*Started saying Hi to people
*Wave Good-bye
*Say da-da and sometimes ma-ma
*Love to make clicking noises with your mouth
*Trying to repeat people
*Starting to not mind bath time
*You don't like to eat food but you pretend chew while others eat
*You love getting attention from your siblings
*You are finally able to eat bananas, pears and sweet potatoes (this is a BIG deal)
*You get your special formula through your NG tube (that you pulled out twice...so far)
*You have the most amazing little giggle
*You like to give Mama big slobbery kisses
*You love hearing your voice echo and making earth shaking screaming noises in public

~Cohen Facts~
Born on September 14, 2012 at 2:02 PM
Birth weight was 7 pounds and 3 ounces

You have Beautiful Brown Eyes

Have been diagnosed with Asthma and FPIES

Gained almost 2 pounds in two weeks after starting your NG tube

You have been in the hospital 6 times
You have a rare condition called FPIES and Asthma

Wear 12 month clothes

Size 3-4 shoes
You have 4 teeth on top and 2 1/2 on the bottom

You seem to have super human strength at times

You have the special ability to melt hearts everywhere you go

Happy First Birthday Sweet Little Man!

 John 16:21  When a woman is giving birth, she has sorrow because her hour has come, but when she has delivered the baby, she no longer remembers the anguish, for joy that a human being has been born into the world.