When has your child been on too much medication....

Today while we were working on our Grammar lesson my daughter reminded me that our road of illness has been a long one.

We spend a lot of time trying to keep Asthma at bay in our house.  Unfortunately, that means we frequent our doctors office and have had to administer more medicines than I care to mention.  So it feels good when we get a chance to find humor in our circumstance.

It is always interesting to hear my children's responses to my "school" questions, but their answers today left me in stitches...and painfully aware that my children have had far more than their share of illnesses.

We were reviewing singular and plural articles and when I asked my oldest two to recall what "singular" was.... my oldest butterfly replied, "Hum.... medicine?"

We spent the next few minutes laughing to the point of tears.  If you are familiar with allergies you know that what she was referring to was, Singulair [sin-gu-lair].  This is a medication that she was on at one time but had to go off of it because of side effects.

I can't decide which I should be more concerned about, the fact that my sweet butterfly can't recall what a singular article is or that she has been on so many different medication that she could make this mistake?????

None the less it sure feels good to laugh!!!

Psalms 47:1 Clap your hands, all peoples! Shout to God with loud songs of joy!

Living in a FPIES Fog

When you live in the world of FPIES you live in a fog of uncertainty, it makes no difference whether it is your first child or you’re fifth.  This illness changes all the rules leaving parents only to guess, and second guess every aspect of caring for their children.  Seemingly natural decisions become painstaking for the parent of a child with FPIES.  Because trigger foods can be different for every child it is almost impossible to predict reactions.  Some children react from a single exposure and some after many... some have only one trigger while others have no safe foods at all… some have chronic reactions, some have acute while others have both..... 

We have to sort through the everyday things to figure out what is a reaction and what is a baby simply being a baby.  Sometimes babies cry just because they are tired, sometimes baby spit up for no reason, sometimes babies have odd diapers or get viruses.  But IF those babies have FPIES then all of those symptoms could mean the beginning of painful reactions to the foods they have ingested.  So it is up to us parents to sort through it all and care for these special little ones... desperately trying to minimize as much pain as possible.   We walk a fine line, teetering between over reacting and under reacting to our little ones needs.

When and what we feed our children become crucial decisions that could have costly consequences.  It is as if we are walking through a mine field while wearing a blind fold.  We learn to trust our instincts because that's all we have to give as protection for our little ones.  And sometimes that isn't enough!

So before you judge us please understand something..... it may seem like we are over reacting to a little spit up, frantic over a seemingly harmless crumb on the floor, obsessed with our infants bowel movements or overly concerned about a crying infant.  But what you don't know is that we have spent sleepless nights caring for a child that is hurting so badly that they can't rest, we have watched a crumb turn our little ones insides out, and held a limp and listless little body in our arms...

We desperately try to blindly navigate through the Fog of FPIES the best way we know how, but there are no rules, no guidelines for us to turn to or steer us through this journey.  We count mostly on the encouragement and experiences of others that have walked this path and we seek comfort in our small numbers. 

So many have worked extremely hard this year to help create managed care for FPIES.  Public awareness is crucial!  Recognition will enable us to bring light to this illness, opening up opportunities to develop research so we can begin to lift the fog and give our little ones a brighter tomorrow.

For more information about FPIES go to

http://iaffpe.org/        or             http://fpiesfoundation.org/

Isaiah 26:4 Trust in the LORD forever, for the LORD GOD is an everlasting rock.

The Heart of a Bullfrog

My biggest bullfrog has such a sweet heart and I am so proud of the way that he freely shares it with others.  I have learned so much from his tender ways and I couldn't be prouder of him.

The other day while he was out playing with his friends the boys began to discuss their future careers.
  "I want to be in the Air Force", he said proudly.  "Really aren't you afraid of dying?" they asked him. "No because God is in control!"  One of the boys expressed his confusion, "You mean God controls stuff like that?",  "Well don't you think that if God can handle creating the universe and all that is in it then he can handle my life just fine?" said my little bullfrog.  "Wow, I didn't realize that...pretty cool!",  his friend responded.

We should all be so bold and excited to share with our friends that our God is amazing and quite capable of pretty incredible things.  My biggest bullfrog is a wonderful example to me of how we should't keep God's love to ourselves.  As adults we tend to live in a jaded world, forgetting that we have a job to do...we MUST let other's know that they were created for so much more than what they are experiencing.  This world is not the end, it is only the means to an end... A place to prepare us for our real home.

Loneliness, frustration, anger, and hurt...don't exist where we are going.  They live only on this side of heaven and will remain here long after we are gone.  We can't let ourselves be destroyed by them and we have a responsibility to others to help them break free as well.

So in the words of my wise little bullfrog, "Don't you think if God can handle creating the universe and all that is in it then he can handle (your) life just fine?"

 “It is about the greatness of God, not the significance of man. God made man small and the universe big to say something about himself.”

— John Pipe

Matthew 19:26 But Jesus looked at them and said,  “With man this is impossible, but with God all things are possible.”

How I Meet the Boogie Man: Cohen's Journey With FPIES

As parents we have all done the routine check.... under the bed, in the closet, behind the toy bin... No Boogie Man, we say.  

I have always been able to reassure my little ones that there is no monster lurking in the night.... But that was BEFORE I met the Boogie Man! 

He isn't at all what I would have expected, he isn't 10 feet tall with gnarling teeth and green eyes. In fact he is quite the opposite, invisible and silent and he doesn't fight fair! He doesn't hide in closets or dark spaces, or even in the dead of night.  

We have now entered into a world that two months ago I knew nothing about... and now it consumes my thoughts. Our Boogie Man has a name, it's FPIES~ Food Protein Induced Enterocolitis Syndrome

How do you protect your sweet child from something you can't see? How do you pick up a spoon and put it in your child's mouth, not knowing if it will put him in the hospital? How do you live in fear of crumbs? How do you go anywhere scared that someone will offer your child something without asking you?

Not knowing the answers to these question is not only frustrating but frightening.  

This is Cohen's story...
Our sweet boy has had such a hard beginning. His first 8 months of life have been filled with medications, needles, IV's, x-rays, hospital stays, and doctor appointments. He has an arm list of diagnoses and has had more medications then I care to mention, but he still smiles and laughs at all of those blue gloves that come his way. Our medical team of caregivers consists of a pediatrician, pediatric pulmonologist, and a pediatric gastroenterologist. It is a bit overwhelming to say the least but we are trying to get a grip on our new normal (which for some reason keeps getting redefined for us!)

Cohen spent the winter fighting RSV, Pneumonia and Asthma.  He was in the hospital on oxygen for about 10 days, it is only now that we had finally started to feel like we were winning the battle... And then we meet the Boogie Man!

It was time to start introducing solids, so we did like all parents do, we started with the basics. We decided to begin with oats. We offered several diluted servings and just like most little ones he wasn't so much eating as just learning to eat.  

And then it happened....
I thought I would try to give him some oats before bed to see if he would sleep better. About two hours later he began to vomit, it was one of the most violent vomits that I had ever seen. It only lasted a couple hours and then he seemed to just go limp and fall asleep. I thought he must have caught a nasty virus and prayed that no one else in the house would get it.  That night he seemed to sleep so deeply that it scared me. So I laid beside him all night watching him breath. The next morning he was fine, no sign of illness and we went on with our life. In the back of my mind I began to question the oats, but I would chase the thought away with another, "No one has allergies to oats."  

I decided to avoid food for about a week to let him fully recover. When it was time to eat again I whipped up some oats.  My little one was all smiles that day and obviously feeling well. He finished eating his oats, nursed and then went down for his morning nap. About two hours later my daughter comes in and tells me that Cohen is crying and all wet. I found my sweet boy all covered in vomit and his bed flooded. I picked him up and he continued to empty the entire contents of his stomach until he went limp in my arms (a very familiar sight after the last episode). He continued to gag and choke up green bile, I called his pediatrician because I knew that babies weren't supposed to vomit bile.  I was instructed to immediately take him to the emergency room,  I knew that the biggest concern for them was an obstructed bowel.   

After blood work and x-rays they decided it was necessary to start an IV and give him Zofran. His x-ray revealed an ileus but according to the physician that wouldn't have been unusual for an infant with a virus. I couldn't shake the oats, so I asked if they thought it could have been the culprit but I was told that Cohen didn't present with a rash and it didn't act like a typical allergy. They really felt it was just the nasty bug that they had seen in so many other children that week. 

I wasn't convinced, for one when you have five little ones and only one of them gets a vomit bug (twice in two weeks), well lets just say that doesn't happen!!!  Once again he was perfectly fine the next morning.

At this point my mama instincts had kicked in and I had decided we weren't going to be eating oats anytime soon. So after about two weeks of avoiding everything we moved on to sweet potatoes, but he refused to eat. We tried peas, but he refused to eat. We tried apples and strawberries, but he refused to eat.

Discouraged and frustrated we decided to try the organic apple puffs that we had on hand, thinking maybe he didn't care for the liquid texture. I managed to manipulate a few through his gums and he seemed to not mind them, he actually ate a few.  Two hours later he was playing in his little car and I heard a strange and familiar cough.  Moments later it happened... the same violent vomiting that I had seen twice before. Once again I held him as he and completely emptied his stomach and then began to gag up bile and go limp in my arms. I immediately scanned the ingredient list and confirmed my suspicion, there it was in black ink... OATS!  

This time I turned to the Google search engine, "Why does my child vomit after eating oats?" I found myself on baby center with a list of helpful mothers suggesting Celiac disease but one mother mentioned something I had never heard of....FPIES. I did a quick search on it and found some information but I didn't have time to read through it all, my husband felt that I needed to get Cohen to the ER. On the way there I called a dear friend who is a PA and told her about what was happening, she agreed that we needed to have him seen right away. This time when we got there I told them that I KNEW this was caused by the oats (three times is enough to confirm that) but what I didn't know was WHY?

My friend called me back while we were there, Cohen was already on IV's at this point.  She told me, "I found something you need to ask the doctors about, it sounds exactly like what is happening to Cohen, it's called FPIES!"  I had just read something about that... we both agreed that I needed to share this with our doctors.  No one in the ER had heard of it, after researching it on their own they confirmed that they too felt that this is what our son was experiencing.   When I read what other families went through with acute episodes it was eerie just how well it fit, it was as if someone had been watching us and documenting everything.

We went into see our pediatrician the next day. Knowing just how rare this condition was I brought her journal articles and other information. She had never heard of it either but felt like this was a very strong possibility and she made us an appointment with a Pediatric GI.  We were fortunate (thank God for good friends) we were diagnosed quickly compared to so many others.  Because this is such a rare conditions sometimes families struggle for months and months before finding a physician that properly diagnosis their little ones.

Unfortunately, there isn't a test for FPIES and it doesn't appear on scratch or blood tests because it is not an IgE allergy like peanuts or eggs. It is only after ruling out other possibilities that a child receives a definitive diagnosis. This allergic reaction takes place in my sons small intestines, which is why it takes so long to react after eating the offending food. For that reason there isn't a good way to learn what he is allergic to so we must conduct food challenges. It is frighting to think that everything that goes into my child's mouth may put his life at risk.  Children have to eat, so we have no choice but to experiment with foods, praying that we don't need to hospitalize him two hours later.

This is only the beginning of our journey, as of right now Cohen doesn't have any known safe foods. We are starting food challenges but it takes at least ten days of exposure and no reaction before we can deem a food safe.   I am hopeful that we will find food that will nourish my little bullfrog and that we will learn how to navigate through our "New Normal". Until then we will continue to hold off the Boogie Man as best we can knowing that every battle with him will bring us knowledge and little closer to winning the war. 

Philippians 4:13

I can do all things through Christ[a] who strengthens me.

For more information on FPIES please visit The FPIES Foundation or IAFFPE

Dear Future Me

I have so much I want to say to you I don't even know where to begin.  I have desperately wanted to meet you, but it seems that I can't catch up to you.  I know so much about you even though we have not crossed paths yet.  I often think about what I would say or ask you if I were ever given a chance...

How do you manage to meet every adversity in your life with such grace and poise?  You never worry about life, always dealing with problems in such a way that seems seamless.  Your children are so well behaved and full of joy, a tribute to all of the ways that you have perfectly taught, mentored, and reared them throughout the years.  You discipline them with great calmness without mistakes or regrets, always knowing the perfect way to discern every problematic situation.  Your children are never without manners and always obedient to you and God's word.  Each child is so well behaved and filled with kindness at all times, never fighting or arguing with each other.   

 How do you manage to keep such an immaculately clean home while homeschooling your children?  Everything is always in its place and so well organized.  And yet some how you still have to time to create amazing and engaging lessons that always excite your children.  I will never understand how you are able to not only keep up with all of that laundry but have time to remove every stain as well.  And please tell me the secret to keeping your little ones closets, drawers, and rooms so neatly organized.  Probably one of your most impressive abilities is how you manage to get everywhere on time with your children dressed to perfection.

And you always look so put together, never tired or run down and wearing the perfect outfit.  With all that you do, you never miss a workout and stay in fantastic shape.  Each and every day you prepare perfectly delicious healthy organic meals that are enjoyed by your ENTIRE family without complaint.

 You also amaze me with your ability to know just what to say to a friend in need, and you are always available if ever someone should need your help.  It must be because of your diligent and uninterrupted devotion time that you spend with the Lord; nothing ever stands in the way of your Bible studies.  The Lord must be so proud of you and your NEVER wavering faithfulness.

One of your most impressive feats is your ability to keep all of your children so healthy.  You rarely if ever have to take them to the doctor, therefore you aren't in need of enlisting the help of your friends to watch your little ones. Oh, how I wish I knew your secret!!

The truth is I am not sure we will ever actually meet, but if we should please go easy on me.  Try not to judge the mistakes that I have made because although I fall short of my expectations, I give each day the very best of me.  You and I are so different... I long to be you but reality tells me that the chances of us ever catching up to each other are very slim.  At times I think we may be close, but then life takes a turn, and once again you seem light years away.  Please know that I think of you often with such great fondness, you are living the life that I dream too.  But for now, I will be content with being "imperfect me," living in my "imperfect life," learning the lessons that each day has to offer.  Hopefully, each lesson will bring me closer to meeting you, and one day, I may sit upon the pedestal that I have placed you upon with such reverence.

But if not... then I will anxiously await the day when we have our long over due introduction on the other side of heaven.

Until then all my love,
Me

Romans 12:2  "Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will."

A Day In The Life...

So I decided it might be fun to record the events of an entire day in our wonderful little life.  I mostly decided to do this because I want to be able to look back one day and remember our perfect little chaos, as I sit in my quite home longing for the sound of little voices.

Here is your "this may be really boring to everyone else" warning label!

May 16, 2013

5:00 AM  ~ Wake to make a special birthday surprise for Todd, Monkey Bread......yum! (He leaves for work at 5:30)

5:15 AM ~ Todd tells me something is cooking..... I informed him it was his birthday breakfast and assume that he ate it before leaving for work.

7:30 AM ~ Feed little bullfrog...again (we are at every two hours again since he can't have solids).

8:00 AM ~ Get the rest of the gang going and eating.  That's when I realized that the birthday boy never ate his special breakfast that I made just for him...... at 5:00 in the morning.

8:10 AM ~ Text birthday boy to question him about not eating his special breakfast.....that I made for him at 5:00 in the morning.  He said that he didn't know that I was finished with it.  Huh............ so much for the special breakfast....the kids and I enjoyed it!

8:30 ~ Pass out all medicines to four of the five children (Reese is the only one not on anything at the moment).

9:00 AM ~ Have the older kids start some of their school work because we have to leave early today for an appointment.

9:30 AM ~ Begin getting ALL of the kids and myself ready for the dentist appointment, this includes dressing everyone, brush all butterflies hair and both bullfrogs as well, inspect all teeth, find shoes, and nurse littlest bullfrog (this is usually where we do our morning devotions, but I failed at this task this morning.)

10:25 AM ~ Leave for the dentist office

10:45 AM ~ Realized while sitting in the dentist office that the two little butterflies are suppose to have their yearly eye exam tomorrow.  Without hesitation I call to cancel the appointment because we are thankfully still outside of the 24 hr cancellation window.  I just can't seem to muster the strength for another appointment...we have had one everyday this week and another one tomorrow!

12:00 PM ~ We leave the dentist's office with out a single cavity, once again!!  Wooo Hooo!
We head on over to Wal-Mart to get some food for daddy's birthday dinner and to look for protective eye gear so that my big bullfrog will be able to play in his soccer game later today.

12:30 PM ~ Still walking through the store with one five year old screaming she is starving.  We decided to buy daddy a new "cheep" wedding ring since he has lost the last two.

1:30 PM ~ Finally we make it home with five very hungry children. We all work together to get groceries unloaded, lunches made and baby fed (well that last one was all mine).

1:45 PM ~ Another round of medicine for T.C.'s eye.

2:00 PM ~ Little ones are down for naps and I start to clean up lunch (with the help of my big kids) and get ready to make daddy's special ice-cream cookie sandwiches.

2:20 PM ~ Littlest bullfrog decides he doesn't want an afternoon nap today, so big bullfrog tries to entertain him while my biggest butterfly and I make cookies.

3:30 PM ~ Start to make daddy's special dinner... clams in red sauce over linguine and bruschetta.

4:40 PM ~ Start the search for soccer gear for my three little players.....shin guards, soccer socks, soccer shorts and t-shirts.....and of course soccer cleats (which are never where they left them).

5:00 PM ~ We head out the door once again.

5:30 PM ~  Time for game number 1, my middle butterfly scored three goals, yeah!!

6:30 PM ~ My two oldest are excited and on the field for their highly anticipated game.....when lightening strikes in the distance.  Sadly, their game was cancelled.

7:00 PM ~ We head back home to get things ready for the birthday boy (who still hasn't left work yet.....ugh)

7:20 PM ~ Home again....( we all run as fast as we can to keep from getting soaked in the torrential downpour) Then time to feed little bullfrog again (and boy was he starving by this point and not afraid to let us know it, looks like he is starting to back off of his every two hour feeds...thank you sweet little man).

7:35 PM ~ Back in the kitchen to get dinner ready and help the butterflies make a happy birthday daddy pennant to hang up for the big party.

8:15 PM ~ The man of the hour finally arrives and the kids hide and turn out the lights to surprise him (it never occurred to them that there were actually suppose to be people in the house and therefore the lack of lights was a dead give-a-way to their plan).

8:30 PM ~ After jumping and yelling surprise and scaring daddy (wink...wink), we all sat down to eat a "better late than never" dinner.

9:00 PM ~ Bring out the gifts and present him with his giant ice-cream cookie sandwich and then we proceeded to, against all better judgment, allow the little ones to have half of an ice-cream cookie sandwich.

9:10 PM ~ Daddy hugs the middle butterfly and realize that she is wet around the bottom area.... upon questioning, that started out with, "Daddy will you be mad at me if I tell you this?", and followed with a confession of peeing in the corner while waiting to yell surprise to daddy.  Hum.....sure glad daddy discovered the wet pants!

9:11 PM ~ I promptly get up and go to the site of the crime and clean up the mess.....really??  In her defenses she just didn't want to miss out on yelling surprise (wish I would have know that little pause in the fun would have been well worth it

  

9:15 PM ~ Daddy reads our devotion while the kids eat their birthday yummies.

9:30 PM ~ Last rounds of medications for the day, teeth brushed, and off to bed!  I begin the dinner clean up and straighten the living room as well.  Time to start a load of laundry in attempt to diminish the growing mountain.

10:00 PM ~ The littlest bullfrog is fed and drifting off to sweet dream land.

10:15 PM ~ The whole house is deafeningly quiet.

10:30 PM ~ I sit down at my computer to write this blog and contemplate the punishment that I will receive in the morning for allowing my little ones to have such a late night.  I am also painfully aware that we have another appointment at 9:30 AM and I don't have anyone to watch my butterflies, nor have I even begun to prepare their clothes for the outing.  Looks like my day isn't over just yet!

And believe it or not I really wouldn't trade it for the world....

11:00 PM ~ Looks like it's time to get back to work....lol!

Philippians 4:13

¹³ I can do all things through him who strengthens me.

My Mistreated Treated Friend

I have a friend I have treated badly so many times
 yet they love me still
I have ignored and neglected so many times
yet they love me still
I have filled my mind with doubts about them
yet they love me still
I mistreat them from time to time
yet they love me still
I go too long without speaking to them
yet they love me still
I have left them out of my life too many times
yet they love me still

I can't wrap my mind around why I get so many chances to to get it right and yet I fail so often.  My heart's desire is to be better... to do better....to be a better friend to the one that loves me the most.

1 John 4:9-11 In this the love of God was made manifest among us, that God sent his only Son into the world, so that we might live through him. In this is love, not that we have loved God but that he loved us and sent his Son to be the propitiation for our sins. Beloved, if God so loved us, we also ought to love one another