Reese-Pie...Reese-Pie, Oh my Reese-Pie

Happy 4th Birthday to my spunky little funny bug. We are so blessed to have you in this crazy little gang or ours. You are such an amazing little life and you bring happiness to each and everyday.

 I love that you can act like a teenager one minute and then a toddler the next.

I love that you never shy away from giving your opinion, or demonstrating your uncharacteristic strength for someone so small.

I love that no matter what you find when you look out the window each day you say, "Mama, it's such a beautiful day." 

I love that you remind me that life is short and childhood is even shorter.

I love that you think it is hilarious to hide for minutes behind walls just to jump out and scare us.

I love that you climb in bed with me really early every morning just to snuggle.

 I love that you still put your shoes on the wrong feet just because you, "like it better that way."

  I love that you won't go to sleep at night until I give you your hugamugas (nose kisses... see Daniel Tiger for more details).

I love that you really do want to be a princess when you grow up, except for the day you thought perhaps you would like to be a dentist.

I love that you do the Reese-Pie Dance, when we sing, "Reese-Pie, Reese-Pie....Oh, my Reese-Pie."

I love the way you sing all day long, reminding me that nothing should keep us 

from making a joyful noise. 

 Oh, Reesie-Pie how we love you soooo!

Happy Birthday Sweet Little Girl!

Psalm 100:1-2

Make a joyful noise unto the Lord, all ye lands.  Serve the Lord with gladness: come before his presence with singing.

Deep Breaths

Allergy testing

Four of us sat for over an hour in a small 8 x 6 room waiting anxiously to hear again from doctors. This seems to be a frequent scene for our family lately and unfortunately, I have come to expect little results from these gatherings. I was particularly nervous about this appointment because of the testing that had taken place earlier that day. 

For those that don't know, my girls have been suffering chronically with lung issues and where diagnosed with severe Asthma at the age of 3... and apparently their youngest sister has decided to follow suit (let's save her story for another day).

The morning of our appointment my two oldest girls underwent Methacholine Challenges; it's when a chemical is administered in increasing concentrations with the intention of inducing symptoms in those with respiratory issues. I was present while these test were being administered, going between two rooms in an effort to try to comfort each girl. I would watch as this long drawn out process progressed on for both girls. If at any point they exhibit respiratory distress the test would be stopped

and they would administer abuterol to reverse the reaction, which would confirm the diagnosis of Asthma.

Now, keep in mind I have been treating my girls for severe Asthma for about 9 years so at this point I was secretly thinking to myself... these tests better be positive.  We have lived through so many scary breathing episodes with both girls and each winter usually brings with it very sick children. We were desperate for answers and the reassurance that our kids were not going to have to continue living this way. Kayla  alone has endured 7 episodes of pneumonia and countless doses of oral steroids.

It is such a helpless feeling to watch as your children continue to become ill with no one able to identify the real cause.

As I watched and waited, I could see that Kayla was not going into respiratory distress, and while normally that would be a great thing, it was not very comforting for me at that moment. I kept telling the respiratory therapist, "I don't understand, you should see this kid and how sick she gets with breathing issues." My concern started escalating into frustration... I had been treating her for Asthma for 9 years, giving her medication to relieve symptoms, her doctors heard wheezing on many occasions... how could this be!!

Our, "We Can't Eat After Midnight" late night party at the RMH!

The room across the hall was producing much different results. It wasn't long into the test when Addyson began to have difficulty breathing and the test had to be stopped... a diagnosis of Asthma was confirmed! But her older sister continued to plug a long through the test and it wasn't until the final dose that she had a mild enough drop in her lung function that she needed reversing treatment. However, it was still not enough for a positive test result.

Now, as I sat in that small room waiting

My Brave Girls!

to hear from the pulmonoligist my anxiety began to rise. I was preparing myself to hear the words, "she doesn't have Asthma, we don't know why she gets so sick... sorry good luck to you all." I couldn't let my little girl go through another horrific winter without answers and I began to give myself a pep talk, urging myself to stand firm and let the doctor know my frustration.

When she finally came into our room I could feel my pulse pounding, I was ready to be as vocal as need be. Our doctor grabbed her papers wheeled her chair over in front of me and said, "Let's start with Kayla." I took a deep breath and readied myself to hear what she had to say. She went through the test in detail before telling me what I had suspected to hear, "The test was not positive, indicating she doesn't have Asthma." Before I could let my building frustration speak she continued, "But what the test does indicate is that she has something called Bronchomalacia."

I couldn't believe my ears... She wasn't leaving us without a diagnosis, she was giving us the correct one. She went on to say, "That asthma treatments actually make bronchomalacia worse by weakening the already floppy airways. She also explained that Kayla's lungs can't clear mucus very well, which is why she has had pneumonia so many times."

                                   

I tried to hide my tears as I realized that we had not only spent the past nine years NOT making my sweet child better, but we had in fact been "making" her sicker with her Asthma medications. 

"So you are taking away her Asthma diagnosis that she has had since she was 3?" I said as flashes of the past nine years zoomed through my head. Her voice softened as the words, "Yes, I am," hung in the air... before echoing painfully in my heart.

The guilt began to overwhelm me and I could no longer hide the tears that had been forming in my eyes. She and Todd, both almost simultaneously said, "It's not your fault," but their words were not enough to comfort me. How could this be and why had it taken so long to figure out?  

The doctor then put her hand on my knee and very sympathetically said, "The bad news is that this will never go away, it is something she was born with, and she will always have it. If this was Asthma I could offer you all sorts of support but there is not very much we can do for bronchomalacia."

At least now we're receiving long awaited answers and someone was finally connecting the dots on almost all of Kayla's issues. However, the sting of the past was still rattling through my mind as I did my best to refocus my thoughts on the positives.  

What about Addyson...

Well, she kept with true Bramlee fashion... we like to go BIG or go home!  Our middle child must have felt the need to one up (or should I say two up) her older sister. Addyson very clearly has Asthma (evident from the methacholine challenge) but she also has bronchomalacia and the beginning of tracheomalacia (floppiness in the trachea). 

Remember above when I said that, "Asthma treatments makes bronchomalacia worse." Well, I am sure you see our dilemma.  Our pulmonologist said, "There is no easy answer or a good plan for Addyson, if she is wheezing give her abuterol and if it doesn't work and makes her worse then give her steroids immediately." That's right... our best plan is in fact just a roll of the dice, with the very real potential to make her worse not better.

Here Is Our Plan:

~keep the kids as well as possible because any illness reeks havoc on their lungs

~administer higher doses of inhaled steroids at the first sign of a sniffle

~if inhaled steroids do not stop symptoms within 48 hours they must take oral steroids immediately

~therapy to learn to cough differently in an attempt to try to keep their airways from collapsing with each cough

It is such an uneasy feeling when an expert doctor, from a major children's hospital, looks at you and says with a sincere expression, "I just hope this treatment works." 

At least NOW we know WHAT we are battling against, making the fight much more fair!  

So for now I am working on forgiving myself for my unknowing role of contributing to making my girls sicker for years.  Oh, the logical side of me realizes that it wasn't my fault, but for some reason I just can't seem to convince the ache in my 'mama heart'.

We will not let this defeat us!  We now know what we are fighting and that gives us power.

Sweet little girls your daddy and I promise that we will never stop fighting to keep you well and we will always give you our very best.

1 Peter 1:6-9

 In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed. Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, for you are receiving the end result of your faith, the salvation of your souls.

Flight Night

After four days in our local hospital my hopes of remaining close to home faded quickly.  As I found myself face to face with two gentleman dressed head to toe in flight gear and standing in our hospital doorway, my mind began to replay the events of the day.  I was desperately trying to remember how we came to be at this point.

First, let me say I have come to love our "small town" hospital and pediatrician's office, they've earned the right to be called our front line defense for Cohen.  They know us and they know what to do when he is having a reaction.  We have developed a relationship with these wonderful people and they are part of our "Team".

So for us to be able to stay close to home for this battle was a blessing for me to say the least.  But with the passing of each day I was warned of the impending transfer to our "Big" hospital.  After a few days I thought we had possibly dodged the proverbial bullet but then it happened...

Cohen wasn't getting better and one of our very trusted "team doctors" made the decision that it was time to get him to Cincinnati.  I felt like someone had kicked me in the stomach... our other kids were here at home, Todd was here, friends and family that could help us.... they were all here.  But everyone agreed that this was the best plan for Cohen.

As his doctor began to make the arrangements for the transfer he periodically come in to update me on what was happening.  At one point I was told that they were trying to determine whether Cohen would be going by helicopter or plane.  I was informed that if he went by helicopter I would not be allowed to fly with him.

The idea that I would be at best a 6 hour drive behind him was frightening for several reasons. Besides the obvious of having a sick child whisked away from you, there was much concern about Cohen's severe allergies. On several occasions at our "Big" hospital  I intervened, preventing several mistakes that would have made him extremely ill.  Who would advocate for him if he was flown there alone?

I did they only thing I knew to do... I got on my knees and began to pray... I asked my friends and family to pray... and I sent out a Facebook call to prayer.  I was desperate and scared for my little guy.

I spent the passing time holding and comforting my sweet baby boy and praying.

The news finally came, they would take him by plane and I WOULD be able to go with him (Praise The Lord), however I would only be able to bring a very small bag with me.... seriously, I would go with only my toothbrush in my pocket if it meant being able to stay with him!!!

Now, in my doorway stood our transfer team who quickly introduced themselves and informed me; "That my child was now under the care of Cincinnati Children's Hospital and that they would do everything they could to keep him safe and comfortable during the transfer process."  My head was still spinning from the events taking place and I could tell from the look in Cohen's little eyes he was feeling the same.  

I placed him on their gurney (which must have cost more than most people's vehicles) where he was surrounded by computerized equipment and emergency gear.  He looked so small lying there.

We began to make our way down the hall and I could hear the whispers of onlookers making their speculations as to what was happening to my little guy.  His sweet nurse (now friend and "Team Member") came out to hug me and give me her love, leaving these people that I have come to trust so dearly was hard and added to the emotions building inside of me.  

On the ride to the airport I sat quit and unable to speak (something very uncommon for me).  I have watched movies where the scene shifts to slow motion and the events of the moment seem to drag on... and now I found myself living in one of those moments.  Todd tried to arrange to meet us at the airport but we were already to far in our route for him to get there in time.  I am certain that seeing him would have probably released all of the emotions I was so desperately trying to hold back.

It was pitch black when our ambulance pulled onto the runway where "our" plane was waiting for us. I had been here many times but I had never seen it look this desolate and lonely. I quickly became aware of the fact that the only people at this airport where here for the sole purpose of taking care of my son.  I quickly dismissed the thought for fear of becoming overwhelmed with emotions.

Two pilots and another transfer member were standing by the nose of the plane waiting to introduce themselves to me. Their kind attempts at trying to make the mood a little lighter was lost on my foggy mind.  I watched as this giant gurney was attached to a mechanical arm that lifted it and it's precious cargo onto the plane.  

I was then ushered inside and given a seat close to Cohen's head where he could see me.  My strong little boy had never uttered a peep this whole time and now searched my eyes for reassurance.   I held his little hand as we began to taxi down the runway.

When we started to ascend Cohen suddenly began to scream and tears of pain rolled down his little cheeks.  The flight nurse quickly came to his side and attended to him, I would learn later that the changing of altitude was creating even more pressure in his already gas filled belly.  The nurse was able to vent his G-tube and reduce some of his discomfort.   He finally settled and fell asleep.

I had never been on a plane this small. I am not a big fan of flying to begin with...  and on this little gem I was able to look out of the cockpit window, a view that I was not entirely comfortable with apparently!  

The trip took us about 45 minutes.  During the flight I had a chance to finally catch my breath and attempt to take in everything that was happening.  I kept looking at my sweet little guy thinking about all that he had been through.  This isn't  a situation that you every think you will be in with your children.  And now here I was thousands of feet in the air with complete strangers that I was completely depending on and trusting with the life of my child.

I watched as we passed over hundreds and hundreds of lights, each representing people that were going about their daily lives.  I tried to think about the everyday things that I would have been doing and certainly taking for granted if I were home.  I wondered how many times people in similar situations had flown over my house and seen our "going about life light" glimmering below them.  It was thought provoking enough for me to make a commitment to start praying for the planes and helicopters that pass over me each day.

When we finally arrived there was an ambulance and more transfer team members waiting to escort us to the hospital.  This proved to be another long silent ride with me still to emotional to speak, for fear I would start crying and not be able to stop.

The night was long, Cohen's IV blew while we were in flight and a new one had to be placed. The hospital has a team that is designated to specifically put in IV's for kids's like Cohen (he has a lot of scar tissue from all of his IV's and is very hard to stick).  Even with this special team he had to be stuck more than once to finally get his new IV started.  

Todd and the girls arrived the next day... and my heart never felt so full!!  I couldn't hug them enough. Cohen slept most days still, which allowed for me to spend some much needed time with the girls.  My wonderful husband knew just how hard the events of the passing days had been on me and was trying to provide me with as much reprieve as possible.

I was doing well and had been holding it together and then it came time for Todd and the girls to go back home.  Now, I am not a real big crier, I mean I do... just not very often or over little things.

And then it happened...

I was trying to check them out of the Ronald McDonald House when one of the SIX sweet ladies behind the counter said some very well intended words... "I hope you have a safe trip home."   Now, up until this point I had not shed a single tear, maybe I was just to exhausted or perhaps I hadn't let myself fully take it all in, however for some reason this was the straw....

These poor unsuspecting ladies were suddenly staring at a blubbering lady that was trying to get out the words, "I don't get to go with them." Between my uncontrollable sobs and feelings of humiliation (I hate crying in front of people much less strangers) I was a mess and I was trying to hide it from my girls.  Fortunately, they were off getting a snack for the road and missed the whole scene.

These wonderful ladies did their best to comfort me and went out of their way to do all they could for us.  I am so grateful for the kindness of the people that work at the RMH.

It has taken me awhile to be able to write about the events surrounding our flight.  It was a difficult time for our family and it wasn't something I wanted to revisit in my mind.  Now, that I am sitting here in the comfort of my home and have been able to keep our little superhero out of the hospital for awhile, I can fully appreciate the experience and what it has taught me.

For now I am taking each day one at a time, appreciating every opportunity to be together as a family. And reminding myself that; there is joy to be found in each day and although some days you may have to look a little harder than others.... never give up, it's there!

Pure Genius

Okay, just so you know I am in no way regarded as a genius... I know that may come as a shock.  

But let's be honest the true measure of intelligence is really whether the knowledge you have matches the need before you.  You can have a million degrees in medicine or aerodynamics but if your power goes out it's the electrician that becomes the most intelligent person in the room.  And if your car engine dies it's the mechanic in the scientific researcher's parking lot that is the genius.

My point is this, odds are that at sometime in our lives our area of expertise will match up with the immediate need in front of us... and in that moment we will have our opportunity to shine.  

So let me just say that what I am about to tell you is... Pure Genius!!  I know, it may seem a bit extreme to give my words such high regards but I think you will agree that my moment to shine proved to be a success.

My Shining Moment

Well, let me just say that five kids can create messes like you can't even imagine and this mama could go insane trying to keep up with the ongoing clutter.  So I came up with a scheme that was.... yep, PURE GENIUS!

Everyone in our home has chores and jurisdictions that must be attended to daily (yes, I am a Duggar fan). However, there are some days when those efforts just aren't enough. These were the days when I found myself turning into the relentless nagging mama that continuously chanted, "pick up this, pick up that!"  Not only was it annoying to them but it was also extremely exhausting for me.

The Game

Okay so here it is, the genius part... I created "Pick-Up Points".  I know it doesn't sound like much yet but hang on, let me explain. 

On random days (the ones where I want to pull my hair out from the piles of clutter) I declare, Pick-Up Point Time and all of the kids come running.  Seriously, they literally come running.  I then proceed to set a timer (the length of time depends on the depth of the mess) each child begins to run in every direction picking up anything and everything they can find and putting it all away.  I even hear them sometimes argue over who gets to pick up what.  

Genius..... right!  Now, I would love for you to believe that my kids are just so wonderful that they would clean up that easily with no outside reward however, I have my integrity to think of so I will be honest.

The Motivation

Points are given for each item they pick up AND put away, I stay close by to monitor this process.  There are also times when the game is not being played that I will offer a set number of points in exchange for them helping outside their jurisdiction or just for volunteering to do something without expecting a reward.  The kids collect the points which, can be used to purchase items at the store.  They can choose to use the points right away or let them add up so they can buy larger items.  

Participation in the game is voluntary and the kids still have their regular chores which, are set aside just to teach responsibility.  However, it only takes one shopping trip to motivate the non-shoppers for the next game.  Our current Pick-Up point exchange rate is 1 point = 1 penny (there young and it works).   Keeping the point value low motivates them to pick up more items (that's where the scheme definition comes from). There is also the added benefit of their competitive nature, I guess I get the blame for that genetic hand-me-down.

Regardless of why it works... it works!  In a matter of minutes my house goes from chaos and clutter to neat and orderly.  And this mama sits back and smiles... much nicer than the previous nagging mama... so it's a win-win for all.

This little game has revolutionized my life and given me back some of my lost sanity, well I like to believe that at least.  I don't know how long this will continue to work so for now I will just marvel in its wonder and enjoy the moment when for a fleeting instance I was a Genius!

1 Peter 4:10 Each of you should use whatever gift you have received to serve others, as faithful stewards of God's grace in its various forms.

Feeding Cohen: How To Setup a Kangaroo Joey Feeding Pump

Our littlest bullfrog doesn't do things conventionally... so why should eating be any different.  For the past nine months he has required enteral feedings to survive.  He had a NG tube placed last September but was later switched to a gastronomy tube (G-tube) because he can't eat food and refuses to take in his formula orally.  Our little guy is on continuous feeds for 22 hours a day, which requires us to refill his formula every four hours around the clock.  

The idea that your child needs external resources to thrive is difficult to digest and can be very stressful at first.  We were just kind of thrust into this new life and given very little instruction on how to navigate through it.  Although, I was given a brief lesson on how to run our pump during our discharge, my sleep deprived overwhelmed mind was less than focused. So when an IV pole (which required setup) and a bag full of supplies finally arrived at my door at 11:00 at night I was feeling slightly defeated to say the least!    

I have created a video, which explains the basic steps of setting up an enteral feed.  I hope this information will become a resource for others that are trying to feel their way through this process.  

Just remember you are not alone and things will get easier as you become acclimated to this new way of feeding your little one. 

1 Peter 5:7 Casting all your anxieties on him, because he cares for you.

Life With An NG Tube

I wonder what I would say to her....

I wonder what I would say to the woman I was a year ago... that exhausted woman that sat at the bedside of a sleeping, sick little boy covered in bruises from unsuccessful attempts to hydrate him. Discouraged, feeling helpless and unsure of what was happening to her perfect baby, wondering why she couldn't make him better, why she couldn't feed him, and unaware of just how sick he was.

Where would I even begin when trying to explain the course of the year that awaited her or the fight she had coming.  She was so naive to the coming events of countless doctor appointments and hospital stays that spanned across four states.  She had no idea that her precious baby would endure 50 IV sticks, 3 surgeries, countless (literally) countless blood draws & x-rays, as well as 11 hospital stays in four different hospitals before he would turn 19 months old.

The woman in that hospital room that night had no idea that she was about to be thrust into overcoming her insecurities... to be the one that would find her sons disease and then confidently present it to his unfamiliar healthcare providers.

She had no idea that soon she would learn how to run equipment that she had never even heard of up until this point in her life.

She had no idea how many times she was about to watch her child look at her through fear filled eyes, desperately urging her to rescue him from the tubes, needles, and procedures that he had to undergo.

She had no idea that her secret urge from years ago of wanting to be a nurse was about to become a reality in a way that she had never envisioned.  Or that she would be taking on that role for one of her greatest joys.


So what would I tell her...

I would start with... Your faith is about be tested so hold tight to what you know. Trust in the one you have given your life to.... the same one that you dedicated your son too.  You are about to experience some the most difficult days of your life but you will weather the storms, not because you have obtained super strength but because you trust in one that does.  You are about to experience love in the truest form from your family and friends and to see why God placed these people in your life.  You are about to understand the real reason God created an earthly church and filled with people that lift each other up when their strength is depleted.  Take heart because although you are about to face many struggles, you will also experience great blessings, so embrace them when the come and use them to propel you through the difficult times.

      ~~~~~~~~~~~~~~~~~~~~~~
I believe that if that same woman could have peered into the future she would have had a few words for the me that I have become.  I think she would tell me that she is proud of me. Proud of how I stood up for my sweet baby. Proud of how I listened to my instincts when everything around me suggested otherwise.  Proud of how I learned to overcome my insecurities and speak up when Cohen desperately needed me too.

You won't hear me say this very often... but I am proud of me as well.  I'm  a constant work in progress and I'll be the first to admit that I am far from perfect but for just one moment I am going to hold my head high in accomplishment... and be thankful for my successes thus far.

The truth is we all share one commonality... one absolute for all of us....   At one point or another we are all guaranteed to experience pain.  And although it may not look the same for each of us and will certainly affect us each differently, you can rest assure we will all be changed... either for the better... or the worse.  So I will make a choice... I will allow my pain to have purpose.... choosing to bring meaning to the struggles that I have hurdled.... allowing what was intended for evil to be used for good.

My hope is that you will allow  our pain to receive its purpose through the way it impacts your hearts.  Our family does not live in sorrow or sadness but we celebrate everyday as a new beginning filled with hope and promises from our God.  We will continue to face the trials of this life, not as loners lost in confusion but as children sheltered in the arms of loving Father.


I pray that the strength that resides in our little superhero will permeate into the lives of all who hear his story, allowing our Pain to be transformed into Purpose.














Isaiah 40:28-29  "Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak"

Living In A FPIES Fog

FPIES-Our beginging

Our Little Puzzle