I will not complain...

Last week my big problem was that my washer decided that enough was enough and went on permanent strike. I was just thankful that it's financial timing was perfect, however I can't say as much for it being considerate of the pending snow storm.

After selecting the beast that would tackle the massive aftermath the old one left behind, we waited for it's highly anticipated arrival.  And then the snow came and the washer didn't...

And so I complained... a little... or perhaps a lot.

Twice my washer was brought within 400 yards of my home... and twice it was taken away because they couldn't get through the blizzard remnants to get it into the house.

But now I will no longer complain because 3 days ago life reminded me what a real problem was, knocking my washer and weather problem significantly down in the rankings. Cohen started getting sicker and we were having to consider the possibility of heading to Cincinnati.

Washer and storm problem status reduced too... just a terrible inconvenience!

I will not complain because... 48 hours ago, it was a done deal... we were told that it would probably be best to get him to Cincinnati and so we started making the arrangements for our travel.

That's when I petitioned my friends for prayers! 

Then 24 hours ago... I found myself involved in a furry of phone calls and blood tests in an attempt to figure out the best treatment plan for our superhero.  Our doctors in Cincinnati were corresponding with each other trying to figure out a plan, unfortunately, we are on uncharted waters with Cohen. Every illness is complicated by his FPIES, which requires us to carefully weigh treatments so they don't do more damage than the illness.

My little boy is so very strong and even through the pain of repeated blood work he would smile with tears streaming down his little face and then thank everyone when it was over. 

Then last night we saw the result of countless prayers....

I was still trying to get home from the doctors office when our amazing pulmonologist in Cincinnati called and I heard her speak the most beautiful words.... "Let's treat him at home for now and just keep a close eye on him!"  One of the advantages to having a doctor in the home and I am sure a major factor that played into her final decision. She gave me her number and instructed me to notify her in the event that he declines in the slightest. He is doing well enough now that we all feel comfortable with this plan.

Waiting to be taken to it's final resting place.

I could have done a happy dance.... however I was still sitting in my car!

What washer and storm problem??

I will not complain because nothing else matters right now... 

Cohen and I were suppose to be 6 hours away from the rest of our family, in a hospital with my little superhero... but were not.... were home. And although he isn't out of the woods just yet I have confidence he will be better soon and we will be giving God all the Glory.

I know that your prayers are responsible for this battle's victory and I can't thank you enough. Please keep praying us through the rest of the war, your faithfulness is making a difference in the life of one little superhero.

Did I mention we get to stay HOME? 

It's safe to say I'm extremely happy to have my entire family under one very snowy roof... I will never take that gift for granted!

Pole Break: In Honor of Feeding Tube Awareness Week

Do you remember that childhood game of tag where someone yells "Jail Break" and everyone runs in every direction as fast as they can?

Well, we play a very similar game every single day, only it's called "Pole Break!"  We love this time of day, it's when our favorite little "Tubie" gets his window (for my non-tube friends: that's the term used for getting a break from your tube feeds). 

Imagine being two years old and attached to an IV pole for 21 hours a day! 

Our little guy is now fed through a GJ-Tube, which means one tube feeds formula directly into his intestines while another tube lets the pressure vent from his belly. If his vent bag is at a lower level his vent bag will fill up with fluids depleting him of much needed daily fluids.

You can feel the excitement build and watch his little eyes light up when we say, 

"Cohen, do you want me to unplug you?" 

He usually replies with a squeal of joy. Then we stand back... when those connections come off he runs like the wind. It's wonderful to see him so happy.

Unfortunately, he has learned to sense when our game is coming to end and has started hiding in a desperate attempt to avoid getting "plugged back in" to the dreaded pole. It is the hardest part of my day... knowing that he wants freedom that I can't give him.

Someday little man... I promise! 
I know in my heart this is not forever! One of these days we will have a huge celebration. I have decided that we will mark the occasion by having a 

DESTROY THE POLE PARTY

In order to be invited to the grand event you must come up with a creative way to destroy this pesky pole!

Don't get me wrong I have the utmost appreciation for the job it is doing to keep my child alive, however I eagerly await the day when I can witness it's demise, a sediment that I am sure I share with our Tubie Buddies' mothers.

How can I love something so much that I desperately hate? Because it's my son's life source and for that reason alone I will forever be indebted to it. And as much as I love what it has given us... I will love seeing it go away even more.

But for now we will keep playing our game and enjoy the gift of our "window". 

For more information on feeding tubes visit our friends at Feeding Tube Awareness 

If your new to the feeding tube world and use a kangaroo joey pump you can watch our how to video here...

Happy Feeding Tube Awareness Week Tubie Friends.

Together we are teaching the world the true beauty of 

feeding tubes!

Kayla's Ronald McDonald House Fundraiser

Kayla is at it again! She has started a fundraiser to help raise money for the Ronald McDonald House by selling awareness T-Shirts for Cohen's condition, FPIES. All proceeds will go to the Ronald McDonald House.

We would appreciate your t-shirt purchase in support of her efforts, she is truly an amazing child and I feel so blessed to be her mother.

Sweatshirts, Unisex Short and Long Sleeve, Ladies and Youth sizes available. 
Fundraiser ends Jan 31, 2015 so get your soon at the link below.
Super Cohen T-Shirts

*She would like to thank her very talented Uncle Thomas for creating Super Cohen's logo. If you would like to view more of his work please visit, Alaweiz Custom'z on Facebook.

The House that Love Built: The Ronald McDonald House

This  House is a blessing to so many families every single day, I don't know how we could do this without them. Most of us go through our lives never expecting to depend on others in such a way and then suddenly without notice our lives halt and we find ourselves on the receiving side of giving.

I pray that one day soon our family will switch sides and become a giver once again, however the next time around we will have a much different perspective.

Our journey has taught me an invaluable lesson; giving in any form is an immeasurable gift to those that need it most, while receiving is extremely humbling and will forever change you for the good.

Thank you to the Ronald McDonald House and to everyone that gives of their time or money to make this a home to families like ours. 
You can help make this house a home.

Ronald McDonald House News Letter

Thank You For Being Part of The Promise

Dear Friends and Family,

When we packed up our life almost seven years ago and headed a hundred and fifty miles East of everything we knew, we put our faith into practice. We learned firsthand that following God usually means leaving behind your own ideas of what you think you NEED or WANT.
We have always believed firmly that God put us on this path. And although He didn't see fit to reveal the details of this journey to us in advance, we have leaned on His promises for protection over our family. 

I have heard it said so many times that you don't need to attend a church to worship God or to establish a deep relationship with Christ. And although that logic may be true I can't help but feel saddened for those that are missing out on some of the most amazing benefits of being a Christian. The love and support that comes from a church family cannot be measured, which is why for us our first priority after relocating was to find a new church. 

We had already experienced this kind of love by the amazing church we were leaving behind, a church family that has continued to support us throughout the years. The idea of finding a new place to worship was difficult. It seemed impossible that we would find that same kind of love again... yet we did!

We said good-bye to everything and everyone that was familiar to us. It was quite an adjustment and took some getting use to the anonymity that came with moving to a place where we knew NO ONE,so imagine our surprise when... 

One Sunday morning we decided to visit a church that was associated with our old church. But something happened when we walked inside, a miracle of sorts, definitely something that we could have never predicted. We were greeted by the Pastor with a wonderful welcome... 

"You must be the Bramlee Family." 

To say we were shocked would be an understatement, we thought we would be slipping into a room full of people who had never even heard our name before. How could this be? How did they know us? We hadn't told anyone we were going to be visiting this church, in fact up until a few minutes before we left that morning we had planned on visiting another one. Todd and I had been praying diligently that God would clearly reveal to us which church He wanted us to call our new "Family." 

The two of us looked at each other and instantly knew that we were, "home."

From that day on we have received strength, comfort, and support from this new family that God saw fit give us. 

Now, here is the part that is most difficult to share, simply because it infringes upon my pride and stretches my humility, however, it is crucial in illustrating God's amazing handy work.

All throughout medical school God used our church, family, and friends to not only sustain us spiritually but also financially, with mysterious monetary gifts that would pop up just when we needed it the most. It has been hard to admit that there were times when things would get that tough but there were, and God provided each and every time. 

We knew when we accepted this calling we would be required to make sacrifices. We were prepared to trust God when things got difficult but what we didn't expect was the amazing ways in which He would provide for us.... continuously!

We were told that medical school loans couldn't financially meet the needs of a family our size. So what does God do to prove His mighty power... He shows off by sustaining us with not only the three children we started with but then gives us two more little blessings just to prove His point.

When that wasn't enough of a show He demonstrated His power by: providing a brand new home for us, giving us new friends that would act as family in times of need and provided for our kid's medical challenges by putting just the right people in our path when we needed them the most. 

There was an instance when we didn't have enough money to make it to our next pay check. I went to the mailbox with a tongue in cheek attitude and said, "Okay God, how about a miracle in the mailbox." And to no surprise to those of faith guess what I pulled out... a check for a hundred dollars. He put that plan in the works before we even knew we needed it, nor did the sender know that there was a desperate need for it. I have seen God act in so many amazing ways.

Throughout our journey we not only experienced many peeks but many valleys as well. I have been heartbroken at times, watched my kids physically suffer, gone without many things I would have "liked" to have had, but never once did we ever go without daily provisions that were needed and never once did we ever loose our JOY. 

In the midst of our trials we have also seen many miracles... from neighbors offering to buy our house before we had a chance to list it for sale, medical bills being wiped away because of a "mistake on their part", to exact amounts of money surprisingly appearing when it was needed, I could go on for days with more examples.

These blessing didn't come to us because we are any more worthy than anyone else but simply because we were willing to completely surrender everything to God's control (which is not an easy task for this control freak).

So many family and friends have supported us during this journey with their prayers, financial gifts, child care assistance and encouragement. There will never be a way to convey the true depths of our gratitude for every blessing that we have received. 


To all of you that have reached out to us in anyway, whether it was a much needed meal, or a note of encouragement, please know... 

You were part of a promise that God had made to us before we walked through the threshold of our journey. 

You have been used to fulfill the blessings that came with obeying a plan that never made earthly sense. 

You gave us the courage and support we needed to commit ourselves to His will...

How can we ever thank you enough!

Please accept our deepest love and appreciation for your selfless gift of support to our humble family.

All Our Love, 

The Bramlee Family

This Little Light

On the corner of a busy street sits a big house full of people seeking a lot more than just shelter. In the middle of that house there is a beautiful light. And although most never notice it in the midst of the grand fixtures of the beautiful atrium, it's there, hidden behind the glass of a high window.

I can't help but feel nervous every time my eyes wonder in that direction, praying that it's illumination is muted with darkness. Ironic, since typically it is our desire for lamps to provide light, however not this one, for the silence of it's darkness means hope. I often avoid looking for fear of what I might see and then one day it happened... 



The light in all it's splendor was aglow peering from behind the glass of the highest window. My heart sank and began to ache for the recipient of it's illumination, for because a light left this world this light now shines.

This beautiful fixture stays lit for 24 hours whenever a child of this "home" returns to their eternal home. 

You can't live here without knowing and falling in love with other families. We become each others biggest fans and cheerleaders, supporting each other in ways others can't. So when that light shines for one, it breaks the hearts of all.

The truth is I can't help but feel connected to this light in a very special way, for if it had been standing here many years ago.... then it would have been lit for my sweet little sister. It was just before this house of hope was built that she went to her eternal home, in the very same hospital that I now seek help for my little ones.  

I have often visualized this little light 
specially lit in her honor, in celebration of the beautiful light that she was to  those that loved her, just as it has been for so many other children of this home. 

Fight or Flight

Imagine a room full of smiling strangers all making over you and playing games and then suddenly holding you down against your will. Now, imagine that you're only two years old and through your tear soaked eyes you see the one person in the world that you love the most and cry out to them for help... only to have them aid in your immobilization. Out of desperation to break free from the pain that they are inflicting, your fight or flight kicks in but since these strangers have eliminated your ability for flight.... you fight with all of you have.

How do you convince a two year old to lie still while a well meaning medical team painfully inserts a tube past his stomach into his intestines? How do you convince him that he needs this to stay alive and that your not trying to hurt him but desperately trying to help him?

The answer is you don't, honestly, I don't even know if I fully understand it. How did we get to the point where it is necessary to inflict pain in order to help him? These things that Cohen must endure are for his well being and that is an emotionally difficult place to be as a parent. 

This month has been exhausting to say the least. My little ones have had more than their fair share of pricks, pokes, and personal invasions but they have come through them all with sweet smiles and brave hearts... I am so proud to be their mama! 

People ask me all of the time, "How are you so strong?" but the truth is I get my strength from these little ones. I am only as strong as they need me to be at that moment. Don't get me wrong I'm not exempt from stress and fatigue, I just don't have time to give into them.

During an interview today, for an upcoming Ronald McDonald House newsletter, I was asked to recount our experience here. It was the first time that I had stopped to really take in what we had been going through. Together we have endured four surgeries, inpatient stays with three different children, an MRI under anesthesia, testing that lasted over three hours, accidental tube coming out, one trip to the ER and countless appointments.

When your in the midst of a battle you don't stop to reflect on what is happening around you, you just fight through each trial with every bit of your strength. 

My greatest lesson from all of this is that we must seize every opportunity to replace our brokenness with joy every day.

My perspective of life has dramatically changed over the course of the last two years, giving me a new appreciation

for each day spent with those I love. I have been humbled countless times by the generosity of others and have seen just how much good really exists in the world.

Although, this year the Christmas season has looked a little different for us... I know we will appreciate it more than ever!