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.

The Birthday Blues: Cohen's Update

This time last year I was preparing for the arrival of my sweet number five.  It was a rough ending to an already difficult pregnancy so I was more than excited for our due date.  I can't believe how fast time as gone by,  but what is even more unbelievable to me is what it has taken to get here.  My poor little guy has had a very rough start to his beautiful little life and it has been so difficult to watch him go through so much pain.

Before his FPIES diagnosis he had several hospital stays that were filled with needles, tubes, and countless tests.  I never dreamed that this little bundle of joy would experience so much discomfort in his first year of life.  We are so very thankful for the blessings that we can celebrate with him and that he is growing well despite what he has been through; but that doesn't take away some of this disappointments that come with his disease.

I have celebrated 4 first birthdays, all of them with so much excitement and of course that famous picture with little cake filled hands and icing mustaches.  There is just something about seeing babies tear into that first confectionery delight,  which seems to have become a type of  passage into toddler-hood.  I guess that's why I have so much sadness when I think about this special day.  I am only human and I can't help but find my mind often dwelling on the things that my little guy can't do...one of which is EAT...so obviously that means no cake diving baby pictures for our little scrap book!

I know that my sweet boy won't miss it....but his mama will!

You right!  It isn't the end of the world.... and yes I am very blessed to even have a little one to celebrate with, but just for a moment I need to be sad.... just for a moment I am going to let myself morn the loss of that image of a baby becoming a cake diving one year old.... just for a moment I am going to let myself be mad that my child doesn't live a "normal life".   

I really haven't been able to bring myself to think about that special day in detail, in fact I can feel myself become anxious when I think about it.  I am sure if my little man could talk he would tell me that the greatest gift I could give him right now would be to make him feel better.   So for now,  instead of planning a big day filled with festivities we are planning a hospital stay full of needles, tubes, tests and surgery.

I promise I won't let myself linger in this rut of sorrows or keep my focus on all of the negatives for to much longer.  Perhaps as early as tomorrow I will once again see the silver linings that hoover around me.... but for right now in this single moment...

I am sad

Mathew 11:28 

"Then Jesus said, "Come to me, all of you who are weary and carry heavy burdens, and I will give you rest."

* Positive birthday post will come I promise...complete with our foodless cake idea!

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.

Cohen 6 Months Old

Cohen Isaac Bramlee

Well little man it has been a rough start to the new year but things are starting to improve.

You have had quite the 6 months, full of growing and learning new tricks.  We are so happy that you are part of this family.  We love you so much little bullfrog.

You turned 6 moths old on March 14, 2013.  

Things you have learned to do so far:

~Laugh at everyone
~Roll from your back to front and front to back                                                                  

~ Sit up on your own

~Out grow the mow-hawk you were born with...I miss it already

                                         
                   

~Eat oatmeal (but we had to stop because it was giving you tummy problems)

~Jump in your jumpy chair (probably one of your favorite things to do....it also puts you to sleep)!

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~Your starting to get the hang of cruising around in your GT

 You have have already been diagnosed with Laryngomalacia and Asthma and have been in the hospital twice.  Unfortunately, by this age you have already had a few medications.... Zantac, Steroids, Albuterol, Antibiotics, and two maintenance drugs (Prevacid and Pulmicort).   We have deemed you our "Little Volcano"  because you spit up all the time.....and everywhere! 

From your 6 month check-up (you were finally well enough to get your vaccinations) :

Weight: 17 lbs. 9 oz.   50%          

Height: 26 in.              25%

Head: 18 in.               90%

The first 6 months with you have brought so much joy to our family.  It is exciting to see your little personality starting to emerge.  You are a patient and easy going little boy and you love to sit back and watch all of the commotion in our house.  It isn't very often that you are left to yourself, you are constantly being showered with love and attention.  I look forward to watching you find your place this crazy but wonderfully happy family that God has given us. 

 I love you with all of my heart littlest bullfrog.....  Happy 6 Months!

James 1:17a "Every good and perfect gift is from above, 

coming down from the Father of the heavenly lights"

Milestones

Anareese Elizabeth (or Resse Cup as Addyson likes to call you, which is pretty funny because she doesn't even know what a Reese cup is..lol) you have had a big couple of weeks.  You are now using a sippy cup, eating rice cereal, and sitting all by yourself!

You are sleeping in your not-so-big girl bed now.....

We had your first family photo's taken.

This past week you took your first ride on an airplane and then enjoyed your first trip to the beach.  

On the way to the beach.....

   

On the way home.....yes, you sleep the entire trip, both directions!

But a first trip to the beach just wouldn't be complete without tasting the sand, which by the way 

didn't taste nearly as good as you had anticipated!

Unfortunately, you also had the opportunity to experience your first antibiotic, which was followed by an allergic reaction!

And now not only are you getting your first tooth but you are already getting your second one too!  I'm sure going to miss that toothless grin.