Monday, September 23, 2013

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!

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,

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

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Saturday, September 21, 2013

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.                                      

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Friday, September 20, 2013

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; persecuted, but not abandoned; struck down, but not destroyed.                                                                            
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Saturday, September 14, 2013

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,

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 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.

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Wednesday, September 11, 2013

Cohen's Home!

Well what a week we have had..... Bruises and red marks linger all over my sweet little boy's beautiful skin from the countless attempts to take blood and place tubes.  It is no wonder that he wants to spend the bulk of his time in my arms...who can blame him!!

Cohen's was admitted to the Carillon Children's Hospital following his EGD and Flex Sig copes on Tuesday September 3.  It was a long morning, apparently necessary steps were not taken to get our insurance approval in order so we waited for hours until the office opened and approval was finally poor tired hungry baby finally went into surgery four hours later than scheduled.  I have to say that watching them put him to sleep was on of the most difficult things that I ever had to witness.  The second hardest thing I had to do was to walk out with him still lying there on that table surrounded by strangers.

We were sent up to his room to wait for him during his was a long two hours until I saw that sweet little face again.   Cohen's GI was pleased with the way his system looked so we began to devise a plan to get him eating some safe foods.  It is so difficult to know that your child's well being rest on the decisions that you must make.  Doctors give you advice and information but ultimately the decisions are left to the parents, what an immense weight that sits on our shoulders.

During our stay we had the opportunity to teach many health care professionals about FPIES and to learn more about how to manage our special boy's condition.  We made the difficult decision to bring Cohen home with a NG tube (a feeding tube that goes in his nose and into his stomach).  Our doctors felt this was the best way to help nourish him right now until we can find more safe foods for his little belly.

I am learning to embrace our situation and my son's exceptional needs.  I am treading in new water, learning to do things that parents shouldn't have to do.... but I won't let any of this steal  my joy.   "Devil Get Behind Me"  our words close to my heart right now.  I will fight for this family and this little boy, doing everything I possibly can to maintain joy in their sweet little lives.

I don't know how people could begin to get through difficult times with out calling on our maker, ultimately He is the one in control.  I know that my child belongs to Him and that He loves him more than I do (which is extremely hard to imagine).  I lean on the strength that comes form the one that holds me in His hands and comforts me when I need it most.
 I may not understand the trials of this world but I learn from them and I will always allow God to be glorified through them....

Joshua 1:9 “Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go.”

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