Meet CASE!

This amazing boy was born 12-21-10 at a whopping 2 pounds, 13 ounces due to an unknown syndrome and Inner-Uterine-Growth-Restriction. His doctors didn't expect him to live but living life to the fullest is what he does!!!!
This Is his story:
-Case was born with a multi-cystic, dysplastic non-functioning left kidney (that has since shriveled up) and fluid pockets on his right.
-He is currently J tube and TPN dependent and fed 24 hours a day intervieniouly and straight into his intestistines due to swallowing issues, poor motility and intestinal issues.
-He has suffered from Crainiosynostosis (Sagittal), Chairi Malformation a tetered spinal all corrected via surgery hopefully to never return......
-He was born with an ASD, VSD, PFO and several "normal variants of the heart that are currently stable.
-He suffers from Failure to Thrive and extreme short stature.
-He started growth hormone therapy in March, 20015. He gets daily shots and they are WORKING!
-About a year ago, he passed out in a hypoglycemic shock with sugars below 20. He was quickly stabilized being we were at the hospital (thank God)....He still suffers from severe Hypoglycemia and can not go without nutrition for more than two hours, even at night.... He has home health nurses at night and while at school.
-Case also has very severe GERD on top of the motility issues and lack of function in his gut. He was unable to tolerate night feeds and is now on TPN and Lippids through a central line in his chest. He takes several medications to help but nothing seems to completely work....
-Due to lack of growth and intestinal failure he had his central line placed 1-20-15 (this is a semi-perminante IV in the major vein by his heart).
-On top of all of this Case was born with many birth defects and congenital anomalies. We hope to some day have a "name" to go with what ever syndrome he suffers.....but for know, we are blessed to have our boy with us.

Sunday, March 19, 2017

It's Okay Not to be okay.

It's okay not to be okay. 

You: "How are you?"
Internal me: "I might burst into tears.... It's been a rough week and it's only Wednesday. I've caught vomit, stuck a needle into a port, tracked a fever, spilled meds, hooked up IV fluids, make 600 phone calls, worked till 5 each day, tried to cook diner and straighten the house. I've fallen asleep waiting for the night nurse to come when I know there is so much more to do.... All the while, I've tried desperately to make sure my three other children felt as loved and "normal" as possible... Do you really want to know how I'm doing? I mean....REALLY? Will you give me "advice"? Will you tell me how "strong" I am? Will you say, I don't know how you do it? OR will you just look at me with a blank stare because, really you thought I would just say..."I'm okay."?
I give you a smile and say, "Good. I'm good, you?"
Now that I'm 6 years deep into the crazy, beautiful, chaotic, blessed journey of raising a medically chronic child I've realized something... IT'S OKAY NOT TO BE OKAY all of the time.
A few months or so, a coworker asked how Case was. After rambling for five minutes about Intestinal dysfunction, appointments, vomit, Drs, and insurance I looked at up and said, "oh. I'm sorry. Should I have just said 'okay'?." The answer was, "No. I asked because I wanted to know". 
The truth is, I'm not always "okay". I have days when I think I can conquer the world. Days where I go to bed thinking, "I've got this." Then there are days (more often than not) when I wonder if it's possible to die of exhaustion. I wonder if my girls are faring well. I wonder if I'll ever be completely "okay". 
Somehow even when I'm not "okay" it's okay. This crazy, chaotic life is strewn with beautiful. 
A beautiful husband who's always there at the end of the day to tell me "We've got this". A beautiful job that keeps me grounded and gives a a glimpse into lives just like mine, mom's that aren't always okay and you guessed it....that's OKAY! Four BEAUTIFUL children, one that was made perfectly imperfect and three that have grown into lovely young ladies that see how beautiful different can be. 
The reality is, we aren't born strong. Strength comes on the journey. I wasn't hand picked to have a special needs child because I'm better than a mom of typical children....I don't know why God picked me to be the mother of this amazing boy but I know that somehow it will all work out and in the end, the only person that expects me to be perfect is me. 
It's okay not to be okay.❤

Monday, November 7, 2016

"Love, you're not alone, cause I'm gonna stand by you."

Dear son,
5 years, 11 months and one day ago, they told me you would die. They told me were broken. I sat with your dad on the wrong side of the desk at the specialty OBGYN's office, hot tears falling down my face praying they were wrong. The words from that day are seared in my brain forever. They changed me. They made me stronger. They hit me like a hard punch to the gut taking my breath away. All along, I knew the words were coming. I knew you were sick but nothing prepared me for the words, "prepare for a burial". Nothing. 
In a way, that fairytale idea I had with my previous pregnancies that everything would always be okay shattered like a piece of broken glass that can't be put back together. 
Every year, around this time I feel it. I didn't even realize why I'd been acting so crazy the last couple days till "Stand by You" by Rachel Platten came on the radio and I cried like a baby. 
Tomorrow, we head to a state 4 hours away looking for answers. I'll take take you, my almost 6 year old, very alive son for your 30 something anesthetic procedure and pray it's not in vein. 
I'll hold the mask over your face until your eyes close and your body becomes limp. I'll kiss your head, whisper a prayer and wait. Maybe I'll wait another almost 6 years for answers, maybe a lifetime but through it all..."I'm going to stand by you. Even if I can't find heaven, I'll walk through hell with you." 
Son, even on the darkest days, I'll always be by you. I'll fight for you. I'll believe in you. I'll never stop loving you. You have made me better. You've shown me a love I didn't know existed and a strength I didn't know I had. 
Thank you,


Wednesday, August 26, 2015

Feel Better Bag.

You know how you take your child to get a shot and promise an ice cone for afterwards? Something small and sweet to put a smile back on there little faces.
Well, when you have a chronically ill child with oral aversions and digestion issues, the ocational "ice cream" treat just doesn't cut it.....
You see, sometimes my son  has multiple appointments weekly. We've been driving 4 hours round trip to Children's at least once a week plus the normal "well check", shots, etc. For the last 4 1/2 years, I'd promise him a gift from the hospital gift shop. So, now he owns everything under $10 in that gift shop..... half of it's broken, the other half deflated....
After a meltdown from a long day and an indecisive boy at the Children's hospital gift shop a week ago, his home health nurse suggested we fill a bag from the dollar store, put it in the back of the car and every time he has an appointment, etc., he picks a treat from the "feel better bag".
The world is a happier place....or at least our drive home is more peaceful.❤️
AND......He had SO much fun making it!

Sunday, August 16, 2015

Let Him Live.

Every year since my husband and I  got married, we've traveled the 8+ hour trip to spend a week at our favorite beach with extended family. 
We've done it with nursing babies, teething babies, potty training toddlers, motion sick preschoolers, a tube fed baby but never (not until this year) an IV dependent, medicine needing and tube fed 4 year old that wakes up multiple times a night sick and in pain. 
When Case got his central line in January, I can honestly say I was hesitant taking this yearly trip. 
When he then landed in the hospital 5 times in 5 months this year with infection, low platelets and various other problems, I was convinced we shouldn't go. 
All we had to bring. Things I couldn't just pick up at Walmart if I forgot it.....The billions of bacteria I was sure we're just waiting to crawl in his line...All of it scared me and I'd consider myself one that isn't easily fearful. It would have "just been easier to skip the trip". 
Then, during one of our April admissions I talked to one of my favorite Drs on his Intestinal Care team. Long story short, she said to "let him live". Told me all the precautions. He couldn't swim but he could splash once I cover the crap out of the line and dressing. 
It was those words, "let him live" that hit a feeler deep in my heart. 
Yes, we'd have to scope out the nearest hospital. Yes, there was a chance he'd wind up life flighted back to PA with infection, a broken line, etc., etc. (I thought of every worse case scenario). 
Truth is, it would be easier to keep him home. Heck, it'd be easiest to make him a bubble boy! But we didn't. Not because we're irresponsible or selfish but because we need to "let him live." 
In January of this year he was diagnosed with intestinal failure on top of his dozens of other diagnosis'....and the reality is, we don't know what tomorrow brings. 
We hope to give him every opportunity possible to be a boy. To explore and enjoy life outside the four walls of the hospital. 
Is it easy? Heck no. It's hard work! There are tubes and pumps. Puke and medication. 
Just a day trip requires so many supplies and medicines, syringes and stops but this summer was the summer we "let him live."
From the beach to fishing and amusement parks, Case and our little family lived in the moment and were blessed to enjoy the summer together. 
We're there hospital trips, a broken central line and other shenanigans? Yes. Was it because I was irresponsible and not careful, no. It's because this new life, this crazy journey is full of unknowns but those unknowns won't stop us from "letting him LIVE!" 

Sunday, August 9, 2015

Made for His glory.

"Babies are like computer programs. Lots of pieces put together to make one big picture. YOUR baby's programming is all wrong...."-one of my many, many OBGYNs during my very complicated pregnancy. 

My baby was "made wrong"....sick inside of me. No mater how healthy I ate. No mater the fact that I didn't smoke, do drugs or drink, my baby was disabled. He was full of health problems and I prayed. I prayed he'd live. I prayed that if he didn't, I'd have the grace a peace to say goodbye and still exist....I prayed for healing. I prayed for peace in the storm but above all else, I prayed for God's perfect will to shine through the darkness. 
Did I believe God could heal my baby completely? Yes. Did I pray for that? Sometimes but above all else I prayed my heart would stay thankful in ALL circumstances and that this tiny life inside me would bring God glory. 
Fast forward 4 1/2 years. God didn't heal my child and that's okay. I'm at peace with that. Does my heart break a little with every surgery, every procedure, every time they put him under, blow IVs, hold him down? Yes but God can put that back together. He gives me strength along the journey. Sometimes, strength is my only choice. Do I think I'm not Christian enough? Not worthy of a heathy son? Not Godly enough? Do I think God punished me for not being "enough"? Absolutely not. 
My's child was made perfectly imperfect and I'm okay with that. 
John 9:2-3

 2.His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”

3 "Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.

Sunday, June 21, 2015

An Open Thank You Note to the Teachers of our Daughters.

Dear Teachers that have no idea what you are getting into when my daughters enter your class rooms in the fall,

Thank you. 
When you saw their names on your class list did you know you'd be wiping their tears, listening to their stories of their brothers countless hospital stays and comforting them while he's hours away with mommy having surgery number....I lost count?
You didn't judge me when their hair was un-brushed and they forgot their lunch. You just smiled and got them fed. 
Thank you for being patient with me and sending extra field trip slips and bus tags home. You knew how often I couldn't be home because I was at Children's holding their brothers hand while he fought yeast in his blood, had blood transfusions, tests, tests and tests.....
You wore his t-shirts on the days my girls needed it most and made us a part of your classroom by hanging his pictures on the wall, reading my emails of comfort to my daughter telling her everything is going to be okay. You even let us come in to do a presentation on "Feeding Tube Awareness Day". 
You helped them, you love them, you never stopped rooting for them and their brother. When school ends for the year, you are still praying, still loving and still rooting.
You, teachers have no idea how much you mean to me. To my children. to my husband. 
I'm sorry I wasn't homeroom mom and that I forgot to send snack more times than I remembered...I was busy fighting insurance companies, sitting in ERs and laying on a hospital beds beside a very sick little boy.
You didn't give them special treatment because their bother is sick and they don't always have their momma home. No, you treated them the same as the others and for that I am thankful.
You, sweet teachers have hearts bigger than your paycheck and I see it in your eyes. Thank you for hugging me when I'm in the hall and not judging me when my eyes fill up with tears. It's people like you that keep people like me going. Thank you.
What a crazy journey you got thrown into! Not by chance but because God knew my daughter need you.
When she couldn't have me. When mommy and brother didn't come home from his appointments for days, weeks because he was too sick to leave, you were there to reassure them and listen with your whole heart.
While I sat in those hospital rooms, sometimes in isolation because my little one had some contagious infection, I was praying. Praying that my little girls would weather these storms and come out stronger than when they went in. I was praying for you. Praying that God would give you the grace to keep being patient and loving with us. 
You, sweet teachers are gifts from God and I can only hope that He continues to bless my sweet girls with such amazing teachers as we continue to fight this war of chronic illness. 
Thank you. I will never forget you.


Tired, thankful me.

Friday, May 29, 2015

A Special Needs Baby Changes Everything.

When a child is born with special needs, the whole family is effected. You know the quote, "A baby changes everything."? 
Well, a special needs baby changes everything and everybody. 
We'll start with the mom. 
I went from a mom of three "typical", healthy girls. The Children's Hospital was just a place kids with cancer went to that I'd ocationally donate a dollar to so my kids could sign their name on a little, paper gold pot or rainbow to be displayed behind Walmart checkout lines.
I had a part time job cleaning homes and offices, made home cooked meals almost every night. I signed permission slips on time, never missed sending a snack into preschool and had more than enough time to read stories to the girls, play with them and do all the mommy things I dreamed I would.  
I had regular dates with my husband, spent plenty of time complaining to my friends about the exhaustion of teething and ear infections....and so on. 
Fast forward 4 some years....
I'm am no longer a house/office cleaner. I quit my job when my son was born to be a full time mom/nurse/advocate/hospital bench sleeper/secretary/insurance appealer/ therapist/etc., etc. More times than I'd like to admit, I throw chicken nuggets and fries in the oven or let the kids eat creral for supper because I'm just too tired to cook....
I've driven tens of thousands of miles to and from Pittsburgh Children's hospital and spent so many days inpatient with my son that I could find the cafeteria with my eyes closed. 
I forget to send my daughters snack in so many times that the casual, "you forgot snack again and we had to eat last weeks left overs" doesn't even phase me.....
I lose permission slips and find myself calling the school office between doctor rounds while sitting beside my son's hospital bed more times than I'm proud of. 
My life is one, big, disorganized, unpredictable, beautiful mess. 
By the middle of May this year alone, he'd been admitted 5 times and had several outpatient specialist appointments....
This takes me to the siblings. 
They went from their biggest concern being "Will mom make me eat the peas she made for supper?" to, "Will mom and Case come home from the ER tonight or will I go days before I can even visit them at Children's..."
I've kissed their teary faces goodbye more times than I can count and answered questions like, "How long will you be gone?", "How sick is he?" and, "Are we going to spend another Holliday in the hospital?" With, "Sweetheart, I really don't know but what I know is, everything is going to be alright." Then I silently prayed, "Oh Lord, please make everything alright and guard their tiny hearts."
They don't know if next week mommy will be at their Gymnastics practice or if she'll be with their brother while he fights a central line infection. 
Their lives turned upside down and normal is no longer a thing. They've had to grow up quicker than I would have liked and mature beyond their years. They know, have seen and live with the reality of chronic illness and it's not pretty. 
They've seen their brother grey while his heart rate rose and the nurse bolased fluids into him. They've seen more poke, IVs and brutal surgery recoveries then their little hearts could handle. 
Through it all, they amaze us. Their compassion, love and understanding of other children with different abilities is remarkable. 
They know all about feeding tubes, central lines and growth hormone shots. 
They've done presentations to their classes during Feeding Tube Awareness Week and talk freely about such things. Things I knew nothing about until we were flung into the Special Needs life. 
Their lives are different from their friends and that's okay. They are so loved, educated and blessed. 
This brings us to the dad, my husband who's stuck by me through my crazy breakdowns, pity parties and stress eating....
His life was forever changed the moment the specialist read our 24 week ultrasound and said, "everything isn't okay" and the words of well meaning strangers that said, "boy or girl never mattered to long as it's healthy" cut like a knife. The reality was our baby wasn't healthy and my husband stood like a strong rock as the waves of this new medically fragile life style hit hard up against him. 
He's strong, works hard, even when he'd rather be at the hospital with me. 
He's learned how to throw lunches together in a hot minute and brush knotty hair on the way to the bus stop.  
He's now my councilor, my strength and the daddy to a boy he's watched hurt, cry and suffer. Something a daddy should never have to do. 
He's watched his little girls cry while missing mommy and has been Mr. Mom during long hospital stays and sleepless nights. 
He's been torn in three directions between the hospital, the girls and work while somehow manages to single handily financially supporting us all...

It's true. A baby changes everything....
A special needs baby changes everyone. 
We aren't just a family with a little boy with special needs. We are a family that sticks together like glue and knows that even when the days are hard and the future is unpredictable, we have each other. 
We take each day with stride and try not to sweat the small stuff because we know how hard the "big stuff" can be.