Live On My Friend...

Today, I was scheduled to write about something entertaining and educational, maybe even make you smile a bit. Yet, I was reminded this morning that sometimes, we must go off schedule. Everything does not need to be planned for perfection. You may recall reading that I worked for a cancer hospital not so long ago and when I left, I was well aware that my emotional attachment would not end there. In fact, I think about my patients quite often and my mood shifts just thinking of them. One patient in particular would send me thank you cards from time to time and even sent me a Gift Card when Veda was born. This man and his family, fighting a deadly disease but making time out of their day to send me a card, and let me know they were thinking of me! Actions sure do speak louder than words, don't they?

This morning I woke up and started my Sunday like any other day, with the exception that I was brought to tears when reading that my friend, had passed away. In our talks about our families he taught me to never wait until you are diagnosed with a deadly disease to start living. Today, start living today! All the other things in life can wait...but time and memories will not.

I write in remembrance of my Angel friend whom I never had the honor meeting, but will forever have a place in my heart.
Peace to you and your family F.P.L.

Alex's SMILE

When we were expecting Alex, I took for granted the complex process of creating a life. I had assumed we would be given a healthy child if I took care of myself when pregnant. Maybe we thought this because we had not lived to see otherwise, no lessons had been learned until Alex taught us on October 19th 1999, sometimes we can't predict everything. When Alex was placed on my chest for the first time, I looked down at him and thought I was hallucinating. (labor is quite the painful experience) Steve, looking like he was in a daze, not saying a word and then I heard my mom say "he's going to be OK," I quickly realized this was not a hallucination, they saw it too. Over the next hour we were fed a great deal of information, so much that the majority of it was not secured in my memory bank. His medical diagnosis was Cleft Lip with a Bilateral Palate. His NG tube was inserted so he could eat and then our families began to file in. The one thing many of them had in common was the tears welling up in their eyes and instead of a moment of excitement, it became a moment of uncertainty. Questions we all were asking, what was life going to be like for him? Is he in pain? How can we make this better?  The only question I wanted an answer for was what did I do wrong? I had read the pregnancy books, I had gone to my doctor appointments and I had taken my vitamins, so why did this happen?

Over the next few weeks we were educated on what to expect in the following months. He would require two surgeries prior to his first birthday, we would be heading to the University of Illinois at Chicago, he would be put through a series of tests and moldings, the NG tube would be removed and he would be getting a special bottle to feed from. Before we knew it, we were preparing for his first surgery which would be when he turned 3 months old. His reconstruction would come in phases and the first would be forming his upper lip. Everything about that day was textbook, we arrived early, we sat around for a bit, talked briefly with the surgeon who we had only seen one time (along with 20 of his students) and off he went. When we would see him next, he would have a lip! When the nurses came in and let us know he was out of surgery, they allowed one of us to go back and sit with him in the recovery room. Of course that was me! I walked back looking in every room trying to find him, and I remember passing a room with a little boy crying frantically and a nurse trying to console him. I kept walking thinking about that poor bug. A few steps later I realized, that was my bug! His face was so swollen that I didn't recognize him. A few days had past, we headed home and started to prepare for the next surgery, his palate.

We were not entirely happy with our experience in Chicago and found out about another surgeon at Children's Hospital in Milwaukee, Dr. Gosain. Our first visit with him was as different as night and day. He was our educator, he took his time and answered all of our questions, he approached our situation much differently. He knew we had questions and concerns and he made sure we left him with ease. We learned from this experience that as a patient, we never have to settle on a doctor, we have choices and go with our gut instincts. We are proud to call him Alex's surgeon.  The next several surgeries went great, Alex was in GREAT hands! Then the letter came...Dr. Gosain was heading to Cleveland OH. I panicked! Alex had one major surgery coming up and with our past experience, he had to be with Dr. Gosain. So, we packed up and headed to Ohio for Alex's bone graft surgery.

His bone graft was the last of his major surgeries and then he would be getting a lengthy break. This was a little more complex as they would be taking part of his hip and creating a gum-line for him. Rainbows and Babies in Cleveland was as amazing as Children's in Milwaukee, if not better. We were assigned a care manager who walked us through the hospital campus, gave us all a great understanding of what to expect during our stay there and connected us with the Ronald McDonald house. This would be our temporary home after Alex was discharged, while waiting for our follow up appointment to get the clear to head back to Wisconsin. 
This was a trip we will never forget! We had to arrive a few days prior to surgery for pre-op work which left a couple days of exploring Cleveland. We explored the Cleveland Metroparks Zoo, did you know Gorillas like Taco Bell hot sauce? Alex still gets a chuckle out of seeing the Gorillas eating the sauce out of the packets. We also were able to get some swimming out of the way, after surgery, Alex would not be able to swim for a while.

Surgery day went smooth, and he was released after two nights. I must say, the Ronald McDonald House was a life savor! I strongly encourage you to donate if you can, the simplest of donations can be collecting pop tops or preparing a meal for the families who call this place home. Not only did we have a room to stay in, but we had meals provided for us, Alex was able to meet and play with a therapy dog, participate in arts and crafts and he left with a special toy from the toy room. During our time at the Ronald McDonald House, we were again reminded to be fortunate that the only thing describing Alex as not "normal" was a diagnosis that is not life threatening and fixable. For everything that could go wrong with a child's health, we are fortunate to only be dealing with Cleft Lip and Palate.

Alex is currently in his last phase of orthodontia, which will leave only two more surgeries remaining. The next BIG event... After 9 years of braces, they are coming off in June!

Simplify

     A short few months ago, my outlook on life changed drastically. I had been working at a Cancer hospital for just over two years, and let me tell you, this was no easy task for a sap like myself.  In talking with patients and their families, I found some to have an everlasting amount of hope who refused to think about the "what if" and others who were just working through the process and emotions that this terrible disease forces upon them. Then, there were the ones who, even though they were still fighting, they were also a realist. They were planning their families future after their own death. This was hard, but yet it humbled me. It forced me to see the importance of this life I have been gifted. The morning of my turning point began with receiving a call from a patients spouse, who's wife, just a year younger than myself  and a mother of two little girls. I used to speak with her directly, however I'm sure we are all aware cancer treatment can do a number on a persons body. Her spouse was calling regarding trouble they were having with the insurance company. Think about this now, your 30 year old spouse is going through cancer treatments and you get to spend your day dealing with inconsiderate, heartless, money suckers who happen to call themselves insurance companies.(that will be an entirely different blog post) In talking with this woman's spouse, I heard their children laughing in the background and this brought a smile to my face, but only for a moment. I asked the question I always tried to avoid, not knowing what the response would be scared the crap out of me! "How is she doing, I haven't talked to her in a while." His response caught me off guard and silenced me for what felt like hours, it took him several seconds to find the strength to reply "she went to the Hospice home yesterday." Not preparing myself for this call, I was at a loss of words. What should I say or how could I help? I couldn't. There was nothing I could do to help him save his wife. Their young children would soon be motherless.

     Reflecting on this event, I knew I needed to examine my path as a mother and wife. You see, we have been blessed with the opportunity to build our American Dream. We can consider ourselves to be successful as we went to college, our family grew, we send our kids to the best schools, we have nice cars and we own a nice home for us to live out our happily ever after in. Then it hit me, the way our society measures success is based on materialistic possessions. We are following the path our society has written for us, without even realizing, this is not OUR dream. We work hard for this lifestyle, too hard if you ask me. I say this because, in order for us to have the American Dream, we have been sacrificing the limited time given to us to spend together as a family. Life has become not much more than a fast forward button with memories of us rushing here and rushing there, work 40 + hours a week to make sure we can have these nice things. Don't get me wrong, I do believe nice things can sometimes be a necessity. When realizing however, our lives have become nothing but trying to fit in and follow our Society's preconceived path of "normalcy" our years of memory making have been wasted. When reflecting on this life changing moment, I often think about myself and my family, and ask the question, what would my kids have left of me if I were to be called to the good Lord tomorrow? The answer, I am embarrassed to admit, scares me! They will remember me as a taxi driver, someone who signed them up for every sport and activity to keep them busy and active, a parent who made it to 2 of the 8 football games or how stressed out I always was. Waking up at 6:00am to rush out of the house by 7:15am, not walking back through the door until 6:00pm, having to get dinner on the table, making sure we are keeping up with homework (all while distracting a 18 month old wrecking ball), bath time and to bed by 7:30 is NOT FUN! Worst of all, my kids can sense the stress and see the struggle. This brings me to my knees and tears to my eyes.  Why have we have spent so many years working so hard to create the wrong American Dream.

     Simplify is the directive now. We are unable to change our past, but our present and future is still an open book. What we really need is simplicity, eliminating the cram filled schedules, taking a step back and breathe,,, just breathe. Lately, after the kids have fallen asleep, I spend many hours reading and researching everything from parenting styles to education and even road trip destinations. The Dalai Lama Summed it up best, when asked what surprised him most about humanity, he answered "Man. Because he sacrifices his health in order to make money. Then he sacrifices money to recuperate his health. And then he is so anxious about the future that he does not enjoy the present; the result being that he does not live in the present or the future; he lives as if he is never going to die, and then dies having never really lived." The American Dream I now search for is far from "normal" and I am sure our not so "normal" family will be making you think twice about us...maybe even three times. Our path to simplicity has officially begun with one small change at a time. It will be quite interesting to see where this next year takes us.

I leave you with some things to ponder...
~ Erica~

Pituitary Dwarfism

Say What? It was just recently that I learned of the medical definition used for Growth Hormone Deficiency being referred to as Pituitary Dwarfism. I must say, we had never heard Eva's diagnosis referred to as this and seeing this on her documentation made me feel a bit uneasy. Therefore, this will be the last you hear me refer to her deficiency in this manner. This did however, open my eyes to the fact that her diagnosis is not just effecting her stature. In fact, what many of you may not know is the complications could arise with her organs as well. GHD impacts all aspects of growth; including heart and lung function as well as reproductive organs and learning delays. I would like to stress, COULD arise, as many children will go through life with no other issues, and there are many that will. We are in a state of uncertainty and will be for some time to come. Currently, Eva's physical (bone) age is 4.5-5 years old. It is so weird to think about her chronological age being 7.5 years old and yet her body is that of a  4.5-5year old.  Below is a picture from our training session as Children's Hospital.

GH Therapy began in the beginning of January 2015. Steve, Eva and myself were trained by a endocrinologist nurse at Children's Hospital as we are responsible for mixing the solutions and giving the DAILY injections. We get quite a few questions about her injections so I hope to answer some of them here. We knew going into this, that the injections would be a daily routine for Eva that would last until after puberty at the soonest (again, it will all depend on other organ functions) We opted to approach the injections by having Eva play a large role in the training and taking on some of the responsibilities. This has become part of her everyday life and we felt that honesty was the best approach. Injections are to be given at consistent time between the hours of 6:00pm-8:00pm. The old saying stands true "you grow when you sleep" as GH is released during long hours of rest, giving her injections shortly before bed will be most beneficial when they work hand in hand with the little GH her body does release. She has been a trooper! She tends to have some burning some of the time, but overall she has taken them with no issues. When we first began, she had to look away and hold her breath when we gave the injections. Fast forward a month and she is now able to watch the entire process and when she is ready, the next step will be pushing the button ;)

We have experienced just one hiccup so far. Headaches can cause concern with children on GH therapy as the medication can cause fluid buildup around the brain. After two weeks, she started complaining of headaches and by three weeks they were coming more frequently as well as progressively getting worse. With this happening, we had to stop the injections for 2 days and then begin again with a lower dosage. We are in the middle of progressing back to the prescribed dosage, and hopefully in another two weeks we will be right where we left off.
You may be wondering if we have seen growth yet? We are happy to share with you that... YES! She has grown 1/2 inch in just over a month. To some, this may not be much, however for Eva, before GH therapy she was growing 1/2 per year.    

Let Us Pause for an Introduction

We feel the proper place to kick-start our new blog is by introducing you to the three reasons we contemplated starting this journal. Each one of them has uniqueness that has impacted our family in ways that you will read about in later posts, however, here is a sneak peek into their not so "normal" life. 

 

ALEX- Our oldest has surprised us all, in more ways than one. After the initial shock that Steve and I would now be classified a statistic within the teen pregnancy spectrum, he outdid himself by giving us all the shock of our lives when he was born. To our surprise he was born without a lip, however the political and more appropriate name is Cleft Lip and Palate. In case you are not familiar with what this is exactly, I will give you a very brief synopsis. During gestation around 6 weeks , his upper lip, gum line and palate did not fuse together as it would in a "normal" fetus, in return leaving a large gap. Since birth Alex has undergone 8 surgeries, speech therapy beginning at age 2 with graduation taking place at age 13, he's also in the process of extensive orthodontia by a orthodontist specializing in CLP. With only 2 surgeries remaining, he will soon be closing the surgery chapter in his life. I personally believe due to his diagnosis and the reconstruction process, it has benefited him more than being a challenge. He has always been tough, respectful, takes ownership in his academics and is quite the well rounded kid as his athletics keep him occupied. If you see him around, don't be surprised if he keeps the conversation short and sweet. Only those who know Alex on a personal level, have heard him speak....as he is not a man of many words.           

 

 EVA- The Diva. Our little lady is the heart of our family. She may be little, but my goodness does she have the worlds biggest heart. She cares for others so deeply and is quite the emotional mess when she hears or sees something sad. (including the dog commercials) Eva's physical journey did not start at birth like Alex, however we always had a suspicion that something may not be quite right. At the age of one, failure to thrive was officially labeled on her medical chart. You see, every child is measured on a growth curve and is then compared to other children of that age. Eva, well, she had her own growth curve, it just happened to be under the charts, not necessarily on them. Of course a series of tests were done and countless vials of blood were taken over the course of a year. Needless to say the first year of testing came back "normal" and as a parent I put the ca-bosh on further testing. She was happy and healthy, just little, and until she showed me another reason to put her through this anguish, we were done. From that point her growth was monitored closely and her growth curve was really not a curve at all, more like a straight line with a tiny bit of incline from time to time. Her 7 yr old visit showed a change however, her pediatrician revealed the first decline in growth. This, along with several other factors was enough cause for concern so we moved forward with additional testing.We found that she is Growth Hormone Deficient, Eva's pituitary gland is not functioning "normal" and her body is not producing enough of the growth hormone it needs to grow on its own. Re-precaution of lower than "normal" GH  can result in not only short stature, but things we didn't see, such as delayed organ function. Currently, we are in the process of getting her body on track with the help of GH Therapy and her excitement to finally grow is going to be quite the adventure!

VEDA- Where to begin with Veda? Our little wrecking ball,our free willed child,our pain in the rear end? Veda has been quite the handful since conception and we don't see this slowing down anytime soon, if ever. Veda is the baby who walked early, has NO fear, yells back, loves climbing on anything and everything and I am most certain 5 years have been lost from my life since we found out we were having another child. Don't let the angelic smile alter your perception, we challenge you all to spend one day with her and you will see what it is we are trying to convey. We are learning to embrace the free willed child and I must say, the things I would fret about before Veda have disappeared. She is teaching us a great deal about choosing our battles and even though she is quite the little stink-pot, we have been given this gift to remind us that we need to live life to its fullest. She will have no struggle with this, unless of course you define injury as a struggle. I see many of those in her future. Many! 

Meet The Fam

                                                                          

Congratulations! You somehow have found your way to our Ziccarelli blog, maybe you know us personally or you're an acquaintance perhaps. It's even possible we don't know one another, but one thing we do know is that you will have more than a glimpse into our chaotic journey. Silly me, for those of you who don't know us, we are high school sweethearts who started our journey together at the age of 16. We welcomed our first born when we were practically babies ourselves, fast forward 16 years and here we are, a family of 5! You may have overlooked our blog name and if that is the case we would like to make mention, if you are looking for a "normal" family blog, you will need to look elsewhere. From health challenges to a difference in point of views, we will leave you laughing and sometimes crying. We will present you with current updates and you better believe we will be throwing it way back to 1998 when our journey first began. Cuddle up...Get cozy...and keep in mind, the purpose for this blog will remind us all... Normal is overrated! ~ Steve and Erica Ziccarelli ~ 

 

The Ziccarellis- Steve, Erica, Alex, Eva and Veda