FIRST DO NO HARM...

One of the many problems with having a medically fragile, special needs child who receives private duty nursing is that you have very little control of your child's health care. Where I can give Emily and Ethan chicken nuggets and french fries for dinner occasionally, Caden's diet is doctor regulated and needs to be administered as directed by his nurses. There is no room for Mommy to do her thing and use that Mommy gut instinct to care for her child.

It is almost as if he is a child of the state (or at least the medical world). I can suggest ideas to medical professionals after doing hours upon hours of extensive research, but most doctors just brush my ideas aside with some scientific justification as to why my ideas are not possible. I understand they have years of education and experience on me but my son is unlike any child out there. Doctors have said it themselves. So if Caden is unlike any other child out there, isn't it reasonable to think something may be possible although science would normally suggest it shouldn't be? 

For example, when Caden had his last visit with his G.I. who has worked with Caden for the past three years, I suggested we take a look at Caden's Vitamin B level being many of my readers had suggested his symptoms resemble a deficiency. Caden's G.I. said that because he wasn't anemic he wouldn't have a Vitamin B defiicncy. Okay...fair enough, but since Caden is unlike any child out there isn't it possible he could have a deficiency without being anemic? It is a simple blood test that has never been done with the ten thousand blood draws Caden has had. Yes, I agree, it is most likely not the cause of many of his issues, but a simple test could either eliminate that possibility or show something easy to fix.

Another very frustrating example, is when I suggested to his one doctor the possibility of a casein allergy (Casein is a protein commonly found in animal milk). She said that his last endoscopy did not show any signs of Eosinophilic Esophagitis (an allergic inflammatory condition of the esophagus). Okay...but isn't it worth a shot  to tweek his diet to eliminate a somewhat common food allergen just to see if it makes a difference?

These are both very simple, harmless requests from Mom but you would think I was asking for a complete bowel transplant. So after much thinking, I have decided to take back control of my son's health. Well, at least the diet part. Now I am not a registered dietitian but I am a Health teacher with a Masters degree and more importantly, a Mom with common sense. So this weekend I am attempting to try a blenderized diet which will be gluten free and casein free. We will see what happens. Worse case scenario, we see no improvement and decide what to do next. But it is possible that we will see some improvement, particularly with Caden's intestinal cramping.

Yes...I am thinking outside of the box. I am starting with the least invasive, simplest "fix" and will move on from there. Who knows?

What I do know is that my little boy can not go on like this. We can not continue to watch him suffer. I am taking back my son and his health. I will use my motherly instinct and love; something no doctor with any level of education can do for Caden.

SERIOUSLY...ONE PARAGRAPH?

I thought I would take this post to do an update on how Caden is doing since his lovely five week "vacation" in hell at CHOP. I also thought that since so many of you have been so forthcoming with information and doctor connections, I would summarize Caden's medical journey but I then realized it was impossible to do that in one short paragraph as many of you have asked. Please understand, I have not forgotten to do this, but it is simply not possible. Honestly, one book might not even cut it. In his three short years on earth, I feel I could write volumes on what this little boy has been through.

In the next few weeks I plan on putting together a packet with a cover letter from me explaining Caden's medical "mystery" and asking, or better yet pleading, for doctors to take a look and see if they could help. I must keep the letter brief enough that they will be willing to read it, but interesting enough that they will be intrigued. I will include, with this letter, any medical records or documents that I think may help peak a doctors interest. My goal is to send this packet out to the doctors I have researched and many of the doctors and institutions suggested by my readers. Hopefully a few doctors will take the time to look through the packet and will be interested in seeing Caden.

So how is Caden? Well...it appears he has begun yet another tumble down the medical mountain. Not that he was doing great when he first came home from CHOP, but he was better than he had been before his admission. However over the past couple of weeks, we have watched his health begin to, once again, deteriorate. Without exaggeration, Caden has slept through the night (meaning at least eight straight hours) maybe once in the past three weeks. On the other twenty or so nights, we are up with him all night long. Most of the time he is in severe abdominal and/or intestinal pain which requires us to painfully vent him and give him additional glycerin suppositories. Sometimes this relieves the pain and he is able to settle back down, but most of the time the pain is only slightly diminished and we hold him all night to comfort him as best we can.

On top of his sleepless nights (and ours), Caden has begun vomiting more frequently again. On average, he is throwing up two to three times a day. Thinking about all of this the other day, I have estimated that Caden has vomited over 3000 times in his life. Not a typo people...3000 times. Doctors love to tell us that there isn't much they can do and that they believe the vomiting is neurological. Well that's great...at this rate if we are lucky enough to have Caden with us for a while he is on a pace to have vomited 30,000 times by the time he is thirty. Unacceptable!

Neurologically, Caden is preferring to be flat more and more. This is never a good sign as it usually means something isn't right neurologically. He is slowly moving back to the child who is almost catatonic when upright and energetic when flat. Upright, he is more likely to vomit, have myoclonic jerking movements, get severe hiccups, drool, have an upward visual gaze, become motionless and almost seem comatosed. As soon as we lay him flat he begins to be more vocal, kick his legs, lift his arms, become more alert and "perk" up. It's uncanny how he changes so drastically and so rapidly between positions.

Lastly, due to the increase in vomiting and pain, we have had to skip many of Caden's "meals". While we keep him plenty hydrated, we are concerned that this will lead to a downward trend in his weight. He is already way below the curve and he can not afford to drop any lower.

Although we are concerned with his health, we hesitate to bring him back to the hospital. Not because we aren't worried but because every trip to the hospital leaves him worse than when he came in. If doctors say they don't know how to help Caden why should we succumb him to the torture his hospital stays usually provide him. Of course if his health continues to decline, we will have no other choice but to bring him back to the hospital so he can be poked and prodded like a lab rat just to find out he is "normal" according to his tests.

Caden does have an appointment scheduled with CHOP's Pediatric Advanced Care Team. When Caden was in the hospital this spring and I was flipping out over the lack of quality care towards my son, the PACT team came to see me. I was very impressed with their apparent concern for not only Caden but for me as well. Two of the most compassionate doctors Caden has ever seen also work for the program so I am hoping that maybe they can help guide us as to what to do to give Caden the best quality of life we can.

We are continuing to aggressively pursue going out to Nationwide in Columbus, Ohio to see Dr. DiLorenzo (the top pediatric motility G.I. in the world) and Dr. Grubb (the top Cardiologist who specializes in Dysautonmia and Ehlers-Danlos) in Toledo, Ohio. Because they are the best it is hard to get in and their waiting lists are long but we are being aggressive (and a bit annoying) so hopefully we will get an appointment soon.

As I said earlier, I will begin putting this packet together next week in the hopes that it can be sent out to doctors all over the country by the end of the month. If you have any suggestions as to a doctor (pediatric) who may be able to help Caden, please post that doctors information in the comments. For those who need more information on Caden, please check out the following pages/posts:

THE JOURNEY

DIAGNOSES

LITTLE BOY WONDER

Again...from the very bottom of my heart, thank you for all the support, prayers and information in our quest to help our amazing little superhero.

HIS SMILE

When people ask me how Caden is doing, I put on my "smile" and usually respond with something like "Caden is Caden but at least he's home" or "Caden is stable" or if it appears the person doing the asking is hoping for great news, I might even say "Things are good".

But most of the time, they are not.

People ask because they care; because Caden has become a part of their lives. But most people, understandably so, do not want to hear every detail of Caden's day to day struggles; of how we were up all night trying to make his pain more bearable by venting his g-tube and giving him yet another glycerin suppository or holding his head as he vomits. No...people want to hear "Caden is doing well". And so...that is what I try to say with a "smile" on my face.

I "smile" so that others feel better, less awkward and more at ease. My "smile" forces me to stay positive; to be an upbeat, "you can do it", inspiration to other parents who have sick children. No one wants to see me moping around, wallowing in self pity...so I don't. Or at least I try not to.

Now this is not to say that my smiles are never genuine. I smile when Caden smiles up at me or when he laughs his notorious belly laugh. I smile the few times I get to watch him sleep peacefully wondering what he is dreaming about that allows him to be comfortable for the first time all day. I smile when we get to be a family of five with no nurses or therapists. I smile when I see Emily and Ethan hugging Caden or holding his hand. 

But often, my "smiles" are simply disguises hiding the fear, anxiety, anger and sadness that I feel as I watch my little boy's health decline. They suppress my need to lash out, yell, kick and scream. They allow me to temporarily bury my true emotions during difficult times or when I know acting on these emotions will only get me in trouble.

But when Caden smiles, it is always genuine and I honestly do not know how he does it. Children are honest; sometimes brutally honest because they can be and they can get away with it. They wear their emotions on their sleeves. They will tell you that you have gotten fat or you are going bald. They will scream when they don't get their way and cry when they want something. They do not care what others think. Children are genuine.

And so are their smiles...

So when I see Caden smile after just coming out of his fifth surgery in five weeks, I know it is genuine. For some unknown reason, Caden is happy. Caden smiles more than any other child I know. Why? Doesn't he know what's going on? Doesn't he know he can not do the things his brother and sister can do? Shouldn't he be angry or jealous? I know I would be. But he smiles. In fact, all the sick children I have had the pleasure of meeting over the past three years...smile. And they smile a lot.

Caden's smile is what keeps me going. It is his way of saying "Mommy...everything will be okay". It comforts me when my heart hurts and my spirit is crushed. His smile is the door to his pure soul and kind heart. It assures me that I am doing my best and he knows it. It is his way of saying "I love you Mommy" and letting me know that no matter what happens, everything will be alright.

Caden's smile is my hope.

PERSPECTIVE

Caden was up all night. I mean, literally, up all night. If Matt and I got a half hours sleep we were lucky. Caden was in a lot of pain so we comforted him, did what we could to ease his pain and stayed awake holding him in our arms. Although we did not sleep, we considered ourselves lucky.

Why?... Because Caden was with us all night. While many would be spending the next day complaining to their coworkers about their lack of sleep, I am grateful for my lack of sleep. To me, it means Caden is here with us and for this, we are blessed.

Caden finally fell asleep around 4:30 a.m.

Too many Mommy's and Daddy's said good bye to their little one's this past week. Too many precious, innocent angels earned their wings. Some, from the day they were born, never had an opportunity to leave the hospital. Others were doing well and then suddenly fell ill and yet other's had been fighting long, hard battles struggling to hold on. Yes...today I am very lucky.

Everything in life is about perspective. While many are grateful for what they have because they see what we go through on a daily basis, I am grateful for what we get to go through on a daily basis. The very fact that Caden envelops our lives is a blessing. His daily struggles, which become our daily struggles, are a gift and we are thankful.

Today's post is dedicated to all the little one's who have briefly graced this Earth and left behind lessons of love and strength for all of mankind. These warrior's fought hard battles and far surpassed expectations. They hung on to give their families time and left behind a legacy that will remain in our hearts forever. In their short lives, they have given more, expected less and loved unconditionally. Without the use of words they have told stories that will always remind us of just how precious life truly is.

Although they have left us far too soon, I believe with all my heart they are in a better place. As much as I can in no way imagine the pain these families are going through, I believe these children will live on in the goodness of others who were impacted by their short time here on Earth. 

Their presence lives on in the acts that follow by those who became a part of their journey. Maybe we will all be a little kinder, a little more patient and a little more appreciative of the gifts we have. Maybe we will take time to enjoy the little things, hug more and hate less. Yes...these little one's will always be with us.

They are the gentle breeze on a warm summer day; the sweet smell of fresh cut flowers; a beautiful butterfly dancing; a breathtaking sunset on a summer evening. They will watch over and protect those children who continue to fight. They are the small miracles that occasionally happen and no one really understands why.

God bless the little one's lost and those who continue to fight.

I leave you with this...

THE BRAVE LITTLE SOUL by John Alessi

December 6, 2010 at 9:25pm

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

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MOVING FORWARD...

Thinking back to the day when I first learned of Caden's brain injury, I remember, well to be honest...I remember very little. I watched the doctor's face as she rambled on about what we need to start doing with Caden in order to give him the best opportunity for success and all the while, I was feeling numb. This couldn't be happening; not to me. This happens to other people; I have a plan and this is NOT part of it.

Over time the initial shock wore off and I began going through the stages of grief:  denial, anger, bargaining, depression and acceptance. Although these stages are generally reserved for those who have lost a loved one, parents of children who have special needs go through a similar course, but in a different way. I am not sure I have completely made it through this process, but the heavy heartache of knowing my son will never be able to do the things typical children do, has slowly begun to lift.

At first I was in denial. "How can this be happening to me after all I have been through trying to get pregnant in the first place?". "Haven't I been through enough?". "NO...he'll be fine. Look at him. He looks fine. Caden will get better. You'll see... and he will be able to do everything his brother and sister will do." "Besides, Caden was the strongest during my pregnancy. He was my Belly Bully."  Yes, I truly believed he would be fine and the brain injury would just go away.

Thinking back, this was a very selfish phase. Yes, my heart ached for this little baby who I hadn't even gotten to know yet, but I had just been through a horrible pregnancy and now this was getting thrown at me. Of course, I am no longer in denial and I am grateful for that.

I am still angry but not as angry as I once was. I was mad at God. I didn't understand how He could do this to my son; to my my beautiful, precious, innocent little boy. I was angry and jealous of others with "typical" children. I believed their lives were so much easier than mine and it just wasn't fair. I am still angry but not just for what my son goes through everyday but for ALL the children. The last few years have opened my eyes to the world of sick and special needs children. It is a world I wish didn't exist but one that is more beautiful than anything I have ever seen.

I will never stop bargaining. Why should I? My husband and I would both sacrifice our lives in a heartbeat to give Caden the opportunity to do the things his brother and sister can do; to give him his health. I know this is not an option but I will never stop bargaining.

I often feel sad but I don't allow myself the time to be depressed. I think this is where starting this blog comes in. I needed an outlet and a way to express my feelings and I have found it in my writing. My blog has allowed me to open myself up to the world and in return has allowed the most amazing world into mine. I am less lonely now because I have found others who grieve and cry for their little ones, who inspire to make the world a better, kinder place and who advocate and fight with all their might for their little superheros. 

Acceptance...I am slowly finding my way and I love it. There is a sense of peace here. Acceptance is place where you can let go and start living again. It has allowed me to embrace Caden's demons and turn them into useful tools to hopefully help others. As I have said before, I live in the "now" and am happy here. It is acceptance that allowed me to scream in sheer delight when Caden army crawled backwards the other day. No...he didn't do it right and he should be walking, but he did something I have never seen him do before and I was the proudest mommy in the world. I have accepted what I can not change and, although I will always wish for Caden to be like other toddlers, I couldn't imagine Caden as any one other than the perfect little boy he is.

I have learned that it is okay to have bad days and there are days where I find myself back in denial, but I can move away from these emotions when I look at the beautiful boy in front of me. A boy who has inspired a world and has done more in his short life than many do in their lifetime. I have turned these emotions into positive energy; a force which drives me to fight for him and other children like him; a passion to do good and a spirit to live.

Click on the following link to watch the You Tube video:

Caden and his sister, Emily, singing their hearts out

CADEN'S JOURNEY

I have created a montage and story to share Caden's journey through pictures. As the montage shows, despite all he has been through, Caden continues to smile and light up the world.

This past weekend, many family, friends and acquaintances, came together to hold a fundraiser for Caden and our family. It was an unforgettable night of laughter, fun and generosity.

As I looked around the room at the many faces, some I had never seen before, it reminded me of just how lucky we are. So many people sacrificed their time and gave so much of themselves to help our family. We are forever grateful to all who have been there for us through this journey.

I don't watch the news and I, honestly, rarely pick up a newspaper for what I would see and read would be far too depressing. No...I read about the "little" people, I seek to know those who give more than they receive. I have learned that the world IS a wonderful place because of the kind, caring and generous people in it. I have surrounded myself with those who love more than they are loved, who give more than they get and who laugh more than they cry.

It is because of YOU, that Caden smiles. It is because of YOU, that we believe, hope and will never give up. Caden may be an inspiration to you, but know that it is because of YOU that he fights so hard.

Thank you from the very bottom of our hearts and God bless each and every one of you for being a part of our family and for coming along for the ride....

The GOOD, The BAD and My Downright UGLY!

The GOOD...

For those who have been following my posts, you know I generally try to stay positive. This has been a work in progress as I have a history of being negative about almost everything. Seeing the glass half full has allowed me to enjoy more from life and to appreciate even the smallest of "perfect" moments.

When I was first told of Caden's brain injury, life came crashing down for me but the shock of it all hadn't sunk in until much later. It was when I saw Caden's triplet siblings progress ahead of him, that I realized despite them being the same age they were in very different places. Nonetheless, I believed Caden would develop at his own pace and with his brother and sister as a driving force of inspiration, Caden would become a "typical" little boy someday.

As time passed and I saw the "typical" world around Caden develop while my son stayed behind, I realized that the idea of Caden doing what his "typical" peers were doing was not in the cards. It took a long time to except this, but I have and I am good. 

Caden has brought more joy to my life than I could ever have imagined. Despite the many struggles, set backs and defeats, his strength has inspired me in ways I never knew possible. As I have expressed before, I am better because of him and this is GOOD.

The BAD...

However, I am human. As much as I try to stay positive, whether through my writing or general attitude, I too, have my BAD days. When Caden first began therapy at eight months old, I would watch the other children around him and often wonder where my son would be one day. Would he be like the little girl taking steps on her own or the boy using a walker? Or would he be like the older child who can do very little at all? It scared me to think that one second of Caden's life (the moment of the brain bleed), could lead to so many frightening possibilities. I remember crying at many physical and occupational therapy sessions because of my feeling of loneliness and sense of doubt. It was then that I began to live in the "now" and brush aside trying to imagine where life would take us down the road.

I remember feeling angry, jealous and bitter of "typically" developing children and their parents. I constantly compared Caden to "typical" children. "Wow, that baby can do that and Caden can't even..." or "I really wish Caden could do what that little boy the same age can do." I resented the norm because I had three developmentally delayed children at the time. I threw away all the baby books or "What To Expect In the First Year" type of books. They only frustrated and upset me more.

Eventually I watched Emily develop into a typical little toddler girl. Ethan, although delayed, learned to walk and talk and play as any three year old would. But Caden is still physically where a four month old should be. When Caden first started going to the pediatrician, the doctor would tell me Caden was behind in this and that. Now, the pediatrician doesn't even look at those milestone charts anymore as if to say there is no hope for Caden to ever make his way onto one of those "typical" charts.

I no longer compare Caden to "typical" children. I have gracefully accepted the fact that he is not nor will ever be "typical". Caden is special in more ways than I had ever imagined and I cherish the little gift I have been given.

This is not to say that I never get jealous of "typical" families or "typical" children. I often ask "Why?" and often think the dreaded "It's not fair". I question, scream and yell at God. I cry myself to sleep. I know I should not feel this way and I must embrace the gifts I've been given, but I am human and some days I just want run. And when I feel this way...I feel BAD.

My Downright UGLY...

When I started this blog I promised to be honest and speak from my heart. My heart hurts today. This is for no particular reason but I woke up, after a rough night of little sleep, feeling sad. Maybe it's the miserable weather or maybe hormones are going haywire but I ache today. Today is a day where I want to throw things, kick things and run away. Obviously none of that will take place, but it is how I feel... today.

So here is my downright UGLY.

I no longer get jealous and compare Caden to "typical" children. It is unrealistic to do so. Now I find myself comparing Caden to other children who have special needs and are fighting battles of their own. Caden began therapy with a group of children similar in age and similar in abilities. I see these children doing things now I only dream Caden could do and I get angry. Yes...angry and jealous of "special" children who have their own battles and have sacrificed so much. I hate myself for having these feelings but I look at my little boy and only wish for the miracles many of these children have been given; taking that first step, saying "mommy" for the first time, rolling over, sitting up and playing. I am even jealous of the mother's who's little one's now hit and bite them because at least it shows initiative to do something. I would do anything to have Caden hit me because he didn't want to do something or was angry at me.

Instead my sweet little boy just lies there. He watches the other children in therapy more than he works himself. It is as if he has given up on himself and tries to live through the lives of others. Sometimes I wonder if he is jealous too, but then I see him smile at the other children as if saying to them "Good job. Keep up the good work". 

How can he not be angry? How can he not resent those who can do so much more than him? Why do I have these horrible feelings and yet, my sweet angel does not? I know there are so many other little children out there that have it so much worse and I have seen it first hand when Caden is at the hospital and yet, I still cry as if no one out there has it worse than Caden; or better yet, worse than me.

These are open and honest feelings that I have at times. Caden is perfect to me despite his limitations but it would be a lie to say I didn't wish for more for him. I just want a small miracle; nothing impossible, just one little step forward. I do not expect to wake up one day to find Caden chasing his brother or having a conversation with his sister. No, all I ask is to wake up one day and find Caden moving somehow, someway across the floor; or sitting for a few minutes on his own; or simply saying "mommy" and giving me a hug. Simple wishes, simple miracles I have witnessed from other children like Caden. 

This is my UGLY; jealous, bitter and angry at those who struggle and have their own limitations. I am not proud of these feelings and I know most will not understand, many will be offended, but maybe a few will relate; maybe a few of you understand these emotions and I hope you know you are not alone.

Tomorrow is a new day and I hope to see the grass as green on my side as that of my neighbors. Maybe tomorrow his miracle will happen. This is the hope that keeps me going; the hope that I hold on to. Yes...tomorrow will be a wonderful day filled with magic, memories and moments because miracles do happen.

BENDY BOY...

For a larger picture click the following link
Why The Zebra? 

When you have as many diagnoses as Caden, you have a lot of Awareness Months. In March we "celebrated" Cerebral Palsy Awareness Month, we were a part of Rare Disease Day, in October we honor Dysautonomia Awareness Month, but May is a particularly important month for Caden. May is Ehlers-Danlos Awareness Month and we believe it is the Ehlers-Danlos, and the many symptoms of this genetic disorder, that have affected Caden's quality of life most.

For a larger picture click the following link
Symptoms of EDS

So what is Ehlers-Danlos, you may be asking? To be honest with you, until about three years ago I had never heard of it. If it hadn't been for a urologist who suggested that Caden's brother, Ethan, may have the disorder, we may have never even thought to look into it for Caden.

Ehlers-Danlos is a connective tissue disorder which affects about one out of every 5000 people. It genetically affects the collagen of the body. Collagen is the "glue" which holds the tissues of the body together. In fact, 80% of our body is made up of collagen, so if there is a defect in the make up of the collagen, a person's entire body is affected. Skin, muscle, ligaments, blood vessels and every other tissue of the body is weakened and defective because of EDS.

For a larger picture click the following link
Classifications of EDS

Caden has been diagnosed with Type III - Hypermobility

Three years ago, and after two failed inguinal hernia repairs for Caden's brother, Ethan, a urologist suggested that maybe Ethan had a connective tissue disorder which was not allowing the tissue to heal properly. We decided to take both boys, since they are identical twins, to a geneticist. Because the boys were less than a year old, she did not feel they had Ehlers-Danlos, but rather were flexible as most babies often are. Fortunately, the third attempt at Ethan's hernia repair was successful and because of this we put the notion of the boys having a connective tissue disorder out of our heads.

This was until about this time last year when we noticed Caden was regressing. Prior to his regression he had begun to take a few supported steps, had a small eight word slurred vocabulary and was beginning to army crawl; all very delayed milestones but being he has Cerebral Palsy, they were milestones nonetheless. What we didn't understand was why he was regressing and had all of a sudden, lost these skills. Cerebral Palsy is a non progressive disability and children with CP will make little or no progress but should never lose milestones gained. We began looking into what else could possibly be going on with Caden and that is when Ehlers-Danlos popped back up in the picture.

We presented this idea again last year to the geneticist who originally looked at the boys back in 2011. She was still not convinced Caden had a connective tissue disorder. Where it becomes difficult to diagnose the type of EDS we felt Caden has is that there is no genetic test for it and it is simply diagnosed based on family history and symptoms. One month later, we had Caden transferred to Cincinnati Children's Hospital where one of the best EDS geneticists in the country finally did diagnose Caden with Ehlers-Danlos Hypermobility. In fact, the letter she wrote states that she is without a doubt convinced he has EDS. EDS Hypermobility affects about one in every 10,000 to 15,000. Apparently I have EDS Hypermobility but am fortunate in that it has not dramatically affected my quality of life. But for Caden, it has. Caden has many symptoms of EDS including a blood disorder, capillary fragility, Postural Orthostatic Tachycardia Syndrome, Strabismus of the eyes, brittle bones, hypermobile joints, Neuropathy, easy bruising, Hypotonia, fragile skin, poor wound healing, Gastroparesis, Irritable Bowel Syndrome, Cranial Instability and Dysautonomia. (Click on any of the bold terms to better understand what they are.)

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EDS Facts

Now you would think we would have been devastated by this news, when in fact we were relieved. EDS explained many of these symptoms Caden was having and it put a name to an otherwise undiagnosed little boy. It tied most everything up into a "neat" little package. Of course, there is no cure for EDS and all one can really do is try to manage each of the symptoms, but at least we had some idea of where to start.

One year later and still many doctors are still not convinced Caden has EDS, but we are. EDS does not explain everything that is going on and we are still waiting to see what the genetic study shows, but we have begun the process of finding doctors who are experts in this rare disorder and we are working towards finding ways to best manage Caden's care.

For a larger picture click the following link
May is EDS Awareness Month

So to honor all those suffering from Ehlers-Danlos, I would like to dedicate this post to you. 

HIS GIFT TO ME...

For years I had wondered...what was my purpose in life? Many of us have pondered this ultimate question. For most it has taken years to find the answer; some will never know. For me, it took thirty seven years to understand why I had been placed on this great Earth. But for Caden, I believe, his purpose was determined the moment he entered the world. Caden, and so many other children like him, offer so many simple life lessons; ideals to live by. 

I have always considered myself a good person, caring, compassionate and thoughtful. I was raised with morals and was taught to lead by example. I have made mistakes, but have learned from them and allowed them to help me grow as a person.

However, since Caden, and the world he has allowed me to be a part of, have entered my life, I have learned more in three short years than I had in the thirty seven prior.

This is Caden's gift to me.

Caden has taught me...

1. To take each day as it comes...      

    

I have always been a dreamer; my life mapped out in my head. Everything had a plan. Because of this I was often disappointed when things did not work out as expected. Because of Caden, I have to live in the "now". I don't know where we will be tomorrow. It is unfair to visualize what life will look like for Caden down the road. Caden has his own plan and will work at his own pace. Today is what matters. The fact that I have my son with me TODAY; that I saw him smile and was able to hold and comfort him is what matters. Tomorrow will come, yesterday has happened, but we live in today and I have learned to embrace the "now". I am no longer disappointed because I don't have a big plan. I am HAPPY for today.

2. Perseverence, determination and to never, ever give up...

I have always been a determined person but in a very different direction. As with most, I would set goals and work towards meeting those goals. I rarely gave up. What has changed in me now is how I persevere. It is with an undaunted drive like none I had ever known I had. I will not allow anything to stand in the way of doing right by my son, or any of my children. The fight in me and the fact that my husband and I have never given up that fight has kept Caden alive. We do not allow those to tell us there is nothing that can be done. Where there is a will...there will always be a way and we will find it.

3. Confidence, strength and to never stop questioning...

I have always had confidence. However, I cared all too much about what others thought of me. I aimed to please even if it meant surrendering my ideals and what I knew was right. It sounds awful, but I don't care as much anymore about what people think about me. Caden's journey has showed me that accepting what others say and believing that others, such as doctors, know what is best for him, may not be what will help Caden. My husband and I know Caden best. He is OUR son. We are his voice, his advocates and we will never stop questioning those who feel they know what is best for him.

4. Patience, perspective and to let the "little things" go...

Those who know me know that I am not always the most patient person. I am the definition of a Type "A" personality; a perfectionist who expects everything to be a certain way. Caden has showed me that it is okay to let things go and that life is messy and often unorganized. Perfectionism is nothing more than a fictitious fantasy. I have more patience and try to put things into perspective. Caden will grow and develop at his own pace; the simplist little things he can do are still things HE CAN DO. Many parents hope, or downright expect, their children to be scholars, star athletes or talented musicians. All I ever want for my children is for them to be HAPPY.; for them to enjoy the little things in life; to smell the roses; to play and to use their creativity and imagination. My children do not need to be the smartest or the best. They are THEIR BEST and I would rather leave this Earth one day knowing I allowed them to laugh, get messy and explore the the world around them than expected them to over achieve and be something they're not. A child's laughter is greater than any skill or talent. HAPPY and hopefully HEALTHY is what truly matters most.

5. Kindness, forgiveness and generosity...

Caden's journey has not been easy and has affected us financially, spiritually, physically and emotionally. However, his journey has allowed me to meet so many wonderful and amazing people; people who, otherwise, may have never entered my life. Many are strangers whom I've never even met. His journey has also opened the eyes and hearts of so many of our family and friends. I believe that anyone who has become a part of Caden's life has grown a little from following his journey. The many people in our life have given so much to us in so many ways. It has shown me that the world is still a good place despite what the evening news may show and that there are more kind and moral people than not. I often tell people that if every person spent a day walking through a children's hospital, the world would be a much better place. These children open you up to a world of purity, innocence and hope beyond measure. Despite what these children endure, they smile, laugh and forgive. They FORGIVE. It is hard for me to forgive but I watch Caden smile up at the nurse who just stuck him repeatedly with a needle and I believe he forgives her. Caden has taught me that forgiveness allows us to move forward.

6. Faith, hope and that life is much bigger than me...

This may stir up some discussion but I have often questioned why God allowed this to happen to my son. I don't understand how God could allow a little boy like Caden to struggle every day and to miss out on so much of what a little boy should be doing. My faith has been tested and I want to believe, but it has been hard. Lately, Caden and so many of the little children that have entered my life, have given me hope and something to believe in. I don't know why what happened to Caden happened and I may never understand but what I do know is that life is bigger than what I know. I believe that there is more and that maybe everything does happen for a reason. I look into Caden's eyes and there is so much hope. Maybe miracles do happen. I believe in them. It is what gets me through each day. Without hope and the possibility of a miracle, I would be broken. Caden's spirit rises within him and lifts the spirits of those around him. He is more than just a little sick boy with special needs. He is a hero, a teacher, and an angel here on Earth.

7. To smile more and complain less...

I have to. Caden does. Many people don't understand how we do it; how we get up each morning, go about our day and continue to smile. It's simple. We are very lucky. Caden is a part of every day of our life and we are grateful for this. We don't know how much time we have with him. We pray for a lifetime but know it's not that simple. I value every day I have with him. I enjoy the DANCE. I appreciate the RIDE. Life is precious; every moment of it. It is a gift to treasure and one that can be taken from us at any time. Although Caden's journey has taken it's toll on all of us, I have never SMILED more in my life.

8. To listen and to truly see the world around me...

I have always considered myself to be compassionate but because of Caden I allow myself to become a part of so many more lives at a much deeper level. I listen to what people have to say, I value their ideas and have come to understand that no one person's life is any less important than another's. I do not truly know what goes on deep inside the life of another person and therefore I do not judge. Caden has allowed me to open my heart to others in ways I never knew possible. Caden has opened my eyes to a different world; a world I new existed but one I never truly understood. Caden's world is simple and pure. Children with special needs, children who are chronically ill and children with terminal illnesses define the true meaning of unconditional LOVE. 

9. The meaning of heroism...

Few are more heroic than a child fighting for his life. Caden has endured more in three years than most do in a lifetime. He does not allow setbacks to stop him. He is a warrior, a champion, a winner. I look up to him. He is my HERO and always will be.

Caden met one of America's hero's

10. To live life to the fullest without ever looking back...

It is hard not to wonder what might have been. What if I was able to keep my babies inside me for just a little bit longer? What if whatever caused the brain bleed hadn't happened? What if I had stayed with him and his brother and sister every minute while they were in the NICU? What if the doctors listened to me when I first knew something bigger was wrong? What if....? If I allowed myself to do this, I would not be able to enjoy the beautiful gifts I've been given. I have learned to believe I have done my very best. I have accepted what I can not change. I have forgiven myself for what I could have done better. Caden is the most amazing person I have ever known. He, along with his brother and sister, are the greatest thing I have ever been a part of. They are a gift I will treasure no matter how hard each day is. I am the luckiest person I know in that I have been touched so deeply by one little boy who has given me so much in such a short time. I am a better person because of Caden. I believe many people are better because of him. Caden has touched so many lives; has impacted so many people and has given so much to the world around him. His spirit shines within me, it guides my way. He is the light in my dark. He has brought back my faith and has allowed me to believe again. Yes...I am the luckiest person in the world because...

Caden loves me...

                                                                  

BACK TO "NORMAL"...

Finding the time to write has become more difficult over the past two weeks and that is a good thing. It means Caden is home and things are getting back to "normal". Although Caden's five week hospital stay was not as productive as we had hoped, we were able to eliminate possible diagnoses and are now in the process of reaching out to other doctors with fresh eyes and hopefully fresh ideas.

We will be traveling to north Jersey next week to meet with a highly regarded pediatric neurosurgeon out of Columbia-Presbyterian. Caden's neurosurgeon at CHOP has reached out to Dr. Anderson who seems anxious to meet our son. He is an elite spine and neck surgeon who can hopefully offer more insight into what may be causing Caden's declining health when upright. Our concern is that he may not be familiar with Caden's connective tissue disorder, Ehlers-Danlos, which is crucial in getting to the bottom of Caden's mysterious medical behaviors.

We are also in the process of reaching out to Dr. DiLorenzo, a top notch pediatric gastroenterologist out of Columbus, who is known through out the world as the doctor who has put a gastric pacemaker in a child as young as two. We do not know if Caden would be a candidate for a pacemaker and his G.I. at CHOP does not seem to think so, but we want to hear it from the horses mouth. If Dr. DiLorenzo does not feel he can help Caden with his motility/vomiting issues, then we will let it go; at least for now.

Our annual trip to the Cape May Zoo

Caden at the park

So how are things now that Caden is home? "Normal" I guess. Caden continues to vomit daily, is up most of the night and is happier and more active when laying flat. In other words, he is the same Caden who we brought to the hospital back in the beginning of March. As I always say when people ask how Caden is doing, "Caden is Caden".

That's not necessarily a bad thing. "Caden is Caden" simply means he's stable and for Caden, that's a good thing. Stable means we are not headed to the hospital. Stable means we can go about our everyday "normal". 

On the way to Nana and Pop's for Easter

Our "normal" is like most in that it is our routine. It's what works for us. It is the routine I find boring after doing it for months and the one I long for when Caden is in the hospital. It means lining up the kids clothes for school, making lunches, giving baths, the never ending potty training, filling prescriptions (the pharmacists at Walgreens know me all too well), taking the boys to therapy, driving the kids to school and going to work. In fact, I might have been the happiest person walking into work today because it was "normal". When I'm at work it means Caden is home... being Caden.

It feels good to be together again as a family. It is one of those things that when deep into our daily routine, I often take for granted. It is something that today, I cherish. I know that Caden has a very long road ahead of him but for now he is home, enjoying the world around him; taking in all he can. Today was a good day because today was "normal" and Caden was Caden.

The kids got fish for Easter. Caden named his Dusty.

ONE CHILD...ONE CHOICE

Today was not a good day. Honestly, most days lately haven't been all that good. But today, was a particularly bad day. Don't worry...Caden is okay, at least as okay as Caden has been. This was one of those days when we started thinking about choices again. Choices we are not ready to make. Choices we should never have to make.

You see, I can ask Emily what she wants for breakfast and she will tell me. Ethan will tell me he needs his Tigger because he is tired. Like most three year olds, they can tell us what they want, what they need and to some degree how they feel. At times they drive us crazy vocalizing their needs and more particularly their wants, but they can tell us. They tell us by whining, screaming, begging, hitting, biting and throwing tantrums. That's what they do and as much as it frustrates us, it is a gift that they are able to express themselves.  

Caden can not. Caden can not tell us what he needs, what he wants or even how he feels. Yes, he cries and laughs but even that is inconsistent because he has emotional lability which means he doesn't always have control over his emotions. Where Emily and Ethan can tell us the simplest things they need, my little boy who has to make the biggest quality of life decisions, can not. Those decisions are up to us. We have to make them for him.

Caden needs to go home. This much we know. This hospital stay has done more harm than good. The sick little boy we brought in almost five weeks ago is still sick. In fact, he's sicker with more damage to his already fragile little body. He was scheduled to have his Broviac removed today; the first step in getting home. Last night when the nurse came in to do vitals I noticed he felt warm. He had a fever and when a patient has a central line there is a risk that the fever is a sign there is a central line infection which can be very dangerous. They started him on I.V. antibiotics and Caden settled in for the night.

I was worried in the morning that they would delay the surgery due to his fever but the doctor assured me that the surgery was still going to take place and that his fever only justified the necessity of taking the central line out. Rounds ended and I sat waiting for the call to surgery.

And then I was told the surgery might not take place today. Apparently there was an emergency that would take up Interventional Radiology all day. Not only that but Caden's surgery was then delayed two days and would be scheduled for Thursday. Thursday? Seriously? I was hoping to get Caden home on Thursday.

So needless to say, the poor twenty some odd year old resident who drew the short straw and was forced to tell me the bad news got quite an earful from me. If you live in the Philadelphia vicinity you may have actually heard me. I lost it. I mean, full blown, all out lost it. 

Then this resident tried to "calm me down". She attempted this by saying "I know your frustrated but...". This must be what they teach residents to say to upset parents in How To Be A Doctor 101. I know this because I have heard this line over a hundred times. "Frustrated"...really? I get frustrated when I am stuck in traffic or when I can't get a stain out of clothing. No honey...I am NOT frustrated. This is NOT frustration I am feeling; it is DESPERATION. I am desperate for answers. I am desperate for hope. I am desperately trying to save my son.

You would think the resident would have been smart enough at this point to stop talking and either just listen or leave the room. Instead she decided to say "I understand how you feel." Do you? Do you have a sick child who no one can seem to help? Do you? No, my dear, you do NOT understand. I hope you never have to understand. Four years ago, I didn't understand either.

After I "calmed down", the doctor came in. She sat down and we talked for a while. She told me I was a wonderful advocate for my son. I told her I was not advocating for him, I was fighting for his life. I spoke honestly about how disappointed I was in the care my son was receiving and the medical profession itself. As tears poured down my face, I asked why no doctors ever really touch my son, hold him or try to get to know him. I wondered when they lost sight of why they became doctors in the first place. I questioned the purpose of this children's hospital. I felt that all that truly mattered were the numbers and statistics. My son and the others like him are not numbers, they are children. They are children who dream, who hope and who, despite the hell they go through, somehow, someway, find a reason to smile. When did they get lost by the system? She did not have any answers. 

I then asked, as I held my peacefully sleeping little boy, when would it be time for us to stop? When do we say he's had enough; been tortured enough? When was it time to just walk away? Matt and I talk about this all the time. Not because we want to but because we have to. We want Caden to decide when he wants to stop looking for answers and when it's time to just live the best life with what time he has. It is his life; his body; his spirit that has been through hell. This should be his choice. But we aren't sure if he's already tried to tell us or if he wants to keep fighting. 

I have been with him almost every hour of every day these past five weeks. I have watched him, searched his eyes, looking for an answer; looking for any sign. And I still don't know. 

We have a few more doctors to see. We will find a way to go to Ohio and Illinois to see some of the best doctors who specialize in what we feel is wrong with Caden. The fear in doing this is what do we do if they say there is nothing that can be done. Do we stop looking for answers? Or do we keep searching for something that may not exist?

My heart tells me that time is running out and that we need to allow Caden to smell the honeysuckle, feel the sand between his toes, listen to the peepers sing on a warm summer night and watch the sun set. We need to make his wishes come true. We need to be together as a family for as long as we are allowed to be. That quality of life far surpasses quantity. I truly believe that but what if I'm wrong. What if we stop looking and we miss an opportunity. We would never forgive ourselves.

That's when me head tells me that there must be an answer somewhere. If they could put a man on the moon forty-five years ago, they should be able to, at the very least, figure out what is wrong with our son. But my fear is that while we are searching for answers, Caden never knows what it is like to just live; to live without pain; to live without fear. And that he never gets to smell the honeysuckle, feel the sand, hear the peepers and watch the sun go down.

This doesn't mean we are giving up. We know we can't and we don't want to. We are still hanging on to the hope that someone, somewhere has an answer and a way to help our son. We will continue to search. But we must keep in mind the value of experiencing life and all its wonder. Caden is a three year old little boy and despite the fact that he can not always tell us how he feels, we know he does feel. We know that there is so much for him to see; so much left for him to experience. And we don't want him to never have the opportunity to be a part of it.

And therefore...

Sometimes...

There is beauty in walking away...