NO GOOD CHOICE...

Why is it when it comes to Caden's care there are never any good options? Just once I would love to hear a doctor say "Would you like the magic little pill that will make this all go away?" or "I can make your wish come true and take away his suffering." 

Now I know this is not realistic, but I am tired of having to consider options where any choice made has so many negative implications.

I was visiting a friend at the Children's Hospital of Philadelphia who's daughter is going through yet another round of chemo. She, too, said that there are no good choices. Her options, like mine, all ran the risk of doing significant harm in their effort to help.

So what choices were we given? Well...Caden met with the top general/thoracic surgeon at CHOP regarding his slipped Nissen and hiatal hernia. This is a surgeon who's care I have been trying to get Caden under for over a year and it is sad that it took his Nissen to go bad to get him to take an interest in my son. Nonetheless, Caden is now under his care.

He said that based on Caden's studies, the Nissen has slipped and he has a moderate hiatal hernia. The problem with this is that it will get worse and something needs to be done. What concerns him is that Caden is so very medically fragile. As I was explaining Caden's extensive medical history, the surgeon just shook his head in disbelief. He too, as so many doctors have before him, said that he has never seen a child like Caden.

So choice number one...do nothing. The surgeon did not recommend this as the hernia would get worse and permanent damage could be done.

Choice number two...have the Nissen reversed. At first we liked this option as we have never been happy with the Nissen. It was done to stop Caden from vomiting and it never worked. One month after the surgery, Caden began vomiting again and has continued to do so for the past two years. But then the surgeon explained that if we have the Nissen reversed, Caden would have to be fed via J-tube. This would mean no more blenderized diet, no food in his stomach and he would have to go back to continuous pump feeds. I never liked when he was J-tube fed. It is so unnatural and can cause damage to the intestines. It would be like taking ten steps backward and that is the last thing I want to do as Caden has taken very few steps forward over the past few years.

Last option and the one the surgeon said he would do if it were him...have the Nissen reversed and have a Thal done. This is very extensive surgery which could last over four hours. A Thal is when they take a flap from the stomache and fold up against the esophagus to reduce reflux. He said it would not stop Caden from vomiting but will help keep him from damaging his esophagus. On top of performing a Thal the doctor would stitch his hiatus to hopefully avoid another hiatal hernia.

We have chosen option number three but it comes with many risks. The surgeon said that he feels Caden is too weak for the surgery at this time. To quote him "Caden's growth chart sucks". He wants to see Caden gain weight before performing this risky surgery. He is also concerned with Caden's connective tissue disorder. He feels this could make surgery riskier in that Caden's tissues are fragile and can tear easily. The surgery can usually be done laproscopically but if he encounters problems he may need to "open Caden up" and this could be especially dangerous for a medically fragile child with a connective tissue disorder.

Lastly, the surgeon is concerned with Caden's heart. We find this interesting because we can't seem to find a cardiologist who feels the same way. Caden has an appointment in December with a cardiologist at CHOP who specializes in some of the cardiac issues we feel Caden has but we don't know if Caden can wait that long for surgery. Caden has severe Dysautonomia which has affected his overall well being. His heart races, he needs to lay flat all the time, his blood pressure is either too low or too high, he does not feel pain and he has trouble regulating his temperature. The surgeon feels these issues should be addressed before surgery.

So here we are having to make a decision with no good choice to make. Anything we decide to do involves many risks. It is our job as Caden's parents to do what we think is best but we are not even sure what that is anymore. I regret so many choices we have made in the past and I fear we may end up doing the same here. 

As it seems we will be moving forward with having the surgery in the near future, it is scary to think that this will be Caden's thirteenth surgery in just over three years. His little, fragile body already looks like it has fought many battles. There is not much room left for more scars. How much more can he endure? How much more does he have to endure? 

I choose the granted wish.

I choose the magic pill. 

I choose to sacrifice myself for him. 

I choose the miracle. 

CHEERS, FEARS and TEARS...

Many of my readers have asked if I have taken a "break" from writing and I simply answer "Writing is my break". Life has gotten in the way and I have not been able to do what allows me the opportunity to escape in my head and share my thoughts. Yes, writing is my "break" from reality, my hobby, my "me" time and I have missed it, oh, so much.

Now that I am back at work, I have a lunch break again. As any stay at home Mom knows, there are no lunch breaks when you have children, especially very demanding, clingy (yet adorable) Pre-Schoolers. Most days this summer I felt accomplished if I did a load of laundry and felt like super mom if I actually found time to fold it.

So as much as I miss being with my children all day, every day, I do enjoy my time at work. It allows me to talk to other grown-ups, have a career, earn some money, listen to my music in the car and actually eat lunch without shoveling food into my mouth.

It has been an interesting summer with many highs and many lows. All in all, it was enjoyable. We took our first vacation as a family that did not involve other people traveling with us, a nurse or doctors visits. In June, the five of us went to Baltimore's Inner Harbor and enjoyed an Orioles game (or Oreo's as Emily and Ethan call them), the aquarium and the ferry back to New Jersey.

CHEERS:

Caden received a few new pieces of equipment this summer which has been both beneficial therapeutically and socially. In July he got his Upsee which allows him to walk while strapped to an adult (it's much like when you stepped on your Dad's feet to dance as a child). Although he does not like being strapped into it, once in, he smiles ear to ear and loves "chasing" his siblings and "kicking" a ball.

Just a couple of weeks ago, he received his floor sitter which allows him to sit up while being nearer to the ground than he is in his KidKart. Because of this, he can be closer to Emily and Ethan when they are playing on the floor.

For Caden's fourth birthday, he received a special needs bouncy chair which, similar to the ones for babies, moves with any movement made by him. It's a little big for him now but he does enjoy the bouncing motion.

Caden has been doing well in his therapies. His one nurse can even get Caden to take about thirty steps in his gait trainer. His other nurse has him moving forward a bit while on his belly. He is using his hands more and playing more than I have ever seen before. 

Caden started his new school and after working out some glitches, things seem to be going well. They moved him to a higher functioning class which we are hoping pushes him to want to do things. Caden is a hard student to place because cognitively and socially he is more typical but developmentally he is about where a four or five month old would be. Despite this, I do feel he will be more successful in his new class.

Caden began therapeutic horse back riding last week. This is something we have wanted to do for a long time but hospital stays and various other set backs have not allowed. He seems to enjoy it although we had to order him a helmet because no helmet would fit his tiny head.

When I last wrote, I spoke of a few tests and studies Caden was having done. Surprise... surprise... both his sleep study and glucose breath test came back "normal". Again, according to Caden's test results, he should be an Olympic athelete.

The "big" event of the summer was our trip to Nationwide Children's Hospital in Columbus, Ohio. We were thoroughly impressed with the hospital, it's design and architecture, the level of care and the physicians and staff. We truly felt like Caden was their only patient. Before going out, Dr. Moussa and her team (G.I.) had scheduled one test and a couple of appointments. Once we saw her, she scheduled two more tests and an appointment with the dietician which all took place in the two days we were at the hospital. Caden had a gastric emptying study (normal), an anal manometry (for the most part...normal) and an upper G.I. (NOT NORMAL).

What we learned from this trip is that Caden's Nissen Fundoplication has slipped and he has hiatal hernia (see FEARS below). We also tweeked his diet a bit to balance nutrients but for the most part his blenderized diet was "approved" and they seemed impressed by my ability to create such a well balanced one. Dr. Moussa started him back on Periactin (to expand the stomache) and Zantac (for reflux). He also began a new medication called Bentyl (for irritable bowel).

I am not a hundred percent sure, but I think Bentyl might be the greatest medication ever. Now it could be just a "honeymoon" period but now that Caden has started the Bentyl his vomiting has been significantly reduced, he is sleeping much better and seems to be in less pain. The past month we have seen a wonderful version of our son; one we wish could last but are slowly beginning to see the "honeymoon" come to an end.

FEARS:

I mentioned above the results of Caden's upper G.I. study in Columbus. So what does this mean? Well, according to Dr. Moussa, Caden needs surgery to fix the slipped Nissen and repair the hernia. The big question is what do we do? His G.I. at CHOP agrees the Nissen has slipped but it seems he does not feel we should do anything about it because Caden's symptoms have not gotten worse. Dr. Moussa feels the herniated part of his stomach may be putting pressure on Caden's lungs and heart and although surgery is not eminent, we should not wait too long.

We will be heading to CHOP to meet with the "best" general surgeon there. This is not the one who did the initial Nissen but the one who comes highly recommended. We are no longer settling for "sloppy seconds" and only want our son to see the very best. What we need to decide is whether or not to have surgery and if so, do we redo the Nissen or have it reversed.

Because Caden has a connective tissue disorder (which we did not know about at the time of the Nissen in 2012), surgeries may often fail and hernias can be quite common. Our fear if we redo the Nissen is that it will slip again. Our fear if we reverse the Nissen is that Caden will begin vomitng as much as he did back before the Nissen and if we do nothing, what could the hernia do to his heart. These are all concerns we must discuss with the surgeon.

On top of this, Caden's tonsils have been very swollen and red as of late. Back in the spring of 2013 he had an adenoidectomy but they kept his tonsils in. I am now trying to get him in to see E.N.T. at CHOP to discuss whether or not his tonsils need to come out. He is also going to need another eye muscle surgery in the near future. This could possibly mean another three surgeries in the next couple of months which would put him at fifteen surgeries at four years old.

TEARS:

Caden has a new symptom. He does not respond typically to pain. What this means is that Caden can bump his head and he will often laugh or not respond at all. Where this becomes concerning is that he has begun becoming self abusive. Although we do not think he does it on purpose, he is scratching his face and banging his head. This requires him to have constant supervision. We have to watch that his brother or sister do not accidentally hurt him. We have found him face down in his mattress at night. He does not let us know when something hurts which even new born babies can do to tell others they are in pain. This is often a symptom of dysautonomia and one I am very concerned about.

My children celebrated their fourth birthday in August. I am watching them grow and come into their own. This is a wonderfully, beautiful thing but something that makes me sad. Not so much because my children are getting older but because they are growing apart in the sense that, although they were all born at the same time, the three of them are worlds apart from each other.

Emily is a typical four year old. She is independent, mature and sweet. Now don't get me wrong, she has her moments, but we are very lucky to have such an amazing daughter. Because she is doing so well, I often expect too much from her and am afraid she is going to grow up too fast. I wish I had more time for just the two of us, and although I know she understands, I can see how much she loves (and needs) those "just about her" moments.

Ethan has had a rough summer. He has a lot of anxiety and fears. He is not sleeping at night and wakes up screaming for Mommy. He does not trust that I will be there and I can understand why. I have spent many nights in the hospital with Caden away from him and his sister. He has his own share of "special needs" and  I have not been there enough for him in the past. Ethan is my "two year old" who needs a lot of TLC. Despite this, he has the most amazing sense of humor and can be the sweetest boy.

As for Caden... he is my "baby". I remember when I first learned Caden may have C.P. and I went to the internet to find advice and support. One mother wrote that the one "good" thing about having a child with C.P. is that you get to hold onto your "baby" longer. Caden is my cuddler. He doesn't run from me, hit me, scream at me or demand me to do things. What makes him happiest is being held. Holding Caden is my "happy place". Although I don't get to do it enough, when he is in my arms I feel complete; I feel safe; I feel more love than I ever thought possible. 

It is hard to watch the others grow up while Caden, for the most part, "stands" still. Where the three of them were once on a level playing field, Caden has been left behind to sit on the "bench" watching the other two. Caden is part of everything we do. We take him everywhere. I fight to allow people and places to let him do things. But the world is not built around kids like Caden. All too often, Caden is left to watch the others and because I know there is a very well aware little boy inside his broken body, it breaks my heart.

INDEPENDENCE DAY

As the school year has ended and summer has arrived, I have found it very difficult to find the time (and the energy) to write. As any parent knows, there are no lunch breaks when home with your children. I rest my head at night wondering where the day went all the while waiting for Caden to wake up and the overnight  pain nightmare to begin.

In my last post I wrote that I was "freeing" Caden of the diet set by doctors and trying one of my own. Although the diet has not resulted in what I had hoped, it has given me a sense of empowerment over my son's care. It has allowed me to be Mom rather than a nurse following doctors orders.

Caden has been on the Mom developed blenderized diet for a little less than two weeks. It is a high calorie, gluten, whey protein and lactose free diet consisting of a variety of organic and natural foods (including some from my very own garden). I tasted it myself and find it tastes like a peanut butter and coconut shake (not bad considering it looks pretty gross). 

The one benefit we have seen from the diet is that it seems to leave his stomach much faster than his previous diet. The advantage to this is we can give him his feeds in shorter intervals allowing his last feed to be done around 6 pm rather than 8 pm. This means he is not going to bed on a full stomach. In theory this would suggest a reduction in vomiting and overnight pain, but that has not been the case.

Caden continues to vomit despite having less residual when vented. His overnight pain continues requiring us to vent him and often give him an additional suppository. There have been days in the past week where he has not slept at all (last night included). He is literally up ALL night and somehow is able to function the next day. This is not healthy and continues to be very concerning.

We will continue the diet as it has not made things worse and at least I know my son is receiving real food. Although it takes a while to prepare and insurance doesn't cover any of it, it gives me the opportunity to "cook" for my son. Something I have never been able to do before. It is also the first time Caden has received all real ingredients in his entire life. It has given us a sense of independence from the "straight out of the textbook" medical professionals who feel formula is the only way to go with tube fed kids.

Last week Caden had several appointments at the Children's Hospital of Philadelphia. He saw neurology who shared the same ongoing concern as us in that Caden does not sleep. He ordered a sleep study to see if we can figure out why he isn't sleeping. Knowing our luck, the night of the study will be the one night he sleeps beautifully and like all his tests, it will come back "normal". His neurologist also increased the dose of his one pain medication at night hoping it would help him sleep and reduce some of the pain. We have seen a slight improvement in Caden's sleep some nights but most nights it's the same old Caden.

Caden also had a glucose breath test done last week to see if they can figure out why he is having so much intestinal pain. Of course we have not heard from his doctor and I know I should call, but we are assuming like every other test it, too, will come back "normal".

It looks like we are heading out to Columbus, Ohio the beginning of August to see the motility team (under the direction of Dr. DiLorenzo) at Nationwide Children's Hospital. They plan on doing an extensive gastric emptying study and then we will meet with one of the G.I.'s. We have hope that because they are willing to see Caden, they may feel there is something that can be done. However, at the same time, we know this is our last resort and I fear they may say there is nothing they can do and then we watch Caden vomit and suffer in pain every day of his life. Despite knowing this possibility, however, I remain optimistic.

The biggest appointment we had last week was with the PACT team (Patient Advocacy and Care Team). Their role is to help families cope, come to difficult medical decisions about their child and assist in improving the overall quality of life of the child.

Matt and I spoke openly and honestly to the doctor and social worker. We shared our fears, frustrations and concerns. And then we talked about what Matt and I have known but have never really discussed with others. Quality of life versus quantity of life.

You see, when we first learned of Caden's brain injury we feared he may never walk or talk "normal" but assumed he would walk and talk and go on to live a somewhat typical, long life. The life expectancy of a person with Cerebral Palsy is much the same as a non disabled person. What often shortens the life of someone with C.P. are the other things that the brain injury may cause (seizures, cardiac and/or respiratory problems). But Caden seemed perfectly healthy at one time. Other than a little reflux, he appeared to be a boy with C.P. and one who his therapist said would most likely be walking by age four.

Today, we see things differently. We don't think about whether or not Caden will ever walk or talk. We don't discuss alternatives to playing soccer. No...we talk about how to keep him free of pain; how to help him sleep through the night; how to keep him from vomiting. Our dream for our son has changed from expecting parents who hoped for a "perfectly" healthy little boy who would grow up to be a typical adult, to parents who hoped their son would walk with a walker and talk (although slurred) to parents who are hoping their little boy sees his fifth birthday. 

This is what we talked about with the PACT team. We discussed when we should stop looking for answers; not cures but answers as to what is going on and why our little boy has regressed. The doctor suggested we emphasize with the motility team at Nationwide the importance of their opinion in that we are considering it a last hope (at least for now). We talked about when we stop; when we just keep Caden home and keep him as comfortable as possible.

We are not there yet. Honestly, I am a long way from there. I am not ready to dope my child up to hide all symptoms so the truth can not be found. But at the same time, I am tired of watching him suffer. Now please understand, Caden is happy more than he is in pain. His vomiting has become a way of life for him and for whatever reason he still seems to function on very little sleep. This is why we will keep searching for answers. Caden will let us know when pain management is more important than the truth but for now he continues to fight. I know he does not want to be so doped up he can not function or be aware of what's going on. 

There's a perfect little boy inside his very broken body; a boy who has so much to offer; so much to give. We will continue to fight but have also come to understand that we may not have him with us as long as we would like. Therefore, we will give him all we can. We will open his eyes to the wonders of the world. We will do our very best to make all of his dreams and wishes come true. We will work to give him a sense of freedom where Caden can do anything he wants despite his limitations. He will have his Independence Day. This we promise.

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.

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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.

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May is EDS Awareness Month

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