MARCH: In Like A Lion, Out like a Unicorn???

Thinking back on this month, I ask myself, "How did we get here?".  I looked through pictures trying to establish a timeline as to the events which took place this month and am disheartened by the transition my little boy has taken.

I knew I wanted to write tonight; to update everyone on Caden's progress or lack thereof, but I wasn't sure which approach to take. That was until his nurse today asked me what brought Caden to the hospital in the first place and I honestly couldn't remember.

I know that during the first week of March, Caden was having a significant increase in myoclonic jerks and his therapist at school thought he may have had a seizure.  Caden also had an increase in vomiting and we noticed he seemed to be more lethargic.

Caden had an outpatient appointment with his neurologist who suggested we admit Caden for a 24 hour EEG.  Yes, you read that right...a 24 hour EEG.  It made sense and we were concerned.  We were hoping to rule out the possibility of these jerks being seizures which fortunately they were not.

Caden when he was first admitted

During his EEG

                                                     
And then I don't know what happened???

Next thing I know he's being transferred from the neurology floor to his "usual" floor (Integrated Care) which manages the kids who are medically complex and have more doctors than stuffed animals.  From there, we went in to the typical "Let's try to figure this medical mystery kid out by poking and prodding him until we get answers" mode.  Now don't get me wrong, Matt and I want answers too, but somehow I feel we got lost in the shuffle.

Caden was brought into surgery on May 13th for an endoscopy, muscle biopsy, shunt tie off and Botox of his salivary glands.  The endoscopy came back "normal" for the most part, as did the muscle biopsy.  The Botox was simply done to reduce saliva production to curb some of Caden's gagging.  The shunt tie off was in hopes that some of his declining health issues were due to the shunt over draining. We were convinced that this was why Caden preferred to hang upside down and was catatonic when upright.  This had to be it being the top pediatric neurosurgeons in the country felt this was the case.

After his first surgery

Almost immediately following surgery, Caden began screaming in pain like I had never heard before.  When he wasn't screaming in pain, he was sleeping.  Something wasn't right and he was brought to Intensive Care. On Monday, March 17th, he was back in surgery to have the shunt externalized to check the pressure. Sure enough, his pressures were through the roof and he clearly needed the shunt.  From a diagnostic standpoint, this ruled out the shunt being the reason for Cadens positional preference, but it did not give us an answer. He also had a Broviac placed so he could begin TPN hoping to give him more calories to improve his overall growth. 

Waiting for surgery number two

Three days later, on March 20th, he was back in the operating room to have the shunt unclamped. After this surgery, Caden was showing some improvement but was still neurologically unstable and was no better off than when he first was admitted.  Medications were added or tweaked and he was sent back over to Integrated Care.  A few more studies and tests were done which all came back as "normal", "within normal limits" or "unremarkable". I took the courses to learn how to administer TPN at home and we were beginning the discharge process.

After surgery number three

That was until the morning before he was scheduled to be discharged. When I woke up I noticed an eraser size hole on Caden's chest where his neurosurgeon unclamped the distal end of the shunt.  Doctors looked at it and agreed there was cause for concern because the shunt drain was visible and there was a high risk for infection.  Instead of packing to go home, I was packing to go back to Intensive Care. That same day, Thursday, March 27th, Caden was again in surgery and his shunt was being externalized to ensure there was no infection.  

After surgery number four

Fortunately there was no infection, so today, March 31st, Caden was back in surgery to have the shunt re-internalized.  I hope you have been able to keep up because even as I write this I am asking his nurse for dates as to what happened when. Remember....in my very first post I told you it would be an adventure. Caden has not disappointed his followers.  I wish he had. 

I look at him now and I see a totally different child. At least physically. The little boy that came in on the 7th had a few scars from his past seven surgeries.  The boy I see today has eight new incisions from the five surgeries in nineteen days, one of which was opened four times. Although he is just as beautiful as always, his body has been battered and beaten this stay and I worry his determination has as well.

After surgery number five (notice the physical transition)

We hope this is all for now, but we know it is not.  We are pushing to have the Broviac removed before he goes home because we are concerned for infection due to his poor wound healing.  This will require another visit from anesthesiology but no surgery.  

His neurosurgeon is on board with our theory of cranial settling due to his connective tissue disorder.  He is concerned that it will be difficult to convince other doctors but he is willing to reach out to those who specialize in children with Ehlers-Danlos.  We will pursue his care elsewhere as we are beginning to feel we've exhausted all options here at CHOP.  The journey is far from over and the mystery of my little medical unicorn continues.

I am only hoping April brings him home safe, surrounded by his loving family and friends.  I pray he is stable and recovers with little pain and discomfort.  I wish to find that certain someone who will take a special interest in Caden and will hold our hands and guide us as we continue to search for answers. I ask that April finds peace for all the children who suffer and endure through more than anyone can imagine. They, too, have a journey.

Despite a very discouraging and difficult month there were some bright moments and I thought it would be nice to end the month on a positive note.  So here are the happy moments for March:

Caden got his own Facebook page (over 700 likes so far)
Click to LIKE Caden's page

We began a pay it forward fundraiser to help other families with medically ill children
Click to purchase TEAM CADEN apparel and support our cause

Caden's journey was embraced and shared by so many around the world
(over 28,000 page views)

Emily and Ethan even helped with the housework (they insisted)

We celebrated Cerebral Palsy Awareness Month

We were together as a family for an hour on Sunday, March 30th
(first time since March 6th)

Caden never stopped smiling

I AM HIS VOICE

I sit in the PICU as Caden sleeps.  This is after watching him scream in pain due to his fourth surgery in less than three weeks. All I can think is how no one understands his wants and needs because he can not speak.

I wrote this poem for those who are their child's voice.  

I AM HIS VOICE

I search his eyes to find his thoughts;

To understand his needs. 

I  am his voice.

I have no choice.

My son depends on me.

I watch him scream to know his pain;

To understand his fears.

I am his voice.

I have no choice.
My son, he needs me here.

A child trapped within himself;

A body broke and weak.
I am his voice.
I have no choice.
My son, he can not speak.

Although he does not say a word,
I know his hopes and dreams.
I am his voice.
This is my choice.
My son is the world to me.

CAUSE CADEN CAN...HELP OTHERS

Today is an important day for Caden and the over 17 million other people in the world living with Cerebral Palsy. March 25th is National Cerebral Palsy Awareness Day and my son, Caden, has the most severe form of the brain disorder.  

Caden and his siblings made last years CP Family Network poster

There are many types of Cerebral Palsy which range from just one limb affected to the entire body. There are also many degrees of severity ranging from mild to severe. Caden has been diagnosed with Spastic Quadriplegic Cerebral Palsy which affects all four limbs. Because of the severity of his C.P. he can not walk, talk, roll, sit on his own or feed himself. He has many other medical needs which stem from the damage to his brain which caused his cerebral palsy. Despite the fact that his body does not work as it should, Caden is well aware of the world around him and all the wonderful people in it who have prayed and supported him upon his journey.

Although things have not been easy for Caden and our family, we have persevered thanks to the many generous people and organizations who have helped us both spiritually and financially along this difficult journey. If it had not been for efforts of others, we may have lost our home and would have been separated as a family for over a month last year. Organizations have given Caden equipment and provided services for Caden and his siblings. Individuals have helped us pay bills when I have been out of work and in the hospital caring for Caden.

Despite the daily struggles our family faces, we have been blessed and because of this, we would like to "pay it forward" to help other families with chronically ill, medically needy children. Today we are kicking off our campaign:

"CAUSE CADEN CAN...HELP OTHERS"

Caden's cousins and friend wearing their TEAM CADEN t-shirts

Below is the link to purchase Team Caden apparel. Included with each purchase is a Cause Caden Can/Team Caden silicone support bracelet. All profits will go to help other families who have been affected by accumulating bills due to their child's medical needs.  

To purchase Team Caden merchandise or to make a donation please click on the following link:

TEAM CADEN FUNDRAISER

We hope to one day start a non profit, charitable organization in Caden's name but for now this is Caden's way of saying "Thank you".  

Again, to all of you who have prayed and supported our family, we are forever grateful. Please consider donating to Caden's cause and becoming a part of TEAM CADEN.

My co-workers showing their support

SIBLING SACRIFICE

After six hours of waiting for Caden to be brought back to the O.R. for his third surgery in one week, I left the pre-op area, headed towards the elevators to grab a bite to eat and got the phone call.  This call was for one of my other children.  This one was for Ethan.

As one son was being put under anesthesia, another was coughing to the point of making himself sick.  His preschool teacher, with hesitation in her voice knowing the current situation I was already in, called to tell me that Ethan was sick and needed to be picked up from school.  I was two hours away, alone, scared and officially at my breaking point.

I called my husband who took Ethan to the doctors where he was diagnosed with bronchitis.  "Oh, please...a silly little cold" is what I initially thought because compared with what Caden was going through, bronchitis in many ways is just a little cold.  But to Ethan, who was born with compromised lungs worse than Caden's, bronchitis could mean an eventual hospitalization.  It was then that a wave of mother's guilt so fierce, so enormous and so powerful, all encompassed me.  My family had become TRIAGE.

Triage, for those of you who do not vacation in hospitals, is the assignment of degrees of urgency to wounds or illnesses to decide the order of treatment of a large number of patients or casualties (Google).  I triaged my children.  Caden's needs were more important.  And they were, however it still hurt that I couldn't be there for Ethan.  I needed to be two places at once and I couldn't be.

And then there's the other one; the healthy one; what's her name?  Ah yes, Emily.  Mommy's little rock star or what I've sadly come to know as my "normal".  She is the healthiest and is right on track developmentally for her age. Because of this when she became sick for so long last winter, I blew it off as a cold that wouldn't go away.  I took her to the doctor, but never panicked or worried. She was Emily and Emily doesn't get sick like my boys. It ended up she had RSV (a severe respiratory viral infection) and required hospitalization.  She, too, needs me.

So today I write about them.  The other two.  The one's, who in many ways, sacrifice the most.  Where most take family vacations, Emily and Ethan came out to Ohio when Caden was transferred to Cincinnati Children's Hospital last spring. We took them places, but mostly they hung out at the hospital with their brother. They never once complained and I believe it was they who had the greatest impact on Caden's improving health.

They sacrifice belonging to programs, such as gymnastics, swim lessons and soccer because it hurts me that Caden can not be a part of them too. And because financially we can not afford it due to the amount of work I miss so that I can be by Caden's side when he's hospitalized.

When we do get to go places, such as the zoo, it is different for Emily and Ethan.  Everything we do runs around Caden's schedule; his feeds, his medications, his treatments.  They don't seem to have much say in "the journey" yet they are as much a part of it as Caden.

But what they sacrifice the most is time with their family, especially time with me.  Emily and Ethan are often passed around from care giver to care giver when Caden is in the hospital. They are unknowingly woken up to or picked up from school by someone other than us. They have adapted and amaze me every day at their ability to "go with the flow". They, too, are only three years old, but I feel, like Caden, they have been through more than most ten times their age.

I couldn't be there today to comfort Ethan.  I know he needed me but I wonder if I needed him more. Because of Caden's hospitalizations I have missed Emily crawling for the first time, the kids first birthday, Easter at home, saying goodbye to my dog, and countless things I can not remember because I wasn't there to see them.  I know Emily and Ethan won't remember what they have sacrificed and I know we work hard to make it up to them, but I will never forget what they have given to help their brother.

I had a lot of mother's guilt today, so when Caden was sleeping I went down to the gift shop and bought them seventy-five dollars worth of crap. To them, it will be enough.  To me, it will never replace what I miss most; my children and my family, home, together.

MARCH MADNESS

I know what you're thinking. Why is she writing about basketball on a blog about her son? Well, I have no idea what's going on in the world of college basketball but I can tell you about the "MADNESS" going on in the world of Caden.

As you read in my last post "One Day At A Time", Caden has been hospitalized for his usual, neurological and G.I. issues.  He had surgery last Thursday and then the madness began (not that the past 3 and a half years with Caden and his brother and sister haven't been madness as well).

The night after the procedures Caden did nothing but sleep, wake up and scream in high pitched shrills for a few minutes and then crash back to sleep. This occurred every twenty minutes to a half hour over the next three days. All he did was sleep, wake up and scream, and sleep. His Neurosurgeon ordered three CT Scans which all showed no change. This prompted them to tell me his issues were due to the anesthesia and not the shunt tie off. I insisted otherwise. After much arguing with various neurosurgery residents and fellows, I convinced the department to tap Caden's shunt to see if his pressure was building up. And guess what...I was right. Almost instantly after they drew 20 cc's of fluid off his brain, he felt better, woke up and was alert for the first time in days.

Neurosurgery agreed that his pressure was increasing and they needed to do somewhat emergent surgery to externalize his shunt and measure his intracranial pressure (ICP).  Monday morning, surgeons went in and externalized his shunt. While under anesthesia, they also placed the Broviac so he could begin TPN for nutrition and calories.

Shortly after surgery, we saw improvement in Caden's pain levels, alertness and overall neurological status. Today, Caden spent half the day upright and half the day with his head lower than his legs to see how his pressure changes in various positions. This was done because the biggest medical mystery with Caden is the fact that despite having hydrocephalus and severe reflux, he prefers to lay flat or hang upside down. Doctors from the three best children's hospitals in the country (Philadelphia, Boston and Cincinnati) do not understand why Caden prefers these positions.

Here's a video from last year when he was at Cincinnati Children's Hospital.  It's a bit long but shows how different he is when laying flat as opposed to upright (please ignore my annoying voice:)

Youtube video: Caden's Changing Moods

I have my theory and although I am not a doctor, I spend more time with Caden and have done far more research in trying to solve the "mystery" of Caden. I have presented my theory to many doctors with no luck. Doctors disagree with my ideas because it does not make sense to be happening to a three year old boy. Yet, these are the same doctors that say they have never seen a boy like Caden.  Doesn't it make sense that if these brilliant doctors can not find a reason for my son's bizarre positional preferences, to assume it may be something slightly out of the ordinary? Isn't this why he's been coined a "medical unicorn"?

So here is my theory...

Caden has been diagnosed with a connective tissue disorder called Ehlers-Danlos Hypermobility.  This disorder affects the collagen (glue that basically holds the body together). Many people, mostly adults, with EDS have symptoms similar to Caden's due to changes in posturing. When upright, many people with EDS have brain stem crowding or various other fancy medical terms I will not bore you with. Those that are symptomatic from these issues feel relief from the symptoms when laying down. The cervical issues which present with EDS usually only occur in adults who have suffered from EDS much of their life. It is rarely if ever seen on a three year old.

The picture below shows how the angle changes in someone with EDS 

when they are upright. Notice the little bone pressing on the brain stem.

                  

Upright-Health.com

But Caden is not like every other three year old.  He had a brain injury at birth which caused a bleed causing brain damage. This damage to his brain left him with very low muscle tone.  Now if you add the ligament laxity and connective tissue defects from EDS and the low muscle tone from his brain injury, wouldn't it be possible when Caden is upright for his posturing to be so poor and weak that it may cause the top of his spine to move up compressing the brain stem and causing blood and fluid restriction to the brain. Compression on the brain stem causes something called dysautonomia which presents with many of the symptoms Caden has (irregular/fast heart rate, irregular blood pressure, temperature regulating issues, G.I. issues, etc.), particularly when he is upright.

I know this is a lot to wrap your brain around and I have included some links if you want to play "Dr. House" and investigate further:

Medical Zebras

Autonomic Events and Crisis

Please feel free to ask any questions in the comments. Believe me, I am not a doctor. I just play one in real life.

ONE DAY AT A TIME

I have always been a dreamer.  I had my entire life mapped out. Everything had a plan.  And then Caden came along.  When the triplets were little I kept a calendar of every doctors appointment, therapy session and event.  I made lists and used more post-it notes in one day than most people use in a month.  Then I realized that my plans were always being scratched off, changed or erased from my calendar.  My to do lists were never done.  It was then that I realized life was messy, unorganized and things don't always work out as planned.

Caden made sure of that.  His many illnesses, medical complications and hospitalizations made it impossible for me to plan anything.  For the first time in my life I had to take it one day at a time.  And this is now how I live. People will call me and ask what I'm doing a month from now and I find that question so very overwhelming. A month from now?  I don't even know where I will be tomorrow, let alone a month from now.

Tonight, I was supposed to be at a wedding, but instead I am writing this from the pediatric intensive care unit at the Children's Hospital of Philadelphia.  Caden had other plans for my Friday night.  I'm okay with that.  His needs come first.  But, believe me, I would rather be almost anywhere but here.

I miss my family.  My heart aches every night as I say goodnight to Emily and Ethan over the phone.  Their sweet little voices telling me they are being good and that they love me tear me up inside.  I have missed so much of their lives to tend to Caden's needs. They are as invested in all of this as we are and they sacrifice as much if not more than we do.  They are amazing little superstars.

Caden, as like most of his hospitalizations, has his own plan.  We were supposed to go home today but instead have moved to a higher level of care.  Nothing is ever simple with Caden.  Nothing is ever as it should be.

Caden was admitted to the Children's Hospital of Philadelphia on Friday, March 7th after having over one hundred seizure like myoclonic episodes. His neurologist did a twenty-four hour video EEG which showed irregular brain activity but the episodes were not seizures.  Caden has a habit of testing "normal" despite having symptoms.  To quote Caden's long time private duty nurse, "Normal is a dryer setting."

After the EEG showed no seizures, Caden was transferred to the Integrated Care Service to address his neurological decline and increased feeding intolerance.  This is the floor Caden spends most of his time on because they manage all of Caden's many medical issues. His various doctors decided to get a bunch of "little" procedures done while in patient.  This took place yesterday.  He had his VP shunt clamped off. This was done because Caden prefers to lay flat or even hang upside down.  This is quite the opposite of what you would expect for a boy with hydrocephalus and reflux.  Clamping the shunt would prevent it from over draining if this is why he prefers being supine.  Caden also had a muscle biopsy done to test for any type of muscle disease which may explain his physical regression.  An endoscopy was performed to make sure his stomach and esophagus were not damaged and his salivary glands were Botoxed to reduce saliva production in hopes of reducing his gagging and vomiting.

Three hours later he was out of surgery and I was taken to post-op.  He was not doing well. Usually he comes right out of anesthesia and is rather alert.  He usually only has minimal amounts of pain that can easily be suppressed with Tylenol.  This time was different.  He was in a lot of pain, was having trouble breathing on his own and was vomiting.  He went back to his room on nasal canula to assist his breathing, he remained hooked up to I.V. fluids because he was throwing up all of his food and he was given Tylenol for the pain.

By the evening, he was weened off the oxygen and was breathing well on his own but his pain had increased along with the vomiting.  He slept all day, appeared very weak and lethargic, and only woke to scream louder than he ever has before due to intense pain.  This happened all night and throughout the day today.  He was hard to wake all day, continued to vomit and had extreme episodes of pain that seemed to be coming from his head.  His neurosurgeon ordered a CT Scan which of course came back "normal" or at least unchanged but they moved him to the PICU anyway so he could be closely monitored.  They performed a shunt tap which was a bit off and they may repeat it tomorrow under sedation to get a better understanding of what is going on.  Caden is still on I.V. fluids only and hasn't had any nutrition or food in two days.  He has lost a pound since being admitted.

Because of his inability to gain weight and grow, his G.I. doctor wants to put him on TPN (Total Parental Nutrition). This means that all of his nutrients would be delivered intravenously and he would be hooked up to a pump for at least twelve hours a day.  Matt and I have been trying to avoid this.  Caden was on TPN for a couple of months last year while hospitalized and had more problems than I have time to discuss.  Now they are talking about sending him home on this.  There are so many risks but we have no other option at this point. He is getting weaker and not growing and we must consider his quality of life. He will be placed with a Broviac on Monday.  This is a port in his chest which goes directly to a central vein.

This is how our son will eat over the next few months.  It involves a lot of care and many precautions must be taken when hooking him up.  There is a high risk for infection and clotting.  I have been dreading this for so long but it has now become necessary to keep him alive.

Caden will remain hospitalized for at least another week. This is assuming things run smooth and as I said before, Caden doesn't believe in having a plan.  We will continue to take it one day at a time.  Caden will work hard to get healthy as he is tough and never gives up.

A Little Place Called "SPECIAL"

I grew up in a place called "Typical".  It was a nice place, with typical neighborhoods, typical homes and for the most part, typical people.  My family was typical.  My friends were typical.  And life was good.  Now this is not to say it was perfect.  Oh no...that's a completely different place.  "Perfect" is a place most have only dreamed of and very few, if any, have ever been.  Unlike in "Perfect", we had our fair share of problems.  But our problems were usually typical.

Most of our friends and family still live in "Typical".  But, not us.  When our son was born, we moved to a place called "Special".  It is a much smaller place with a very different lifestyle from that of "Typical". Growing up I had heard of this place but knew few who lived there.  It was a place where others lived.  A place where I would never have to go.  A place I now call home.

A mother's day in "Typical" looks much different from one in "Special".  We don't prep dinner, we prep medications, feeding bags and dressing change supplies.  We don't run our kids to soccer, dance class or a friends house.  Our kids are run to therapies, doctors appointments and more therapies.  We don't vacation in Disney or on an island, but travel to various hospitals around the country in search of answers.  Most of our visitors are home nurses or case managers. Most deliveries are medical or feeding supplies.  Most phone calls are to doctors, insurance companies, lawyers and therapists, not friends.  And our "social" time often takes place venting to and seeking advice from other parents while sitting in waiting rooms or at therapy.

Now this is not to say that I don't ever visit "Typical".  Most of my friends are there and it is the escape I often need.  Because of such loving family and friends, I still feel I belong some times, but it feels different. It no longer feels like home.

I can't say I always love living in "Special". I honestly wish no one had to live here. But it has become my home, my son's home and my families home and I have learned to embrace it.  I have developed friendships with some of the most amazing people I have ever met.  I am stronger, wiser and kinder because I live here. This place has defined who I am and has made me a better person.  I can no longer imagine living anywhere else.  And no matter how rough the days may be or how much weight I carry on my shoulders I am forever grateful that I don't live in a place called "Grief".

LITTLE BOY WONDER

When we first learned of Caden's brain injury we were devastated. When we were told he was at risk for developing cerebral palsy, we were heart broken.  But when we were told that cerebral palsy is non progressive and that Caden's abilities would not regress, we were relieved.  Matt and I believed that with dedication and hard work, Caden would develop and reach milestones, although at his own pace.

Caden's development was slow; much slower than anticipated.  His many hospitalizations and illnesses created set backs we were not anticipating. However, a year and a half ago, when Caden was two, we began to see some progress.  By age two and a half, Caden had good head control, was able to stand and sit for short periods of time, was taking a few steps with help and had an eight word vocabulary (car, bug, hug, go, again, etc.).  His physical therapist believed he would be walking with a gait trainer by age four.  We had hope.  We believed.

Caden is three and a half today and he can no longer hold his head up, sit, stand, take steps and can only say "yeah" and "hi".  He went from being very spastic, requiring Botox injections and medication to relax his muscles, to very floppy with little tone.  When we put him in the sitting position, he literally folds in half with his head between his feet.

Caden also once had a very strong personality.  If he didn't like something he would let you know by crying and screaming.  If we left him alone on the floor he would scream until we came to get him.  Now, he just lies there, motionless and unaffected.

This is not to say that he never expresses emotion but his emotions are erratic and without stimulation.  He will laugh for hours for no apparent reason and then suddenly start hysterically crying.  It's as if the wiring in his brain has gone haywire. Something is clearly wrong but no one, including doctors, know why.

This week in particular, Caden's physical and neurological well being has taken a nose dive.  Some medication changes have been made but none that would send him spinning out of control, yet on Friday Caden had over a hundred myoclonic jerks (sudden uncontrollable jerking motion that could indicate seizure activity).  This is more than he has ever had in one day, so his Neurologist at the Children's Hospital of Philadelphia (CHOP) did an emergency admission so that Caden could have an EEG done to check for seizures.  As with most tests and studies done on Caden, his EEG was normal.  Well, actually it was far from normal, but it did not show any seizures.  His EEG showed many irregularities.  His Neurologist wants to put him on seizure medication to see if it can help regulate some of his brain patterns.

Caden has also been vomiting more and has had an increase in intestinal and abdominal pain over the past month.  His G.I. wants to start him on Reglan which has many concerning side effects.  At this point, we have not started either medication because the Neurologist and G.I. doctor are arguing over which drug is more important to try first.

So here we are, settled in for another hospital stay (number eleven, I think).  Caden will be here through the week as they continue to try to figure out what is going on with him.  This is a game we have played for the past year and we don't expect an answer will come easy.  During this stay, doctors are looking in to the genetic possibilities, along with any neuromuscular or mitochondrial type disorder.  For the first time, doctors are agreeing with us that Caden has more than just cerebral palsy.

The plan for the week includes the following:

*Exome genetic testing (first one ever to be done at CHOP) which will check for any genetic defects or mutations.

*EMG (Electromyography) which will check for any muscular disorder.

*Salivagram which will check to see if he is producing too much saliva which is causing him to gag and vomit.

*Endoscopy which will check for any damage to his stomach and esophagus

*Shunt revision surgery where they will clamp his shunt to see if he improves neurologically due to his shunt possibly overdraining.

And of course a ton of lab work.

Caden's surgery is scheduled for Thursday and if all goes well (Caden has a history of making a short visit into a very long one) we will be home Friday.

I often ask anyone I come across (FedEx guy, pizza delivery guy, etc.) for any ideas as to what's going on with my son.  Doctors can not figure it out but who's to say a "regular" person can't be the hero who diagnoses my son.  Any information that anyone gives me, I investigate.  I know that a diagnoses does not mean a cure, but it is hard to manage his care and find support when we have no answers.  Here is a list of Caden's symptoms, both chronic and acute.  Please feel free to comment with any ideas and please share this post.  One of the reasons I started this blog was in hopes to find someone out there who would be willing to take a special interest in helping my son.

Caden's symptoms:

*Enlarged ventricles/hydrocephalus

*Brainstem crowding

*Atlantoaxial instability

*Cortical Visual Impairment

*Strabismus

*Capillary fragility

*Petechia

*High blood pressure

*Tachycardia

*Vomiting

*Intestinal pain

*Constipation

*GERD

*Swallowing issues

*Myoclonic jerks

*Clonus

*Severe chronic hiccups

*Hyperreflexia

*Adducted thumbs

*Foot deformity

*Talipes Valgus foot deformity

*Teeth grinding

*Excess body hair

*Hypotonia

*Bradykinesia

*Barely moves or responds when upright but more vocal and active when laying flat or upside down

*Ligamentous_laxity

*Emotional lability

*Spontaneous laughter

*Very high pain tolerance

*Sleep disturbance

*Low tolerance of heat

*Increased sweating

*Has lost weight over past year (only 25 pounds, same as many one year olds)

*Has not grown in a year (34 1/2 inches, four inches shorter than his identical twin brother)

I am overjoyed by the amount of support we have received thus far.  I've had so many more page views than I had ever imagined.  Thank you for being a part of Caden's journey and coming along for the ride.

THE CHASE

I have written about the endless hallway I ran down for so long as I struggled with infertility.  I reached the door and arrived at the other side. Lately, I feel I am running down a new hallway.  A very different one from the other; one much more terrifying.

This hallway has many twists and turns.  It is much darker, foggier and confusing.  I am running faster than I ever have before.  Running, holding my little, weak, frightened boy.  I'm holding on to him with every bit of strength I can  muster.  We are running from something and for a long time didn't know what. But today I know.  What is chasing my son is his own mortality.  Death is slowly catching up to him and I run to keep him safe from this "monster".

This time, I can not rest.  I can not take a break or catch my breath for fear that this "monster" will catch him. I fear I may stumble or get lost, but I must keep going, holding ever so tightly to my son.  My arms are tired from his limp body, my shoulders hurt from carrying the weight of the world.  I no longer feel my legs or even understand what I am doing, but I keep going.

This hallway has many doors at first but as I run the doors become more sparse.  These doors represent all of the doctors and therapists my son has seen.  At times, we have been able to take refuge behind one of these doors.  We have a moment of hope and possibility.  But then we close our eyes for a brief moment only to find ourselves back in the hall being chased with the door locked behind us.  There are less doors now, less doctors left to see, but I stop at each door and hope that just one of them will let us in and keep Caden safe.  These doors have words on them like HOPE, PROMISE, POSSIBILITIES, MIRACLES, ANSWERS, but they are all locked.  I struggle to open each one.  Why won't they open?  Why won't they let my son in?  I am willing to stay outside and let the "monster" chase me.  Just let him in.

I fear this "monster" is catching up to him.  I fear the day there are no more doors to try.  I am tired, he is weak but we will keep running.  With every last bit of me, I will keep him safe, protect him and fight.  I will not let this "monster" defeat him.  Somewhere, there is that one last door that is open wide, welcoming my son.  A place with hope where miracles can happen.