Not So |"Different" An Important Lesson In Our Journey

I get emails all the time from parents with children newly diagnosed with PHACE Syndrome, or hemangiomas and one of the most common questions is "how do you cope with your child looking so different"

This of course is not an easy question to answer because as parents of children with facial differences we go through a range of emotions once the shock settles in, and it is a constantly changing thing.

It was never the focus of our concern because Quinn had so many other medical and developmental issues that were more pressing, but that is not to say that we did not have our fears as well.

Growing up with a brother who was developmentally delayed I quickly learned that "ignorance breeds idiocy" People are afraid or "turned off" but what they don't know or don't understand. It was this lesson that made me want to help people understand "what's wrong with Quinn"

This wasn't an easy decision but it seemed to be the right one for us, to address the issue head on. As a result when we published Quinn's birth announcement we decided to add a picture and a description of his disorder. I also included a link to his original carepage in case anyone wanted to learn about PHACE Syndrome. I didn’t really expect what happened next. I didn't expect over 1,000 people from around the world to begin following his story. I didn't expect the newspaper to call and want to do a story on Quinn.

I am going somewhere with this I promise.

The initial curiosity I know was attached to his appearance. As countless doctors in this city have told us “nothing like this has ever been seen here” When I look back on pictures of him now I see it. It (his face) was something.

That something helped us to decide that regardless of how different he looked and the many difficult situations we would face, we were not going to hide him or treat him any different than we had our older children.

We of course have had some insane situations with rude people over the years. They have gotten better but different as time has gone on. In other ways they have changed. When a waitress or cashier tries to get Quinn to talk they are often puzzled as to why he does not speak (or in some cases he tells them off in his own little way when they invade his personal space) When people see him in the daylight his scars are very obvious and this often results in puzzled looks. In a few cases we have even been asked “Is that the Mighty Quinn?”

One thing that often troubles parents of children with hemangiomas, is how will my child succeed in entering school without being targeted as different? How will the other children accept my child if he looks different? Parents worry that their child will be emotionally scarred for life.

I can tell you now from experience that some of the things we are most afraid of surrounding our children's differences, are the things that enable their acceptance by their peers. In Quinn's case his differences even seemed to lead to a “rock star type of treatment” In kid you not.

Children have evolved over the years, and they are certainly more accepting of children with differences than they were in the past. Gone are the days when a group of kids would chase a child home taunting them about their brother....and I HATE this word....”being a retard”
Because of the inclusion of children with special needs, their peers have come to not only accept them, but to embrace them and want to protect them. Fortunately this is true of Quinn's transition to school.

Many of older kids in Quinn's school were exposed to him early on and have seen his transition over the past 4 years. Many of them prayed for him when he was very sick. Over the years the younger kids would meet him and ask the inevitable “what happened to his face” We always met that with a simple answer, to which most kids would reply “oh..okay” and then never ask again.

The kids also know he has Autism, and that while he does not have any negative or aggressive behaviours, he does not like people “in his face” If people get too loud he will plug his ears and briefly scream. And...he is a man of few words, but we are working on that.

There is a lot about Quinn that is overtly different. His face, his social skills, his development and his size. He is a lot smaller than his peers. Given all of these things you would think...traditionally, that he would be an easy target for bullying, but it is not the case.

I applaud Quinn's teacher for preparing the class for his arrival (He began Nov 1st) She gave the kids an idea of what to expect and we are told that they were excited to meet him.

I have to tell you I have never met such an amazing group of kids, and in saying that I include not only the kids in his class, but the entire school. Of course being his mom I have a bias but I forgot about his ability to charm people with that smile of his. (and to think he has issues with social skills)

On his second day of school I walked him into the schoolyard with his two big brothers and as we entered the yard I heard a sort of chanting “Quinn, Quinn, there's Quinn, hi Quinn!” coming from a small group of students at the front of the school. They were obviously happy to see him and in that moment every fear I ever had of how he would be accepted just disappeared. When we got to the back of the yard close to 20 students of all ages began to approach (I held my breath because I was afraid that it would upset him...but I was wrong, he was grinning ear to ear) There was more “Hi Quinn, are you going to come everyday....yeah Quinn is here....he is SO cute...to even I love you Quinn”

Thank God I had sunglasses on because tears were just pouring out of my eyes. (Being pregnant with twins and having twice the hormones doesn't help either.) I looked at my son as all the craziness he had been through flashed through my mind and I realized that these kids had done more than just accept him. Whatever differences they may perceive him to have, or not have, they have embraced him and welcomed him as one of their own. They show no scorn, or dislike. They like him for who he is and they see what we have seen all along, that while he may have had an extraordinary journey so far in life, he is simply a beautiful little boy named Quinn. One of their own, a peer, a friend and someone who is “not so different” after all.

I hope this gives some hope to all of the parents out there who are concerned about how their child will be accepted once they start school because I know it is a very real fear, be it facial differences, developmental, physical, medical etc. On paper Quinn is VERY different but in reality, in school, he is just one of the class. Too much is focused on disabilities, something we as parents concentrate more on, but the reality is that other children are more able to see what adults do not, a special child's “abilities” Sure they may appear different for all of about 30 seconds but young children are able to see past that and see what is more important, the child behind what is on paper, or what is on their face.

Ready Or Not......

Some of you may have heard through the grapevine that Quinn was starting school this fall. Because he is four is is old enough for junior kindergarten (We start them early in Ontario)

Originally we were going to wait a year to enrol Quinny in school as JK was up until June of last year, only going to be a half day program, as had been for so many years. We were instead going to enroll him in full day preschool so that he would get the most out of being in a structured full day program to prepare him for JK. Well, that was the plan until they announced at the school that they were going to have full day JK in September. We had to rethink what was best for him and decided, along with a truckload of therapists and school board members that we would begin the process in September, of enrolling him in school with his peers.

Traditionally this is a pretty lengthy process but I have to give some major kudos to all those involved who expedited this process because Quinn starts next Monday!

We are very fortunate that Quinn's special needs are very well documented as he has been followed by over 20 pediatric medical specialists and countless therapists,consultants and advocates. Sitting down with this large group of people, many of whom have been with Quinn since he was a month old, was a godsend. I cannot imagine how terrifying this process would be for parents who do not have the level of support that we have had doing this.

I had a difficult time, like many parents, when my older two sons started school for the first time. Letting go is never easy, even if it is only for a few hours a day. I cried when my oldest Tyler started school, because he was my first and we were in the middle of a crisis with Quinn. I just was not ready to let him go. When my middle guy Ryan started school the next year I was a disaster. He was only 2 when Quinn was born and being only 3.5 when he started he was still a baby to me and he was going through so much with Quinn's situation and our constant absences to attend to Quinn's medical needs. I felt like I missed way too much.

I always thought I would be that mom who volunteered at the school, or joined the PTA. I wanted to be very involved in their school lives, but it was not meant to be, at least not then.

When you have a child whose needs were and are as great as Quinn's, the definition of balance takes on a whole new meaning. In the beginning it was all about his medical needs, making sure he survived that first year and a half. To look back on it now, I am stunned by how we made it through. A year of chemo, two air ambulance rides to Toronto,an average of three trips to Toronto a month (8 hours each way), countless ER visits,deadly infections,emergency surgeries and hospital admissions. Somebody had to stay awake all night with him to make sure he did not die while having a seizure while he slept, so there was little sleep to be had.

Then things started to calm down a bit and we thought we were beginning to see the light at the end of the tunnel. At 15 months of age his medical issues began to stabilize. We began to cautiously look to the future.

Until it all fell apart within a matter of three days. In the period of three days our son went from a happy, bubbly, engaging social little boy, to a child who looked like him but did not react, have any emotions and stopped interacting with his family. The last time I received a kiss from my son was when he was 15 months old. Those three days of course turned out to be a very serious and sudden developmental regression, into the world of Autism.

And so our lives spiraled out of control, in a different but equally horrifying way. In some ways I would go so far as to say it was worse because we essentially lost the little boy we had grown to love so much. I would of course never change my little man for anything in the world but, it was an experience beyond what I am capable of conveying.

Fast forward to the present day, Quinn will be 4.5 years old on the day he starts school. To say that he has come a long way, well that is an understatement. Medically he is nothing short of a miracle and he is doing well. We don't know what the future holds but we are hoping he has had "his share"

PHACE Syndrome for Quinn, has meant so many things. His case is considered to be severe because of the many complications it has produced. There is a good chance that medically he will be okay, that the issues that were once life threatening, are no longer a looming threat. Many have asked if he is cured. The answer to that is no.

The many issues my son has related to PHACE have produced some very severe and lifelong consequences, that will always be with him and will be the biggest hurdles in his life. He can have therapy until hell freezes over, but the truth of the matter is that he will have many challenges to overcome. (and overcome many he will, that I am sure of)

I am not one to dwell on the past because our lives shape who we are, the good,the bad and the ugly and my son's experiences have helped shape him into who he is, a very brave, lovable and strong little boy, worthy of the nickname "Mighty Quinn" While I do not like to look back, I still cannot help but remember a time, not that long ago when I had great fears about what PHACE Syndrome would mean for my son.

Sitting at his bedside in the Neuro ICU after he was diagnosed with Stroke and PHACE Syndrome (and the many issues he has related to PHACE) I had many fears, many of them medical but many of them were about how "all this" would affect his development.

Like my son, my brother also had a stroke, his was a birth. Like Quinn it damaged a significant part of his brain. I was terrified. I have always been one of my brother's biggest fan's but the thought of my son living through any of what he had, was horrible. My brother's stroke was the cause of his global developmental/cognitive disability. To say that his life and that of my amazing parent's has been a struggle, well that is an understatement.

Being faced with what, incredibly was a similar situation with my own child, I just could not stop thinking about how it would all turn out. Would my child also be developmentally delayed? I asked this question, along with the fear I had about Autism, on the day my son was diagnosed. The doctor asked why on earth I would ask about Autism and my answer was that having worked with children with Autism for many years, I was aware of the link between abnormalities of the cerebellum and link to Autism. I'm pretty sure the man thought I was a bit neurotic.

So we know where the Autism thing went right?

The question of how all of "that" affected or would affect Quinn's development,was what would remain for quite some time.

Assessing a child who went through so much trauma medically early on, is difficult. Assessing one who has Autism is challenging. Assessing one who is non-verbal can be almost impossible.

With so many variables (different medical issues, a stroke, a separate brain anomaly, history or seizures, chemo etc etc) putting all the pieces together was going to be a challenge.

In September the day came when we were to finally get an idea of what this all had meant for Quinn. What had affected what,and how much. We were warned that what results were received were only a baseline measurement as the numerous variables, especially Quinn's traumatic medical history, would make it impossible to assess a severity on his developmental delay.

There was no doubt going into this that there would be one found. It's very common with Autism, especially with a child who is non-verbal, but it is also very common with children who have had strokes or have brain anomalies.

Going into it I knew what the results would be. I hoped to hell I would be wrong, but I knew my sweet little peanut and I was hoping the 7 years of psych and child development education would help give me a clue. I knew what they would say, but I still hoped somewhere in my mind and heart that I was wrong.

So as you know, PHACE led to a diagnosis of Autism for my little man. It also led to a diagnosis of global developmental disability....severity unspecified. The unspecified part gives us hope because they will not assign any kind of permanency to his latest diagnosis just yet, because he has shown in the past how well he jumps over the hurdles placed before him. This is something I truly believe in because, well that is Quinn. We never stop believing in him and his abilities. It is those abilities and what we know he will overcome that is most important, not what "disabilities: he is said to have on paper.

A lot of people think that Autism is a dirty little secret, and society has shaped parents to fear telling people that their child has Autism. That saddens me because I am immensely proud of every aspect of my son, who yes has Autism. I am not afraid to say the word or wear the ribbon. It is a very very real issue.

The same goes for the fact that my son has a developmental disability. That too, for many people carries a stigma that still exists. One that my own family has fought for years with my brother and we will likely fight for all of Quinn's life, but it too is not a dirty little secret.

I could not be prouder of Quinn and the fact that his verbal skills measure under age 1 and his overall cognitive level is closer to age 2 than it is to age 4. SO WHAT. He is an amazing child, a child who is special, but not for what his needs are, for WHO he is.

I still cannot believe that he will be starting school on Monday. I am not ready for this at all. I don't feel like there has been enough time, but we need to do what is best for him. I'm terrified but I know he will thrive. He will have one on one support all day long. He will have his therapies, his own program and he will have fun.

I remember when we thought that our only issue would be the fact that our son "looks" different when he starts school. In writing this I just realized that that whole issue has not even crossed my mind because it is essentially the least of our concerns. Sure the kids are going to stare on that first day, but then then will get over it as quickly as it started and they will never ask again. He will just be Quinn.

I'm probably going to have a nervous breakdown on Monday but at the same time I am sure it will be a reminder of how far Quinn has come. It was not that long ago that we were praying he would survive a number of things. Survive he did through the grace of God and the prayers of thousands of friends, family members and strangers from all over the world.

This marks a new chapter in Quinn's life. An exciting yet scary one, but one that is sure to bring more growth and many more miracles. This milestone will be a big one for sure for him but I am also sure that he will bring something very special to that school and to that group of children he will spend the next 10 years with in that building.

Ready or not......here we go!

(Please pass the Kleenex!)

Quinn's First 4 Years...A Recap

Okay,I know I have been slacking with this blog BIG TIME. I have heard you and I am finally doing an update on little man, after this recap.

Quinn is currently 4 years and 3 months of age.

For those of you new to the Mighty Quinn's journey he was born with a rare disorder called PHACE Syndrome,part of which included a very large segmental hemangioma (a vascular tumour)on both the outside and inside of his right face and head. He also has/had a number of internal ones including one in his brain.

Shortly after birth Quinn began having violent seizures which led to an airlift to a major children's hospital in Southern Ontario (far from our home)and the diagnosis of prenatal stroke, likely caused by two congenital heart defects called atrial septal defects(holes)which before birth allowed a blood clot to travel to his brain destroying a large portion of his left parietal lobe.

From Quinn's Journey With PHACE Syndrome,Hemangiomas, Autism and Stroke

From Quinn's Journey With PHACE Syndrome,Hemangiomas, Autism and Stroke

From Quinn's Journey With PHACE Syndrome,Hemangiomas, Autism and Stroke

From Quinn's Journey With PHACE Syndrome,Hemangiomas, Autism and Stroke

From Quinn's Journey With PHACE Syndrome,Hemangiomas, Autism and Stroke

From OUR GILDED BUTTERFLY AND THE STORY OF HOW HE LEARNED TO FLY

From SURGERY PICS

From New York

From Quinn's Journey With PHACE Syndrome,Hemangiomas, Autism and Stroke

From Quinn's Journey With PHACE Syndrome,Hemangiomas, Autism and Stroke

The hemangioma(s) began an aggressive period of growth at about 6 weeks of age, putting strain on his heart and threatened vital functions such as eyesight,hearing and feeding. At 4 weeks of age Quinn completely lost his right upper lip halfway to his nose due to tissue breakdown (ulceration)caused by the rapid tumour growth. Over the year that followed he continued to have these extremely painful ulcerations causing life threatening infections (MRSA),constant hospitalizations and led to significant scarring and disfigurement.

Quinn was treated with high dose steroids and twice weekly chemotherapy beginning at 2 months of age. At 6 months the steroid treatment was discontinued due to an adverse side effect on his heart (since resolved)

During Quinn's year long treatment with chemotherapy (Vincristine) he faced several serious complications including a life threatening break of his PICC line (central line, IV implanted surgically in his arm, into the neck and the end of which sat just inside his heart.

At 6 months of age that line broke (very rare) and part of the tubing traveled into his heart and lung. This complication was extremely serious and he was airlifted to a children's hospital 8 hours south of us for emergency surgery.We are thankful for the quick thinking of an amazing surgeon who was able to remove this from his heart via his femoral artery instead of having to "open him up"

Much of Quinn's first 15 months of life focused on his very complicated hemangioma. Treatment for him was complicated and consisted of much trial and error as doctors struggled greatly to get this potentially lethal vascular anomaly under control.

While many people have questioned why we did not seek reconstructive care for our child early on, the answer is simple. We wanted him to survive. His facial differences were not an issue for us. Keeping him alive was paramount and we knew that once his health was "stable" (by age 1 the child had narrowly cheated death 4 times)

We were comforted by the fact that during the peak of our son's health issues he was extremely healthy, happy and outgoing. He was seemingly unaffected by the extreme nature of his entrance into this world. Despite a stroke, a brain malformation,brain tumor and highly toxic medications his development was progressing forward and we were looking to the future.

We started looking into beginning treatments/surgeries to reconstruct the damage the hemangioma had done to his face but ran into numerous road blocks trying to get these services for him here in Ontario.

When a very concerning drug was suggested for Quinn we decided to take Quinn to a specialist in the US for another opinion.This drug had very serious possible side effects which were even more concerning for a child who already had a very serious and complicated neurological history.At this point he had been on chemotherapy for one year and we were concerned because he was having some potentially serious side effects. We wanted him off toxic drugs and hoped for an alternative.

The doctor we saw in NYC, one of the best in the world and deals daily with conditions like Quinn's...was the first to give us real hope. While doctors we are eternally grateful for, saved his life, they were unable to give us the hope we needed that Quinn would one day be able to walk outside of his house and not be stared at or called a monster (a whole other story,a very long one of 4 years of comments, stares and accusations).

This doctor was confident that Quinn would respond to laser therapy and down the road,surgical intervention. We left his office elated....until we realized that these services are not generally available in most of Canada. When these types of intervention are implemented it is often in later childhood. Earlier intervention typically does not exist. Why, again that is a complicated question and while I have a lot to say on that topic, I will leave it at that for now. To sum it up, we just do not have the doctors who specialize in the care of children's vascular anomalies, surgical wise, ones that do this on a daily basis. Children either have to live with significant deformities hoping one day surgeons will decide to help, or they can go to the US. Going to the US has a big issue attached,cost. It is rare to have a provincial government fund these surgeries so families are often forced to pay out of pocket and most do not have this kind of money. Our certainly does not.

We decided that we would first attempt to get services for our son in Canada. Knowing past history and the high rate of failure I decided I was going to do whatever I could for my son no matter who hated me by the time we were finished.

We were fortunate to have the support of my sons pediatric dermatologist who agreed to refer him for laser surgery to help kick start the regression of his hemangioma in hopes that he would be able to begin the process of reconstruction in time to begin school. Not having proper function of the eyelid area and lip (affecting everything from speech to eating) we hoped for the best.

Nobody thought that the laser would work, including the surgeon who performed it. Nobody that is but that amazing doctor in the US who took one look at him and said, get him laser, it will help him. We took those words, words from one of the best and decided not to take no for an answer. I pleaded with the surgeon to attempt 3 treatments and she agreed because she truly wanted it to work.

And work it did, and fast. Quinn blew everyone away with how fast he responded after struggling so hard for so long just to get the damn thing under control, suddenly the tide changed and things were looking up for him. With the regression of the tumor beginning, he was on the road to recovery for the tumor. Other health issues abounded but this was a very big beginning. Yes it is true it began to "look better" but this was just never what really mattered. It mattered to many people but not to us.

When Quinn was 15 months of age, I think I actually began to exhale. His hemangioma was no longer life threatening, there had been no more strokes,the holes in his heart were closing and his seizures were happening with less frequency. His health was still not great and there was far to go but there was so much reason for hope and celebration. Most of all the child was so incredibly happy and engaging.

That all changed one day in October 2007. While his seizures for the most part had been nocturnal in nature, he had a very odd one while sitting on my lap at a therapy session. That morning had started off extremely rough, with him screaming out of character. I was beside myself with worry over what the possible cause was.

He was admitted to the hospital after 3 straight days of this screaming and holding his head and was diagnosed with migraines, another lovely side effect of PHACE and hemangiomas (though still being researched)

We took him home on Halloween and began to see a very different Quinn. He stopped smiling, stopped making eye contact, stopped making any sounds (except screaming) and the utterly beautiful twinkle he had had in his eyes since birth, completely disappeared.

I was terrified and was screaming at anyone who would listen (well those who would not as well) that something was very very wrong. This was not the child we knew. Our child was happy despite living through over a year of hell. He was happy and engaging. This child disappeared an was replaced with one who had a blank look in his eyes and did not respond to ANYTHING.

Not long after this began I said it out loud to a professional. "You don't think this is Autism do you" I had seen it so many times in my work with children with Autism and it was beginning to eat at me. I brought it up to a number of his specialists and they all said the same. "No way" this child cannot have gone through all that he has only to develop Autism suddenly, just when it looked like things were looking up for him. I wanted to believe this more than anything, but I couldn't. Who knows a child more than his mother or father?

On Christmas Day 2007 Quinn sat in front of his presents staring into space. his body was there but he was not. I looked at him trying to get his attention and watched at his began to flap his hands in a way that to me screamed Autism. It was a stereotypical self stimulating repetitive behaviour. And then later that day he walked over to the closet in the hall and proceeded to open and close the door for an hour and a half. My heart broke that day because knew 100% that my child had had an Autistic regression. We had lost our child for all intensive purposes. We had fought to keep him alive and won but now another disorder was stealing his personality.

My worst fears were confirmed 2 weeks later at a series of visits with his specialists. I pleaded with them in tears to tell me I was wrong, that it was not Autism and that there was some reason why this was happening, that there was a solution. Anything but Autism. Having worked intensively with children with Autism for many years it was truly one of my biggest fears. These amazing doctors who had fought to keep my child alive and well were visibly shaken as we discussed Quinn's future.

Quinn was referred for an Autism assessment and we were horrified to find out it would take up to 2 years to have him seen. Given the rate of regression he was having I was mortified and was determined to make someone listen and not wait. I became obsessed with getting him help and with the assistance of one amazing doctor who backed me up I manged to get him an assessment within 2 months. Thank God.

In the two months prior to his Autism assessment, in the spring of 2008 we had a couple of important appointments with a pediatric plastic surgeon. by this time he had had 3 laser treatments and his hemangioma was about 90% regressed on the outside and was shrinking rapidly on the inside. It was what we had hoped for because we had been told previously that was needed in order to make the decision to do the reconstructive surgery.

We went into an important appointment that spring hopeful that we would get him the help we needed. The doctor that day referred him to an associate he thought might be better equipped to deal with the complex nature of his lip reconstruction. We had never met this specialist but tried to remain hopeful.

The day of the appointment I was a mess. I just had a horrible nagging feeling it was going to go wrong. And it did, big time.

This "doctor" and I use the term loosely told us that Quinn's facial deformity was not noticeable from far away. My jaw dropped, I was mortified. Wasn't this man supposed to help children. His rudeness was overwhelming but it was only the beginning.

He proceeded to tell me that had Quinn's face been deformed by a cancerous tumour he would do the surgery. WHAT, I could not believe what he was telling me. My child yes, did not have cancer but he did have a very serious life threatening journey with a tumour, AND went through chemotherapy too. Did he not deserve the same chance at a normal future? Could this man be possibility discriminating against my child. I had no idea what to think. I turned my back to him fearing I would lose it.

Then he dropped the bomb that said it all. "Your child has Autism. He will never know that his face is different. There is nothing I am prepared to do for him" At that moment all the incidents of watching my son look in a mirror and scream flooded me with emotion and rage.Quinn knew DAMN well that his face was different and he deserved help just as much as any other child. With so many obstacles in his future, how, why what could possibly make this surgeon, sworn to help children, act in such a callous and insensitive manner???

We got up and left before I was arrested for doing what I was thinking. We were devastated and broken and defeated. Then I became livid for reasons I am sure I do not have to explain.

I retreated to my safe haven, an online community of parents living with vascular anomalies and I told my child's story. I hesitated fearing backlash from anyone related to his case who might read my words but I decided I did not care. What this doctor had done and said was repulsive and I was not going to keep quiet.

The support we got was amazing, people were appalled, supportive and urged us to take him to the US but we knew it was going to be a long shot because we did not know how we would ever raise that kind of money.

I tried contacting every major news outlet in Canada. I was prepared to tell his story, to do anything I could to help him but we never got a response. It was devastating. I felt like nobody was ever going to help my son.

Then I got an email that changed everything. It was a message from that same doctor in NYC. He wanted to help Quinn and would do whatever he had to to make it happen. We were floored by his generosity and kindness and thankful beyond words that this man, one of the very top in this field wanted to help our son.

We got a call not long after from a woman who was in process of forming a foundation in this doctors name and was planning to help families in our situation get the surgeries our children needed. We were flabbergasted by this kindness. She promised us that we would find a way to make this happen, however long it took.

There is a lot that goes into planning the surgery of a child like Quinn and in his case much more because the foundation needs to have the money to cover the significant costs involved in having the surgery done,more fees than you can possibly imagine and a lot went into trying to secure discounts from the hospital before this could happen.

This foundation worked so hard to secure this assistance for Quinn and thanks to the kindness of all the selfless people who donated to the foundation, the foundation who earmarked funds for Quinn and the two phenomenal doctors (Dr Waner and Dr Fay)who waived their fees enabling Quinn's first two surgeries to happen....Quinn had his first 2 surgeries in the summer. Thanks to the kindness of many family, friends and even strangers we were able to raise just enough money to get Quinn to New York for those two surgeries. We can never thank everyone involved enough. Words are just not enough.

Our son, the same one who certainly was aware of his facial deformity, looked in the mirror after his first surgery, preliminary lip reconstruction and removal of an orbital hemangima and fraxel laser, and smiled for the first time in over a year. Through stitches and dried blood he saw something that changed him that day. Our non verbal child spoke very loudly to us that day. Through his smiles and giggles we had not seen in so long, he told us he was happy. Dr Waner literally and figuratively gave Quinn his smile back and kick started a period of positive development and recovery from the regression that had taken him from us, at least spiritually.

On that first trip to New York, Quinn began to smile again, and he did not stop, and has not stopped since then. While some may question the timing or if it was coincidence, we know. We know what made a big change in our child's life.

Fast forward a year later....at a check up with Dr Waner and Dr Fay in May, they were thrilled to see his progress in the year since those two surgeries. They still have quite a bit they would like to do to help him out and we are very hopeful that Quinn's outcome will be a good one. When the day comes when he is able to have these surgeries we know that his life will begin a new chapter, one free of hemangiomas. It will be a long road with many obstacles but one major one will not be there. With so many other obstacles putting him at risk this will help give him a chance at some normalcy, at least the chance at a normal appearance, one that he is on his way to having. After years of horrible comments, stares, crying by children who seen him, being called Scarface over an over and a "monster" there is hope. The day that this part of his journey comes to an end will be a beautiful one.

Medically things are not quite as certain and periodically I am reminded of the fact that he does have a rare and potentially life threatening disorder. Previously life threatening we are aware in the back of our minds that we can easily be back there at any time, but we do not live life in fear of it. Every day we have with our amazing child is a blessing beyond words.

Autism is a very big part of his life, all of ours and always will be, but it is no longer heartbreaking. He has been to the bottom and has clawed his way up and will continue to. Quinn has come leaps and bounds from that time where we "lost" him. He is finally at 4 years of age beginning to say appropriate words and we are confident that our child once labelled non-verbal will one day break his silence once and for all.

Quinn's story, his first 4 years is a long one and this is but a glimpse into that time. We share his story not to have anyone feel sorry for him. We do so to inspire hope for other families affected with any of the disorders Quinn has. He is a true and absolute blessing in every way.

***EDITED TO ADD....

I want to mention something very important and that is that we owe an extreme amount of gratitude,praise and thanks to the many specialists and health care team members at the children's hospital my son has been treated at this past 4 years.

The issues we had with one particular doctor are SEPERATE from the care that was given to him by so many and was beyond their control. The decision not to help Quinn was made by one doctor, not familiar with his case and was unfortunate. Never at any time did we experience this with those involved in his care. They saved his life and advocated for him against so many odds. He is here today because of their expertise, care and love.

4 Years of Hope and Inspiration

If there is anything the last 4 years with Quinn have taught me, it is to live for today and hope for tomorrow....to not look back and dwell upon what has been.

At the same time I am cognizant of the fact that I must also remember where we "have been" in order to move on.

As a mother of a child with multiple special needs and diagnosis' I remember the days when things were at their worst and more specifically, I remember the days where we were given news that would change our lives so profoundly that it rocked the core of our existence and challenged everything we knew, and thought we knew about being a parent. Having been someone who worked with children with special needs for the better part of 20 years, it also gave me the perspective as a parent i had never had, and never wanted to have. (most of my work has been done with children with Autism, ironically)

Two years ago today my son was diagnosed with Autism. It was not a surprise by any means...in fact I had spent the better part of the previous 9 months trying to convince family members, friends and even professionals that my son was having a serious developmental regression. I will not rehash the hell it was to see my son rapidly slipping away, retreating if you will, into a world that we did not undedrstand but I can tell you that the pain of seeing my once happy, social and verbal little man regress into a child who was withdrawn and unresponsive was unmeasurable.

By the time we actually got to the day of his assessment there was no doubt in any one's mind who knew him, that he would be diagnosed with Autism. I was fully prepared to hear those words...or at least I thought I was.

What I was not prepared for was how paralysed I felt at actually hearing them, at the reality that hit me with the weight of a Mack truck and how helpless I felt and how angry I was that after all Quinn had endured in the first two years of his life, that he was now given a life sentence of Autism.

To put it in perspective, two years to that day Quinn had been in the hospital fighting for his life. He had had a stroke, was having life threatening seizures, caused by the stroke and the stroke was caused by two holes in his heart that they had just found. He also had a life threatening enormous hemangioma (vascular tumour) on and in his face, brain, neck, eye...etc that at only 4 weeks of age had disfigured him severely leaving him without a right upper lip. the right side of his brain (specifically the right cerebellum) was under-developed. He had been on chemotherapy for a year and was facing extensive plastic surgery if he ever had a chance at a normal appearance. We had almost lost him 4 times and most of his first two years was either spent in the hospital or in doctors offices.

We were exhausted mentally and physically. We were not prepared to take on anything else...especially Autism. To say that it didn't seem right after all he had been through, to throw Autism in the mix, is an understatement. A big one.

Up until that moment, where he was officially diagnosed, I had hoped that someone would tell me it was all a big mistake, that his symtomology was due to the stroke, or the malformation...but they could not. There was no denying that my son had in fact suffered a sudden regression that led him into the world of Autism at 15 months of age. Prior to that he had no symptoms or signs of having it. One day he did not have it, and then next he did. Why, well we will never know for sure and it does not matter to us anyway. The suspicion is that it is linked to his specific case of PHACE Syndrome and his brain malformation and stroke. What triggered the regression, again we will never know and I refuse to dwell on that because it is what it is and it was meant to be.

Looking at my son that day 2 years ago, I was terrified at what they future held for him. He was trapped in a world that I could not pull him out of and I was afraid that he was going to be living in it for the rest of his life.

While behind the fear I had hope, it was hard to see that day.

Little did I know that two years later he would have reestablished a bond with his family, would allow us to comfort him once again and would seek out affection and approval one day. He would also learn how to vocalize once again and while still mainly non-verbal he is beginning to say a few words, some even appropriately. It took 4 years but he finally gave me a name, mama....and the boy can sing. He can pick up a tune like no body's business and while you might not understand each word he sings, the thought is there while pronunciation may not be. He understands everything we say, maybe not all we do as social behaviour will remain a mystery to him until he learns otherwise. He even responds to some commands and now looks for approval after he has completed them. That is a big deal, the fact that he now looks at us is a big deal. The twinkle that he lost is now back in his eye and he has a mischievous way about him and a sense of humour that research states he should not have...but he does. Some of it is even appropriate now.

Hemangiomas are no longer a part of our everyday vocabulary. Long gone are the days of chemo, steroids and monthly dermatology visits. We still have scarring and deformities but we also have hope. After two major plastic surgeries, Quinn has a much more normal appearance and while it is not important for us we are thankful that this hope exists for him and that after one or two more major surgeries, he will no longer have to live in the shadow of that hemangioma, or the destruction it caused.

He has continued to recover from the stroke and is walking and even running quite well these days. Balance and coordination remain a bit of a hurdle, but he is getting there. He finally uses his right hand and doesn't always hold it in a fist up to his right side as he did before...well not as much anyways.

Seizures and migraines are no longer a nightly/daily thing thanks to something called Valproic Acid (Depakote) We may not have been able to eliminate them altogether, but they do not rule his life any longer, and that is a very big deal.

PHACE Syndrome, for Quinn, is no longer bigger than life. His medical issues are all stable and we are extremely grateful for that. No longer is it a matter of it he survives this. He has survived, he has survived a lot, more than your average 4 year old..by far. He will continue to survive and we will continue to hope, that despite some very big obstacles in his life, he will prosper and be happy. Quinn is happy, in fact he is rarely unhappy and is very laid back as a rule.

June 4th, has a history of not being a very good day for us, but today, looking back on where we have been and where we are today in Quinn's journey, I can see it as a reason for hope. It is no longer the anniversary of some very rough times, just a reminder of why we are where we are today. We are in a much better place today and like it or not it is because of this day that once held so much pain, one, two and three years ago. Today, it represent hope. Hope that it is possible to overcome adversity, even when it is piled on top of other adversity. There comes a time when you crawl out from under that pile and you shake it off. You realized that you survived the worst, learned from it, and will now be able to make the best of what is to come. Life is what you make of it and my son has turned the hand he was dealt, into hope.

LONG OVERDUE QUINN UPDATE

Well I was going to start this post another way but I decided to start with some irony which depending on how you look at it could be humorous or it could be a sign. I'm going to stick with irony though.

As I was getting ready to post the annoying messenger thing popped up telling me I had a new message. Turned out I won the lottery in the UK again but that's beside the point. Right below that message was an email from my favorite music group telling me their 2009 shirts are going on sale tomorrow. The subject line of the email was SHOW YOUR SCARS and it relates to a song that put out recently encouraging people to do so both outer and inner.

Well the very next email was wanting pics of Quinn, seriously. I then started looking through recent pics and trying to find the ones that show areas he still "needs" work on. I say "needs" b/c to me he is perfect.

So how is Quinn? Well to me he is a cheeky little stinker who in many ways is a "typical" 3 year old having overcome some of the obstacles that led to his initial diagnosis of autism.

Well so much for not exploring or getting into things, he mastered that skill very well and he gets mad when you say no which I still find funny because he did not react for a time so getting ticked off, as rarely as he does is a bit funny. Luckily I speak fluent Quinn and I can interpret what he wants easily though I push him to make some effort at communicating and at times that leads to a flying object, luckily not at me (anymore…I mastered the I want a drink situation after getting a cup in the head once) Poor daddy doesn’t have as much luck interpreting so he gets grumbled at a bit more.

Sleeping is still a big issue, he still wakes and yaks and yaks and sings for hours in the middle of the night AND he is still in a crib, but only because he is small enough to be and it is a safety issue but that time will have to come soon and so will sleeping.

No words and I admit I am really struggling with that personally. I mean if he told me off, I would throw a party. I certainly long to hear mommy let alone I love you but alas it is MY issue but I think it is an easy one to understand. He can listen to a song and hum it like nobody’s business. (Especially at 3 am) and I work with him on simple words like “HI” and he imitates the mouth movement but cannot get the sound out. He tries so hard that it is an effort in futility holding back the tears. He has so much to say and I can see it in his eyes. He is incredibly bright but cannot communicate and this is a very big issue being addressed.

Many people ask and while the autism more than likely plays a big role, the fact that he had a stroke which damaged what is typically home to the speech area of the brain as well. Babies brains often compensate by using other areas of the brain which do not have a specified function and essentially take on the role of the area that was damaged. So that is what we hoped for long before the autism. I hope one day he can have a functional MRI so we can see what is firing and what is not but I am not sure how or if he would be a candidate but trusts me I am going to ask.

Another area of the brain which many people are unaware of also is partially responsible for speech and that is the cerebellum and if you have followed his story for some time you will know that he only has about half of the right side.

So what does all this mean when you put it together? That is a very good question and I don’t know if it is an answer we will ever be privy to. On paper his odds of talking would be slim to none, but this is not any ordinary child, this is Quinn. Am I biased yes but I have been fortunate to be present through many things with him which cannot be explained scientifically. The simple fact that he made it to the day of his birth is extraordinary, not to mention the events of his first 2 years. We don’t look back though we are thankful for the amazing gift we have been given in Quinn and our two older boys.

Next week he is having a major MRI. Why is it major? Well so far in the research and what is known of PHACE if his arteries are not changing or have changed on this scan, at almost 4 years of age, the odds of them doing so are “predicted” to be very low for the rest of his life. Translation, Quinn’s stroke risk goes down significantly BUT we will still have to have him monitored periodically to make sure. We know of all the other things that can happen but we will never live our lives in fear of it.

I’m actually not worried too much about his neuro issues. He will always have them due to the stroke, autism and a congenital defect but who knows what the future will hold.

We do have a ‘potential’ concern with the blood pooling still happening and getting worse and Quinn is going to be seeing a thrombosis specialist while we are in Toronto next week. I am concerned about that but I am going to leave it where it is until we find out more. I learned the hard way googling venous pooling and you ALWAYS get the worst case scenarios online. Case in point, Quinn used to be one of those scenarios but I hope now that he instead inspires hope.

Next week he sees every one of his neuro specialists and depending on what happens there may be more but God I really hope not. In the event something does come up I think I will be ready for it.
I wasn’t and still am not at peace with the whole Autism thing. I still struggle with it greatly but at the same time I adore every single thing about him. I only wish he did not have such an obstacle in life and one given to him after a major facial deformity and a disorder that almost took him away from us before his life began and a few times after.

He is still very small but he eats well, (still no utensil use). We have had to be very careful this past few months with the H1N1 issue (he has not had the vaccine due to uncertainties of how he would respond neurologically to a few ingredients in it) This is not an autism vaccine thing either, we would love for him to be able to have it. He also had to miss a few weeks of preschool due to a chicken pox outbreak and with a possibility of an autoimmune disorder he has been advised not to have live vaccines. We hope this is ruled out next week so he can have the vaccine. Chicken pox for Quinn we have been told could be very dangerous. The reasons are vast and not a great topic of conversation.

So I guess when it comes down to it next week is a pretty important one for Quinn and if you believe in God or any other spiritual being please say a prayer for him. Medically the kid has had enough, neurologically well, I’ll skip that one. What we want now more than anything is for him to be out in the world being who is is and hopefully learning to ‘live” in our world and want to be in it with people other than us. And communicate….there is that, whatever communication will mean for him.
Surgery is pending and when that is set up I will let everyone know.

Next week will reveal a lot. I have actually requested (almost begged) to see one doctor in particular who is top in the world in pediatric stroke so throw some prayers that way that she ends up available to see Quinn. I have wanted this so bad for almost 4 years. And while you are at it maybe a few for a miracle that that @#$% hemangioma in his melon suddenly disappeared and we will never have to think about it having to come out ever again.

There is more of course but we will just wait and see and hope that while we can never close the book on PHACE we can put it up on a shelf where we can see it and reach it if we need to. With any luck and the skill of some amazing surgeons we will be able to finally close the book on his hemangioma journey. That one I may just toss somewhere because, well I am sure you can guess.

We have decided NOT to put Quinn in JK next year but to instead keep him in the preschool readiness program at children’s rehab and continue his other therapies. Though they all think he is brilliant it just is not the time.

Until next week.

To all of you who have helped so much this past year, thank you, but move over because I am back.

Have I mentioned a great new business at http://www.weerockcouture.com I hear the seller is motivated and going to have a big sale soon so we can get thee to New York. Thee being thee 5 as promised to our older boys. So come have a look (she wrote shamelessly) and send your friends, lots of them!

Love to you all, Jen
xoxo

Some Recent Quinny Pics

This is the amazing smile we get every morning when he wakes up

Modelling For Mommy's New Online Store

(No worries we are not Rob Zombie Fans)

Baking With Grandma,Ty,Ry and Papa

"If you think I am eating those you are nuts Grandma!"

Now Ryan here, he IS nuts

3 Year Old Techno Wizard??????

You know a lot of things go through your head when a neuro specialist tells you your son has had a stroke and one of the things that I certainly did not envision that day was that my son would be extraordinarily technologically inclined at the tender age of 3.

Admittedly there are some techno wise people in both sides of the family but there are also those (I won't mention my mom or brother Jeff Majerczak) who certainly are, well less than techo nerds i guess you could say.

So far I think I have mentioned the episode a week ago where Quinn attempted to purchase the playboy channel causing more premature aging and wear on his mother and he reprogrammed my printer, how I will never know because he was not even near the computer. The one time I let him near my computer I regretted it because he deleted the one file I use everyday and removed my security system. All within 5 minutes.

Now for a 3 year old you would think a satellite system and PVR would be complicated. Somehow he has learned how to find the taped television shows/movies and the other day Tom walked into the room to find him with the remote watching his fav. episode of Mighty Machines. The TV had been on TSN before that.

This morning he was sitting on my lap and though I tried to hide the remote I swear he has tuned into its frequency like those annoying key chains we used to have that would beep when you clapped. I of course do not mean to say my son is annoying but his obsession with the remote can be.

Anyways getting back on track, the child took the remote and with no hesitation went to the taped episodes and amongst numerous episodes of CSI NY, Miami and Las Vegas the child went directly to the reg CSI. Freaky but it could not have been deliberate right?

Well he began to watch the opening of the show and got super excited, for whatever reason he only knows it gives him a big kick.

Then, and before I tell you, you should know that to look at the screen CSI is everywhere, i would have to be fully awake to know which was which. So what I thought was a fluke turned out to be WRONG.
He did this over and over until I could not bear the sight of Las Vegas at night any longer and the WHO while they are great, hearing "who are you" 10 times in a row is a little annoying.

So I grabbed the remote from him shaking my head, speechless and put it on the preschool channel hoping he would find something educational other than Las vegas at night. I go to make luch and next thing you know I hear the familiar sound of race cars. Quinn had somehow put the TV on Nascar which while he loves it, I am less impressed. My jaw is dropping lower and lower at this point trying to figure out if their is some unseen being helping him out or if I just really needed to go back to bed and try waking up again because a 3 year old is not generally capable of this kind of thing. I've had 2 before him and nothing like this ever happened.

Later in the day Tom left the room while the TV was on Nascar at Quinn's insistence, I think it was Speed or something like that, not really my thing. When he came back into the room Quinn was watching Michelle Phiffer (sp I know) strut around in a catsuit and he thought it was pretty funny. I don't know though, after the whole playboy channel thing I wonder about him.

After putting the kids to bed we went to our list of shows and what do we find to be the newest recorded program, the first Batman movie. Yup Quinn recorded Batman on the PVR and I really have to wonder if it was an accident. I am anxious to see if he looks for it later today.

Next time you see a child with Autism who does not "appear" to tune in to what is going on around him/her, think twice because appearances are deceiving. One only has to spend a day with Quinn to know he has all his devices about him and a whole lot more.

Mighty Quinn, seriously what is he going to do next. Naked women, Nascar, football and action movies? The child is 3 going on 30. I look forward to the day he starts talking but I am almost afraid of what I am going to hear. You know what they say, be careful what you wish for.

3 year old techno wizard, my God what is next? Mighty Quinn, maybe we better stop calling him that because I think it has gone to his head.