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

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

2010-11-13T03:16:00.001-05:00

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......

2010-10-26T02:14:00.001-04:00

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

2010-07-29T23:23:00.005-04:00

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 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

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

2010-06-04T09:17:00.002-04:00

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

2010-02-25T05:46:00.003-05:00

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

2009-12-17T04:32:00.005-05:00

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??????

2009-11-16T03:55:00.001-05:00

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.

Dance Like There Is No One Watching

2009-11-14T03:51:00.006-05:00

That is a quote that my sister in law has hanging in her house and it is one that I have always loved. I do this with my kids quite often, we have our dance time where we turn up the stereo and just dance and have fun. It is something Quinn loves to do, besides liking music he just loves to get down and be silly with mommy and his brothers. It's good for me too.

Today I wish to God I had been with Tom when he picked up Quinn from preschool because when Tom got there Quinn was in a circle of kids, in the middle dancing with a little girl, giggling his butt off and just being a kid like the way it is supposed to be.

He loves preschool and that is putting it mildly, while he was happy to see Tom (who FYI had on his lovely dump clothes pulling the trailer behind the van) but he was NOT happy when he realized he had to leave.

The change in him is nothing short of amazing and in my mind another one of those little, or rather BIG miracles we have been so blessed to see.

To describe what his therapy has been is difficult because it has been a mix of a few things that I tailored to him, but I did use very little ABA because it was not right for him. The principles of Relationship Development Intervention formed the base of his "treatment" I found it to be much more naturalistic and to simplify it is all about helping the child want to be with others, to seek out others and form relationships. I say this all of the time but that was so much more important to us than learning to put a round peg in a round hole.

RDI helps to stimulate the areas of the brain which are often inactive in a child with Autism.

We would and still do spend about 3 hours together (now it tends to be numerous times through the day) and I did all kids of activities from normal everyday tasks, to games, songs, fine motor, matching you name it we do it but there are always a number of goals embedded in why we do each thing and I spend a lot of time testing his limits as far as focus and anticipation, mutual enjoyment etc.

We have definitely learned through all of this that Quinn is a very bright little boy whose receptive language skills amaze me still because the odds were not at all in favor of this being a strength. He can watch someone do something once and then days later he will repeat it.

This is not something he has seen anyone do BTW, just to clear that up before I go on... but last week I was making the boys lunches and I heard the familiar sound of Quinn playing with the TV. He likes the sound it makes when you turn it on and off (sounds like a bad Atari game) but this particular time I checked around the corner and I see “we are currently processing your order for the Playboy Channel”
I'm pretty sure I sounded like a wounded dog grabbing the remote from him and I see the progress bar like you have when you download. When it finished I held my breath and THANK GOD it said “sorry you are not currently connected to a phone line” Now that is why they have parental controls. Of all the hundreds of channels you could have clicked on, it just had to be that one because when Quinn does something he makes a statement. Then I could not stop laughing for about an hour and he was jumping on his mini trampoline looking at me with a cheeky grin and giggling.

He keeps me on my toes. Somehow he reprogrammed my printer just by using the panel on the front and I had to uninstall then reinstall the whole thing. He is also obsessed with getting his picture taken??? He now will shove the camera at me (etiquette is not his forte yet LOL) and then sit there with his goofy grin waiting for me to take the pic. THEN he grabs the camera to see the screen. Geez talk about modern day kids, if I pulled out the old point and shoot 35 mm he would be confused. He poses too, it is hysterical.

One of his big things is singing of course the words are not understandable but he walks around singing and smiling all day. He also has a habit of doing this from 2:30-5;30 in the morning EVERY night but he is getting better, maybe only every 3rd night. But LOUD, the child is loud but happy and who in their right mind would want to stop that. My mom knows all about this having spent 2 weeks with him in NYC and I of course would just laugh. The secret to this is earplugs or an MP3 player and pretending he is not their even though it sounds as if you are smack in the middle of an very very off Broadway opera or musical. I always hope the hotels we are in have thick walls and the ones that don't well that might account for the bangs on the ceiling or floor. Oh well!

We are back to Sick Kids next month and he will likely have a few appointments in the next few as we have been putting them off as long as we could. What I am looking forward to is having him walk into the examination rooms and down the big hallway with the footsteps. The last time he was there he could not walk. He very likely will plant himself in front of the elevators which serve as a very big deal to him and I have this feeling I will be riding them for an hour or so.

The child that will for the first time be walking into that hospital is not the same one who was there last. I'm just going to let him loose because I can and run after him as he giggles his way down the halls. We need to make new memories there, the old ones are not so good. If anyone asks why I am letting my crazy Quinn run down the hall, my answer will simply be, because he can.

There is nothing that child can't do, I truly believe he was put here to teach what it means to have inner strength, to not take no for an answer and to show that no matter what religion you believe in miracles do in fact happen everyday. When you are open to seeing them you will see that even the smallest ones need to be celebrated. And the big ones well after you catch your breathe and realize what you are seeing is in fact real, throw the biggest damn party you can think of.

Most importantly never look back, never forget where you came from but have faith and keep your eye on the future.

My son was dancing holding hands with a girl, wow.

Number of Children Awaiting Autism Treatment Balloons

2009-10-28T02:17:00.000-04:00

A media release from NDP Leader, Andrea Horwath

Number of Children Awaiting Autism Treatment Balloons
location: Queen's Park
date: October 26, 2009 - 1:00pm
body:
Ontario’s NDP Leader Andrea Horwath is citing more troubling facts concerning the McGuinty government’s approach to treating Ontario children with autism.

“The government is cutting off more children from IBI when schools are not able to provide the therapy. Instead of funding treatment, the government is allowing waiting lists to balloon and children to languish,” Horwath said in the Ontario Legislature today after revealing the government’s latest quarterly numbers for April to June, 2009.

Compared to the previous quarter, 1,649 children are now waiting for IBI therapy. That’s 136 more than previously reported (1, 513) and a 9 per cent increase in just three months.

“When will parents see adequate service levels and proper funding for children’s autism treatment?” Horwath demanded of Minister of Children and Youth Services Laurel Broten. “It has been six years. These children and these families cannot wait any longer for this government to get its act together when it comes to the autism file.”

The government is cutting off more children from IBI even though schools are not able to provide the therapy, Horwath said. The latest quarterly statistics from the ministry show another 114 children were abruptly cut off.

“The regular quarterly numbers don’t lie. Why are more children with autism waiting for treatment, and why are more children having their autism suddenly cut off and terminated?” Horwath said. “The McGuinty government’s autism program is not living up to the Premier’s promise of ensuring children with autism receive treatment regardless of their age.”

Horwath, the MPP for Hamilton Centre, recently brought the autism file into her portfolio as Ontario’s NDP Critic for Children and Youth Service.

-----------------------------------------------------------------------------------

From House Hansard 10/26/09. The new Minister of Children and Youth Services has spoken:

AUTISM TREATMENT

Ms. Andrea Horwath: My question is to the Minister of Children and Youth Services. According to her ministry's most recent quarterly numbers, the McGuinty government's autism program is not living up to the Premier's promise of ensuring that children with autism receive treatment regardless of their age. The IBI/ABA numbers for April through June 2009 continue to be troubling. Compared to the previous quarter, 1,649 children are waiting for IBI, 136 more than previously reported, and another 114 children have been abruptly cut off.

Why are more children with autism waiting for treatment, and why are more children having their treatment suddenly cut off and terminated?

1100

Hon. Laurel C. Broten: This is a file where I'm very pleased to be able to build on the work that's been done by our government and a variety of Ministers of Children and Youth Services since we took office in 2003. We've made a lot of progress. Kids are getting the help they need, we've expanded those services, and we're working to make sure that families also have the support they need. We're working to maintain that progress and push ahead, working with parents and experts. Over the last couple of years, we've been examining how we can do better for our kids in Ontario.

I had the opportunity last week to visit Surrey Place and speak directly with the experts and find out how they think we can best help kids in Ontario. There is more work to do-there is always more work to do. We continue to build on the efforts that we've put in place to make sure that Ontario kids get everything they need from our education system and that envelope of services around them.

The Speaker (Hon. Steve Peters): Supplementary?

Ms. Andrea Horwath: It's been six years. These children and these families cannot wait any longer for this government to get its act together when it comes to the autism file.

The regular quarterly numbers don't lie. The government is cutting off more children from IBI when schools are not able to provide the therapy. Instead of funding treatment, the government is allowing waiting lists to balloon and children to languish. When will parents see adequate service levels and proper funding for children's autism treatment?

Hon. Laurel C. Broten: I want to put some key facts on the table. We removed the previous government's age 6 cut-off and more than tripled autism spending, from $44 million to $165 million. We've more than doubled the number of kids getting IBI treatment-more than 1,300 now, up from just over 500 four years ago. We've introduced respite programs that serve almost 7,000 kids. The growing waiting list is not acceptable. That's why we've put more resources into the system.

But I would say that the numbers being brought forward by the leader of the opposition are consistent with numbers that we've seen in the past: 114 kids have completed the services for IBI, and we now have 1,262 kids receiving that service.

We need to get service to more kids. We need to broaden that continuum of support. That's why we're working with world-renowned experts like Peter Szatmari and Nancy Freeman and why we've brought that group of expertise to the table to make sure that kids in our schools get the treatment-

The Speaker (Hon. Steve Peters): Thank you. New question.

Ahem, excuse me Quinn

2009-09-30T15:51:00.005-04:00

To think, a year ago nobody knew if he would be able to walk. Now look at him. This is what we found after hearing an extraordinary amount of laughter going from Tyler and Ryan's room. There was Quinn with a busted look on his face on the TOP bunk. He actually clmbed up the ladder and onto the bed because Ryan had some cars on there that Quinn wanted.

Well he certainly has earned his monkey nickname and we know put the ladder on top of the bed each morning because while it was a funny moment it scared the you know what out of me at the same time.

3 Months Post Op

2009-09-11T17:20:00.002-04:00

Vote PHACE Syndrome To Be Featured On The Doctor's TV Show

2009-09-11T11:34:00.001-04:00

Vote for Ideas

Shared via AddThis

Family Vacation Part 1 Minden (In the Kawartha's)

2009-08-29T23:08:00.004-04:00

For the very first time (since Quinn was born) we went on a vacation that did not include doctors, surgeries, appointments or PHACE related conferences. What an amazing thing that I likely would have taken for granted years ago. To do a normal family thing, well our normal anyways which is just fine by me.

Every time we stopped we made sure it was a WalMart so Quinn would be happy. I used to cringe doing this out of town because there was a time when he would attract the attention from people across the store. I find now that we can go in somewhere almost incognito. People only look if they get close and when they do they are likely trying to figure out what "happened" The only ones who say anything are kids which is not big deal, I usually end up feeling bad for the parent who generally looks mortified that their child said something.

No, the only thing that might be weird about Quinn's time in WalMart is that he is the only 3 year old NOT having a fit or begging for a toy.

Quinn and Ty (Quinn is deep in the A-Zone (autism) focused on the ride and watching the big trucks)

Tyler asking for the 500th time how much longer the trip would be, and Quinn's response

Ryan is SOOOO good with Quinn

He covers his ears a lot now as you may have noticed

It's hard to believe at one point there was a ginormous hemangioma on and in that beautiful face

Ah his lip.....a bit of a complication, the overhang is back BUT on the bright side look at his cheek,

Dr Waner sucked the rest of that hemangioma out and now both cheeks are the same size. The scarring looks different everyday and will continue to change for another 4 months

Hopefully he will only need one more surgery to touch up the lip now that his face is symmetrical

We are getting closer!

Sooo laid back, can you tell he is a real handful *wink*

My Mighty Guy climbing stairs STANDING for the first time

(Prenatal Stroke: 1/Mighty Quinn: 1,0000000)

Still kicking that stroke in the Asstronaught

Uncle C playing guitar and singing he was obviously doing a good job because Quinn would have had his hands over his ears like he does when Grandma M sings to him on the phone

This picture is so precious. I only wish this awesome kindergarten teacher (well Gr 1 now) could teach Quinn. He adores his Uncle C

3rd times a charm for this Tommy Hat, all 3 have worn it. It's for a 4-7 year old but it covers him up really well, if only he'd leave it on!

Can't remember if I mentioned this yet, but he does not lick very much anymore, the only problem is that when you eliminate one behaviour it gets replaced with another, I thought the licking was bad until he started chewing his shirts (thus the tank top to protect the poor Ramones)

Look at those ribs! We really do feed him

He was stimming like crazy over the waves hitting the shore. he was flapping so much I thought he was going to get some air!

Did I mention he chews his shirts..........?

This is a cute picture....but it is what it means that is so important. When he was assessed and diagnosed he was not exploring whatsoever, but now he has started taking a serious interest in his environment and for him water has always been "scary" so this pic is pretty big

Autism: 1,000/10,000

I took quite a few pics on that part of our trip but many were of the boys in their bathing suits, for reasons I am sure you understand I did not post them where they could be seen by the wrong people. The full album is on my facebook account, which is private so you can see them there.

Tomorrow I will post the pics from Niagara Falls where the kids had a BLAST even though it was over 100 degrees (hey Northern Ontario girl here, humidity kills me)

I will get around to doing a proper update as soon as I can. School starts again on Tuesday. Until then I will be that person in the Staples/Office Depot commercial singing "It's the most wonderful time of the year"

1 Month Post Op-Liposuction of Regressed Hemangioma and Resurfacing of Ulceration Scarring

2009-07-30T01:11:00.004-04:00

Today marks one month post op for Quinn since the liposuction. What a month it has been. I have never seen a child's face go through so many different changes not only on a day to day basis but at times within the very same day.

I haven't been posting pictures because I think the results would seem misleading to a point. I know I keep reminding myself that it is going to be 6 months before we see the final result. Healing from lipo especially when you have extensive fibro fatty tissue like Quinn does/did takes even longer.

The incision from his first surgery on his lip has virtually dissipated and I spent a good amount of time today comparing photos from before he had Fraxel and the amount his scarring has already smoothed out is shocking to say the least, especially in the area beside his mouth. There used to be tethering and an indent and now dare I say it, it is beginning to look like normal skin.

We have a twice daily routine which consists of putting the Rejuveness cream on the scarred areas and massaging the areas to promote collagen growth from underneath. That is how Fraxel works, from the inside out. There were a couple of days where it actually looked really bad all of a sudden and made me nervous but I keep telling myself to remember how far he has come and that this is not an overnight fix.

The photos I will post today will show how much smoother his face is, it is truly remarkable, that and the wonderful job that Dr Fay did removing the big nasty orbital hemangioma. It has been wonderful to see him with both eyes open. That eye is very sensitive to light still and when he goes out in the daylight it tends to close up again. There is little doubt in my mind his vision is damaged in that eye but there is also little doubt that Dr Fay saved what vision he does have and we are eternally grateful for that. He was right about the lid though, it is not functioning "that" well and is floppy and rolls under so he will need that surgery to shorten the muscle which was destroyed and completely invaded bu the hemangioma.

Now his lip, ah the lip is still being a bit of an issue and I hope that it is swelling causing the right side to collapse again. Right now it doesn't look much different than it did before we started surgery and likely won't until all of the swelling has subsided over the next few months. He did have a symmetrical lip for a few weeks though and I know it will be again. Likely he will need more surgery on that area, but then again who knows with Quinn, he is full of surprises.

He was annoyed at me taking these pictures this morning because I had just put the cream on and he was watching the CNN ticker (he loves it) and didn't feel like having a camera in his face. In one of the pictures, well you can't really see it because I cropped it but he was covering his ears during a commercial (don't ask, we have no idea especially because he does it during commercials he likes)

So her is Quinn one month post op. In another 5 months we will know the final results and hopefully that cheek tightens up and his lip pops into place. What a weird thing to say about your child but alas these past 3+ years truly have been the definition of weird, but miraculous as well. My God he has come so far. He even has a hint of a few eyelash hairs as you will see in the photos, not enough for an eyebrow but there are hairs there I tell you!

Here is a great visual reminder of how far my little man has come.

An Amazing Book And A Bit of a Rant/Vent

2009-07-20T02:18:00.001-04:00

When we were leaving New York I stopped and did something that I have wanted to do for quite some time. I bought a book. I admit to being a literary junkie for the majority of my life but for some time I have put my passion for literature aside. Well unless you count the endless amount of research I have done into the things that relate to Quinn.

Though this book was bought with Quinn in mind it is one that I have been wanting to purchase for months. It is called My Stroke of Insight and it was written by a Brain Scientist who at the age of 37 had a massive stroke. In the book she recounts the details of her stroke and her recovery (I am only part way through it) and relates it to her experience working with the brain and I am finding it both fascinating and inspiring. It is helping me to understand the way Quinn's brain reacts as a result of the stroke but I am intrigued by her insight into how each of us how the power to challenge our brains and use them in ways that that will help us all life more positive lives.

In the same vein tonight I watched the special with Michael J Fox, whom I was not a fan of until later in life, I have since become a fan of who he is as opposed to his work. So many of the things he said in the beginning of the episode echo exactly how I feel about our situation with Quinn. I taped it for tom who is working tonight and I tell you it was an hour I spent in tears.

The following story was about a group of three children in the UK who have Primordial Dwarfism, and those of you from the Soo likely know about the little girl who lives here who also has it. I was really thrown for a loop when they spoke about how the vessels in the children's brain can change as they get older and develop aneurysms, moya moya and stroke and I kind of went from one extreme to another with the two shows.

Though we want to raise Quinn as normally as we can, as he gets older (and I am not talking about looks) it is becoming more and more obvious and concerning to me that while I love that he is different, I worry about how he is going to find his place in society. Though I know he will I still an concerned and at times very sad.

When we went to the conference in Houston it was exciting and amazing but very very hard for me. I tried to prepare for it but I was not prepared for how different he was from the other kids his own age. He played in the same area as them but there was no interaction with them. It hit me like a ton of bricks. I want so much to be able to involve him with other children but lets face it Quinn does not exactly get any play date requests. He has been on the waiting list for a special needs spot at every daycare in this city that has a preschool program but so far nothing.

The catholic board has a preschool program they run a few days a week but when Ty was in it their were no children with special needs and I don't know if they would be equipped for it but I am going to try. He certainly is not toilet trained and likely will not be for some time, as is very common with Autism.

I am going to be putting him in a music program they he and I will attend together but other than that and what I am doing with him he is going to be totally unprepared for the structure of a classroom. Some may think this is too early to be concerned but I disagree in every way shape and form. I am not going to jump on the bandwagon of people complaining about the government's lack of action for children with Autism because it is not going to change any time soon and I do not want to waste time that is better spent trying to help him.

He has not had any therapy this summer because everyone is on holidays for most of the summer and with his surgeries nobody wanted to overwhelm him.

So while I remain optimistic I am very frustrated. Ironically this comes at a point where I am feeling much better anxiety wise than I have in 3 years.

I think he has been more affected by recent events than everyone realizes. As both his mom and therapist I can tell you that it has been an extreme challenge lately and that he has regressed quite a bit

With the seizures and headaches I get worried. Other times I wonder if he will develop behaviors not uncommon to Autism and then we will be totally confused. God forbid he screamed hours a day like a few children I worked with. Sometimes I want to throw my hands up and say somebody just tell me how to fix this for him, I don't want to change him but I am frustrated that I cannot be sure of his needs sometimes and that someday we might mistake a stroke warning for a behavior due to Autism.

This is not coming from nowhere but has been on my mind for some time but trying to establish a balance of meeting the needs of three children without one feeling left out is not always easy.

Quinn needs appointments galore but I am procrastinating because I am not 100% sure what the reaction will be. I am hoping for a good one and expecting a quiet head nodding.

The other thing I am determined to do is sit down with neurology to have a good discussion about how/when he developed autism. Everyone agrees 100% he did not have it, but developed it because of his brain anatomy. I don't necessarily want to know WHAT caused it but since it is neurological in nature and wasn't always present how do we attempt to "heal his brain" so to speak how do we get those neurons firing that are dormant. They worked before so what do we do to get them going again.

Behavior therapy is not for him, dietary therapy is not for him. If it is neurological there have to be ways of waking up parts of the brain and stimulating those areas. Call me crazy but I choose to believe there is an answer. For one thing I wonder how many toxins are still in his body from the chemo, how has that affected him. We are talking a powerful drug, that yes saved his life but at what other costs. I know what you are wondering and it has been suggested that the chemo might have played an environmental role in triggering the regression and autism development BUT because he was already at high risk from the cerebellum and stroke. For all we know it was Windex or laundry soap.

I hope I don't sound like a raving lunatic but this is the reality of the situation and when I am worried I write about it. I've seen him without Autism, with it and I have seen him recover part of what he lost only to lose much of it again. We are missing something somewhere and if I have to I am going to keep motivating every doctor, specialist,therapist etc until we figure this out. I do not expect a cure but there has to be a better answer and a way to help him that nobody has thought of yet.

Okay, enough of that I feel better now.

I am a little concerned today only because I am unfamiliar with the lipo healing process but today he looks more bruised and his cheek is a bit lumpy. Six months (almost 5) is a long time to wait to see. I'm the kid who searched for my Christmas presents and one year found where my mom kept her Christmas gift list and likely every year after that until one day I told her about 2 years ago.

Now to end, two words that I am wondering if anyone is familiar with, it is common in the stroke community discussions and I have often wondered if it would benefit Quinn but the cost is high. Just a thought, realistic I have no idea but who would have thought Quinn would develop Autism after everything else he went through.

Hyperbaric Oxygen

Its not as crazy as it sounds. Call me crazy but never in a million years did I think Dr Waner would operate on my son. (Who has just woken up again probably after another seizure)

On that note, gotta run. Hopefully he will go back to sleep b/c the last 2 nights the was no sleep to be had for this mom. So blame my ranting/venting desperation on that.

12 Days Post Surgery and Happy To Be Home

2009-07-11T13:24:00.005-04:00

I was finally able to take some "after" pictures of Quinn and he is looking fantastic. It is going to be 6 months before we will know the final result and if he will need and touch ups but I am so amazed and thankful to Dr Waner, Dr Fay and their team for the amazing results Quinn has already had. It is truly amazing especially when you look back at how far he has come.

In April Dr Fay said he may need more surgery on his eyelid and I tend to agree because it is still flipped under and irritating him. He said he could shorten the muscle to give him better function of his eyelid.

Quinn's cheek is still swollen from the lipo and will be for some time until it is completely healed and hopefully the corner of his new lip will pop up and not need revision.

The fraxel has done an amazing job of beginning to smooth the scarring he has and it has changed significantly so far. Dr Waner thinks the fraxel will do the job and I trust his judgement. I always had it in my head that it needed to be cut out but if we can avoid that and still get a good result it will be that much less trauma to his little body.

So now we play the waiting game and I will be taking pics of him again non stop and hoping for good results. We are also using the Rejuveness cream for scarring and if anyone wants to know about it (it is amazing!) let me know. It is not cheap but it produces results. I am testing it on a scar I have had since I was very small and it has definitely improved and that scar is over 30 years old!

Post Lipo Bruising

2009-07-06T21:57:00.003-04:00

Amazing

2009-07-06T09:59:00.001-04:00

1 Day Post Op (New York Day 3)

2009-07-02T09:56:00.011-04:00

Day 2 Surgery Pictures

2009-07-01T12:23:00.010-04:00

Sorry it took me so long to get the surgery pics up, Quinn is a real active little stinker so he keeps us pretty busy. The bruising from the lipo is hard to see in these photos but was much more obvious yesterday as was the fraxel. Today he looks like he went a couple rounds in the ring.

I debated posting some of these because I forgot my makeup at home and anyone who knows me knows that I never leave home without it. BUT considering what Quinn has been through it seemed a little silly to leave them out.

Taken Outside Roosevelt Hospital Before Surgery

Waiting in the Pre-op Room

I love this Pic With His Bum hanging out, he will hate this one some day!

Quinny and Grandma Majerczak

Quinn and the Dr who is doing a Fellowship With Dr Waner Quinn Loved Him

Consulting With Dr Waner and His Team

In the Recovery Room and in a LOT of Pain

Morphine works wonders!

Back to Sleep He Goes

Dots outlining the area to be lipo suctioned

Happy Boy, IV taken out of his neck

Bruising and Swelling From The Lipo Small incision red spot in middle of cheek

He Did So Well He Got To Go Back To The Hotel! Woo Hoo No Overnight Stay

What a tough little monkey, a HEMANGIOMA FREE Monkey That Is!

Day 1 in New York (Travel Day) Pictures

2009-06-30T15:37:00.006-04:00

Off To new york For Surgery in The Morning

2009-06-27T18:12:00.000-04:00

I have tried a few times this week to write a post but I kept erasing them.

We leave on a 6am flight tomorrow morning to Toronto and then onto New York. We should be at the hotel by noon barring any delays. Tom is working nights but he is getting off early to drive us (Quinn, my mom and I)

The boys at at Grandma D's tonight. After the last time we thought it wise not to have them at the airport, it was too hard on Ryan. When they left today it was so quiet it was just not right but we have to do what we have to do. Tom will be off for part of the week and they are very happy Daddy will be around.

Me, well put simply I have spent the last 2 days terrified. i don't know if it is because the surgery is so invasive or if it is a combination of leaving the kids again and Quinn having to go through this. I know he is tough and in good hands but it is very hard to know your 3 year old is having major reconstrution.

I'm kind of low on words and high on anxiety so this post will be a short one, I still have lots to do and right now I need to cut Quinn's hair which I am dreading. Then I will finish packing and attempt to get some sleep.

Quinn's surgery is at 9:00am Monday morning and then he will be admitted to the PICU again, hopefully only for one night again. I really do not know what to expect post op but I have complete faith that things will turn out okay.

I have been spending time showing Quinn the pictures of Dr Waner and telling him about the surgery and I know he is understanding some of it. He gets a lot more than people would ever imagine and that is one of the biggest misunderstanding about Autism. While many may seem non-focal and not be able to speak, they definitely have a lot to say and would if they were able to.

Now I am going to grab the clippers and hope he does not run away on me.

Next time you hear from me I will be in the Big Apple. Hopefully by then I will have relaxed a bit more.

I know this is a good thing and a necessary one but I still cannot help wishing he never had to go through any of this.

Stressed and signing off. Keep those prayers and good thoughts going for my little man and maybe throw me some for good measure while you are at it, I need some of that amazing Mighty Quinn strength right now.

Check Out My Little Metal Head!

2009-06-22T05:33:00.003-04:00

Ah, nothing could make me prouder, my little man in a Metallica shirt. He loves Metallica BTW (bad mommy) seriously he jumps up and down and wiggles his butt. Next time someone asks what kind of Autism therapy we do with him, maybe I'll tell them we listen to Metallica together........Life's to short to dress your kid in Winnie the Poo right?

A Little Worried A Special Birthday Wish

2009-06-16T05:00:00.001-04:00

I know 4 am and I am still awake. There is a reason for that, well a few but one good one. Quinn has been having some pretty good seizures this week at night and by good ones I mean GOOD ones. The kind that have him screaming for long periods of time afterwards. They really really have na effect on him the next day, he is just not the same Quinn when that happens and it is as if these past few days all of his amazing development went out the window.

Okay while I know is very possibly linked to the seizures it is giving me a horrid sense of deja vu. He is acting very much like he did before the big regression and the autism.We essentially lost the spirit of our Quinn when that happened and it was if he was a shell of his former self. He was physically here but not emotionally. As much as all the medical nonsense he has been through was rough, that was almost and maybe even harder.

I've asked this of his doctors a few times...I wanted to know if there was a chance that he could have another major regression and they did not give me the answer I wanted. They also do not know how his PHACE issues are interacting with the Autism and with the two it is often hard to tell what is what.

Not a lot is clear about why some children seem to have symptoms of Autism right from birth and others it is like flipping a switch and your child is gone. We know he was born at risk and he developed it however he did. Not vaccinations, he had not had any at the time. Regardless I doubt they compare to the year of chemo anyways. He was meant to have it however it happened.

When he was diagnosed they talked to us about how children who develop the regressive type of Autism tend to have a harder time which I knew and had seen first hand. The children I worked with in Hamilton were at the very severe end of the spectrum with major behaviour issues. I loved it though and when I got through to this one young girl it wasn't while I was forcing here to play Mr Potato head. It was when I sat here in front of me and sang to her and taught her how to roll a ball back and forth, to interact with me. Instead of holding smarties in one hand and a timer and chart in the other.

Anyways I am getting off topic about Quinn. I am bringing him in this week to see his doc b/c I think his dose needs to be increased again. I also want her to see the lip and get her to do the pre-op next week. Then we have to PRAY that someone can get a vein. I don't know what Tom is working but I am definitely going to need help holding him down.

Speaking of holding him down getting his meds into him in not easy at all. Stroke or no stroke it is amazing how much strength is in that little right arm when he is po'd. It definitely takes two people now.

My uncle is going to anoint him this week. He is a retired RC Priest so i know he has been putting in a good word with the big guy upstairs.

We have to stop these seizures and I hope to God that is what is affecting him during the day because honestly right now if he went through another major regression I don't know if I could cope. We "got by" last time but I ended up with major stress and health issues that I am still trying to overcome.

I am still trying to think positively even though at moments I want to scream. I'd pull my hair out but it has been falling out in BIG chunks (thank God for clip in extensions)

The kids have 9 days of school left WOO HOO. I cannot wait to have them home with me. Twelve days until we head to the big apple. It is coming way to soon. I am so lucky to have my mom coming with me because she and Quinn have a very close bond, but it is going to be hard not having Tom there. I am so lucky he has been there through almost everything but it is more important that he be here with the boys and have some guy bonding time. Tom wasn't a HUGE fan of NYC but I love it there.

Oh yeah 13 days until the surgery. That is not keeping me awake either, really (sarcasm intended)

Maybe throw some prayers Quinn's way this week so this too shall pass. Please also keep Tom's grandfather who in once again back in the hospital.

I have 3 hours until the boys have to be up so I will have to try and will myself to sleep.

Tomorrow I am going to sing to that boy until he throws something at my head (usually means he wants a pillow fight but today I'm pretty sure it meant STOP, an no he did not mean to aim for my head (I hope) he just has bad aim like his grandma (never ever have her throw anything to you FYI)

I think Quinn needs a trip to WalMart (don't ask I have no idea what he like about it) so he can go nuts for donuts. Literally, Grandma has a habit of buying him Timbits (for you non-Canadians, they are the little round donut hole type things. I think he has someone wrapped around his little finger.

Now I have to hope he does not get sick. I had a really bad stomach thing and was taking gravol around the clock but I feel much better except for my throat. Of course as I just wrote that I heard him coughing so that is my cue to zip it. Things have a habit of happening when I say them so the duct tape is over my mouth right now and the computer is going off.

Laptops are a curse in a way for parents of children who have issues.

Okay signing off and keep those prayers going,

One very special mention today to Quinn's special girlfriend Elyse (also with PHACE) Happy Birthday Sweetie, I love you dearly and you are just like family to me you and your mommy. 3 years our 2 little miracles are 3 years old. WOW.!

He's going to have a tough choice between Izzy and Elyse! My little Ladies Man. He needs a girl to tell him what to do though!

8 Weeks Post Op

2009-06-11T15:16:00.003-04:00

This is Quinn at theray last week.Can you see how well he has healed already? Even the incision line is barely noticeable unless you knew where to look.

Now here is what is amazing. The scarring beside and above his mouth is SO much smoother than before, That's with only one fraxel treatment and the scar cream I got for him. That area is really coming along.

He was really tired here but you can see his eye area looks much better.

Amazing truly amazing!

A Plane Ride 3 Years Ago

2009-05-31T12:35:00.001-04:00

I just could not fall asleep last night and it was driving me nuts. I wasn't thinking about anything or stressed about anything. I have actually been sleeping very well for about 2 months now.

I decided to turn the computer on to look at my calendar for the week and there it was like an annoying old neon sign that won't stop blinking.

Today is May 31st. Just another day yes but one that I will never forget.

We were in the hospital here just having spent the night with Quinn having seizure after seizure and nothing was stopping them. Quinn's doctor came in and sat in front of me and said "I have a feeling you know what I am about to say" I think I nodded and said how much time do I have to pack.

Non-stop seizure activity is a very dangerous situation and life threatening. Calls were made and preparations for him to be sent to Toronto were made. A social worker came to talk to us and I have no idea what she said.

We had quite a few family members in the room and I could tell they were all looking at me to see my reaction. A few people came in for a hug but I waved them off determined to keep it together. I knew I would break down if I even spoke. I walked out into the hall and asked his doctor if it was as serious as I was thinking and she said it is as serious as it gets.

Serious enough that I had 20 minutes to drive home and pack.I have no recollection of the drive there or back. You just go into robot mode in that type of situation.

About 30 seconds after I walked into the room the air paramedic transport team began hooking him up to their equipment. They put him in his car seat, strapped it to a gurney and then hooked him up to a ton of equipment and said "let's go"

I turned around and looked at Tom who looked like he was going to throw up or pass out, gave him a hug and asked him how fast he could drive.

They put him in the ambulance, light on and sirens flaring going through red lights and made the drive to the airport in record time I am sure.

The air ambulance is not a very big plane and it was hard for me to get in be cause I was still recovering from the C-Section 3.5 weeks earlier.

I spent the entire 50 minute flight just staring at Quinn while the paramedics fired questions at me. He looked so helpless and the IV coming out of his head kept reminding me of the scary situation we had after Tyler was born.

We landed at what seemed like the middle of nowhere and a helicopter was waiting to take us to the hospital. I was in a fog but for some strange reason I made note of just how attractive the 4 men in the helicopter were.I still think that is funny that, that is one of my recollections of that day.

As we flew over Toronto I had this sick feeling of anticipation come over me because I had no idea what to expect and I was really wishing Tom was there with me.

We landed on the roof and so began Quinn's Sick Kids journey. The boy really does know how to make an entrance I tell you.

A neurology resident came in (she is now a full time Stroke Doctor) and began giving him a neuro exam and as she was doing it I wanted to slap myself in the head because all of a sudden I saw how weak his right side was compared to his left. I told her how he did not have a rooting reflex on his right side and that bugged me from day one because I had a bad feeling about it.

All these things were running through my head when it hit me. She was wondering if he had a stroke. At that moment I prayed a million prayers all at the same time because our family has been impacted greatly by stroke. First with my younger brother and then my late Grandmother. There was no way I would ever be able to tell my mom that not only her son had a stroke, then her mother and now her grandson. Let's just say I pushed it out of my mind because those types of things don't happen in the same immediate family right? The irony would be sick.

Tom got there at about 1:30 in the morning and was only able to stay briefly because only one parent could stay. That night he slept on a chair in the ccu waiting room with dads from all over the hospital.

I sat and held my seizing son hitting the call button over and over and just prayed all night as they loaded him with meds that were not working and tried to feed a child who had now lost his lip and in it's place was an open wound.

I sat there and thought back to his birth and how that one nurse said "it's just a birthmark, no need to worry" Oh the irony.

I really really hate the term birthmark. It is a misnomer in cases like Quinn's. I have a birthmark,Ryan has a birthmark but Quinn well it certainly was much more than that as we were about to find out the next day.

.....to be continued tomorrow

Pics Taken Yesterday

2009-05-20T10:18:00.004-04:00

This is Quinn's My Twinn doll complete with hemangioma that looks more like a port wine stain. He once had nice hair, a diaper and sleep but now his doll is only allowed (his rules) to wear the I Love Grandma Shirt. I guess you can tell who dressed him! (know not Tom)

The blanket in his crib is very special, it was given to him by the ladies that volunteer at Sick Kids. He got it when he was in the neuro ICU.

The poor doll's hair. He likes to rub his head (I do that to him) so he does it to the doll. It sat in his crib ignored for many months until one day he began to actually play with it and that is a big step in his Autism recovery!

5 Weeks Post Op: The Most Beautiful Lips Ever!

2009-05-20T09:52:00.002-04:00

Depressed, anxious 1st graders at risk of being bullied later: study

2009-05-17T09:57:00.001-04:00

Depressed, anxious 1st graders at risk of being bullied later: study

Treating mental-health problems in children entering school may help prevent victimization from bullying, say researchers who tracked 400 Canadian children.

In the May/June issue of the journal Child Development, researchers said they found children who entered first grade with signs of depression and anxiety or excessive aggression were at risk of being chronically victimized by their classmates by third grade.

"Children's early mental-health problems can set the stage for abuse by their peers," said psychology Prof. Bonnie Leadbeater of the University of Victoria, who led the study.

Just as some children need extra help learning to read when they lag behind their peers, young children with mental-health problems also show signs that they can't manage the "complex social world of elementary school."

"Treating children's mental-health problems may go a long way toward reducing bullying," Leadbeater added.

In the study, teachers were asked to report on the children's symptoms of depression, anxiety and displays of physical aggression. Researchers returned at the end of the first, second and third grades to ask the children and their teachers to report on the same issues.

While 73 per cent showed few symptoms of depression and anxiety over the three years, seven per cent showed high levels throughout the course of the study. The other 20 per cent showed moderate symptoms at first that increased over time.

Children who were more prone to be aggressive when they started first grade were more likely to be victimized by their peers, perhaps in retaliation for their own acts of aggression, the researchers said.

The research was supported by grants from the Canadian Institutes of Health Research and the Social Sciences and Humanities Research Council of Canada.

Quinn's TV Interview

2009-05-11T14:07:00.002-04:00

Overdue Birthday Pictures From Quinn's 3rd Birthday

2009-05-07T06:19:00.011-04:00

Dr Waner To Be Featured on MSNBC Series A Change of Face

2009-04-30T16:37:00.001-04:00

Visit msnbc.com for Breaking News, World News, and News about the Economy

The MSNBC-TV documentary series entitled, "A Change of Face," which will profile Continuum physicians Milton Waner, MD, Monica Tadros, MD, Mark Smith, MD, and Alejandro Berenstein, MD, is scheduled to air for three consecutive Sundays-May 3, 10 and 17 from 10 to 11 pm.

The series highlights how this team of surgeons provides exceptional care to patients from around the world for conditions ranging from hemangiomas to venous and vascular malformations, rhinoplasty to nasal reconstruction. The show also highlights the special bond between patients and these doctors. Don't miss it!
Sneak peak of "A Change of Face"

BELIEVE

2009-04-30T10:06:00.003-04:00

Happy Birthday Grandma From Your Peanut!

2009-04-25T16:50:00.001-04:00

Quinn (aka Grandma's peanut) has a message for his Grandma on her special day today! He is excited that you will be with him on his next trip to New York too, he cried when you dropped us off yesterday. He was not too happy Grandma left!

Happy Birthday Grandma From Your Peanut and your daughter, son-in-law and two handsome big boys. We love you! xoxox

HOME SWEET HOME

2009-04-24T17:46:00.003-04:00

The most amazing sight I have ever seen from an airplane is that of a 5 and 7 year old boy jumping up and down as they watch a plane land. I was so happy my mom brought my boys to the airport because I was so anxious to see them. Our plane got delayed in Toronto due to toliet issues (???)So they had to bring another one over and all I wanted to do was get home to my kids.

We came home to no snow and a nice sunny warm day. I love spring so much.to me it always represented hope and growth and new beginnings and that is the type of thought pattern I have had these last few days.

I just watched the tv interview they did the day we left and I liked it they did a good job putting it together and I was happy with how it turned out, even the part with me in it.

Quinn had a great trip home, he travels so well every single time we do it. I kept getting asked about his age and everyone assumed he was under 2. I cannot believe he will be turning 3 in a week. He is still only 26 pounds and we just have not been able to break that. There is no doubt he will be a small child (with giant big brothers)

I suspect there is a relationship here but since the orbital hemangioma was removed Quinn's eye is turning inwards very often so I need to have that looked at asap. I am very thankful for Dr Fay's expertise and treatment of Quinn and I am sure what he did will help save what is left of his eyesight. I'm not going to go into detail on here about the eye because it upsets me to know that this should have been addressed a long time ago.

Instead I am going to be thankful for what has and what will happen with Quinn. He is getting the right treatment now and that is what matters.

He is healing so quickly it is amazing, even Dr Waner was surprised at how fast he is healing so that must be a good thing!

Here is a pic I took in the Toronto airport today,natural lighting is always my preference for photography and it gives a real look at how things are coming along.

Now it is time for a nap, I am exhausted. I do not know how some people spend so much time in airports without going nuts.

Ps after the ride to the airport we had in a cab this morning by an indy racecar driver I definitely give the prize for scariest rides and worst drivers to the New York taxi drivers. The Cancun bus drivers come a close second but I never had to close my eyes for that. Today I was convinced Quinn has a guardian angel riding on his shoulder because that was the cab ride from hell. Granted they have talent with regards to weaving in and out of traffic and cutting people off but OMG my mother is going to have to be blindfolded when she comes with me in June.

Here is the pic of Quinn. This week I need to work on all of my thank you cards and hopefully get them all out without missing anyone. Tom and i thank you all for your support and generosity because it truly is unreal how expensive this trip was, we could not have done it without the amazing generosity you all have shown our family. Thank you so much for being a part of this miracle.

SURGERY ALBUM

2009-04-23T23:35:00.000-04:00

Surtures Are Out, First Look At Quinn's New Lip

2009-04-23T21:28:00.007-04:00

Quinn wants you to see his new lip! And to think so many doctors said it could not be done. My son has an upper lip WOOOOOO HOOOOO The final result won't be evident for months but he has a lip and I have been kissing him all day!

Here is his new right upper lip, he has not had one since he was 2.5 weeks and what he has now is more than he was born with. I know he has a ways to go surgically but he is looking great! We are thrilled and grateful for the results he has had so far. His healing is amazing and we thank you all for your support and prayers. They have been heard!

Pics From 5 Days Post Op

2009-04-22T12:11:00.007-04:00

Quinn is doing amazingly well. He is healing so quickly and this morning we can barely see where the fraxel laser marks were. They were feeling really dry the other day so we bought some aquaphor and it worked it's magic,that product is amazing. As directed we are using Bacitracin on the incisions. He is looking amazing, way beyond what I dared hope for for him. I was playing with my photo editing program yesterday to see what he will look like without the stitches and I ended up in tears. This operation truly has been a miracle for him and after the next one the hemangioma nightmare will be all but over and we can focus on what we really need to with him.

Yesterday we went out for the day on a walking tour and ended up in the big Macy's. I have never ever seen a store like that in my life. 7 floors? An entire tie department? We went to say we had been there and I have to admit when we reached the high end shoe department I just had to touch some of those shoes as Tom shook his head. Hey I am a woman. I walked into the Louis Vitton room just to say I did.

Tom caught me wandering through the little girls section admiring all of the pink frilly dresses and quickly redirected me. I admit some days I would LOVE to have a baby girl, but I love my guys more than anything.

We took Quinn for lunch in one of the restaurants there and he demolished a grilled cheese and fries. The prices were actually not too bad in there. You really have to watch because where we are in times square,all of the brand name restaurants have their prices seriously jacked up, which we learned the first day when we ordered from applebees. I do not eat fast food, it literally makes me very sick. But with these prices I had my first McDonald's in years the other day (along with Imodium and gravol)

Quinn is not a fan of window shopping and we went to find him shoes in the sketchers store but left because he hates being in a stroller in a store. That is why he likes WalMart because he prefers the cart. I bought him a NYC taxi cab toy yesterday and he is loving it, he slept with it under his arm and has been driving it all over the place today.

I found Ryan the perfect shirt that says New York Correctional Institute Inmate#...... One look and I knew it was the one for him. Tyler got a CSI New York tee, it is so cute. So I guess you all want pics of Mr Handsome (who will be suture free tomorrow,can't wait!)So here they are.

Day 3 Post Op

2009-04-19T22:59:00.003-04:00

From The Big Apple Here Are Pics From His 3rd Day Post Op, Still Doing Well and is His Silly Self No Pain or Complaints, What a Kid!

Photos To Date In New York City

2009-04-18T21:22:00.003-04:00

The Day Has Come

2009-04-16T08:53:00.002-04:00

Wow, it is hard to believe that this is the day we both longed for and dreaded all at the same time.

It truly is a double edged sword in that we fought to find help for him but we are sad to have his appearance change. Last night he sat with me eating Pirates Booty (Wyndi I found some!!!!!!) and I just wanted to take in every inch of his little face because I will miss the things that will change.

What others might see as flawed I see as beauty and strength.His face is a reminder of what he has overcome and how strong he is. Like I always say, our scars tell our story.

I am surprisingly calm and at peace today and I thank those who have offered prayers that, that might come to Tom and I. I am nervous naturally but my biggest concern is his comfort afterwards. There isn't going to be much of the right side of his face that is untouched. I know he is going to look rough and I have been preparing myself for that.

Our family motto has been BELIEVE and to walk into my house you would see it in many places, a constant reminder to remember where we have been, not to live in the past but look to tomorrow and believe that there are answers even when someone says no and that once you have been to the bottom you have nowhere to go but up.

Today is a new beginning of sorts for my little butterfly. Most of us have always seen the beautiful brave boy behind the "mask" and someday soon people will look at him and see Quinn,the boy.

I am looking forward to one day soon seeing two open blue eyes and a mouth not restricted by heavy scarring.

I am going to miss the "old Quinn" and I was very sad yesterday as I studied his face but I know we are doing the right thing.

Surgery is between 1:00 and 1:30 and he will be monitored in the PICU overnight. I will update what but details and photos will likely be tomorrow when he is (hopefully) released.

Please also say a prayer for my Aunt who is having surgery today at 11:00.

xoxo
Jen,Tom and Quinn

WE HAVE THE ALL CLEAR! WOO HOO

2009-04-14T19:00:00.004-04:00

Cleared for surgery and ready to go for Thursday afternoon!

We met with the wonderful Dr Waner (okay seriously he has been elevated to rockstar status in our family) today and I finally got to meet Sherri Foster who runs the Waner Foundation and has set everything this week in motion. She is amazing and I cannot say enough about her and what she has done for my son.

I was SOOO nervous about seeing Dr Waner again because in a million years I would never be able to thank him enough. That is the thing about him he is so kind and gentle and he is not doing this for any other reason than to help a child nobody else would surgically. He is more than just Quinn's hero he is our miracle. All of the nonsense we had to go through has lead us to the man who will help Quinn and who is the best in the world.

He has such a way about him that puts you at ease, this is all he does and he knows more about hemangiomas than anyone, surgically there is no better option. He is brilliant and kind, the combination of qualities in a doctor that in a situation like this make it a whole heck of a lot easier to hand over your young child.

He is going to do a number of procedures on Quinn but what he is going to do is have him sedated, examine him while he is under, make his final decisions and then come out and tell us what he thinks should be done. AMAZING. A humble man, brilliant mind and gentle soul.

Walking into his office it is obvious how adored he is by both children and parents alike with plaques and photos made by families who have been treated by him. The number of Christmas cards hanging in the office was astounding as were many of the before and after photos.

My son, you know the one with Autism, LOVED Dr Waner and had tons of smiles andeye contact with him. I swear he knows that man is about to change his life. Nobody could convince me otherwise but to be in that room and see the way Quinn looked at him, he knew there was something special about Dr Waner. Boy is he right.

Surgery will be sometime Thursday after 1:00 pm. I am much calmer after seeing Dr Waner but ask me again on Thursday.

Tomorrow I think we are going to bring Quinn to the Museum of Natural History. They have a butterfly conservatory there and you all know how I call Quinn my Gilded Butterfly. I have always wanted to go to the museum and what an opportunity of a lifetime.

On our way in yesterday we saw an aircraft carrier in the harbour and there was a stealth fighter on it. You don't get to see those to often! Well I guess the point is not to right? We want to go back down there and try and get some pics for the boys who would FREAK if they ever saw that.

Tom is really sick right now, he got a rebound thing somehow so he is asleep in the chair and Quinn is happily bouncing around the room, God that kid loves hotel rooms and travelling.

Just don't ask about the bloodwork that he had taken at the pediatrician's office after we saw Dr Waner, OMG. I closed my eyes because I have a hard time seeing how terrified he is of being held down.

PS the third cab driver we had today topped anything I have ever seen in my life, even the bus drivers in Cancun. CRAZY BUGGER. I kept thinking my poor mom will have a heart attack in June when she comes with me for his next surgery.

Now I am going to people watch. I can just barely see the Letterman sign from the window but have a pretty good view of Broadway. Time to chill out. The feeling of hope I have today is amazing and I feel like a boulder has been taken off of my shoulder.

Thank you all for your best wishes and prayers, keep them coming, the surgery and the healing we will need them for those so much, and for Tom and I to keep it together.

From Times Square (sorry no dick Clark or Ryan Seacrest here)
Jen,Tom and The Very Very Mighty Quinn
xoxo

Greetings From The Big Apple

2009-04-13T20:50:00.004-04:00

Well we made it here safely. What a long day tv interview in the morning, flight to Toronto, layover for 2 hours then delay and then runway delay and crazy crazy taxi driver. He must be a stunt driver on his days off OMG.

The hotel is pretty good, can see Times Square from here. The rate we got from hotwire was good but you have to pay extra for EVERYTHING, can't even use a Canadian calling card, they want you to call direct. Internet 15 dollars a day, no thanks, it is free in the lobby so tomorrow we go wireless.

Quinn was awesome as always, loved the trip and the planes and the take off and landings and wanted to hold my hand, what a sweetie.

Tomorrow we see Dr Waner and then a ped for preop clearance. I am getting nervous, or rather a bit terrified. I'm sure I will feel better tomorrow after seeing Dr W, he has a way of making you feel so at ease and I am anxious to know exactly what he is going to do. Tom doesn't want to know but I do so I am not shocked when I see him afterwards.

Leaving Tyler and Ryan today was so hard, Ryan was so upset it litterally tore my heart to shreds. I hate this part I would love for them to be able to experience New York as well but this is not a good situation for them.

Well I am exhausted and tomorrow is a long day so good night from New York!

A Quick Update

2009-04-03T15:01:00.004-04:00

I just want to say a huge thank you to everyone who attended the fundraiser for Quinn, we had a great time! I have many other thank yous I have to get out to people who have sent donations as well. HUGE thank you to my mom and Liz for all the hard work and organization, I especially like the display of Quinn and the doctors my mom made, that was amazing. Quinn discovered he like watching pool (that's our boy!)Thanks to Karin for helping with the 50/50, it was great to see you in person again!

I was starting to feel ill that night and sure enough I am as sick as a dog right now, as is Tom. I only got three pics on my camera but my mom took some so once I get those I will post. Here's one for now, and I am even in it. The boys were off playing with other kids so unfortunately they are not in it. Can you tell Quinny needs work on his eye?

I want to send a HUGE congrats to Tom's sister Anne who worked her but off for the last few years working full time and taking online classes to get her BA and then apply for teachers college. She found out yesterday she got in! Way to go Anne we are all proud of your hard work.

We have run into a glitch trying to find accommodations the apartments are booked and the price of hotels in Manhattan, OMG There may be a studio apartment available and we are hoping because it is 100 dollars a night.
1100 is certainly better than 3300 at a hotel. If anyone has any ideas or knows of a hotel that can be talked down for prices let me know, I am not above begging at this point!

We leave in 10 days. Wow this really is happening.

PS CTV is coming here next week to interview us(yikes)and then follow Quinn at his therapy session.

Thank God for my doctor and his little white pad of paper!

And Now For The JackAss Comment of The Day (About Quinn)

I've seen some ugly ass babies in my time but man these are award winners...

EDITED: My big boy Ty just came home with Student of the month WOOOOO HOOOO! I am so proud of him. He got his report card yesterday too and all I can say is WOW. (Kindergarten doesn't get one this time of year so nothing for Ryan)

Quinny Update

2009-03-23T12:46:00.000-04:00

But first, that comment. I have refused to let it get to me because it was obviously made by someone who is very unhappy in their own life and felt the need to take it out on a little boy. We have always taken comfort in the fact that many more people love and support Quinn and see him for the truly wonderful beautiful little boy that he is. One jerk is not going to put me down because the message was ridiculous. So enough of that, I refuse to give it any more thought.

Quinn is incredibly ill right now. He was at the doctor's last week but he has gotten much worse and very feverish with a nasty cough and is lethargic. he was up all night wimpering so I took him into bed with me but he could not sleep with all of the coughing.He has had a cold for weeks with bouts of flu like symptoms here and there but right now he is a hurting little man. The poor kid looks horrible with runny eyes,nose and just that real sick look.

I just hope he is better before the dinner next week and of course by April 14th when he is evaluated for surgery in NYC.

Disgusting Email I Just Got

2009-03-20T23:38:00.001-04:00

I thought I had heard it all from people in regards to Quinn's face but this one, it tops them all.

It's an abomination!
It was sent from the pits of hell to swallow the souls of all mankind.
It must be desroyed!!
BURN IT WITH FIRE!!!!!

So It Is Not Working.......I've Been Thinking About It

2009-03-20T22:18:00.003-04:00

But more in a reflective type of way. I look back at everything this little child has been through and endured and I am in awe of how my strength radiates from someone so small.

I'll be honest if I had to deal with a stroke, a large ever growing red face with huge open lesions,surgery after surgery,a brain tumour,holes in my heart,physical delays,migraines,seizures and then be rewarded with the bonus of regression and Autism, well let's just say there would be a room with my name on it down by the river.

Many people express how sorry they feel for him but I am quick to ask them not to. Instead I want people to see how much growth and fight this child has in him. There is a saying in the autism world "Not being able to speak does not mean I have nothing to say" Let me tell you that he has plenty to say. He is a pretty bright little child and you do not have to spend much time with him to see that.

In a year he has come so far with his Autism treatment and he has a bond with us and his grandparents that is obvious. He has no problem being around people and he accepts change without hesitation. I think he actually enjoys all of the trips to Toronto and hotel rooms. To Quinn there seems nothing better than to be on the open road and watch transports. He has a way of making you think outside of the box.

Quinn is a miracle there is no doubt. The biggest miracle of all is that we were blessed with this amazing child but not a day goes by that I do not remember how close we were to losing him 3 times. He has made me a better person,mother and wife because I am able to live each day for what it is instead of worrying what the future may hold. With PHACE Syndrome we do not know. With Autism we know it will be a long road but I know he is happy and for me that is #1, that my kids are all happy.

There are so many people all over the world who have been following Quinn's journey for almost 3 years and I do not think I could ever say thank you enough.

Wow it was a long road to get to the point where we are actually less than a month away from surgery with the best in the world. It is beyond my wildest dreams and hopes that Quinn have this surgery,and with Dr Waner and Fay.

I still remember July 8 2007 (it was our wedding anniversary) we were in NYC to consult with Dr Waner and he took one look at Quinn and said "I can fix this" He put us at ease in a way that we had never felt and gave us the hope that there was an answer for Quinn. To the many people who made sure this would happen especially Dr Waner who vowed to help Quinn,Corinne,Karla,Linda and Sherri the amazing director of Dr Waner's new foundation. You will forever be in our hearts for advocating for our son and for being there for me each time the bottom fell out.

My world came crashing down when I realized Quinn had Autism, it was like pouring salt on a wound that was a long way from healing. It bothers me that there is still this stigma with the word autism because there should not be. With 1 in 150 children affected it needs to dissapear. My child has Autism and I am proud of him and what he has overcome, it is not an easy world to live in when you have that diagnosis but I always say Quinn has autism, but it sure does not have him. He is fighting it every step of the way.

Today there was a knock on my door and I thought it was Tyler, I opened the door and it was Quinn who gave me his big goofy grin,

I share Quinn's story in hopes that children like him get the proper testing for PHACE Syndrome, the proper hemangioma treatment and surgeries when needed, especially in a case like his where it is not simply a cosmetic issue, it affects the function of his mouth and eye. In the end if it were a cosmetic issue each child and family should have the right to decide, not governments or insurance companies. I am sure if one of them took their own child out and he/she was called a monster it would make them change their minds.

While I know Quinn will never have a completely normal appearance it does not bother me at all because the scars that he has tell the amazing story of the Mghty Quinn.

I am really going to miss his droop eye, puffy cheek and turned down mouth. That crooked grin is all we know. I will always be conflicted about it. I still miss his little red face, not what it meant but how he looked and how warm the hemangioma was to snuggle up to. I do know this is the right thing to do and the earlir the better, especially with the autism. He will never remember these surgeries and everything he has been through but I have it all written down and one day when he is ready I will give it to him. I have continued to work on the book which is the story of our journey together but I have periods where I have to stop because some of the emotions are still raw.

BELIEVE

Jen

(PS I took the obnoxious music player off so it is safe to turn the volume back up)

I'm NOT thinking about it.....

2009-03-18T02:49:00.002-04:00

Nope,not at all. If you believe that I have a horse to sell you too. I can't believe I have a countdown on the blog. Why not remind myself why I am so stressed right now.

I have two new books on Autism I got at Sick Kids but I still can't open them. I didn't buy any to learn about it but how to cope with it because despite the fact that he is doing okay and it could be worse,well let's just say I have my days where the pressure to do his therapy on my own (with Tom) is a little much. I have my days where I too am pissed off that the government is failing children and families with Autism. I am still debating doing some contract work with other children but I really want to make sure I am at a level of healing that will enable me to do so.

I don't know but some days it is difficult to actually know what I am worried about because there is so much going on. The surgery, well it scares me in a way I could never convey and I think it is worse for Tom who won't even look at pics of other kids. He has his way of dealing, the male way. I worry about him sometimes.

I have been working on my secret project to distract myself and the only problem is that I have had a huge burst of creativity and it is hard for me to stop when that happens. Quinn is up coughing so I may as well do something while I wait for him to fall back asleep.

Really I am not thinking about it. Do you believe me yet? Now I am dreaming about it and that drives me nuts because I always remember my dreams. In my dreams the surgery starts but I always wake up before it is done. Go figure. I think that just represents the struggle it has been to get to this point.

No green beer for me, I rarely drink and we never have it in the house. I still have not given up my Pepsi though, my one and only addiction. Diet pop is too sweet for me so I am just going to have to go cold turkey and back to the water again.

Quinn goes to the pediatrican tomorrow for bloodwork to monitor his seizure meds and hopefully that cough is not in his chest!

PS Quinn likes the metallica version of Whiskey in The Jar (which is on that fake iPod BTW) I know it was not working earlier today but I fixed the code and there it is. I even had Quinn dancing.

Speaking of music I hear Ryan singing something today that was not a child's song and Tom was killing himself laughing because he said it was a Pink song. At least he has stopped humming the Star Wars theme. There is nothing like that at 6am. Your door suddenly opens and this voice is humming Star Wars. (of which I have never been a fan, though I thought Luke Skywalker was cute when I was a kid)If only I could recount all of Ryan's deeds and mishaps but I think he would be upset to read about them when he is older.I am prepapred already with ammunition when he gets married though, oh boy will he be in for it.

I think he is finally asleep so that is my cue to do the same.

Bonne nuit mes amis!

Happy St Patty's Day!

2009-03-17T04:30:00.005-04:00

I know what the heck am I doing up at 4:30 am? Well I assure you I am not drinking any green beer, though maybe that is what Quinn needs to sleep (kidding of course) I wonder how many people named Quinn have had too much green beer on St Patty's Day?

Quinn is still not feeling well but he is better and AWAKE jumping in his crib. I have 2 irish shirts for him to wear but I think I am going to stick with the one that says "Not Lucky, But Cute" Hmn....somehow that suits him. I was listening to him bounce and all I could do was laugh. I put a few irish songs on a flash mp3 player. You are all lucky because I did have Metallica's version of Whiskey in The Jar first but I thought better of it. I love that version the best, I am part irish but hey I will always love my Metallica, even as a mom of 3 half way to 70.

I don't really know what ended up on here because I am half asleep, but enjoy it anyways!

Slacking With The Pics

2009-03-11T15:31:00.006-04:00

Or so I have been told. I have been so busy lately that even my camera is feeling neglected. I did not take a single photo this last trip to Toronto, which is unheard of for me. BUT I do have some from the trip right before that one which are really cute. They were taken at Tom's sister's house. I like them because they show the relationship that we have. My little buddy.

In Toronto Sick Kids Recap

2009-03-07T05:13:00.003-05:00

I apologize to anyone who also read this on the carepage but I just cannot type it all out again.

Prayers to Mercy who is is hospital beginning propanolol and being closely watched,poor little muffin has a stomach bug, Hugs to you Mercy and Carri!

Neurosurgery: no such luck getting discharged by Dr Taylor but the good news is that the hemangioma has not changed. He also cleared up a piece of info that we were told before, it has NOT shrunk and he does not think now at this point that it will. He said you would be surprised how many people walk around with brain tumors are do not know it because they are not affected by it. He thinks it is there for good now unfortunately and is going to scan him yearly to monitor it. If it does not move, grow or affect his hearing or paralyse the right side of his face,it can stay. Trust me folks when I say leaving it alone is better than the alternative which would be removing Quinn's already small cerebellum to get at this hemangioma,oh after part of the skull was taken off. So,well that was a bit blunt sorry about that. it's good news even if it wasn't exactly what we wanted to hear in all other PHACE cases I read about with these in the same area they went away so this is a little odd. But the good news is no growth and no surgery needed. THANK GOD. I could not handle the idea of that one it is way too disturbing.

Stroke: The highlight was seeing our PHACE friend Georgia and her mommy,she is the same age as Quinn and she looks and sounds great,what a cutie.

His evaluation was um less than calm. The autism part of Quinn came out to play today in a big way and he was rather po'd that we would not keep letting him leave the room,walk way down the hall and then stand and watch the elevator doors open and close for hours. It was kind of funny because he was a man on a mission and he knew exactly how to get to the elevators.

The MRA actually was done by request of the stroke team. They are so awesome! Anita his nurse is just the best. We saw a different doc today, his name has slipped my mind, the fellow as well but we have seen he quite a few times.

I almost fell of my chair when she said the MRI was unchanged,just the one artery that is hypoplastic......WHAAAAAA. Okay I think I asked her to back up 3 times while it sunk in, how did I not know this before. His right anterior cerebral artery is smaller than it should be, but the blood flow is fine through it. I am going to have to look into this one a bit more but this is a congenital thing and many of these arterial anomalies can be present in the normal population. It is under the A of PHACE though but I wonder if it was part of the criteria 3 years ago? Oh well I guess he does have an arterial anomaly after all. What does it mean,well the aspirin will be his friend for life.

This doctor was good and he was real because he was honest and said we really don't know what will happen. Things like aneurysms and calcium deposits are part of PHACE but secondary phenomena right so how do we predict which children will develop those issues. If Quinn's MRA is unchanged next year they are going to consider his risk for progressive occlusive arterial disease low, but not eliminated. Kids like Quinn will be followed and they will help predict PHACE outcomes for future kids.

FYI Sick Kids now has over 20 PHACE patients, uncommon yes,rare no. It is sad it made me really sad to hear that Quinn was #4 in 2006 and the first boy.

The issue with Quinn's legs and the venous pooling is very concerning to them and they are glad he is having a full MRI to see what other issues he may have in a vascular sense.

As for his walking, they are happy of course but said he needs lots of PT because of his increased tone and tightness. His steps are very small and jerky. He needs way more stretching activities to loosen him up. Getting him to run one day is a big goal.

The migraines and seizures are going to be looked into again but he said it is a really hard situation with Quinn's Autism so there will be a lot of trial and error.

I felt like a tool when we talked about his hyperactivity with the new drug and he said it might be the red food colouring in it and I almost slapped myself because I do not allow him to have any red food colouring and here it is in the red med I have been giving him and it did not dawn on me.

Quinn's waking every night is a mystery but they think it could be him trying to avoid seizures,but the lack of sleep he is getting is a detriment to his development. They cannot believe he is not cranky all day with such little sleep.

As I was typing this Tom went to get ice and Quinn who has always been afraid of toilets dunked his arms in the one here, (GROSS!!!!) Tom walked in the door and there was water all over the place. Bad mommy but I never expected him to go near something that usually terrifies him. He is full of surprises that one.

So I am mentally and emotionally exhausted from today,it may be hard to understand if you have not been there but I have nothing left today,Tom is already asleep and I am right behind him. Some good things today and some not so good glimpses into our future with Autism. For me that one is really hard,these appointments are truly terrifying for him now.

So I am singing off because I am not good company tonight the stroke and autism,seizures,migraines, all the neuro stuff are hard to deal with some days,really freaking hard. Tomorrow is another day and we will make it a good one but I am ready for bed! Goodnight from Toronto!

Jen,Tom and Quinn

PS Quinn just finished watching Wheel of Fortune and during the commercials he was ticked off. All he wants to do is watch the wheel spin and I want to do is hear that Pat Sajak has retired his big annoying wheel.

It's a Done Deal

2009-03-02T20:20:00.002-05:00

I never thought I would be writing that but have dreamed about writing those words for a very long time.

After a very long battle trying to get surgery here in Canada we were told that Quinn's case was too complex. There is more to the story but out of respect for the many good doctors who treat Quinn I will leave it at that. Those of you who have been around for awhile know Quinn's long story and what it means to us for him to be finally having surgery.

Quinn is having surgery with Dr Waner and Dr Fay on April 16. We will be in New York from April 13th until the 24th and I hope to be able to meet some of you during that time.

We tentatively go back in June for his second operation.

I am excited this is happening but I am getting very nervous because he is having quite a bit done so he will be in rough shape. I am totally confident placing Quinn in their amazing hands and incredibly grateful that this very long and bumpy hemangioma road is beginning to get shorter.

I still cannot believe this is going to happen. If this is a dream don't wake me up.

One day someone in Canada is going to get with the program and change the face of complicated vascular tumours, I don't mean the derms but those other guys who hold the cutting instuments. Our kids deserve help too.

To those of you (you know who you are) thank you again and again for advocating for my son over and over for almost 3 years.

Love and hugs to you all
Jen and The Mighty Quinn

Jen's Tips For Raising Children....Tip #1

2009-02-26T13:42:00.003-05:00

Jen's Tips For Raising Children....Tip #1

Do NOT under any circumstance leave any kind of electronic toy in the crib at night.

Especially do NOT leave any said toys that are losing battery power as at 4:00am when the child decides to play with the toy it will scare the crap out of you.

These toys sound nothing short of demonic in nature and amplified by a baby monitor will strike fear and confusion in the entire household.

You risk 5 and 7 year olds running around terrified of some unseen monster.

The only solution once the madness has taken place is to take the toy out of the child's room but you risk a meltdown and further loss of sleep.

The bottom line is that electronic toys have no place in a crib and a room with sound amplification.Or do like I do when Grandparents purposely purchase these noise makers, let the batteries run out of power on purpose. I am a bad mother, I know.

This is the little culprit right here! Just to warn you those V-Tech ones are the worst when they are running low on batteries!!!!

Ask Google for a Childhood Stroke Awareness Day Doodle

2009-02-19T05:39:00.002-05:00

1 in 4,000 newborns and 6 in 100,000 children are diagnosed with childhood stroke which typically results in hemiplegic cerebral palsy. An undetermined number of unborn babies are also diagnosed. Many go undiagnosed, have delay in diagnosis or are misdiagnosed. Help us spread the word...so we may find better treatments and preventions to help families all over the world affected by Childhood Stroke.

We kindly request that Google light their home page doodle in purple with the purple childhood stroke awareness ribbon to raise awareness for National Childhood Stroke Awareness Day this coming May 2, 2009.

Please add your name to this petition and tell as many people as you can about it.

P.S. You can see examples of previous doodles on this page:
http://www.google.com/holidayl...

CLICK HERE TO SIGN THE PETITION

Petition sponsor
The Childhood Stroke Awareness Campaign is sponsoring this petition in an effort to raise awareness that Kids Have Strokes, Too! It is sad to hear people say "I didn't know infants, children and unborn babies could have a stroke!"...Help us spread the word so we can find better treatments and prevention to this life altering disorder.

To learn more about the Childhood Stroke Awareness Campaign visit http://www.childhoodstrokeawar... and www.KidsHaveStrokes2.org in addition to the sites listed under the links.
Links

www.chasa.org
http://www.KidsHaveStrokes.org...
www.hemikids.org
http://www.childhoodstrokeawar...
http://www.KidsHaveStrokes2.or...

Quinn in 20 Something Years?????

2009-02-05T01:13:00.001-05:00

If It Wasn't For Bad Luck......

2009-02-04T11:44:00.000-05:00

Right now Quinn and I are sitting in the lobby of the hotel because, are you ready for this one.......the car won't start! It is VERY cold today and we think the battery needs to be replaced, at least I hope that is all it is. The guy working at the hotel thinks it is the starter but don't think so. Thank goodness we renewed our CAA yesterday because we need them today.

Have I ever mentioned that each and every time we travel in the winter something happens, either a blizzard or a flat tire or a breakdown.

Oh well. kind of reminds me of the tee I found Quinn for St Patty's Day it says "Not Lucky, but I sure am cute"

Mom if you are reading this I hope you are having fun in the sand and sun and have one for me please, a big one.

Anne if you read this can you tell your mom if you are talking to her that there is no way we will be back in time to get the boys from school! Thanks so much! We gave up the cell to save money which I now think was a bad idea.

We are supposed to pick our dog and my parents dog up from the today but I think they may be guests for another night.

Okay this is almost funny now, well at least in a few days it might seem funny.

The good news is we got 125.00 for the taurus from the wrecker in Hamilton! .

So how is your day!??????

Posting From Hamilton

2009-02-02T16:10:00.000-05:00

QUINN'S BEST BILLY IDOL LOOK

HANGING AT AUNTIE'S

IT'S BIGGER THAN IT LOOKS, REALLY.....

THE VERY FINEST IN MRI FASHION

WHAT A SWEETHEART THIS KID IS, I COULD KISS THOSE CHEEKS ALL DAY!

There is never a dull moment with us, that is for sure. If you read Quinn's carepage you will likely know about the blown motor in the car. To make a long story short while we were driving up a steep hill on the 403 just inside Hamilton the motor blew. Have I ever mentioned that I hated the 5 years I lived here? Thank goodness we were actually in hamilton where Tom's sister lives with her hubby so we did not have far to go.

The estimate for the repairs far exceeded it's worth and as the mechanic said "and that's just what we can see on the outside" "once we get in it may be another story" Those of you familiar with Canadian Tire know how lovely their bills are.

Half an hour later Tom and I were looking at used cars. The good things about hamilton is that the prices are very good, some have high communting mileage but we lucked out and found a good deal on a 2000 Kia Sephia which will be cheap on gas because it is only a 1.8 and it is stick so I am happy about that. I miss driving standard. It definitely has more coolies than the taurus did.

The Plastic appointment was cancelled because to make another long story short the surgeon is not able to do that kind of operation. We are sticking with Dr Waner who truly is the best and really the only option that we can have for Quinn. Thank God for that man.

The MRI went well though I was upset that they did not do the MRA or MRV (kind of important with PHACE) I guess whoever typed the order left that out. So we will have to get that done at home.

Quinn has been having a good time here with his Auntie Anne and Uncle Chris and I am posting a few pics of the last few days, including one of the car. OOOOOOh I know big deal but I know my mom will want to see it. It was covered in salt after we test drove it so it doesn;t look that great but it is immaculate inside and out.

Boys Never Like Colouring Until That One Day They Realize They Can Make A Lifesize Mural Above Your Sofa!

2009-01-26T05:00:00.007-05:00

Snow :( I'm Glad They Like It......

2009-01-21T09:41:00.002-05:00

View of The School From Our Front Door

My Son Is AMAZING!

2009-01-14T02:08:00.003-05:00

Sorry I am not around too much during the day, I do Quinn's therapy all morning and then the kiddies are home at 3:00.

I just have to give an updaye on him because he has come SO far since he first regressed into Autism hell (sorry it that offends anyone)

He is doing all kinds of puzzles with no effort needed at all and sorting colours and shapes, he is defying so many odds that I knew he would!

Socially he is beginning to do things to get a reaction out of us again (which he lost last year) today he pulled on a hat over and over and looked at us smiling to see our reaction. Then he picked up the cord to the computer (not plugged in, and gave me a smirk while he pretended to touch it. That is UNREAL in Autism and he was not doing that (performing for reaction) at his assessment. He also comes over to me and grabs my hands to get me to sing and he does all of the actions to quite a few songs (with my hands though)

He is coming back to us, slowly but surely we are seeing that cheeky personality come back. Autism may not be cureable but he has recovered somewhat, socially he is doing well.
He is defying odds again. 75% of children with Autism are considered mentally impaired, at this point he is not, his team actually thinks he is above average in intelligence (amazing I know) Children with the regressive form of Autism do not tend to have a very positive outlook recovery wise and he is exploding with growth.

I have to tell you, all the years I have spent working with children were extremely rewarding to me because the little bits of growth you get, you appreciate so much. Of course I never anticipated my own child would have Autism but the work I am doing with him is the most rewarding experience of my life because I see little miracles each and everyday. I truly feel that my life has lead uo to this and that he was given to me for a reason. We have a cool bond and he is a super snuggle bum now with us, walkign all over the place and dancing to the wiggles shaking his tiny butt to the music and looking at me until I start singing the words and then grinning like he won the lottery when I do.

In Autism getting into their world is what I have personally always felt is a first vital step, getting in there, being silly, connecting and then yanking them out into ours. He has one foot out the door right now.

Communication is a big thing and will likely be his biggest issue especially if it is also affected by the stroke. I test his receptive communication non stop and it is there let me tell you! He is even learning tone, of course I have to exaggerate it but he is getting it. He has learned no for sure.
Verbally, well he is still non-verbal but he babbles and makes all of the sounds he needs to and should be able to at this stage in development. A high percentage of children with Autism never speak but the little blabbermouth we have has it in him somewhere and we are going to help him get it out one way or another and then look out. If he talks as much as he babbles OMG are we in trouble!

Anyways I needed to have a very proud mommy moment here to share my son's amazing growth and to tell you that I have the word BELIEVE everywhere in my house because it has been our family motto since day one (well day 32 when he was diagnosed) The belief is in my son who has overcome mountains already and will continue to.

I am so proud of you my sweetie!

PS WE HAVE FINALLY GOTTEN HIM TO USE A SIPPIE CUP AND NOT A BOTTLE WOO HOO!

It was driving me nuts but we were advised not to push it as it was his only comfort item. He now takes comfort in a cup.

Sleigh Ride Pics

2009-01-12T11:07:00.006-05:00

Click Here To View The Newspaper's Slide Show

Sleigh Ride Today!

2009-01-11T07:19:00.002-05:00

Now this should be interesting, and fun of course! This is the first kids party Tyler has had some I am a newbie at this. I thought a sleigh ride would be different and in the spirit of cold northern, snowy Ontario. There is a little petting farm there as well so it will be fun for the kids. After the ride we have use of the old church which is wood stove heated for two hours so we can have the pizza and cake there. I hope to be able to take lots of pictures! Quinn is felling better so hopefully taking him out in the cold will not end up being a mistake. I want to put him in the snow for his first time ever (not sure he will like it) and we have a sled for him if he doesn't want to go on the sleigh ride. I think I will take him on it anyways and I am sure as things get going he will love it.

Tom wanted to do the invitations for Tyler's class but he forgot to put the RSVP on there so I have NO idea how many kids will even be there! I will post pics tonight. The kids are so excited they have been awake since 5:30 this morning.....

Happy Birthday Ty!

2009-01-09T23:11:00.007-05:00

Tyler 18 months and Daddy (pregnant mommy hiding behind camera)

My Day,my 2 brothers,Tom and Tyler (11 months), the last year they actually supported the Leafs

Tyler 19 Months Terrified of the Water Play Area Of the Park (His Famous POUT)

Tyler (About 20 Months) Helping Sam's butt grow bigger and bigger

I know every mother says this but really I cannot believe my oldest son Tyler is going to be 7 in the morning. It makes me a little sad but at the same time I know how much of a blessing he has been to me and our family in so many ways. He came into this world in dramatic fashion and we almost lost him but he fought like heck and was in my arms within 3 days.

We had him when we lived in Hamilton. To say that he was a beautiful baby is an understatement, he really was adorable. People stopped us everywhere we went to oogle him and as a first time mom I loved every second of it. It wasn't just that he was so cute he would smile at everyone that came up to him (as a baby that is)

Tom worked crazy hours back then and many days it was just the two of us out to explore the world in a city where we knew nobody but we always made it fun.

Tyler started talking very early and he amazed everyone who met him, he has always been like a sponge, very bright but eager to learn. He has an absolute true photographic memory.

He has always taken care of Ryan, right from the beginning and the two are so close that they adore each other 95% of the time, the other 5 percent, well they are brother on 22 month apart in age.

With Quinn he has always been amazing, there has never ever been one negative vibe form him towards Quinn (well except for the stinky diapers) He truly would do anything for Quinn.

Tyler wears his heart on his sleeve and is incredibly sensitive (no idea where he got that from) and never wants anyone to be upset with him (again where does he get that from I wonder?)

Our favourite book is LOVE YOU FOREVER by Robert Munch and to this day it makes me cry each time I read it (as as I am typing about it, I guess I am sensitive too)

I never did have a girl but Tyler is my one who is fun to dress because he really likes clothing (okay my fault I know) He fits the preppy style very well and well is is great to dress and can pull off anything. We have been told many times to get him in modelling but I am not for that at all. Lots of people call him "Little Pitt" as in Brad Pitt and I just laugh. He is pretty humble about it if he has caught on thank God. I know the girls are interested and walking him home hearing "BYYYE TYYYLER" is downright hysterical.

Last week he asked me if I thought he could be a rocket scientist or a "robot maker" I just told him that he will be able to do whatever he wants to if he always remembers to keep his eye on the ball.

High school will be interesting but I know he will do very well, well maybe as long as he does not follow Ryan's lead. That is a whole other story but FYI when Ryan was 2 weeks old we nicknamed him the keg master and believe me it fits.

Anyways I realized what had me down this week and it is my biggest baby turning 7, as he put it today he is not a little boy anymore, he is a big one. He still hugs his mama all of the time (in fact they now fight over who gives me the first hug) When I read him the book tonight (through my tears I told him I will love him forever but he still has to hug me everyday of his life!

Here are a few pics I found that were actually scanned at some point. We did not have a digital camera until Quinn was born so I have to scan more pics at some point.

Santa Baby

2009-01-08T15:18:00.006-05:00

The Blog has Been Sick

2009-01-03T03:22:00.002-05:00

With a Big Bad VIRUS. I am still not sure what happened but I think it was a template I was using. I am going to go back to making my own I think.

Because of all this the blog is a little screwy and I will have to work on it this weekend to repair everything. i have reverted back to the blogspot address www.themightyquinnduncan.blogspot.com for now while I work on his website as well. I shall have this ready to go again soon!

4 Down One To Go

2008-12-26T08:02:00.003-05:00

Unfortuntely our house resembled a hospital ER more than it did a family home during the holidays. Not only is Ryan sick, but so is Tyler,Quinn and myself. Sick being, really sick.

Yesterday morning when Tom came home from his night shift he woke us up and we wet down. Apparently I amde it 15 minutes before I feel asleep on the couch snoring (which I don't generally do unless I am sick. I felt like a horrible mom afterwards.

Somehow we made it to my mom's for supper but had to leave an hour later because Tyler was so ill and I was on my waying to throwing up again. Ryan who was a little better cam with us and Quinn stayed to spend time with my family, that is until he developed a nasty fever too.

Ryan,Quinn and I fell asleep on the couch together trying to get warm from the fevers.

Merry Christmas!

2008-12-23T05:46:00.002-05:00

Hope you like Quinn's new picture! He actually let me take a few photos of him today shirtless which I have been wanting to do for a long time. I love pics of little guys in jeans and bare feet. The hat was of course added later because that would never happen otherwise.

I am glad I told everyone to kick me because today Quinn walked over to the tree and sat in front of it. He stared at it with his head tilted to the side then reached up and grabbed an ornament. What got me is the ornament he grabbed is his special one. Of all the ones on the tree he picked up the one I bought for him while he was having surgery to remove that broken PICC line from his heart. It says Believe on it. I kid you not, he handed it to me and then took my hand and pushed it towards the tree to get me to put it back on. That is as close to putting his first ornament on the tree as we can get! WOO HOO! I was in tears because it was almost as if he was reminding me to Believe. It was quite something I tell you.

He is definitely making attempts to communicate. The most common one is when he wants a drink he brings (or even tosses) his cup to or in our direction. He then toddles along behind us to the fridge.

I think my mom hooked Quinn on chips in Houston and he has been obsessed ever since if he sees something that even remotely resembles a chip bag. We caved and bought some for the kids as a special Christmas treat and put them in the pantry. I was tending to a very sick Ryan (a whole other story)in the livingroom when in walks this short little 2 year old literally hugging a big bag of chips and walking towards me. I nearly passed out I was laughing so hard because he was very serious about the bag of chips. He wanted them pretty bad! Of course he got them.

Later he did the same with a bag of rolls and a bag of Christmas cookies. Each time he would walk into the room clinging for dear life to his bag of goodies. How do you resist that???? Time to lock the pantry though I think.

For the second year in a row Ryan is very sick. The puking,feverish nasty kind of sick. I have had it for a few days but am thankfully getting over it a little just in time for Ryan to get it. Quinn is still up and down with a bad cold and cough and when I checked on Ryan a few minutes ago Tyler had a fever. As I am typing this Quinn has woken up and I am hoping....never mind he is playing, little stinker!

Tyler did not want to go to sleep tonight because of the sleeping situation. We put the beds together (bunk beds) two weeks ago because they are old enough to "be safe" Tyler was very concerned (rightfully so!) that Ryan is on top and has been throwing up. I had not thought of that until Tyler mentioned it and it is a gross possibility. Thank goodness for buckets, just in case!

The kids are excited about the holidays regardless of illness and I love watching them. Ryan has even managed to resist putting baby Jesus from the nativity scene into a rocket with Buzz Lightyear this week, though I did find a little green Alien in the stable with the animals today!

It has been another rollar coaster of a year for us but it has also been one that saw many little miracles along the way where Quinn is concerned. We are so grateful for the love and support you all give to us. We want to wish all of you, no matter what you believe in the best of this holiday season.

With much love,

Tom,Jen,Tyler,Ryan and Quinn
xoxo

Kick Me!

2008-12-23T05:42:00.000-05:00

I am giving everyone permission to do that. The last two days I found myself getting sad over something that I know I shouldn't be but I did anyways.It's another one of those things I hope will get easier in time.

Christmas is my absolute favourite time of the year and watching the joy in my children is the best part. Last year was hard because of how Quinn was, or rather wasn't at the time. We put the tree up and turned on the lights and I guess I just hoped it would make an impact on him. It's almost a selfish kind of thing, wanting to see your kids excited about Christmas, or know they are. I know in my mind he may well be very excited about the whole thing. I know I don't have to lower my expectations (which of course he is not responsible for anyways) but rather "adjust" them. I need to stop looking at things like "he is missing out. A lot of parents with children who have Autism would tell you the same thing, that they long to see that awe that most children have. I know in my mind that feeling the awe and being able to communicate it are two very different things.

So I kind of had to kick myself in the rear and say "stop" I did it the other night at the dance too.
We see so much joy from Quinn at home and in our care of him we are finding more and more ways to encourage him and help him learn to express it. At times it can be easy to set aside that diagnosis and live in denial. When we then get into a social or unfamiliar situation that is too stimulating it slaps us back into reality when we see how withdrawn or anxious he can be. It is hard and I still have a hard time dealing with the loss at times but I have an enormous amount of faith in him and his ability to overcome things.

Today I opened our box of decorations and ironically the one on top was a gold bell that says BELIEVE,from Sick Kids. I bought it while he was in surgery to remove the PICC line that broke and travelled into his heart. I picked it up and put it onto the tree and thought to myself one day he will put this on himself. I hope and believe that one day he will want to put it on himself and will understand how meaningful it is and why his crazy mother has the word plastered all over the house.

As I have said before having worked with children who were on the severe end of the Autism Spectrum and the parents desperate to help them, I have often found myself in a surreal place of irony. My biggest fear as I carried my oldest child Tyler was of Autism. As Tyler,Ryan and Quinn all past the one year mark I breathed a huge sign of relief because most of my clients had a history of symptoms right from birth.

I have this video documentation of Quinn that I put together before his assessment and it was hell because I could see that he was fine until he was 16 months old and then it went downhill so fast after that.

We then had to almost grieve for the personality he lost and come to terms with a whole new and terrifying diagnosis after so many months of, well more hell really. First I had the need for people to see what I was, then I had to get someone to do something about it and just before the assessment I broke down, got really pissed off and the incredibly scared and very very sad.
I am still scared and still sad, though less at times and more at others. Some days there is even a littkle denial or wishful thinking. Others I am able, the good days to see through the fog of my own pain and see what is right in front of me. There is a little boy whom I have always called my butterfly. He was born with broken wings but all of you here have helped lift him up with your love and support and generosity to the point where his wings are beginning to heal and he is starting to use them. Many times he has a hard time getting off of the ground but each time he falls he gets right back up again and never complains. He has taught me so much about inner strength and resolve. This tiny little man with his beautiful crooked grin has taught me to believe in miracles. In him I see an enormous miracle over and over and I see how he has brought out the very best in so many people and to quote an ironic fortune cookie Quinn had last night "You will lighten the heart of many people"

As much as I am scared of the unknown with his PHACE Syndrome and his Autism and everything else, I BELIEVE more.

Sometimes I just need a kick in the pants to remind me. With that said if my son wants to spin in circles or walk around and around, well I will just have to put on Christmas music to set the mood for him! If for hime Christmas is spinning well then heck yeah I will just have to get down and spin with him (it makes him laugh hysterically when I do that)

FYI,We just got notice that Quinn's referral to the new plastic surgeon has gone through and we see him February 3rd in Toronto. I have decided to put that to the back of my mind, along with the fear,scepticism and jaded feelings I have had from other experiences and just Believe that the time for Quinn will be soon.

Thank you to everyone who reads this page and the blog. Each time I log on and see your names I sense your support and love for Quinn and for that we are truly grateful. I hope I tell you all that enough. Thank you!

Message For Auntie Anne and Uncle Chris From Tyler and Ryan

2008-12-17T17:52:00.001-05:00

Make an on-line slide show at www.OneTrueMedia.com

Tales Of Christmas Past

2008-12-17T13:27:00.002-05:00

2006

(in the Cancer Clinic Just Before Chemo)

Quinn and Santa

Tyler,Ryan and Santa

Ryan and Santa

Tyler and Santa

2007

Quinn and Santa at a Walmart on The Way To Toronto

Exhausted After Therapy Yesterday

2008-12-12T23:31:00.002-05:00

2008-12-12T03:28:00.005-05:00

We are so proud of our biggest boy Ty today. He got his first "big boy" report card today. Ryan does not get one for the fall because he is in JK .

We knew his marks would be fantastic but what I like to read are the comments. Nothing makes me prouder than to hear that my son is respectful,polite,considerate,eagar to learn and is particpating well in everything. All the remarks were glowing and I was in tears reading them because it is a good feeling as a parent to know your child is thriving and doing the best he can do.

I am so happy he is doing well in french. We began using it early on so he would pick up some of it and the child is like a sponge. He has a very photographic memory and attention to detail.

When he handed me the report card to read he stood there so worried it would not be "good" and I had to reassure him that everything was great because he is doing the best he can do. His marks were outstanding but we do not make a huge deal out of that because of the situation with Quinn. Tyler can be very hard on himself. He has a lot going for him and hopefully he will come to see that as he matures.

Quinn had therapy today which I was not at because I am sick again with a stomach bug passed on by my children.

This is the first time his PT has seen him for an extended period since he has been walking and we were holding our breath wondering just how well he is doing. It turns out that aside from balance he is doing
well and not walking on his toes anymore. She does not think he will need to wear any assistive devices which was great news.

With his balance she did point out something we never noticed and that is that he walks with his right arm held up to his body. he does not use it to try and balance himself. It is a result of the stroke and the main reason why he had a hard time learnign to crawl, because it kept collapsing under him. His right leg is not too bad at all and he is beginning to turn his foot forward instead of sideways. He still walks like baby Frankenstein but he is improving. He hardly crawls anymore. He falls down a lot but he gets right back up and tries again. He is amazing!

Tom said his OT and PT had him in hysterics today playing with a cookie monster toy that you could feed cookies to. It had a jar that opens and closes and Quinn having that obsession with opening and closing thought it was hysterical. He does the same thing with puppets. He thinks they are very funny.

We have a new oral issue with Quinn we are trying to work through. Through the sensory diet we were able to reduce the licking by at least 80%. Even though I know very well that you can not eliminate one behaviour without replacing it with another I kind of slacked off with the sensory diet because he was doing well. Then, about a week ago he began to chew the sleeves of his shirt non stop. We then only put t-shirts on him and he started pulling the hem up to chew one,driving me nuts. So we are back to the hourly sensory diet giving him all kinds of weird and orally stimulating things. Tom bought him chips (not my idea) and they were all dressed which are very strong and he loved them. Spicy and tangy things do not faze him at all. We give him things like a little ketchup on a spoon, mustard,sweet and sour sauce,crunchy things, anything that will stimulate him and give him what he is searching for with his licking or chewing.

I have to mention Ryan who is such an amazing big brother. He is so proud of Quinn and is his biggest cheerleader (aside from me of course) He encourages Quinn non stop and always wants to hug and sit with him. For the most part Quinn seems to enjoy it and when he has had enough he just pushes him away. The kids have a family Xmas dance at school next week and Ryan is so excited to show his baby brother and his new walking and dnacing skills off. I am not sure how Quinn will handle the stimulation but I think he will surprise us. He tolerates much more than many children with autism,we saw that at the conference where he actually would go over to a group of children on his own. Maybe he wanted their toys but I know him and he comes to us for attention all of the time. He has become so snuggly and I love it. At one time I thought we would never see it again so we cherish it and do not take anything for granted with Quinn.

We don't have the tree up yet and much of that is for Quinn's safety and to give him the room to move around. I don't think he will want to touch the tree (he does not like branches) but the ornaments will be fair game. Next week we will get it up. It is a monster tree 5 feet in diameter and about 8 inches tall. Our livingroom is long and narrow so we will have to get creative. Last year we used an old smaller one Tom's parents have but we are going big this year. We have so much to celebrate.

PS Quinn's blog is now www.themightyquinn.ca. I intend to convert it or add it to his site. The original one quinnduncan.com is finished. As he gets older I want to have a bit more privacy for him using only his 1st name for some things and I really wanted a domain with the mighty quinn in it. If you go to mightyquinn.com you will find a web developer. I like the .ca because it is canadian and we are proud to live here so it fits well.

Speaking of being Canadian, I must go to the US tomorrow to pick up packages at Weirs that I had shipped for Christmas. Hey it is cheaper to ship there. One package in particular I have been waiting for,this computer is about to die. There are 4 thick lines across the screen and it has crashed twice in the past week and I had my browser hijacked a few days ago and obscence porn was popping up non stop. I was having a bird over it but I was able to solvee what my useless security program failed to do. No more pictures of naked men (um they were only men get my drift)
Tomorrow I get my Xmas present that my awesome hubby got me, a new lap top,cheap on Ebay of course! We got the deal of the century and I am so excited. We have not purchased gifts for each other for 3 years now and this years Tom got a decent bonus and we put money away for Quinn's surgery and bought daddy and the boys a new tv. I thin it was more for the daddy though if you ask me. The 42 inch screen is so big. Quinn is in awe and I think we are only feeding his televesion addiction to "Mighty Machines" The first morning he saw it his eyes were huge and Tom kept saying there's my boy who was bouncing watching hockey with daddy!

The theme of our christmas this year is to purchase thing we can do together. We have the TV and between my mom and I we bought the entire Star Wars Collection. Santa is going to bring them a Wii (I swore we would never have anything like that) But it will be fun for everyone, will help Ryan's hand eye coordination and it will be a great incentive (or make that bribe) for good behaviour. We have sleds for the kids and are going to take them sledding or tubing during the xmas break.

Hopefully I can figure Vista out so I can post some new pics soon and some video of Quinn

My Kids Have Been Elfed

2008-12-10T13:46:00.001-05:00

Send your own ElfYourself eCards

Travolta's Got Nothing On Quinn

2008-12-10T10:04:00.003-05:00

My little man danced for the very first time today on his feet. I was so happy watching him dance away and shake his butt, even if it was to the Wiggles. The Wiggles are his new thing. I avoided them for awhile because I was so tired of them after Tyler and Ryan but Quinn loves the music and dancing. He could bounce forever if we let him.

Speaking of bouncing,I ordered a mini trampoline for him which is meant for toddlers and has a bar to hang onto. It is great for balance and coordination....

Want To See A Real Life "WALKING" Miracle???

2008-12-05T00:58:00.000-05:00

I Wish I'd Had a Video Camera On Me

2008-12-04T09:33:00.002-05:00

Quinn and I were working on some therapy activites this morning and he was so cute, he actually had a fit of the giggles a few times. I was thrilled to the anticipation in his face as he waited for something to happen. The eye contact was amazing and he was with me for the entire 20 minutes.

I bought him these special plastic santa cups that I first had him stack one on top of each other, then I would switch it up on him and have him put each cup in side the next. After each task was complete we would knock them all down and get excited.

Then I had him put a bell into the cup a few times, then added another cup to see if he could handle the change and he would choose one cup to put the bell in. Each time he put the bell in I would shake the cup and get excited and he started clapping and giggling, again with great eye contact. I added two more cups before we finished, one more and I would have lost him because he wanted to put it in one certain position. I tired changing them but he always put it in whatever cup was closest to me.

We then just did a fun thing where I sang the itsy bitsy spider and he giggled as I ticked him during the parts of the song where the spider crawls, he was in hysteric, very cute, good eye contact. Each time I would try tp pause just a little bit longer and longer to see if I could keep him with me and if he was consistently anticipating what I was going to do. I especially waited if his eyesight began to waver (only once briefly) He loves this game. I use it almost as a reward and do not do it all of the time (though I would love to)

He's such a cutie and I really enjoy those activities we do together because he does so much. If you just saw that piece of time you would never know that Quinn has Autism,he would just look like a boy playing with his mommy.

2008-12-03T08:57:00.002-05:00

Please sign this VERY important petition to the National Institute of Health for VITAL research that is proposed to study PHACE Syndrome. The study that is proposed is a comprehensive one that will be incredibly ground breaking and so needed for our kids.

Please visit this link and sign the petition in honour of Quinn and his brave journey with PHACE Syndrome. Please Please everyone sign this petition and pass it on. WE really need this for our kids and for Quinn.

http://www.petitiononline.com/NOVA2009/petition.html

Between Ryan and Quinn

2008-11-30T15:18:00.003-05:00

Quinn:(opening the cupboard door and closing it over and over and over)

Ryan:"You're just going to keep doing this forever aren't you?

Quinn: giggles and keeps opening and closing and opening and closing.

Ryan: "You're going to give me a headache if you do this forever, what is so interesting with the cupboard door, it looks really boring to me?"

Quinn: still giggling

Ryan: "Aren't you bored yet? I've had enough, my head hurts" Walks away from Quinn into the living room with his hands up in the air...then says incredulously "I just don't get it, sometimes he does things I just don't understand"

Mom:, unable to speak laughing to hard

My Handsome Ty

2008-11-28T20:14:00.003-05:00

Tyler brought home his school photos today and though I am biased I think they turned out really well, he just does not take a bad picture. He was so proud of his pictures and was blushing when I told him how handsome they were. My little man, he won't be a little boy much longer,in January he will be 7 years old.

We don't have Ryan's yet because he was off sick the last two days but I can't wait. He always has a kind of silly look in his photos but that is Ryan and we love it!

Here is Tyler's pic.

Remember When?

2008-11-28T16:53:00.004-05:00

Happy Thanksgiving to all of our American friends, hope you all have a fantastic weekend!

I have been working on a photo book for Quinn that documents his hemangioma journey and to be honest I have found it really hard because I have gone through all of his photo and after the time has passed I think I have had time to sit back and go "wow" Did that really happen,did my son really go through that and it was so much worse than we let ourselves believe at the time. He has come SO far in this matter it is unreal. Sometimes it is as if it happened to some other family.

It really was bad, really really bad. I look at the photo above and know that he was on the verge of having the entire right side of his face ulcerate because that horrible thing consumed the whole right side underneath.

Many people have asked if the chemo caused his autism and for us it is a non-issue because he NEEEDED the chemo without it he would not be here because that monster of a tumour was diverting so much of his blood supply and growing way to quickly. I don't even want to imagine how big it would have gotten and how ulcerated it would be. He did not respond to the steroids at all.

His hemangioma was so fast growing that his lip began to ulcerate in utero (not a very common thing) When he was born he was missing part of it. I remember being briefly freaked out about it when we got him home but it turned out to be something I wish was still an "issue" for him. When he lost all of his lip we were just stunned but I was too focused on his seizures to care about anything else. I see the picture now and think how could I not have been more freaked out. To me he was my beautiful Quinn.

Looking back on all of this today I am so thankful for the many many people who helped, treated,supported and loved Quinn. His hemangioma journey is not quite over but is instead entering a new phase of repairing what that thing did.

This past summer I took a picture of him that I think captures who Quinn is, the Quinn we know,scars, funky eye and all and to us he is the most beautiful young toddler on earth.

Condensed Version Of A Documentary On Autism

2008-11-28T03:20:00.001-05:00