LONG OVERDUE QUINN UPDATE

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week.

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

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

Love to you all, Jen
xoxo