ASD, AVM, WPW, HHT - our world in acronyms

Our son B is talented, funny and smart.  He loves comics, super heroes and video games. He is genuine, caring and gives the most amazing hugs.  B has Wolffe Parkinson White Syndrome.  He was diagnosed in April 2011 after complaining about a rapid heart beat and severe pain in his chest.  B also has Aspergers Syndrome and rarely, if ever, complains about pain.  At first we thought he may be having anxiety attacks; that makes sense since he has Aspergers. Thankfully we took his complaint seriously and so did his doctor.

We met with a cardiologist in October and decided the best treatment to correct Brenden's accessory pathway is by non invasive Surgical Ablation (not open heart surgery).  Given my diagnosis of an AVM in my brain it was decided that B should also be tested, just in case. 

A couple of weeks ago B had an MRI on his brain and has been scheduled for further testing on his heart and lungs.  On Monday I received a telephone call from Sick Kids Hospital confirming an appointment to follow up with a Neurologist.  I knew that meant one thing... they found something wrong.  On Thursday at a regular pediatrician appointment I read the MRI results myself.  During the MRI it was discovered that B too has an AVM in his left frontal lobe measuring 12mm at the largest point.

Instead of ME having an AVM (congenital, 1% of the population); WE have HHT, Hereditary Homorrhotic Telangiectasia (tel-AN-jee-eck-TAZE-ee-ya). Somehow hearing the worse news ever is so much more devastating when you hear it about your child.

For the past year I have been on an emotional roller coaster ride of questioning, testing, diagnosis, treatment, unpleasant side effects, anger, fear, and hope.  Now I know why...  IF I had never been diagnosed, then we would have had no reason to do further testing on B.  Without further AVM testing his cardiologist would have gone blindly into treatment.  Treatment that could have potentially some very serious risks.

So what now?

• Inform all members of my immediate family.  What they choose to do with this information is up to them.
• Meet with a Neurologist at Sick Kids Hospital on December 5th. See the MRI images and start making a plan.
• Back to Toronto for further testing on B's heart and my brain before Christmas.
• Meet with a my geneticist and a new one who works with children to explore how deep this runs in our family.  Which I am certain will lead to testing of our girls and my parents.
• Remember to breath, live, love and be grateful everyday.

Crafty me

I have been hanging out in the right side of my brain more and more lately; exploring my creative side. My left, logical side, is on strike.  I have always enjoyed crafting but never really set aside much time for it. When I am making something I don't have to think beyond what's in my hand and the next step. There are not going to be any repercussions or consequences of my actions. If I make a mistake or get frustrated, I can stop and try again later.  It took four attempts to crochet my first hat.

Last Saturday I participated in a local Christmas Bazaar - as a vendor. 

 BLACKberry Fields display
West Guilford Community Centre, Christmas Bazaar

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Talk about stepping out of my comfort zone.  Though I have received positive feedback, from my friends and family about our preserves and my "Tied by Me" fleece blankets, it's completely different to put myself out there for the public to see and critique.  Add the fact that I have regular seizures, that are  induced by sensory stimulation.  Seizures that literally leave me speachless.  Thankfully my Grandma was willing and able to come sit by me through out the day, just in case.  (She also taught me a new crochet stitch :)

The bazaar was a success.  I sold many preserves and blankets.  Took orders for Christmas gifts.  Got ideas for new projects. Talked to many people without stumbling with my words. Most important, I gained the confidence to do it again in a couple of weeks.

Oh where, oh where, oh where is Stephanie???

I have a small confession.  I forgot my blogger account sign in name and password. I forgot where I wrote it down. I forgot how to retrieve it.  I was angry, frustrated and embarrassed so I didn't tell anyone or ask for help. But look... here I am.  In a moment of clarity I remembered what to do and here I am!

It's been an eventful few months so I will give you the brief synapses of what's been going on with me and mine.

I continue to have regular seizures.  An MRI of my brain on October 5th showed significant swelling,  So much swelling that they could not see my AVM.   I can't handle most sensory things like smell, loud noise/talking and bright lights. I struggle with counting, reading, comprehension and spelling every day.  It is difficult for me to talk to people I don't talk to often because I can't read people like I use to.  I can no longer tolerate (I hate that word), accept people who are angry, rude or ignorant.  I'm not trying to be nasty but I just don't have time for those people in my circle anymore. (If you are here reading this I can personally guarantee it's not you :) I choose to surround myself with positive people who make me happy and have similar values as me.  The plan for now is to continue to monitor my seizures, increase my meds as needed and follow up in December with my Neurology team at TWH and my cardiologist at St. Michael's Hospital. 

Skip ahead if I have already told you this; I tend to repeat myself...

When John and I built our house on the hill we knew that one day we would farm.  By "we", I thought HE. Turns out it's me/us.  A small hobby farm.  We would have a few chickens, a cow and a little garden.  As my health and employment status changed so did our time table and the size of our plot.  BLACKberry Fields will become a productive farm in 2012.  Once the tractor rolled its way onto the property I knew it was a done deal. 

Daily conversations about chicken, eggs and the coup expansion rule.  Closely followed by garden expansion, fencing and a new barn.  All Amy can talk about is her billy goat that currently lives at Poppa Black's farm.  Brenden wants to know how much money he is making every time he helps with anything and Dana is still cat (3) crazy!!

In a short 10 months my world has shifted.  I thought I would continue through school and have multiple diplomas giving me the knowledge required to help others.  Turns out others are now helping me.  Everyday I am grateful for the emails, telephone calls, the visits, the offers to pick me up anything and everything I may need.  I am grateful for my family who can still laugh with me through the craziness and hug me through the tears. 

My world has shifted but it's not all bad.  I like how we are living our life.  I enjoy being home.  I like experimenting with preserves, talking to the hens, planning my garden for next year.

Just so you know; I wrote down my password and showed John where it is. :)