More late breaking medical news...

Last Sunday we left our cozy home on the hill at 4am and drove three hours to Toronto so Brenden could have his annual MRI.  The purpose of the MRI is to monitor the lesions (yes more than one) in his brain.  Of the three known lesions there is one "of interest" in the left frontal lobe.  The same place my AVM aka Monster lives.

We spent the rest of the day being silly at the Science Centre, eating good food, playing in the arcade and swimming in the pool at the hotel.  By the time 9pm hit all three children were exhausted from our very early start.

On Monday we met with a Neurosurgeon who needs to consult a Radiologist to look at the MRI (Brenden's brain) closer and discuss their findings.... He is suppose to call me by mid February to discuss the results. If he forgets to call me then I should call him.  Yes, he really said that.  The best part of that particular appointment was Brenden playing "games" with the Neurology Fellow during his assessment.  He is also being scheduled for an EEG to check for the possibility of seizure activity.

Next stop of the day was the Chest Clinic to meet the doctor who will be testing our family for HHT.  If you want some quick facts about HHT click here.  I have already have been examined at a different hospital in the quest to find other AVM's or telangiectases.  I, thankfully, did not present any more than the one in my brain.  Brenden is known to have one in his nose and one in his mouth.  His heart is clear.  We know that because his cardiologist did an echo bubble study before heart surgery last spring.  His lungs should be X-rayed though we never discussed that... Not to self - make that happen sooner than later.

I think it safe to assume that Brenden and I do have this genetic disorder. Brain AVM's are extremely rare.  For both of us to have one without HHT would be extraordinary.  HHT is uncommon but not rare.   Telangiectases are basically an abnormal connection between small arteries and veins.  They can show up anywhere in the body but are most worrisome in the brain and lungs because if they rupture they will cause stroke or death. 

After answering endless questions at the Chest Clinic we were sent to the blood lab. They will first isolate the markers for HHT in Brenden and I then look for the same marks in the girls. Their blood has been banked for the occasion.  If they do not have it then their children will not inherit it.  If they do have HHT then their children will have a 50% chance of also having it. And so on and so on.

Every family with HHT is unique and it often goes completely undiagnosed generation after generation.



So what does all of this really mean?

More waiting. More questions. More living.

Sending love from the hill.

Steph

two of 52

John returned to work after two weeks home.
All three children returned to school.
I slowly begin to tame the chaos of our home.
I have grand plans to start taking better care of me. 
Not side effect management but real, genuine care.

Here's a snap shot of week 2 of 52.

We have restored bedtimes routines that include hang man and shadow puppets.

 

 

 

The cats are frisky and mischievous being stuck indoors. 

I often find them sitting on stools at the island watching me cook.  Weird.

 

 

We have an extra friendly squirrel that regularly taunts the dogs.

 

 

I continue to prepare real meals with real food which we eat at a real table. 

I am continually surprised that this is not "normal" for some families.

 

 

 

 

We took an "educational trip" to the Science Centre with

typical Black Family twisted sense of humor...

 

 

 

We enjoyed the pool all alone.  That never happens here.

 

 

 

And as always -

More waiting.  More questions.  Few answers.

 

 

 

 

Sending love from the hill.

 

Steph

 

one of 52

Inspired by my lovely friend Erin of Feather + Anchor Photography I have decided to photo document the goodness and simplicity in our lives.  The moments that keep us full of awesome and sane.  It's challenging being a Monster fighter(s) but our lives are pretty wonderful just the same.

Of course I am not so disciplined that I could commit to blogging daily, so weekly it shall be.

Here is a glimpse of week one of 52...

We made a family/farm plan for the year and beyond on a giant vision board. 

Thinking and dreaming big. Sustainable.  Forever.

 

 

We started up a small aquaponics system in the kitchen to experiment before we try anything on a larger scale in the green house.  A vermicomposter has also taken up residence.  Hello red wigglers.

 

 

We juiced daily, cooked real food, baked bread, cookies and muffins.

 We drank lots of tea and hot cocoa out of carefully crafted mugs.

 

 

We played silly games.  Repeatedly.

 

I finally finished The Hunger Games series.  I had to read the third book twice.

 

 

We snuggled on the couch. Frequently. All of us.

 

 

 

Sending love from the hill.

 

Steph