Half the Energy, Twice the Spunk

This has been on my mind alot lately...

Maybe it's the influx of comments lately, the huge amount of family support we have recieved, the long stretch of 'healthy' Brandon has enjoyed (which is equally awesome and difficult - awesome for obvious reasons, difficult because with mito it is always temporary, and we are always waiting anxiously for that rhinocerous around the corner...


also difficult because it gives us a tiny peek into how 'the rest of you' live, and how hugely different our lives will always be)...

I'm often faced with a variety of comments parents in our position are faced wtih - 'how do you do it?', 'you're so strong!', and the like. While well meaning if I can impress upon folks not living this life one thing, let it be that you should NEVER ask a mother in my position how they do it, or comment on their strength. Just don't.

In the end it's because we're not strong, and truthfully we dont know how we do it. Like every other parent out there, we're just flying by the seat of our pants, trying to have some fun, and hoping we dont skrew up too badly.

A dear friend and I talked recently about our boys who both have their challenges, both genetic, both incurable, and both with very uncertain and scary futures.

We shared a similar sentiment when faced with the idea of 'fixing' our children, one I have talked to many other mothers of children with genetic disorders about, and it turns out it's not uncommon.

While I would love nothing more than to see Brandon 'cured', I recognize that is not going to happen. We are not going to cure mito... that would be like saying we're going to cure blond hair, or we're going to cure the fact that we have a pancreas. Mito is not just a virus or cancerous growth needing to be fixed or removed...

Mito IS Brandon.

Every cell, every organ, every ounce of his entire body is genetically programmed to have mito.

To get rid of the mito, would literally mean to get rid of Brandon.

I absolutely have hope that we will find treatments, and medications to improve the quality of his life... that we will find ways to restore the organs that have suffered damage, and that we will be able to prolong and enhance his life...

But how can I hope for a cure? How can I hope to completely, fundamentally change my child at the absolute most basic biological level? That is what a true 'cure' would be... fundamental genetic reprogramming...



Like it or not... if we want Brandon, mito is part of the package... To get rid of the mito would be akin to deciding to 'trade him in' for a new boy, a less broken boy... not something any of us are lining up to do.

Wrapping my head around this concept has gone a very long way to help me accept this path we're on....

It certainly wont stop me from persuing more effective treatments, therapies, medications, and suppliments....



But acknowledging that the mito is a part of Brandon as much as his soft brown hair, dusty blue eyes, and killer smile, sure makes me hate it a little less.... I hate what it does, but I cannot hate something so fundamentally Brandon.



And thus concludes my philisophical ramblings of the day.

We are enjoying the spring time here!

The boys are doing well, they both muddled through a spring cold fairly efficiently, and are busy making full use of our muddy yard.

The cat of course had to throw a wrench into things and got herself run over by a car... dislocated sternum, and lots of scrapes and bruises, and of course the requisite vet bill... but all in all she is bouncing back pretty well.

In light of the last few months of 'health crisis', we decided Dave needed a new job as his current position requires travel up north for the vast majority of the summer/fall, and we need him home.

So today is his last day of work with the lodges, and in 2 weeks he will start his new job as a supervisor... at this point that is all we really know about the job... it's a government position (woohoo! great benifits! how lame is it that the first thing I did was read up on their health benifits??), and he will indeed be supervising... beyond that it's a mystery...

But he's looking forward to it, I'm looking forward to having him home all summer... In our 7 years of marriage, this will be the first summer I have had him at home!

So thats about it at our end... pretty boring all things considered... we like boring!

K

Well this time around 'no news' wasn't good news.

It's been a pretty crazy few months in our house.

Let me start by saying the boys are doing FANTASTIC... Both boys are thriving... For that we're thrilled.

In April things hit a crisis point for me (mom). I haven't mentioned alot about my own health challenges on here, but as of mid-april, they came to a head and were no longer 'ignorable'.

After Brandon was born I developed severe autonomic dysfunction - my blood pressure, heart rate, digestive system and basically every 'system' that functions automatically in my body stopped working properly.

With medication and regular monitoring I was able to stay somewhat functional but have been disabled for the most part since that time. By December last year I was using a wheelchair for long walks etc.

This past winter my gut pretty much shut down completely.

I lost 30lbs in a few months (and believe me I didnt have 30lbs to lose).

Mid April I finally wound up at the ER in the city weighing 95lbs, with a blood sugar of 1.6 (28.8 in US units). I was good and broken.

For the past year the diagnosis has been 'Autoimmune Autonomic Ganglionopathy' - a condition where my own immune system attacks the autonomic nerves. Untreated, it's progressive and relentless. There is a treatment - IVIG - an IV solution made up of immunoglobulins from thousands of donors - but it is very expensive, and considered experimental for my condition, so it was taking a long time to get a trial approved.

The up side to ending up critically ill in the hospital was I was able to get a trial set up and running very fast. It came down to them wanting to place a surgical feeding tube, or start TPN (IV nutrition), and they all agreed it made sense to try the IVIG before going that drastic route.

It was a shot in the dark - they had no idea if it would work, and if it did, they had no idea how well or how fast.

They didnt know what dose to give me (so they gave me a massive one), or how often (so their doing it every 3 weeks now). But I had some awesome doctors who were willing to give it a whirl.


Then the cool part happened.

It worked.


After 7 years of being so sick, a few glass bottles of IVIG, a bit of time and rest, and one day my blood pressure started going up... stopped dropping when I stood, my heart rate stabalized, my gut started working...

I was inpatient for 3 weeks... 3 long weeks... and then I got to go home... better than when i went in... it was amazing.

It's been slow, but the recovery has been steady... Ive been successfully weaning off the multitude of medications I was on to keep my body functioning...

Every day I am a bit stronger, I have more energy, I'm less fatigued....


It's been an amazing journey, and while its frustrating it took so long to get to this point - now that I'm on my way to better (after being told for years 'better' would never happen) I am just thrilled....

Life is good.