August 18, 2019

I don't like to be wrong.  I like to be the bearer of accurate information, without exaggeration whenever possible.  I would say I tend to be on the side of cautiously optimistic, and try not to over excite others with good or bad news.

I am often asked how Heston is doing and as his primary caregiver and the person present at all his appointments I want to be the best source of information on his well being.  I want to not only be able to give updates on his present condition, but also insight and direction on how we expect his health to continue to progress.  I want so desperately to help myself, my family and so many around me be as prepared as possible when his health deteriorates. 

Last September when school was starting Heston was so sleepy.  It felt ridiculous at times wheeling him up to the front doors of the school, often sound asleep.  His body seemed tired and I feared things were slowing down for good.  He improved with a change of feed, but stayed relatively stable, not a lot of energy but still getting enjoyment out of school for the better part of the year.  There were days when he would wake and seem almost paralyzed.  It was as if his brain could no longer communicate with his limbs and it wasn't until I would gently move them that things would connect again and he would begin to move them on his own.  We knew from the doctors and from experience that Sanfilippo can have phases of both up and downs through time but we felt that he had climaxed at this new normal and the only direction from here was down.

And so I began preparing- making plans, preparing myself and others for Hestons health to go downhill.  

And then June came along.  

Right around Heston's birthday it was as if someone flipped on a switch in him from the off to the on position.  He was absolutely wired, tons of energy, moving like crazy.  He was mentally alert, with eye contact, smiles, excitement and even some vocalization.  The teachers and kids at school were all remarking on this change and we wondered how long it would last.  It was so exciting as he hadn't had this much energy and been this alert in years.

July came and went, and now we are already halfway through August.  I am pleased to report that although Heston does not have quite as much energy as he did in June, he is still doing really, really well.  He is easily engaged, seems to be so happy and content and we have loved experiencing this part of him again.  This summer has been an incredible blessing to our whole family.  I love that my boys have made more memories with Heston and are that much older to be able to remember his smiles and giggles.  We have not only been given more time with our boy, but we have been given quality time and that is such an amazing gift.

So we look ahead with hope as Heston enters grade 4.  We have no idea how long this good phase will last and what this year will have in store for us and for Heston.  I have been hesitant to share that he is doing so well, partly because I am worried that as soon as I say it, that things will change and I don't want to be like the boy who cried "Wolf".  So I am learning that I can only give the information that I know for today, without any knowledge about what we can expect tomorrow.  For today Heston is doing great and I have no idea what it will look like tomorrow.

If you had asked me 6 months ago I would have told you that I didn't think Heston would make it to this summer.

I was wrong and I have never been so glad I was.