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October 22, 2022- Thoughts from Jordan

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  How am I doing? That’s a great question, and I think you would agree, it depends on a lot of things. It depends a lot on the moment. I bet some of you are doing great right now, and some of you maybe not so good. And your answer might be drastically different if you were asked that same question an hour from now, a day from now, or a month from now. The past few months (and years) there has been a much deeper focus on the question, “how am I doing?”. For Kerena and I, when we are asked that question, it comes to 2 levels, how are you generally doing, or the much deeper: What is life like knowing your child will die, and now, what is life like after your child has died? I will go as deep as I can to answer these 2 questions We had 9 years to process and grieve the news that Heston would have a short life here on earth. Unlike a child who is suddenly taken in some sort of accident, we had years to say goodbye. I held Heston so many times with the thought of trying to ...
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June 3, 2022- Heston's 12th Birthday

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  Today is Heston’s 12 th birthday.  Those are words I never thought I would say.  Right from his diagnosis, when he was already regressing faster than many Sanfilippo kids, up to the last year, even the last month I didn’t believe this day would come.  And yet here we are.  So as per tradition, on this, Heston’s 12 th birthday, I am sharing a list of 12 things I am grateful for. So many who have supported us Whether it was a card or email of encouragement, a meal or gift card, we have been so thankful for so many who have come along side us in this journey.  We knew years ago that this would be a marathon, but even we didn’t realize how long things were going to draw out at the end like they are.  I know it has not been easy for many to sit in this space with us and for those of you who are still here, thank you.  Obviously we are most directly affected by the weight of this journey, but that doesn’t mean that it hasn’t been hard fo...
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June 3, 2021- Heston's 11th Birthday

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  Today is Heston’s 11 th birthday.   Wow.   What a year this past year has been; for Heston, for our family, and for our country and the world.   Numerous times this past year we had struggles with Heston and I thought we would never make it to this day.   But while he continues to decline overall, it has been at a slower pace than I would have anticipated.   It seems like whenever we get comfortable with how well he is doing, something happens to drop him down.   Whenever we are convinced we are nearing the end he seems to improve.   It has been an emotional rollercoaster of a year.   Not being able to plan ahead will always be a struggle for me and this year I feel like I am taking a masterclass in the art of taking things one day at a time.   When I look back on this past year I have to say that it has been harder at times to be thankful.   I think many can relate that it has been difficult to be grateful without constantly...
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November 6, 2020- Update

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  It has been a bit of an up and down week for our Heston.  I keep wanting to send out an update, but it seems whenever I think it is time to share, things change.  He seems to be doing better, even good at times, and then a few hours later or the next day we are back to him being in pain again.  He is definitely not back to normal, and mostly quite sleepy or mellow, but we have seen some promising periods when he is more alert and happy. Overall we feel that we have had some improvement over the past couple of days.  We took him to get an x-ray here in Victoria on Wednesday evening as he still seemed to be in pain and we wanted to see if his bowels were still full.  The x-ray showed improvement, but still a backlog.  So while improvement is great and gives us hope that things are headed in the right direction, we also know we aren’t out of the woods yet.  Heston is not past this. We have watched Heston lose functions and abilities for the pas...
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September 29, 2020 update

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  It has been awhile since I have posted an update on Heston.  The past 6 months have been such a crazy time for so many and like many of you we found ourselves mostly staying home, making the most of our time as a family.  One of the benefits of this is that Heston has not had to battle sickness for this period of time which has given him strength.  He is doing so well right now, and has been for some time.  He is animated, engaged and full of energy. Our boys have now been back in school full time for over 2 weeks and it is wonderful for all of us.  It was amazing how well we all did for the past months at home, but returning to school has been healthy in many different ways.  Heston in particular is such a social little guy and it is so apparent that his life is enriched by his time with his classmates.  He feeds off the energy of other kids and just loves to watch them. We are so thankful that we have the opportunity to allow Heston to be a pa...
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June 3, 2020- Heston's 10th Birthday

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Wow- Heston is 10!!  A part of me is thrilled that we are here, and another part of me is sad that we are already here.  As we celebrate our boy this day and the milestone it represents, as per tradition, I will share a list of 10 things I am thankful for, for this, Heston's 10th birthday. 1.  Heston's Stable Health This past year we have experienced relatively minor changes to Heston's health and care.  He has been the most stable he has been in years, and we are so thankful.  This not only makes our job easier as it takes the guessing game out of trying to figure what needs to be done to accommodate changes, but it is so much easier to deal with mentally and emotionally.  For the past while he has been alert and engaged, all without signs of discomfort.  We have found what seems to work for him (for now at least) which takes away so much extra stress. Lately we have even commented on how when you try to lift him he really tries...
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March 18, 2020- COVID-19

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We are 6 days in to a self isolation/ social distancing lifestyle as a family with the threat of the COVID-19 looming around us.  We are staying home as much as possible, only going out for necessary outings or low risk appointments, and being extremely cautious and careful when we do.  Our whole family knows that we are on protection mode for Heston.  We know that for the rest of us, this virus would likely be mostly a minor inconvenience, but for Heston, it could be a threat to his life. Heston has regressed to the point where his brain doesn't always give the signals to him around proper swallowing, etc.  He drools a lot, and while we don't see too many other symptoms in this area, he does sometimes cough and have slight trouble managing his own saliva.  This puts him at a great risk for aspiration. Should he be infected with a respiratory virus such as COVID-19,  whether it be from the virus itself, or from aspiration around the symptoms of the v...
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