As A Mum, This Is Something I Will Be Forever Proud Of

As A Mum, This Is Something I Will Be Forever Proud Of

Image by Mantrabond Update #3: Day 12, 8 July 2018 Ohhh, that feeling when you wake up every morning to an alarm reminding you it’s time for ORKAMBI! Seriously! I have one cool upbeat tune that plays everytime ‘O’ is due. It reminds me every morning of the path we’ve taken to now and of the amazing little PINK PILLS that are giving us hope… that and the undeniable fact that my boy has a fighting chance! GRATITUDE If nothing else of value has been achieved in my life, I know THIS is something I will forever be proud of. I get emotional every time I think about it. It has been some time since I did an update on Matthew’s progress, so here it is!!! You know the old saying, “no news is good news”… well, that is exactly how it is. Matthew is doing incredibly well. Every morning and night he takes those pills. Within the hour we know they have activated because he starts coughing. We do the physio (and he lets me help – YIPPEEE), sometimes there has been very little that has moved but most times like today, Matthew shifts heaps. Mostly it is dark and I do wonder if he did physio all day if it would keep shifting?! Matt is reporting that he is starting to feel better but it is very difficult for him to articulate what that means. I see a kid who is getting up earlier and sleeping less. A kid who is facing some of his fears and making more of an effort to push through those difficult...
Orkambi – Better progress than we could expect!

Orkambi – Better progress than we could expect!

Update #1: Day 3, 28 June 2018 Oh, Ohh, Ohhhh #ORKAMBI!!!!! Today is a good day. Matthew’s tolerance for Orkambi has been very positive so far. He started his full dose yesterday after his first day on a half dose was ‘unremarkable’ in terms of adverse side effects. It has been a busy time in here with many, many sets of observations, four lung function tests per day (only one today) and three lots of intensive physiotherapy to support the treatment and movement of sputum from the lungs. On admission, Matthew’s lung function was 56.2% (1.8 litres). It fluctuated slightly on day one and two between 55.3% (1.77 litres) and up to 58.76% (1.88 litres) for his last one yesterday at 1.30 pm. Today’s lung function has climbed to 60.78% or 1.94 litres. It is clear to me that when Matthew is doing his lung function tests that it is getting easier to get a bigger breath in. Something I have seen diminish over the last 6 or so months. Matthew is clearing gunk well and some patterns are forming that will help with establishing treatment plans at home. The doctors are delighted as are the physiotherapists. There are expectations of severe initial side effects including problems with his breathing and airways being constricted, nausea, cold-like symptoms and headache, yet these are present so far. Doctors believe, based on the research of others who are on Orkambi, that we could expect an initial and significant drop in his lung function too. This has not happened obviously with an approximate 5% improvement in just a few days, this gives us so...
The Big ‘O’ Brings New Hope

The Big ‘O’ Brings New Hope

Background The 26th of June 2018 marks a monumental day for our family.  It marks the first day of access to a drug that is otherwise unattainable for our son Matthew.  A drug that potentially can stop the progression of an insidious disease he lives with called Cystic Fibrosis. At the time of writing this article, the below message was written to our loved ones to announce our news. We have been waiting three years from the time Orkambi was approved for safe use here in Australia.  This is a drug that has a price tag of around $260,000 per person per year.  The Australian Government and Vertex (the manufacturers of Orkambi) have been at a stalemate, unable to reach agreement on a ‘fair price’ for people living with Cystic Fibrosis to access. In the same week, Matthew started access, a new application was presented to the PBAC – Pharmaceutical Benefits Advisory Committee to have Orkambi included for access on our Pharmaceutical Benefits Scheme. To date, we do not know the answer but know that in the United Kingdom, access was again denied and Vertex is now likely to pull out of the country leaving thousands without access.  Hundreds have died waiting, hundreds more will die wondering ‘what could have been’. This is our story. The Big 'O' Brings New Hope! Day 1 – 26 June 2018 Matthew Started His Orkambi Journey today. He is the first paediatric patient in South Australia to be granted access! Today marked a new day in the history of our family. Matthew started his journey on Orkambi. Yes, that elusive drug that promises so...
Fuss free gluten & dairy free

Fuss free gluten & dairy free

Anyone will tell you, making major lifestyle changes can be overwhelming at best.  So when you are trying to implement sustainable dietary change for your whole family, who all have years of ingrained habits, it is no easy feat.  How do I know?  Because I would consider myself an accidental expert in change implementation on many fronts.  More specifically, we have evolved our diet significantly with many drastic changes over the past six years. You can read our back story here!  If you are considering a gluten and dairy free lifestyle, you needn’t be overwhelmed.  You do need to be organised and you do need support!  But fear not, I am here to help set you up for success!   Check out my 5 essential ‘going gluten and dairy free’ steps below… Have a strong reason why Plan, prepare, research and record Set up your kitchen Ask for support Bulk cooking and building your stock Have a strong reason why If you have decided to make dietary or lifestyle changes, they simply don’t happen overnight.  You need to have discipline, focus and determination.  If it is an off the cuff decision or a decision that is taken lightly, I am afraid you are setting yourself up to fall. If this is for a medical reason, my strong recommendation is that you be guided by a Naturopath, Integrative Medical Practitioner, Nutritionist or other specialised health professional.  We are guided by a naturopath who is passionate about realistic and sustainable good health & nutrition. She also undertakes diagnostic testing to ensure that my son’s health is being managed thoroughly and uses that with his...
Gluten & Dairy Free. Our Why!

Gluten & Dairy Free. Our Why!

Anyone will tell you, making major lifestyle changes can be overwhelming at best. So when you are trying to implement sustainable dietary change for your whole family, who all have years of ingrained habits, it is no easy feat. How do I know? Because I would consider myself an accidental expert in change implementation on many fronts. More specifically, we have evolved our diet significantly with many drastic changes over the past six years. Two years ago our whole family went on a radical dietary change to support my eldest son Matthew who, for health reasons, needed to try a gluten, dairy, soy, refined sugar and processed food free lifestyle. We needed to drastically reduce the inflammation levels in his body and it was an overwhelming success.  At the time, Matthew had been taken off a strong medication to try and control the inflammation and the autoimmune reaction his body was having due to a pathogen called Aspergillus.  This is commonly known in CF circles as ABPA (allergic broncho pulmonary aspergillosis).  Matthew suffered a severe reaction to a medication called Methylprednisolone (a powerful steroid to reduce inflammation) and it was deemed that this was no longer a viable option for him.  At this stage, something had to give and so I turned to complimentary medicine with the blessing of Matthew’s doctor and supervision of the hospital dieticians. To say it was difficult wouldn’t really even start to explain those first days. I look back and wish I had have known what I do now. It didn’t need to be as hard as it was and there were many things I could have...