So Antonella and I have been kind of avoiding it but it's time for an Ava update. While Facebook may not be the ideal forum to tell people, its heartbreaking to explain so I'm taking the easy way out by posting it here.

In late April, Ava was admitted to Sick Kids to have her port removed as her seizures have changed in nature from Grand Mal which required emergency IV access to stop, to much shorter clusters. This is great news.

A couple of weeks later we got a call for an ... urgent appointment with her nephrologist. It seems that there were some abnormalities with her blood work and they had a diagnosis. Ava has been suffering from renal (kidney) failure for some time. Immediate changes to her care were required. Unfortunately, it has gotten much more difficult to take Ava out of the house for extended periods as a result.

The biggest of these changes is that she has a scheduled surgery this Tuesday evening for her feeding tube to be changed. Until now it has been a G-tube through which food and medication was pumped directly to her stomach. It is being changed to a GJ-tube which goes directly to her small bowel. This will require almost continuous pumped feeds at extremely slow rates. Full time nursing at school, as well as additional nursing and a constant caregiver at home are the facts of life. cocktail party garment suitable for ladies

Although it's still early days, the first question we are asked is if Ava is a candidate for a transplant. Due to the nature of her syndrome, that's extremely unlikely.

In spite of the rough news, Ava remains the anchor in our family and continues to shine through it all. We have an amazing support system which we are truly grateful for. All your thoughts and prayers are hugely appreciated.