Why Won’t He Eat???

We hear this over and over again in the Russell-Silver community….   Why won’t he/she eat????   There are no proven studies per se that confirm why an RSS child is rarely hungry.… Continue reading

Hope 4 Bridget

I have seen it time and time again.  Love and faith – repeatedly instilled in those who have children and/or family members with special needs.  We recently moved back to our home town,… Continue reading

7000 Bracelets For Hope

I’m excited about a recent campaign brewing for children with Rare Disease!  It’s called 7000 Bracelets for Hope….sponsored by the Global Genes Project.  As you all know – I am an avid advocate… Continue reading

Genetic Results

I recently attended The MAGIC Convention 2010 in Wheeling, IL.  It was once again, a wonderful time for bonding, relationship building and information gathering with leading physicians familiar with Russell-Silver Syndrome as well… Continue reading

Ian at 2010 Convention…..

Our Extended Families

We spent a great deal commiserating with our extended families over the course of the convention this last week.  A tremendous amount of emotions exuded from inside my heart….love, understanding, grief, familiarity, and… Continue reading

Managing Behavior

Managing behavior with a special needs child is NOT easy.  It takes a bit of finesse to manage how tough and consistent we want to be, considering our own sympathetic (or empathetic) views… Continue reading

They Just Don’t Get It

I am reminded time and time again…that friends and family who have not experienced living with a child with special needs…they just don’t get it. It isn’t the mother-in-law or the brother-in-law, or even… Continue reading

Russell-Silver Syndrome and G-Tubes

There is no other way to say it ….a g-tube is NOT an easy decision. There are plenty of skeptics, including well-known and respected physicians, that will tell you a g-tube is not… Continue reading

Letting Go

Wow.  Where to start? It all depends on where you are I suppose.  We can let go of a thing, an idea, a thought, or even a person.  But we should never let… Continue reading

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