So – I haven’t updated in quite a while, because there has been pretty much nothing to update.  As of tomorrow morning, Ian has been at home for 3 solid weeks! 4 weeks in total if we include the first week, but Ian was admitted for a quick 3 days during that first week.

So – being home for a month means that we will have clinic appointments next week 😮  We’ll see Nephrology, Pulmonology and Diagnostic Referral Group (DRG) on Friday.

Ian also has his Early Intervention evaluation this week so that we can start PT/OT very soon.  It will be nice to have some direction on what we can do with him to start to get him working on progressing physically.

Last but not least – this week is CHD Awareness week.  Lots of people complain that CHD doesn’t get the recognition that other causes get.  And that is true. I have a pretty strong belief that it is up to us – as people whose lives have been affected by it, to do something to make that change.

Before Ian, I had heard of heart defects in babies. But, the two stories I knew were distant enough from my own life that I ignorantly lived thinking – I know kids that have that, and they are doing great.  Which is true.  But what they had to go through to get there was terrifying.  And, although they are doing great, its not over for them or over for their parents.

The truth is, there are SO many kids who are doing great.  Really great.  Adults that are doing great.  Interestingly, someone I work with randomly mentioined that he has a CHD and had open heart surgery as a baby.  We have come a long way since babies with HLHS had no chance.

But – there are still kids like Ian – whose diagnosis’ are so rare that not many doctors have seen more than a few in their career.  There are still pregnant mothers who have ultrasounds (sometimes multiple and at big hospitals) and their babies are not diagnosed.  There are still babies, kids, and adults dying WAY too young.  We need WAY more research, WAY more awareness.

Ian has Tetrology of Fallot, Absent Pulmonary Valve.  His missing pulmonary valve caused his pulmonary arteries to get huge. His huge pulmonary ateries compessed his airways in utero and restricted lung and airway development.  Many kids with Ian’s diagnosis die without ever even having surgery because their lungs are the problem, and doctors really just don’t do lung transplants on tiny infants.     We are so blessed that Ian’s cardiac surgeon (Dr. Morrell) was able to see enough lung tissue that he thought he could give Ian a chance.  We are greatful that we live in a city with a great children’s hospital with amazing staff who saved Ian’s life. We are grateful for all of the research done at c.s. Mott for kids with severe tracheobroncial malacia and for doctors who didn’t give up on our son.

Coming soon I’ll be setting up our team for the Congenital Heart Walk. We would love for you to join us to raise awareness and funds for CHD.

Okay – Back to our amazing boy: