First of all, Ali has Strep infection at her G-tube site. She’s on antibiotics currently (which don’t seem to be doing much) and we are treating the granultion tissue around the area every three days with silver nitrate. We had her looked at yesterday and I guess the granulation tissue is really excessive so we have to get rid of it.  We are doing everything right but we are loosing the battle  which is VERY FRUSTRATING! Hopefully once we get the strep under control the granulation will follow.   Strep infections at G-tube sites are fairly rare and very difficult to treat so we may have to do a second course of antibiotics.

We got some very dissappointing and scary news yesterday at our cardiology appointment. Ali has developed Hypertrophic Cardiomyopathy.  Hypertrophic cardiomyopathy (HCM) is a disease in which the heart muscle becomes abnormally thick. This can make it harder for the heart to pump blood and can lead to sudden death.  Obviously this is really worrisome and to be honest I am trying to forget about it for now.  The best case senario would be that she goes on beta blockers (medication)and that the hypertrophy is kept under control for many years.  The worst case senario would be that she eventually needs a heart transplant which she won’t get due to tumor risk.  Over 70% of people with Costello Syndrome have this condition and it varies from mild to severe. Hypertrophy and tumor risk are the main reasons why people with Costello Syndrome don’t live long lives.  We knew that this would probably happen but it’s still a big slap in the face. So now I’m going to forget about it (sometimes I bury my head in the sand for self preservation) and worry about the Strep infection because that’s something that I can fix (I think).