Mason is Home!

9 08 2011

Yesterday around 6 PM we were discharged from Hopkins.  Mason’s maiden voyage in our car (and not the ambulance) was uneventful since he slept the entire way.  That was a blessing in and of itself.  The final day at Hopkins was pretty mild compared to the others, Mason got an eye exam and they drew some blood for genetic testing.  Because of the Rhabdomyoma tumors in his heart and the lesions in his brain they have clinically diagnosed him with Tuberous Sclerosis.  The disease is found in only 1 out of 6000 babies and there are less than 50k people in the USA who have this disease.  The disease is caused by a mutation of the TSC1 and TSC2 genes which are responsible for suppressing the growth of tumors in the body.  Which is why he developed the growth in his heart and brain.  All we know right now is that he has those two things, everything else is a wait and see type of thing.  He may never develop any other symptoms throughout his life, or he might, but they have no way of predicting what will or won’t happen.

Fortunately we live 30 minutes from the number 1 hospital in the country and he will be looked over by lots of specialists throughout his life.  If anything changes they will find it early and be able to treat it.  We’re going to treat him like every other kid, but we know what to look for as far as certain symptoms.  Without question we  believe it was all God that the Pediatrician and Nurse even heard the murmur that promted the echocardiagram that found the tumors.  I say that because when the Cardiologists in the hospital listened to his heart they didn’t even hear it, so we’re thankful it was caught now because this would of been much harder to diagnose in the future, and now he will have regular checkups to monitor things.

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