I just want to thank everyone who has been asking about the boys, sending positive energy, prayers, anything and everything! It means so much to Michael and I! Jamesons heart is stable, the obstruction and the thickening has not changed since last visit, which is such a relief! We now can have a few months without worrying, well until next appointment! Even though his heart is stable now doesnt mean we are in the clear, until there is a cure and a prognosis we do not know what is going to happen in the future... So keep the positive energy and prayers coming!!! Jameson does have an EEG Wednesday, so please think of him then! We are not sure if he is having seizures or heart spells, arrhythmias. Jameson is also wearing an event monitor for 30 days, please think of me the next 30 days, haha,this is going to be a nightmare trying to keep wires on a 13 month old 24 hours for 30 days! Wish us luck! Also our Liams heart did not change! They will be seeing him yearly... they usually only see patients thats have the gene mutation every 2-3 years, but because Jamesons disease has progressed so fast they want to see Liam yearly! This makes me happy, I want my boys to live as normal as they can!
Posted on: Sat, 02 Aug 2014 01:07:48 +0000
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