Yesterday, 9th of July we found out we ONLY JUST missed our window of opportunity (he would be eligible if they could transplant TODAY, unfortunately the whole process will take around 2 months, which will mean more deterioration)😢 our beautiful boy had progressed that little bit too much to be accepted for transplant. We did however find comfort in the news that he is also very early in the disease, Levi is sitting at the late side of stage 1 and very early stage 2. Levis brain has deteriorated a significant amount since his last MRI in April.. However the deterioration has only effected the use of his muscles.. Levis cognitive ability is sitting around 6-7months (which is a really good thing). His hearing tests have come back and are 100% normal! Dr E believes with therapy and the right medications we can maintain everything he has for quite a long time! This is also good news. When we spoke about Levis life expectancy, Dr E would only speak in 12 month blocks, however she believed he would be here in 12 months and probably 12 months after that.. Dr E has advised us about her plan of attack with Levi and we are confident that he is going to have the best life possible! One thing Ive learned in this journey is, no matter how much time we may have here on earth, its not about the time its the quality.. Nobodys days are set in stone and nobody knows how long they actually have.. Just because Levis is outlined does not nessiserally mean that his end is anywhere near. As Levis parents we are going to dedicate everyday to this little boy, and we are going to give him this extra quality of life.. He is a super strong boy and have proved doctors wrong over and over again.. He may surprise us all and sit there and laugh at us in years to come.. But we dont know, we will always live with fear in the back over our minds but will live and embrace everyday with a smile. Levi has 2 more tests to go through before we leave Pittsburgh, but were sure hes going to do fine 😊
Posted on: Thu, 10 Jul 2014 09:58:13 +0000
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