Aidens is doing good.. he does his cough assist every few hours, cpt, and now they are adding in some breathing treatments. Over the week he has had a few spells where he goes completely pale, limp, lips turn purple and he stops breathing. It even scared his nurse. So friday night, we checked into to the good old hospital for 24 hour observation. They wanted to make sure aiden wasn't sick, and make sure he wasn't having seizures. I was very happy to wake up to Dr. V the next morning. He told me to take Aiden home because he hadn't seen anything wrong. (( I think his secretions are just to thick for him to pass, cause after he stops breathing and we suck him all out.. ONLY THICK secretions come out.. and ALOT of them..after those are out.. hes fine..)) So we came home and he is doing pretty good. The doctors in cincinnati want him to come back so they can do there own tests on him, to make sure nothing else is really going on. We will make our way back down to cincinnati on the 16th, hopefully for just a days trip. Needless to say, it felt wonderful bringing him back home saturday afternoon. --Even though Aiden & I both enjoyed seeing all the nurses on the PICU floor again.. (( i think they really missed him too)) . In the mean time, we are just hanging out at home. Watching our baby einstein moves, and just being thankful that aiden has beaten the odds Toledo gave him of living. They told me he would not live to one.. but on the 1st... we will be celebrating his first birthday!! It makes me soo happy & proud.. i always knew he was a fighter.. just needed a little help..
I hope you all got a chance to vote at the www.voteforsma.com site.. if we win, we get a million dollars for our sma research!! that is sooo much money, and would be a really big help in finding a cure!
i dont want a parent to feel the way i felt, the day they told me what aidens diagnoses was.
the doctor said... Take Aiden home, and love on him, because he will only be here for a short time. Most Sma babies will pass before they are one year old. The lucky ones, make it to 18 months. At that moment, I felt like i was dying... I felt like my insides were roting from the inside out, and i felt like when aiden passed, I would pass away with him.. or I would want to anyways.
I know god sent my little angel to me for a purpose. I'm starting to think it was because I am a passionate person, and I love with all my heart. Maybe, my passion was meant to help find a cure for my baby, or help raise money to find a cure.. i am not sure what my purpose is yet, but right now.. this feels right.
I would never want another parent to feel the way I did on September 25th.. the day they told me my baby would become my angel.
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