Monday

Today so far, aiden has had lots of cough assist, suctioning, and Cpt done to help losen up the secretions in his lungs and help get rid of the pneumonia. As I talked to each doctor, i have addressed the fact that aiden has had pneumonia for almost 10 days now. With Sma children, they say that they are just weak. They do not have the muscles to take deep breathes to keep there lungs open. They need the extra support to help keep the lungs open and help clear the pneumonia. I am hoping with the extra treatments, it will be better by the end of this week. They also increased the amount of help he is getting from his bipap.. its pretty much just helping his lungs stay open and clear. Just a little extra help with him breathing!! He is no longer hard belly breathing before!! I think thats another part of him not getting rid of the pneumonia,he was working so hard to just breath, he just didnt have the strength to fight it!! The doctor must be very hopeful that it will be better soon. He seemed very confident that he could get it all cleared up. It is in the right middle lung, and the left lower lung, they are not opened up and cleared all the way yet. Tomorrow morning they will do another chest x-ray to see how well the treaments are working.



The neurologist also stopped in to get to know us, and let me in on her plan of action. She said with SMA babies the main priority is to keep there nutrition needs met, and there air ways clear!! They have been talking about changing his formula to a low fat formula, but they have not yet decided on which one yet. The neurologist began asking me how our other nearologist determined Aiden has type 1. She thinks aiden has to many muscles functions to be type 1. I called to get the blood work sent here so they would know exactly how he was diagnosed and what was done. Hopefully good news will come with that blood work!!! pretty much this is how they explained the SMA "types" to us.. Type 1, will never sit up on there own, hold there head.. type 2 will never walk, and type 3 is just weak in general. Type one is obviously the worst kind to have. But, Dr. Wong said in type one, there are also other types.. like bad ones..and good ones, almost to where the child could be type 2 kind of thing. SO JUST MAYBE AIDEN IS THE 1.9 LOL ALMOST A 2...

They also came in today to do an ecko scope, basically an ultra sound of the heart. Children with neuology problems normally have heart conditions. Although SMA children normally dooo not.. The doctors said he is not expecting anything to come back abnormal with his heart. He just would like to have it checked since the lungs and heart work soo closely together, better safe than sorry. Jeff also has a heart condition so the doctor says he might order just a little more heart testing so we dont have any surprises later! lol

At the Toledo Hospital, they did not give me the option for Aiden to live. They told me, he will die and there is NOTHING they could do for us. They sent us home and told us to make him comfterable for the time until he passes. PLEASE, if you know anyone with SMA let them know, there is help. Toledo did not give me this option. They are letting parents take there children home, and eventually bury them. That is not fair to the parents. THEY should get the choice!!! Even if its not SMA, if someone is diagnosed with something else, GET A SECOND OPINION!! It never hurts, and you will always know you did EVERYTHING you could to give your children the best quality of life you could...

Well, thats pretty much all for now, its almost 5 so i dont expect to much more to happen tonight but i will probably still post again before bed time :) We love you all..thank you for the care and support and prayers!!