Our Hope

Aiden was born in February, a happy healthy baby. Everything went wonderful, he was a good tempered baby, loved everyone around him, and was the cutest baby in the world. On September 23rd, Aiden chocked on his own spit and was rushed to the hospital. On the 25th, after a lot of testing, he was diagnosed with spinal muscular atrophy. Basically the motor neurons are dying off and are not sending signals to the muscles to work. The muscles then get weak and stops working, and eventually the disease takes his life. He went home with a feeding tube, suction machine, and sleep monitor. Everything was going good, he seemed very happy, started gaining weight back, and just became comfterable at home. Then on october 15th, he started having trouble breathing..I felt like I knew something was wrong all week because he was having trouble sleeping, i was having to suction him a lot more, and he was just all around cranky. A little while after we arrive at the hospital, we decided to put Aiden on a ventilator. He stayed on his vent for 3 days, that 3rd day they decided to start weening him off. The 5th day he was completely off the ventilator. They have just been giving him a little air pressure through his nose to help him breath easier. The doctors pretty much seemed like they were done doing everything they could for him. They had lost hope that he would survive much long.

A few days after I arrived at the hospital, I got a phone call from my aunt Lori. She began telling me about a lady who had a son with the SAME condition as Aiden, and he would be 5 in just a couple months. She told me she would hook me up with her if I decided I wanted Aiden to fight his disease. Not even five minutes after I got off the phone with my aunt, a lady by the name of Kendra called me. She then told me how her son lives with the same condition as aiden and that he is the light of her life. She would not trade him for the world. After a lot of crying and questions, she decided to give me some numbers to another hospital that could actually give us some help with keeping him alive and healthy for a while longer. She too had been in the same spot with our previous hospital.

I left my house OVER JOYED!! I could not stop crying. Just the thought that I might have an ounce of hope made my day. I haven't really been happy since this whole thing started. once i arrive back at the hospital, they were already getting him ready to transfer to the new hospital. The doctors didn't really seem too happy about sending him away. One doctor even told jeff, "they cant do anything else for you than what we are doing RIGHT here." I do not blame them, they dont seem children with SMA survive often at all.

Today-they life flighted us to the hospital for children with SMA. We will be working with a team of doctors who know about aiden conidtion and can help me keep him healthy for longer. Hopefully one day, we will get to come home and spend time together, not exactly like old times, but atleast at home--comfterable, together.