Meeting With The Doctors

Today, Jeff and I had our meeting with the doctors. They went over all our options with Aiden. Basically they started out really by telling us he is doing really well responding to all his treatments. They then asked what our goals for Aiden were, and how far we really wanted to push his care, ( or his life span i guess I'm trying to say). Dr. Wong told us it wasn't something that we had to decide at the time, she just wanted to know so she could plan for long term care, or short term care and she would give us over the next few months to see how much care Aiden is going to require. She said after taking care of Aiden for a few months, we will realize if we are able to take care of his every need, or if that's the kind of life we want aiden to live. WIth all that being said, Jeff and I decided to go ahead and have a JG tube put in, to help prevent the risk of aiden refluxing his formula. He will then decrease the risk of damage and catching pneumonia. We will then make an appointment to bring Aiden in to get his stomach wrapped. This will also reduce the risk of him refluxing alot too. This will require surgery, but it will not be hard surgery for his body to handle. Basically thats pretty much what they are afraid of his him refluxing his formula. Other than that, the doctor said frequent suctioning is normal and they expect that. Today, he had a few choking episodes. He was choking on his own spit and turned purple, that was veryy scary but i guess good for me to see before i go home and have to deal with it all on my own. We will continue to come down to cincinnati every 3 months for atleast a check up. They have to watch closely to see how he is handling his secretions and how his disease is progressing.
On the non-medical side of today, Aiden was veryy happy. He spent a lot of time with mommy && daddy. He also got suckers to eat, and he was happy most of the day. He is developing a temper!! He gets mad soo easy, I think its kind of funny. His heart rate goes up and he cries. He has slowly but surely been getting his personality back. Its funny to hear him yell at the doctors and nursing all day!! He watches them like a hauk when they come in the room. He also decided he would close his mouth when u try to suction in it, and keep his jaw locked down so you can't get in! lol this is just funny for me to see him get strong like that!! Yesterday i was clipping his nails and he was pulling his hands away from me, this is all new to me. He has never done anything like that before. Everyone keeps telling me, he is strongg for an SMA 1 baby!! I just dont want to give up on him, if he still has a fighting chance in him!! ((WHICH I KNOW AS MOMMY THAT HE DOES))
Yesterday, Jeff and I traveled to ikea to get him a bed tent. They didn't have the one I wanted, but they had one that looks like a leaf. He LOVES to pull the blanket over his head so I thought this would be right up his alley. Other than that, everything is going okay. We are having trouble with our medical equipment company getting all the proper machines to go home with. They think Aiden is to young and doesn't weight enough to use either machines they are using here, the bipap and cough assist. The doctor here on Aiden's unit is going to call the equipment company to see if he can get him what he needs. He says they just dont want to be held reliable if anything were to happen to him. He also said that the hospital would take that liability, so hopefully with all that they will get them for us!! Thank you everyone for your thoughts and prayers and hopefully tomorrow I will have wonderful news for everyone!!!