There has to be something you can do for him!

[mommymine3]

I had to take Brady to the Pulmonologist yesterday and we ended up there for 3+ hours running tests and measuring his air intake and output. He scored pretty high (60 percent out of a 100) for a child with SMA so that was a good thing. Due to his Spinal Muscular Atrophy Brady's spine has severe Scoliosis and his spine is shaped like an S and is putting pressure on his left lung. There for he is only getting a full breath from his right lung and his body is working harder to breath and that's why he is tired a lot. They also did blood tests and everything came back great this morning. After the Dr was done examining him he asked if I could go in his office and the nurse took Brady to watch a movie. He asked if I had any questions. We have been everywhere and anywhere with him hoping someone can help us. I asked "what's next, what do I do, where can I take him"? He said there's not much you can do. Surgery is a no to fix the spine because he is so weak and probably can't endure the surgery and recovery. And the only thing the surgery will do is ease some discomfort. We are doing a good job with positioning him and transferring him a lot so he hasn't had too much pain just mostly in the morning when he wakes up. I broke down in his office and just said there has to be something. I can't just watch him waist away and die. For those that don't know this horrible disease it affects the motor neurons that control voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. If you think about it your muscles control everything. Intellectual activity is normal and it is often observed that patients with SMA are unusually bright and sociable. Which in his case is very true, he is in a regular 2nd grade class with an aid and is in 4 grade reading and math. I think in our case that's what makes it that much harder. Cognitively he is 110% there and his body has a different path. I hate just watching him suffer. Everyone says he's so happy he's not suffering, but really can you be that happy when you are confined to a wheelchair and wonder why your so different and your body keeps changing and getting weaker and weaker. Sometimes I sit here and ask God why he can't have something like Cancer so he at least has a fighting chance, with SMA there is no chance. It's just not fair, I don't know what I'll do without him. The Dr said this is his disease running it's coarse and it only gets worse. I am so sad and even sadder for his younger Brother Ashton (5) and his little Sister Ava (12months) to have to experience life without him. Ash and Brady are truly best friends they spend every second together and Ash helps him without even asking him too. I always wanted kids but made sure we had Ash and Ava so Brady could experience what life was like with a Brother and Sister. I just can't think of what's going to happen 6 months from now or 6 years from now but I know it's in Gods hands and we will take it day by day. We just love him and make sure he knows it every single day.

[MomtoDuck]

Jun. 24, 2009 at 4:09 PM

Honey have you tried taking him to a Shriner's hospital to be evaluated? You need to find a Shriner who will "sponsor" him but that isn't very hard. Go to the Shriner's website for more info. It isn't just for children with burns (like a lot of people think). They treat a large range of issues and spine issues are one of the many. It's worth a shot right? Blessings.

[lady-t3984]

Aug. 31, 2009 at 10:08 PM

I'm just reading this, I would like to answer your question,yes, people can be happy in wheelchairs, it's usually the person who is pushing the wheelchair who has the problem, I have been disabled for 20 years, I was an healthy woman,but 1 day I couldn't walk, you also say ,you thought if your son had cancer ,it might be better, for me,it's not,1 day I'm fine,the next day I'm in the hospital. When, I look at your son picture,I don't see a wheelchair, I see a boy with a big smile,who reminded me to be thankful,and happy. I know it's hard for, I can't imagine what you are going through,but,remember to smile. The advice the poster gave you about the Shriners is very good advice. Best wishes to you.