Schizencephaly Awareness WeAreRare.org

Noah's femur is healing Well according to his Dr's however from looking at his X-ray myself and showing to a few friends all in the medical field there seems to be an agreement that to us it simply does no appear to be set right. I have to question at this point if it was set this way because the Dr's felt like this is as good as Noah's life will be or if his leg simply could not have tolerated any manipulation. At any rate I see a very long road ahead for my little man and I've decided (if He is able to travel considering How it was set) to. Get a second and third opinion. I am disappointed to say the least. I sometimes look at Noah and question why He was chosen to have to live this way. Not just that but How much can his body handle. In just this year we've been through five surgeries. It's got to be as wearing to his body as it is to my heart. I wonder How much longer I get to see him smile through all the pain and I worry what his future is going ...

The challenges of a mother Over the last few years and fighting head on with Dr's complaining about Noah's scoliosis I had to wait until he got to 51% before they would do a corrective brace for him. That was six months ago and since that day things have been moving way faster than I expected.  First last month his left collarbone became dislocated due to the brace moving him so quickly. Today we found he is having major pain in the hip area.   Xray confirms that his hip is up and out for socket. Noah has severe scoliosis and as a result surgery is too hard on his lungs. The last surgery for a G-tube nearly killed him when his lungs collapsed and a three day stay ended up being In CCU for three weeks. So surgery is just not an option at this point.  Dr and family decided on a frog like cast with a metal bar to separate the legs as that seems to pop the hip back into place. hoping that eliminates surgery down the road.   I won't lie. I ...