So at 1 p.m. on his birthday, I could feel my legs; I promptly told the nurse and she said that I had to wait until 4 o'clock to go down and see him, needless to say I was beside myself. However, they did say that Jonathan could come down and see him. Jonathan felt terrible about being able to see him before me, but I wanted pictures, if I couldn't go myself, so I made him go. He went alone the first time---I am not sure h
ow he did it, but he found strenght inside of himself to see Jackson for the first time alone, something I am not sure I could have done! He came back up and had tons of pictures, he took close ups of the hands and feet, he knew mommy would want to see it all. At that point, we realized that the diagnosis of Distal Arthrgryposis was highly unlikely, since all joints were involved. The second person to see Jackson was my mother.
ow he did it, but he found strenght inside of himself to see Jackson for the first time alone, something I am not sure I could have done! He came back up and had tons of pictures, he took close ups of the hands and feet, he knew mommy would want to see it all. At that point, we realized that the diagnosis of Distal Arthrgryposis was highly unlikely, since all joints were involved. The second person to see Jackson was my mother. Finally, at about 4:30 I got to meet my baby boy. 
I was so overjoyed but also so overwhelmed! The same night Jackson was born we met with the geneticist. He told us that he does not believe that Jackson's Arthrogryposis Multiplex Congenita (AMC) is genetic. Arthrogryposis Multiplex Congenita is the new diagnosis we have been given. It is a general diagnosis that translate into "multiple joint contractures at birth". In order to get a more specific diagnosis, we would need to see the geneticist again and possibly one in Seattle (Judith Hall, who is the leading Arthrogryposis researcher), but that will come later, as the genetic diagnosis does nothing for us as far as treatment options. Simply, because what Jackson has is not a syndromic form (children with syndromic forms have other complications, which may include the need for a feeding tube, breathing tube, etc.).
I was so overjoyed but also so overwhelmed! The same night Jackson was born we met with the geneticist. He told us that he does not believe that Jackson's Arthrogryposis Multiplex Congenita (AMC) is genetic. Arthrogryposis Multiplex Congenita is the new diagnosis we have been given. It is a general diagnosis that translate into "multiple joint contractures at birth". In order to get a more specific diagnosis, we would need to see the geneticist again and possibly one in Seattle (Judith Hall, who is the leading Arthrogryposis researcher), but that will come later, as the genetic diagnosis does nothing for us as far as treatment options. Simply, because what Jackson has is not a syndromic form (children with syndromic forms have other complications, which may include the need for a feeding tube, breathing tube, etc.). Jackson spent the first eight days of his life in the NICU, we had a wonderful group of doctors and nurses, who all took very good care of him. On day four of his stay, mommy was sent home. It was one of the hardest things that Jonathan and I ever had to do. We left him in capable hands, but it was tough. On hi
s sixth day of life and his first Valentine's Day, Jackson had surgery for bilateral hernias in his groin. Dr. Loppo sucessfully reparied both hernias.
s sixth day of life and his first Valentine's Day, Jackson had surgery for bilateral hernias in his groin. Dr. Loppo sucessfully reparied both hernias. 
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