(A sigh of relief). Addy went to see an orthopedic doctor last week for the first time. If you look at all of her issues, most of them are orthopedically related and it's the one doctor that we had not yet seen. I wanted her to be followed by someone now in case we have any future issues that may need attention. I asked around for many opinions on orthopedic doctors before I choose one to take her to.
I decided on Dr. Zaltz out of Beaumont Hospital. I had heard that his bedside manor was really good and that he was extremely intelligent. I couldn't have asked for a better doctor. I have been beating my head against a brick wall trying to get answers on what type of Arthrogryposis she has, so as to help guide our decisions about future children. So far, no one has been able to give us any answers. Dr. Zaltz took one look at her and without me even asking or uttering a word, he told me that Addy has distal Arthrogryposis, with her hands being the most affected. This was important to know because it tells us that her condition is not the one that scientists have linked genetically.
He went on to talk to me more about Arthrogryposis. He said that cognition is not affected and the fact that cognition is normal is going to help her lead a pretty normal life. She probably won't be the fastest runner in her class, but she will be okay. He also said that it used to be thought that Arthrogryposis was caused by not enough room to move around in the womb. This is no longer true. Arthrgryposis is a pre-exisiting condition, therefore because a baby has Arthrogryposis, they don't move around as much as a normal developing baby. I thought this was very interesting. He also said that it is starting to look like Arthrogryposis is a condition of the mitochondria in the chromosomes of the muscles. Sounds like a bunch of jibber-jabber, but means so much to me!
I then proceeded to ask what it might mean for future children. He said that he wouldn't even bat an eye at thinking about having other children. He feels that I would be just fine. He sees over 200 patients with Arthogryposis and not one family has more than one child with it.
He did take spine x-rays while we are there and said that Addy also has a minor congential deformity in her neck area. Almost has the appearance of Klippel-Feil syndrome. That presents with a short neck, low hairline, and fusion of 2 or more bones of the spinal column. He said he doesn't feel that she has that syndrome, but does have some of the appearance of.
I just keep asking myself why we didn't go see him sooner. How knowledgeable he was and what great information we were given. He is going to continue to see Addy and is mostly concerned with her neck at this time. He wants to watch her neck and she continues to develop and make sure that it doesn't begin to pull in any direction. Will see him back in 9 months. I feel like I want to go back tomorrow. Now that I have had time to absorb the information he gave me, I have so many more questions. At least I know we are on the right track.