Tuesday, July 15, 2008
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.
Addy went for a speech evaluation shortly before the holiday. It was determined that she is developmentally behind in expressive language. Addy doesn't have any words yet, but she is extremely interested in her surroundings. She is constantly pointing at things and verbalizing sounds. She wants you to tell her the name of everything she points at. She's very interested in pictures and scans the room to find all the photographs. I recently made her a picture book of family members and she can almost point out anyone in the book when named.
During the speech evaluation the therapist had asked me if she was doing any creative play such as feeding a baby. I had not even thought about getting her a baby. I just assumed she was too young. When the speech therapist handed her a baby she didn't know quite what to do. So, Grandma Kris bought Addy a baby. She wanted it opened in the store. We opened it as soon as we got in the car and without showing her anything, asked her to feed the baby. Well, much to our surprise, she knew exactly what to do. She has really bonded with this baby. It's really cute. She nows feeds the baby with the bottle, spoon and fork and even makes the sucking noise when she does it.
So, Addy is now crawling freely about our house. She is still a rather slow crawler, but each day seems to gain more strength and quickness. Her therapists in OT and PT were rather surprised when we returned after the holiday. The speech therapist wants to see her back in 4 months to determine if she should begin speech therapy on a regular basis.
Tuesday, July 8, 2008
14 months old..............................2 months old
Addy...always has her nose in a book
Like I said before
Addy in the pool
Ethan in the pool