We're Back

Wow, almost two months without a new post. Things have been crazy since school began. Aaron finished his Master's Degree in August from Indiana University School of Business. Way to go Dad! But now, mom is crazy busy. I'm teaching a course at Eastern Michigan University, going back to school at Oakland University to get my Early Childhood endorsement, working part time as a POHI teacher and taking Addy to therapy 4 days a week! Whew......some days I can hardly remember what day it is or what I am suppose to do. Thank goodness for the i-phone that keeps me in check.

At the beginning of September we went to Michigan's Adventure in Muskegon with Grandma and Grandpa Mills. Addy was not allowed on the rides at first because the rule of thumb was that you had to be walking. Once I explained that her not walking was not due to age, but rather to a disability, my how things changed and she was allowed on every ride. Funny how they don't argue with you about that.

Addy is very mobile still on her knees. She can also pull herself up to her knees, but not quite to her feet yet. She still has a long way to go with the strength in her legs. She will be receiving ankle braces (SMO's) in a week or two. We are hoping this will give her the extra strength she needs to get up on her feet more. She loves going to daycare every day and being with her friends. Still behind with speech, but has several words that we have been surprised to her from her such as mama, dada, all done, Dora, on, and many animal sounds.

Water table

I purchased a sand and water table for $10.00 at a garage sale that I was passing by. Addy loves playing in it. So far, we have only put water in it, but Addy thinks it's a pool and by the time she's finished playing in it she is soaking wet.

Playing in the pool

Addy and cousin Reese in the pool

Camping Again

This time we went camping with Marty, Steph and their little girl Kaya. We were at Wilson State Park in Harrison, MI.

Look at those hands

What a difference in Addy's hands from one year ago.

Finally we have answers!!!!!!!!!!

(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.

Look what I'm learning to do!