Monday, May 26, 2008


Addy has been on a roll lately with her development. All of a sudden, it seems like she learns something new everyday. She can now go from sitting to crawling and crawling to sitting. This opened up her world of mobility. She is not quite crawling on all fours, but can get to just about any place she wants to be, pulling with her arms and doing more of an army crawl.

She can now do "more" in sign language when she wants more of something. Just today she learned to wave bye-bye and now likes to help dress herself....even her diaper! She is bearing more weight and able to play at her play tables standing up and kneeling. She does try to pull herself up at times if she's sitting slightly off the ground on a stool or mom's leg. Go Addy....Keep it up!

We saw the plastic surgeon at Children's hospital for her neck. The doctor was actually very lax about her neck, thinking that to her it didn't look so bad. We are going to try wearing a tot collar, which will be worn about 2 hours a day. It holds the neck in a straight position while at the same time stretching it out. It first must be ordered which I'm sure will take a while. The doctor was actually more concerned about Addy's bifid uvula and after checking her out again, said that she does also have a small notch in the roof of her mouth, which is considered a submucous cleft palate. Again she touched on the fact that a lot of these things often result in speech problems and delays. She would like Addy to be seen for an evaluation by a speech therapist that specializes in dealing with kids with cleft palates. This will happen the first of July. Thought also, that having her eyes rechecked would be a good idea because of the decreased use of her neck. We are also going to have a C-Spine x-ray redone. Last one was taken when Addy was a month old and nothing abnormal was noticed at the time. Going to get all of the above done and see the doctor again in 3 months.

Sunday, May 18, 2008

Outdoor Fun

Addy loves two of her new birthday presents!

Party Time

Pictures from Addy's first birthday party...............

Wednesday, May 7, 2008

Monday, May 5, 2008

Car Seat

Look.....I'm forward facing in my carseat now! Shhhh, don't tell anyone because I was suppose to wait until my first birthday.

We had a follow up visit with the Arthrogryposis doctor at UofM today. The visit went much better this time. The doc thinks that Addy is too heavy. Once again, we are back to this issue. She eats what a normal toddler of her age would eat, but because she's not walking or crawling, she's not burning it off at a decent rate. The doc is worried that due to her overall weakness, the weight will only add to her developmental delays. So, now we have to watch what she eats and try hard to make it as low cal as possible.

We also discussed bracing Addy's ankles for more support. She is doing much better with weight bearing, but still has a long way to go. She seems to do much better if we have a pair of supportive tennies on her. Decided to wait on the braces, since it could be one month before she's on her feet more or it could be six months. We will revisit this issue in a couple of months. The doc also noticed that Addy hyperextends one knee when she weight bears. Hopefully just due to muscle weakness at this point, but something to watch.

Lastly, I talked with the doctor about Addy's neck. Her current PT has recently suggested that she be seen by a plastic surgeon at Children's hospital who runs a torticollis clinic. Addy has not made a lot of gains with her ability to turn her neck to the left. I wanted this doctor's opinion. She too felt that Addy should be seen by a plastic surgeon. Most kids should show improvement or recovery by a year old and when they don't it might be time to talk about surgery. So, we will be seeing a plastic surgeon later in May and then may go for a second opinion at another one at UofM after we see the one at Children's Hospital.

That's all for now. Only 2 more days until my 1st birthday!