Friday, April 2, 2010

We're Baack!

We had a great trip to PA. It was way to short but nice to be able to see everyone again! We went down on Monday and it was rainy for most of the trip.

This is a view of the Hudson River.
Usually you can see a long way down the river but it was super foggy that day.

Everyone Loves A Slinky!
Amber had a lot of fun visiting (and being spoiled!)
I think she really misses being the center of attention she's refused to play by herself since we got home, that's why it's taking me so long to update!

It's Spring Time!!
Well it is in PA. Their grass is green, things are in bloom and looking gorgeous! It was very hard to come home to brown and gloomy. (But things are picking up here finally!)

Our ride home was beautiful.
Nothing better to do on a long ride that cloud watch, this one was pretty interesting.

The next day (Thursday) we had to get up early for Amber's Dr appointments. The geneticists and the Orthopedic Dr do appointments together only once a month. This makes for very long waits in the waiting rooms and in the examination room. We got there before 10:30 and didn't leave until almost 2. The sad thing is the orthopedic saw us for maybe 15 min (he's rather frustrating) and the geneticist didn't see us for very long either (we've seen/talked to her a lot lately)

We do lots of playing and silly things in the room to keep Amber happy.

It seemed to work that day!
They really didn't have much to tell us.
The orthopedic said her right hip is better but her left is still not good (not really sure if he meant worse or not). He means her left hip is not quite in the socket right. Her left hip socket is also positioned more towards the front than the left. That's pretty much all he said he was really vague, everything is going to be monitored to see if it corrects itself or progressively gets worse. We see him again in three months
The geneticist didn't have much to tell us either. We weren't really surprised because like I said we've been talking to her a lot lately. She said one of the tests they did in Boston came back (this one tested her glucose, lipids and some other body chemicals) normal. The others will probably not come back for a month or longer because they are more in-depth. The report of the skeletal survey finally came back and we got a copy!! This is amazing because they hate to give out copies of anything and I didn't even have to ask this time!!! It doesn't make much sense to me (I'm trying to remember all the terms I learned in anatomy!) She did explain some of it. I'm hoping that we'll understand more once our developmental nurse looks at it and can explain all of it. What I can understand right now is that; bone mineralization is better (bones not as thin/brittle, chest is progressively getting worse, thigh bones are still ossifying (not good) and now some parts of her feet are ossifying too (ossification signifies the end or beginning of the end of growth in a bone). It says that the findings support Juene Syndrome, it's not a definite diagnosis but it looks like we're headed that way. Once I understand more I'll do a post just of the skeletal survey report and explain what they found in each area....or maybe do an area a day so its not overwhelming.

Its a beautiful day and it looks like the next couple of days are going to be nice too!
Amber is enjoying the fact that she can wear less clothing, she is too funny!
I'm going to color eggs today and hopefully get back to walking!

1 comment:

  1. Welcome Home! So glad you had a good trip/visit. Thank you for the update. Happy Easter! Looks like it's going to be a beautiful day.