Cast off!

What a week! 
As you probably saw, the cast came off last Friday. This was not exactly what the Dr wanted, but I fought to get it off since the X-rays do show that her bones are healing. The reason I fought for this was because in all my reading the most recent recommendations for kids with OI is to cast for the shortest amount of time possible. This is to preserve as much muscle as possible and thus reduce the risk of further fractures. This sounds great and makes sense, but also scary since her leg is not as protected as it was in the cast. We now have it in a splint which still offers some protection yet allows Suzie to have more movement. Taking the cast off was quite traumatic - I’m pretty sure she thought they were going to saw her leg off. There was lots of screaming & tears.

She now seems good during the day but has had some aches and pain at night, which I’m told is common after cast removal.

We had more appointments after she had her cast removed and were at Children’s Hospital for about 6 hours. The most interesting part was that we found out that our special girl with a rare disorder has a rare form of this disorder. She is Type 8, with two heterozygous P3H1 variants. This means she really is one in a million! It also means that it is very unlikely that she would pass this on to her kids if she ever has any. 

The other big update is that yesterday Suzie was at daycare ALL DAY!!!
Since I go back to work tomorrow, we made the jump from being there 3 hours to all day and she did great! She ate lunch and even napped. I was home awaiting a text to come get her and it never came. Both Brian & I were blown away. She’s there again today & we feel that our prayers have been heard. Amazing!

not excited about the doctor