Saturday, August 6, 2011

after the cast

It's been over two weeks since Juno's Spica cast came off, so I thought I should give an update on her.

But first, I wanted to write a little about the first few days after the cast.

It was hard!

I wasn't expecting that. I was so excited and I guess in my head I thought Juno would automatically be happier and be moving all over the house. I was envisioning her doing all the things that other babies her age have been doing for months, like her HD never happened at all.

You know what happens when you have expectations. They are usually not met.

Juno was very fussy for several days. Nobody warned me that she would be stiff and sore and not want to move her legs (although it makes sense after thinking about the position her legs were in for 3 months!) Just like getting her Spica on was an adjustment, getting used to life without it was another adjustment.

I always want to be honest on this blog, especially for those who are dealing with HD in their own lives. I cried the day after her cast came off. I was disappointed. I really saw for the first time since she was diagnosed how "behind" she is and how much muscle tone she lacks.

I also realized just how long we will have to watch her hips. She'll go back to the ortho every three months for a year and then every year until she is 14 years old. We still have a long road and it's a bit overwhelming sometimes. I'm already nervous about her next appointment in October.

I guess what I'm trying to say is this. I thought if we could just get through three months in the Spica, we would feel so relieved and it would be over. And in reality, it won't be over for a long time. It's kind of anticlimactic.

Now for the update.

She is rolling all over the place, and when she's on her tummy, she moves her legs like she wants to crawl. I think she knows how to crawl, she just can't physically do it yet. She can sit up pretty well on grass or something squishy like a bed, but has a hard time on flat surfaces like the floor. She is happy and loves playing on the floor with her sisters! Tempe has been my big helper--she goes around the house and looks for stuff that Juno could get now that she is more mobile.


travis and cammie said...

Dang sweetie thanks for your honesty! Crazy how those expectations get us! She'll catch up in no time're such a good mom and she'll do everything she can do catch up with her sisters! :-) good luck!

Julie Nickerson said...

I am so sorry to hear it has been hard for her after the cast. I would have had those expectations too.

I would have never imagined we would still be dealing with the brace at 13 months old (considering she started at 4 weeks old). She is weaning off it now, but I know we will be going for check ups for a long time.