Wednesday, February 02, 2011

Fun, Exhausting, Ups and Downs

There are so many fun parts about being a parent.  We work very hard to stay in the moment and enjoy where we are in the present (a gift Molly has taught us very well).  We do our best, but it is impossible to not get knocked down and caught up in the challenges, heartache and pain that come with having bones that break easily.

Molly went to the local science museum on Sunday for a friend's birthday and within the first 45 minutes "stubbed her foot", which cracked her femur.  The scream is awful.  I knew this one was not a 10 on the pain scale, but also knew she was hurting.  We got her out the car and by then she had calmed down and the pain didn't seem as great.  She then started crying that she wanted to go back into the museum.  In hindsight, that is exactly what we should have done, but it was hard to go from hearing her scream in pain to saying lets go back in and play.  I thought we were going to need to go home and splint her, but after lifting her into the car without a splint it was clear that the internal rods were doing there job and we probably didn't need to splint her.

We continued on with our day after making sure she was comfortable and I think did a good job of moving past the injury and enjoying the last few hours of our weekend.

Monday morning Molly woke up complaining of a sore throat and about 30 minutes later vomited.  She stayed home from school and was feeling better before lunchtime - hooray!!

She was back at school today and we had a great day together.  We visited a local bead store after school and had a lot of fun making a necklace and bracelet right there are the store.  We got home and I started making dinner.  Molly was playing just a few feet away and having a great time.  She was walking back and forth on a foam tile floor I just put down (from our old house) and suddenly started screaming and saying "my neck, my neck".  This was absolutely terrifying.  I don't know much about the spine and neck bones, but I know that we don't want them to break.  Other bones I know what to do with and how to evaluate and when we need to go for xrays and when we don't.  I had no idea what to do for this.  I was lucky and able to get a hold of the Orthopedic PA that we see and he let me know that we could wait and see and didn't need to rush right out for xrays.  Within a couple of minutes she was calm and soon after was playing.  Chip (the Ortho PA) suggested I check her arms and be sure she didn't have weakness on one side and I also tested if she could look up, down, left and right.  Everything seems OK, but she is not able to look left at the moment.

She has only had ibuprofen and is now asleep, which is a very good sign.

Molly is due for her Pamidronate infusion on Friday, which I think is a reason for these fractures and also means she probably doesn't have the pain tolerance she would otherwise have.

She is such a wonderful little trooper and isn't complaining at all.  I was lucky that she calmed down at the museum on Sunday and I was able to run in and buy a stuffed guinea pig, which made her day.  I love that something as simple as a stuffed animal can make things better.  I don't know what we will do when she is too old for stuffed animals :)

In other exciting news, we are looking into a puppy to train as a service dog for Molly (this will probably be a part-time service dog).  We are all excited at the prospect of the opportunities and confidence this has the potential to provide for Molly.

Thanks for reading my update/venting session.  We continue to be grateful for the wonderful daughter we have and all of you for helping support us and provide all that Molly needs to be a happy little girl.

2 comments:

Fairy Godmother said...

My aunt volunteers for www.canineassistants.org which she cannot say enough wonderful things about. There is a waiting list, but your position on the list is based on need after they interview you. It's a non-profit and all the dogs are provided at no cost to you. Just something to look into if you hadn't anlready. :-)

Melanie Rak said...

Hi,
You may want to call her ortho surgeon about the difficulty looking to the side. I don't know if she has it, but there's a problem with the skull base in some with OI called basilar impression that can lead to neurologic problems. It would need to be evaluated before it got worse.
Thanks
Melanie Rak