Since my last post Molly has continued to have new fractures :(. She fell quite badly on Thursday and fractured her left arm up by the shoulder. This is the arm that is quite bowed and fractured quite badly in June of 2010. We went to a new Dr. since our ortho has retired and the PA we love so much is now only doing Urgent Care. The xrays showed there might be a new slight fracture up at the shoulder near the growthplate, but nothing that needed serious splinting or indicated it was time for surgery.
Friday and Saturday Molly had her infusion (Pamidronate) that we call her "happy juice". It is AMAZING!! She starts feeling better within a few hours while the infusion is still in progress. I wish we had something like this that we could do every day. She was feeling good and very active over the weekend.
We had a good week last week until Wednesday. In the morning she was walking and took a bad fall. She screamed and started saying "my leg, my leg" and tears were streaming down her face. It is so traumatic for everyone. Molly has a college student that comes to play with Molly two mornings a week and she was here for this one. It is so hard to see your child in pain. I got medicine and then a splint for her left leg. She said it was her femur (upper leg). After the splint was on her left leg I noticed her right leg was bent and asked if she could straighten it. It became clear that this leg was also broken. I cannot say enough good things about her rods. Without her rods these fractures would have been horrifically painful and difficult to splint. Because of the rods her breaks stayed in place and her pain I would put at about 6.5 out of 10.
She did not go to school on Wednesday and we had a quiet day at home with lots of TV (Clifford and coloring) for most of the day. She slept well and transfers for the bathroom were relatively painless, which is a very good sign. She went to school on Thursday and had a good day, but was tired when she got home.
We started taking her splints off for a few minutes at a time to give her skin a break and by Friday she was happy with them off for over an hour. On Saturday she spent the whole day without a splint and then went into the hot tub. She is one amazing and resilient little girl. I know to those that don't live in the world of OI it sounds crazy to go from two leg splints for femur fractures to only a couple of days later no splints and back in the water, but most of this is due to the rods in her legs working as an internal splint and the fact that she has a VERY high pain threshold.
She started standing at the toilet for a moment or two and said things felt good. She then tried standing at her sink and her leg gave way and started hurting at which point she wanted her splint back on. She is now splint free, but having a little bit of pain. This is such a dizzying ride. I am so happy she is feeling better so quickly, but it is confusing and difficult to know how she is really feeling or what is appropriate.
We are looking forward to a good week here in NC. It was a beautiful weekend here and we got to spend some good quality time outside, which is good for all of us. We are looking forward to a good Valentine's day tomorrow :)
Sunday, February 13, 2011
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.
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.
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