Welcome to Molly's Diary

Welcome to Molly's blog!

I recently read someone else's blog and learned a lot about what they were going through. I am hoping that this will be good therapy for me, a way to keep track of Molly's development, as well as a good way to share with all of you what life is like for us.

We have already come so far, I'm not sure how to sum up the past 4 and a half months in just one post, but here goes.

For those of you learning about Molly for the first time, she was born on 1/13/06 with Type III Osteogenesis Imperfecta (Brittle Bone Disorder) or OI as it is referred to. This was a genetic mutation and one that we did not know about until she was born. She suffered fractures in-utero of all of her leg bones as well as both upper arms. She has two dimples on her right shin from healed compound fractures (bone coming through the skin). Her limbs are also shorter than normal and quite bowed.

OI is a genetic mutation of the collagen gene. Collagen is the main building block of bone. As a result Molly's bones are weaker than normal. She will always have weak bones as well as loose joints and low muscle tone. In addition to weak bones she also suffers from low bone density (another OI trait). She is being treated every 6-8 weeks with an osteoperosis drug to increase her bone density. This doesn't change what the bone is made of, but means there is more of it. She has now had 3 infusions of this drug and has been tolerating them well.

She has had at least 9 fractures since birth that we know about. These fractures occur with little or no movement. She is on pain medicine around the clock to help manage her pain. So far they have not casted any of these fractures. When she fractures she will stop moving that limb and often this is all that needs to happen. She fractured her femur on Thursday and we splinted that for 24 hours to help manage her pain. Over time her fractures should become less frequent, but also more severe.

Despite all of these complications. Molly is a happy and spunky little girl. She smiles and laughes, and "talks" up a storm. She has already shown signs of a temper as well as how stubborn she is. She loves to be read to (especially Dr. Seuss and other rhyming) and loves the water. We are loving this little baby and doing the best we can to make sure she is receiving the best medical care.

Please visit her webpage to see photos and videos of our pride and joy:

http://jsulliv.googlepages.com/molly

Thank you for taking the time to read this!