Wednesday, May 31, 2006
Molly has kept us quite busy this past week. We had her 3rd infusion last Mon/Tues, which went relatively well. We had a "day off" and then she fractured her left femur on Thursday. She was inconsolable, so we had an X-Ray done to make sure that it wasn't displaced. She has been quite uncomfortable since, thank goodness for pain medication.
She had been sleeping in her crib for the past week or so and even slept through the night - 5 nights in a row!! After the fracture, she has been back to getting up during the night and is back sleeping in her swing, I don't know what we would do without it. I was so desperate last night, that I packed her up in the stroller and took a walk at 1:00 AM!! What an odd experience to be out in the neighborhood in my PJ's and garden shoes walking in the middle of the night. Just further proof that parents will do ANYTHING to try and make their babies happy/sleep.
We are in the midst of working with the insurance company to try and get preapproved for treatment at the Kennedy Krieger center. They treat 250 OI patients a year as opposed to the 10 or so the UNC hospital sees. We are hopeful that this will be a big step in the right direction for Molly. It will be nice to have Doctors explaining things to us as opposed to the other way around.
We have also decided to go to the OI conference in July in Omaha. We are hopeful that we will learn a lot from the lectures and meet some other families in similar situations who can give us advice and support as we process the road ahead.
Molly is over on the coach chatting up a storm with her new friend (a fish balloon), we are eagerly awaiting her making her first goo goo ga ga or da da sounds for the first time. Right now she likes to talk with her tongue sticking out, a rather unique and adorable way of "talking". She seems to really want to communicate with us - we can't wait!!
She is now 4 and a half months old and getting ready to eat "food" (cereal) for the first time - yikes! What a big step. We have finally gotten the breastfeeding thing down, so we're going to hold off for another few weeks or so. We will definitely take lots of pictures when the big day arrives.
We went to the therapy pool today. They do not have a changing area for babies, which made it extremely stressful with such a fragile little baby. We finally made it to the water and after a few minutes of adjustment she began to relax. I am hoping that with frequent pool time she will begin to kick and splash more. Today was a good start and hopefully a fun activity for the two of us. We have some nice neighbors who have offered us the use of their pool during the day - can't wait for the sun to warm it up so we can walk over and swim!
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:
Thank you for taking the time to read this!