More on the Doctor Visit

As Maggie said, last Thursday we went to a Skeletal-Dysplasia clinic at Children's.  We met with the Genetics and Orthopedic teams regarding Maggie's progress.  Both sets of teams answered many of the questions we've been gathering about how the genetics testing worked and what exactly does this all mean.  They were very informative and I walked away with a better understanding of her diagnosis.  The main point that I learned is that OI is so varying and the diagnosis is on a very broad spectrum.  The types are basically just for reference and were mainly used at a time when genetics testing was not as sophisticated as it is today.  Two people can be diagnosed with the same type, yet have varying degrees of severity.  They told us exactly where her mutation is, which is unbelievable.  And I am no Geneticist, so I will spare you the fumbling explanation that I would give.  Basically, there was one slight switcheroo at one tiny point as she was developing and the result was that the quality of her bones was affected.  See, a very scientific explanation!
How do they know which type she has, you ask?  They explained that the people with OI who have a mutation at this same place usually exhibit characteristics of Type III or IV.  However, as I said before, those characteristics are just a reference point and don't necessarily mean that she will exhibit all of them or to what extent she may exhibit any one of them.  This makes us feel better just hearing that.
The  doctors all seemed very impressed with how well Maggie has healed and how well she is progressing.  They suggested that we hold off on treatment to see how she does in the next few months.  We were really joyful to hear this, but (yes, I'm sorry, there is usually a but that comes after news like this) from what I've learned, Shriners seems to be the leading hospital on OI care, so we are going to go back to them next week to see what they recommend.  When I spoke to the doctor from Shriners today he did reiterate that we really don't know if she has gone fracture-free over these past several weeks since they are usually not complete breaks, but slight fractures.  And since she can't talk yet we may be confusing what we think is fussy from teething for crying from actual pain from breaks.  Who knows, I guess.
It's just a little confusing knowing who to get treatment from and at which hospital Maggie is going to get the best treatment.  I mean, its very nerve wracking knowing that this decision will affect her physical well-being for the rest of her life.  And not just physically, but her health as well, as we do not know any long-term affects of this treatment since it's only been used for about the past 10-15 years.  There are no long-term studies on it as of yet. I guess we have a lot to think about...

Thank you for all of your thoughts and prayers, they really helped!!