cornales

Cranio Update... of sorts?

Recently we had an appointment with an ophthalmologist.  I suppose that one thing that remains constant is that there will always be doctor’s appointments, and there will always be something that we need to prepare for.  My darling daughter has been dealing with issues with her eyes, mostly due to the Craniosynostosis.  With bi-coronal Craniosynostosis, due to the fusion of the cornal suture, her orbits (eye sockets) are misshapen.  This further causes some issues with the muscles that allow the eyes to function. We have been in a holding pattern due to the successive cranio surgeries that she has had.  It is well noted that with the work that was being done on her skull, anything that was to be done with the eyes would be undone.  For the last four months we have been working with our daughter and placing a patch over one eye, for as long as she will allow and as often as she will allow.  This forces her to use her weaker eye, and it has shown some improvement. Upon his evaluation of her, the doctor wants us to continue patching for another four months to work on strengthening her eye.  This news was expected.  However, the doctor is almost 100% certain that he will need to perform surgery late summer/early fall to correct the alignment.  

Now as a cranio dad, my daughter going into surgery has become a fact of life.  It never gets easier; there are so many unknowns, and such a great level of fear.  I KNOW that the doctors that she has had working on her are amazing, and that they love her so very much.  But it never gets easier.  Even though this one is not nearly as scary as we thought it was going to be, and far from as scary as any of the cranio surgeries, it is still another surgery.  

The doctor did tell us that the procedure takes about 30 min and she will go home the same day.  Post op care is only drops in her eyes for a few weeks while she heals.  See, that is far less scary than the 6 or 8 hour surgeries, with days upon days in the PICU followed by weeks upon weeks of close monitoring.  One would think that there would be a sigh of relief.  But, I assure you, there is not. We do not have a firm timeline as of yet, and will most likely not know any more until the end of July. The doctor did mention something about September… but we will keep you posted.

I AM A CRANIO DAD, I am scared out of my mind, and thank you for letting me vent a little.