Cranio Update... of sorts?
Recently we had an appointment with an ophthalmologist. I suppose that one thing that remainsconstant is that there will always be doctor’s appointments, and there willalways be something that we need to prepare for. My darling daughter has been dealing withissues with her eyes, mostly due to the Craniosynostosis. With bi-coronal Craniosynostosis, due to thefusion of the cornal suture, her orbits (eye sockets) are misshapen. This further causes some issues with themuscles that allow the eyes to function.We have been in a holding pattern due to the successive cranio surgeriesthat she has had. It is well noted thatwith the work that was being done on her skull, anything that was to be donewith the eyes would be undone. For thelast four months we have been working with our daughter and placing a patchover one eye, for as long as she will allow and as often as she willallow. This forces her to use her weakereye, and it has shown some improvement.Upon his evaluation of her, the doctor wants us to continue patching foranother four months to work on strengthening her eye. This news was expected. However, the doctor is almost 100% certainthat he will need to perform surgery late summer/early fall to correct the alignment.
Now as a cranio dad, my daughter going into surgery hasbecome 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 hadworking 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 aswe thought it was going to be, and far from as scary as any of the craniosurgeries, it is still another surgery.
The doctor did tell us that the procedure takes about 30 minand she will go home the same day. Postop care is only drops in her eyes for a few weeks while she heals. See, that is far less scary than the 6 or 8hour surgeries, with days upon days in the PICU followed by weeks upon weeks ofclose monitoring. One would think thatthere would be a sigh of relief. But, I assureyou, there is not. We do not have a firm timeline as of yet, and will mostlikely not know any more until the end of July.The doctor did mention something about September… but we will keep youposted.
I AM A CRANIO DAD, I am scared out of my mind, and thank youfor letting me vent a little.