So Spencer had an ophthalmology appointment this past Friday where we got
really good news. Sometimes with Cranio Synostosis there can be pressure on the
eyes or brain but in Spencer’s case his eyes and optic nerves are totally
healthy. There is no pressure and we should have no concerns about his eyes or
eyesight. This makes us all ecstatic.
While I was there I had a really interesting encounter. In the waiting room
was a little boy sitting on his grandmother’s lap. I knew instantly that he had
Saggital Synostosis even with his hat on. It is amazing that just a few months
ago I had no idea that anything like this even existed in this world and now I
have become so well educated that I can recognize it just by looking. His
mother and I got to talking and I found out that he does in fact have Saggital
Synostosis but was only recently diagnosed. This was shocking to me because he
looked quite old and to me it was quite obvious. She went on to tell me that
she didn’t have a pediatrician only a GP and that doctor just kept saying that
it was “molding from birth”. He is almost 12 months and as I understand it they
usually do the Saggital surgery around 5 or 6 months old. This made me really
think about Spencer’s condition and how we are so very lucky that we had such
great doctors looking out for him. He will therefore be right on track for all
his appointments and surgery.
This
mother also made a very interesting comment to me which I took to heart and
that was when she got the diagnoses she went online and could find very little
about it. I told her that is exactly why I was blogging about it and I gave her
the address telling her that I hope it will bring her some comfort and
education about this whole ordeal and that she is not alone. She is precisely
why I am writing this blog and hoping that it will help bring this condition to
the forefront of people’s minds.
Spencer has his next Plastics appointment with Dr. Phillips next Friday. (April 13th) where we will hopefully receive a surgery date.
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| Spencer at 6 months |
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| Spencer at 7 months |
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