First, I have to say... SHRINERS- WE LOVE YOU!!!
Another new piece of information... Lincoln has finally been diagnosed with craniosynostosis. I have known for quite awhile that his head shape was something more than what was being explained to me- you know the feeling when your instinct and gut tells you there is more to the picture than the docs are seeing. We have gone through 5 helmets in 6 months and his head shape has remained virtually unchanged. NOT NORMAL!!!
Hello people. This is when I really get heated. I have asked a gazillion and one times if there could be something else happening and affecting his head shape. NOPE I was told he just has a severe case of positional plagiocephaly that will take longer to correct.
Thank you again to Shriner's Hospital and their dedicated staff- they mentioned to me that his head shape was quite irregular and asked if I had his head checked. "Why, yes I said, by my pediatrician, neurologist and orthotist many times- all to no avail of any recommended further treatment. The surgeon at Shriner's said,"Ok, as long as it is being followed."
His statement pushed me to take further action and get to the bottom of it. So, the next day I made an appt. with all 3 docs AGAIN, whom all said I don't think it is anything but they ordered x-rays and CT scans to appease me. 3 days later we find out he does in fact have a significantly more serious condition which will require surgery AND very soon. You can look at this site to see what our little man will be undergoing this time around. www.cappskids.org
In general terms, one of the bones on the right side of his head that is suppose to stay open until age 25 to allow for adequate and symmetrical brain growth has closed prematurely and is causing his brain to grow out to the left (which makes his head flat on the right) and is smashing his eye down on the left and raising his brow on the right. That is why his head shape is not round but rather tall and a bit flat on the right. All this will be fixed in a procedure where they shave the head, cut his scalp from ear to ear and open the bone that has closed, take off the front of the skull bones and reshape them to look normal and symmetrical.
After the procedure his face and head will look better and his brain will be able to grow symmetrically and healthy. We are hoping to have a surgeon at Stanford do the surgery. We are awaiting approval. Please pray for this to happen. We would really appreciate it!!!
There is never a dull moment or really one without worry here in our house, but we are so blessed each day with joy and love and happiness and thankfulness that I really can't describe. We have an amazing BOY!!!
Loves to all!