Hello Family and Friends!
It has been a busy year in the Big O household, filled with joy and sadness. We spent most of 2008 preparing for life with our new baby. Jonathan was born on September 6
th, weighing a hearty 8lbs, 11oz!
I figured it would be good to start posting about Jonathan's condition since a lot of people have questions about our little guy. Jonathan has
Craniosynostosis, which means two of his sutures (soft spots in his head) closed too early. His specific closure is called
bicoronal and is along the top of his forehead.
He had genetic testing in November which revealed he has
Muenke Syndrome. This non-
syndromic syndrome was just discovered in 1996, and it is pretty rare- only
occurring in 1 out of 30,000 births. Luckily it is a very mild syndrome and should not affect his brain development or intelligence at all.
However, he does need surgery on his skull this coming summer. This is to make sure his brain has plenty of room to grow and not get squished. The doctors at Children's Hospital are some of the best in the nation, we know our baby is in good hands.
Wes and I are holding up well. The first two months were tough, as any parent can imagine. We didn't have much information about
Cranio until we went to Children's in November. Googling didn't help with our fears, either! I am so incredibly thankful I have Wes in my life. If I had to go through all this alone I would really be a mess! Our family and friends have been an awesome source of support, love, and much needed laughter. Thank you very much to everyone who has helped us cope, we love you!!!
My plan is to use this blog to keep everyone updated about how our boy is growing and thriving.
Thanks for reading Jonathan's Journey!
Maggie loves 'her' baby :-)
J.W.'s first Halloween
Those cute cheeks kill me!
