Craniosynostosis--what a big and ugly word
And what a mess it has made of sweet Katya's body.
However, Dr. Carson (who was just as warm, personable and caring in real life as I have always heard him to be) seems to feel like he has a good handle on the situation so far. He feels that Katya's worsening is due to rapid brain growth due to increased nutrition and food (hard to believe that by virtually starving her an inadvertant kindness was done to her!). He noted the foot dragging (now happening with both feet) and her clumsy steps--things which have changed for the worse since her head issues deteroriated.
The plan is for us to get a High Resolution CT scan ASAP. "And then make them give YOU the CD of pictures and you send it to me!" said Dr. Carson. "Don't let them try to tell you that they will send it to me. I KNOW you will get it to me faster than they will!"
After Dr. Carson gets the CT scan results, he will form a plan of action, based on what he can see of Katya's head. So we don't have all the answers we want, but we are at least on the right track now and moving forward.
Dr. Carson also laid to rest the idea that two of Katya's fontanels are not completely closed (which is what we were being told by other Drs.) He said he can see why they might have thought that but a careful examination shows that not to be the case. They are closed.
Well, that makes a LOT of sense to me because I couldn't understand why if they were open we were getting such a bulge on the top of the head as her brain grew . . . He said the reason they are still a "dip" though is because her sutures closed unevenly and at the wrong times . . . so you end up with a mess.
We asked Dr. Carson if he has ever had a case similar to Katya's before and he nodded that he had.
As he walked out of the door, he won my Mommy heart because he tossed this over his shoulder at me, "We are going to focus on LIFE from now on! I believe someday Katya will amaze the world!"
Yeah. Me too. Me too.