It's not a tumor
I don't actually remember seeing Kindergarten Cop when I was young, but for some reason the "it's not a tumor" line (in Arnold's voice) was a popular saying around my house. It's come to mind during the last few months as we have been trying to figure out what is going on with P. Bibby's eye. When she was about six months old we noticed that her left eyelid was looking somewhat droopy and the skin around her eye was red. I mentioned this at a checkup she had with the doctor, but she had an ear infection at the time and he thought it might be related to that. It seemed to be getting worse, and was definitely not getting better, so I asked again at her nine-month appointment. This time the pediatrician gave me the name and number of a pediatric ophthalmologist. When I called I was disappointed to find out that their closest appointment was in February, but I scheduled it anyways. Her eye was still bothering me and I decided to call back and plead for a better appointment time. We were able to move it to this past Thursday and I'm very glad that I did.
The eye doctor was very pleasant and I felt very at ease with him. I was amazed by all the things he did to be able to examine the eyes of a very wiggly, eleven-month old baby. He told me that her eye looked fine, but that her face was asymmetrical. In fact, the way he said it sounded like he assumed that I already knew that. I was shocked and somewhat embarrassed that I had never noticed it, but once he pointed it out the difference between the left side and right side of her face was glaringly obvious. His receptionist was amazingly helpful with getting us appointments in Salt Lake next Thursday for a CT scan of her head and a consultation with a pediatric craniofacial specialist.
The tentative diagnosis the eye doctor gave me is craniosynostosis, which means that one of the bones in her skull fused too early and so the left side has not been able to grow. At first I thought it might likely be the other possibility, which would be a flattened skull from sleeping on the same side, but when I found these pictures I was convinced. Several of them look exactly like P. Bibby's face. If we don't get a diagnosis of craniosynostosis next week I will be very surprised.
I'm actually glad I did some searching on my own so that I can know what to expect. The only real treatment for it is surgery and I'm glad I have some time to prepare for that possibility. Mr. Fob and I have already talked through the logistics and the emotional issues and I think we are prepared for that option. It will probably have to be sooner rather than later since she is nearly one year old. 2011 is already shaping up to be a much crazier year than I expected.
The eye doctor was very pleasant and I felt very at ease with him. I was amazed by all the things he did to be able to examine the eyes of a very wiggly, eleven-month old baby. He told me that her eye looked fine, but that her face was asymmetrical. In fact, the way he said it sounded like he assumed that I already knew that. I was shocked and somewhat embarrassed that I had never noticed it, but once he pointed it out the difference between the left side and right side of her face was glaringly obvious. His receptionist was amazingly helpful with getting us appointments in Salt Lake next Thursday for a CT scan of her head and a consultation with a pediatric craniofacial specialist.
The tentative diagnosis the eye doctor gave me is craniosynostosis, which means that one of the bones in her skull fused too early and so the left side has not been able to grow. At first I thought it might likely be the other possibility, which would be a flattened skull from sleeping on the same side, but when I found these pictures I was convinced. Several of them look exactly like P. Bibby's face. If we don't get a diagnosis of craniosynostosis next week I will be very surprised.
I'm actually glad I did some searching on my own so that I can know what to expect. The only real treatment for it is surgery and I'm glad I have some time to prepare for that possibility. Mr. Fob and I have already talked through the logistics and the emotional issues and I think we are prepared for that option. It will probably have to be sooner rather than later since she is nearly one year old. 2011 is already shaping up to be a much crazier year than I expected.
Comments
Best wishes.
I hope everything goes well with the appointments and that everything will go well from here on out. I know surgeries for babies are scary, but if it's the best thing for her, then go for it. #5 had to have surgery when he was 6 months old to remove a cyst that had fused (and was growing) to the bone above his right eye. Apparently it had developed in utero --but it was ME that found it. Not the doctor. So, even though these doctors should have figured this out sooner, I'm not surprised it was her mother that brought up the concern in the first place. You are a GOOD MOM. :)
Good luck!
And seriously, if you need any babysitting or help or anything just give me a call.
If only we weren't so quick to say a baby's cute and think no more about it!
ps. We said "it's nadda tumah" at my house too.
Good luck with everything, and keep us posted.