First the bad news. While we have patched Hayden's eyes for 4 months, he will still need eye surgery 2/11 to correct both eyes. The Opthamologist said that Hayden does not have depth perception and that the surgery will correct it. She said that the risks are less than Lasic eye surgery. However, he will be recovering for at least 10 days with bloody looking eyes. The good news is that he has good eye muscles and a perfect optic nerve.
MRI- went well. Hayden at at 2:30am and didn't get to eat again until 1pm. We had to be at the hospital at 6:30, which meant leaving the house at 5:30 just to be there for the 8am apmt. For some reason they think you need to be there really early with a baby. Then we got pushed back until 9:30 and Hayden didn't even cry from hunger until he had to be held down for the gas from the anesthesia. Our nurse Kathy said from the report it looked like he did great and held stable throughout. We didn't get the brain and spine results until at the Cranial Facial Clinic from the neurosurgeon Dr. George.
Cranial Facial Clinic- this is a scary place. These poor children had some real obstacles. Fortunately for Hayden, his MRI looked good as far as his brain development. While his sutures were prematurely fused, the doc said they still looked good. Whew! No surgery to open his skull!!! And as for the helmet, the doc said they are mainly for kids who have a flat spot due to sleep positioning and that can be corrected with the helmet. Hayden's flat spot is due to his shunt. He doesn't sleep on that side and so we are extremely grateful that the shunt is working and that is that.
Cool news...after the clinic, I got to meet one of my on-line babycenter Spina Bifida moms, Angie, and her 8 month old son Josiah. She recognized us from our blog pictures and stopped us in the parking lot! This was an awesome chance encounter! After the good news from the clinic, this left me with a real rush of joy feeling that we are not alone. Unfortunately for Josiah, they found that his shunt was not working and he had successful surgery shortly thereafter.
This was a long post, but there have been a lot of medical apmts.
Videos: I have also uploaded many new videos on my youtube link. Check them out!