December 31, 2014 "TAKE THAT SPINA BIFIDA!"

Dec. 31- What a roller coaster! Today Rayden LOST weight! He is at 5 lbs. 8.4 oz. As you can see in the picture his skull plates are still overlapping on the top. The front is coming together but still looks pretty bad. His head circumference is still going down. Today it was 35cm. We are so afraid it is going down too fast causing his plates to overlap. I wish there was something we could do. The last thing we want is for him to have a skull plate surgery!

Rayden's eye exam showed that his optic nerves are swollen but at least all parts are there! No, this doesn't mean his vision is 20/20 but it does show that he has the opportunity to see. The doctor didn't even think he HAD optic nerves much less all the other components! TAKE THAT SPINA BIFIDA!

The nurse catheterized him two more times throughout the night but it showed that he was emptying his bladder just fine so urology said no more cathing!! TAKE THAT SPINA BIFIDA!!

Dr. Alexander, the SB specialist, came to examine Rayden. He said we will not need a special car seat because we had the fetal surgery and his back is healed up nicely. He wants an ortho consult but believes Rayden has feeling down to his knees but maybe not so much in his ankles and feet. He thinks his thigh muscles are strong enough to support braces for walking in the future. That all sounds wonderful until he made the comment "That is if he has the cognitive ability to walk." What do you mean? Rayden WILL have the cognitive ability. His brain WILL fill in his skull and he will show all of you!! God is working miracles and I can't wait for Rayden to prove all of them wrong.

Michael held Rayden for the first time today. He has waited 8 days. He was so afraid of all the chords, monitors, IV's, and his skull plates. He thought he was going to hurt him. Michael started singing to him and rocking back and forth. It was the most precious sight. When I married that wonderful husband of mine, there were some things I knew from the start. He was gentle, thoughtful and wise. I knew he had a big heart. He has always been a wonderful father. I knew he was already in love with Rayden, but watching him hold his new born child left no doubt. It was the most precious sight.  I love seeing Rayden in his Daddy's arms.

Nanny Linda held Rayden for the first time today as well. Rayden is loved by so many.