We made time to take Rayden to one of his favorite places to eat in Chapel Hill before his appointment. I love this picture.
As a mother of a child with Spina Bifida you are always waiting for bad news, especially at doctors appointments. Even though Rayden has been doing exceptionally well lately there is always a little doubt and lots of worry on a daily basis. I have been so anxious waiting for this MRI. I know Rayden is doing well but I can't see inside his head.
Have his ventricles remained stable? Are they over draining? Is the tube clogging? Is the shunt still placed correctly? Does his eye movement have anything to do with his brain? So many things could be going wrong and we just don't know it.
After our last MRI where the technician had to crawl into the machine, I knew Rayden was not going to just lie there. Therefore I asked if I could lie in the machine with him. The technician's welcomed this idea. Rayden was fine until they tried to put the cage over his head so he couldn't move it. He started lifting his head to escape so they rolled a blanket between his skull and the cage so he couldn't move. This, of course, made him furious! Just to give you a visual...Rayden was lying on his back with a cage over his head. I was laying on top of him, on my belly, with my chin in his chest holding his hands down. My elbows were touching the side of the machine and the top of my head was touching the top of the machine. Good thing I'm not claustrophobic. I wish someone could have taken a picture of that. It was the longest 3 minutes trying to sing to him and comfort him. He just kept saying, "I'm finished. Get out!"
As soon as we arrived down stairs in the clinic to see Dr. Elton they were ready for us. After Melody reset his shunt, Dr. Elton stated that his ventricles have not changed since his last scan so this is probably where he is going to stay. Although the ventricles have decompressed, Rayden will always have excess CSF in his brain. His brain is still missing two components: corpus callosum and septum pellucidum. His head is still dolichocephalic. His Chiari II malformation is so minimal that Dr. Elton said it was pretty much non-existant. Neurosurgeons consider anything more than 5mm a Chiari II malformation. Rayden's is only 1mm now. Dr. Elton actually saw Rayden's lazy eye. He said he didn't see anything on the scan that would indicate a problem within the brain causing this. In the little picture (side view of Rayden's brain) at the base of the skull there is a little bit of white. This is CSF indicating a super small Chiari.
In the pictures I have included the white matter in the center of Rayden's skull is Cerebral Spinal Fluid, CSF. In 2014 when he was first born you can see that there was hardly any brain tissue just a massive amount of CSF. Some docs told me he wouldn't be able to see (no optic nerves), walk (spinal cord damage), talk (brain damage), use the bathroom on his own (nerve damage), or have a normal life. He would be so far behind his peers that he would be considered mentally handicapped. The most current scan, 2017, shows a much smaller amount of CSF and a super amount of
healthy brain tissue. Yes, he is missing two components of his brain and his head is elongated, but he is proving everyone wrong. Like I've said before, Rayden is a true miracle. He is an
intelligent, living, seeing, talking, walking miracle! (just a
few of the things docs never believed he could do) God is giving him such a massive testimony to share. Power on, Rayden!!
Dr. Elton had never seen Rayden walk before so he was amazed when Michael opened the exam room door and Rayden walked out and down the hall. He even stated "I have the most adorable patients." Of course, he had to take a picture with him because he released us for another YEAR!!!!
Rayden was so excited he walked all the way down the hallway, through the waiting room, and down the hospital welcoming area! (That's a very long way!!) Video below.
