January 7, 2016 "CT Scan for fused suturs"

I didn't sleep a wink last night. Although I surrender to God's will, I found myself praying that He would NOT allow Rayden to need this terrible brain surgery. I couldn't stop picturing his skull being ripped apart and the agonizing pain he would have to endure.

We arrived around 9:30 in hopes to visit with my dear friend, Anne Turlington, but that didn't go as planned so we just checked in early. They didn't take us back for sedation until 11:00. As usual, Rayden's charming smile and magnetic personality captivated all the nurses in the unit. He can really draw a crowd! They all wanted to play with him while Michael and I answered questions.

Rayden's main nurse hooked him up to the monitors and soon administered the medicine. It was a clear liquid in a syringe with a little white tip on the end, which converted the liquid into a mist when administered. He placed the white tip into Rayden's nostril and squeezed. He didn't like it at first but soon calmed down.

Just as expected, Rayden fell hard and fast asleep within 15 minutes. Soon after the nurses took him away I got a text from Anne. She had passed Rayden in the hall! Was this irony or angels watching over the two of them?

It took Rayden a little over an hour to wake up from the sedation. He had to drink some juice and eat a graham cracker before the nurse allowed us to leave. Rayden loved this requirement!

We were able to visit with Anne over lunch before we all had to go our separate ways.

It seemed like an eternity for them to call us back to speak with Dr. Elton, neurosurgeon. We visited with Maya and Lisa before Melody came in our exam room to inform us that Dr. Elton had been called to emergency shunt surgery. She did inform us that Rayden's sutures were NOT closed though. So we could relax a little at least!!

When Dr. Elton returned he went over the findings of the CT scan stating that Rayden's skull suitors appear to be open although they are not centered on the top of his head. His left side is a little higher than the right as well. Rayden's head shape is called Dolichocephaly, an elongated head. Dr. Elton stated he would consider Rayden's case just a little less than severe--moderate, I suppose. He said we could purchase a molding helmet to reshape his head, but he has concerns in a child with a shunt and pressuring the skull to change shape.  The helmets also cost around $3000 cash since they are considered cosmetic.

He couldn't get over the fact that Rayden's ventricles had decompressed to normal range! He even stated that he thought they would always be large, but now they are not! He said he wouldn't have ever expected that!! (Prime example of Rayden writing his own book!!) All-in-all Dr. Elton stated he had "nothing to fix!" OUR PRAYERS HAVE BEEN ANSWERED!! Rayden threw his little arm up as if to praise the Lord and Dr. Elton raised both of his arms in unison praising God as well. We love our doctors!!


Other findings: His Chiari II malformation is still there, a little depressing but expected. Rayden's brain is functioning with missing components. He doesn't have a corpus callosum nor a septum pellucidum (both are in the center of the brain). He also has possible colpocephaly, a congential brain abnormality. 

The septum pellucidum is a membrane separating the two lateral ventricles. The corpus callosum is the nerve fibers of the mind that allows communication between the two hemispheres of the brain.

With all that being said, I could go into the problems associated with these conditions but I'd rather just say that Rayden is a little miracle...No, a super large miracle!! My mind wonders back to our time in the NICU when the doctors were telling us that Rayden's brain was so full of CSF that he barely had any brain tissue, no optic nerves to be seen, and would probably never be able to see, and have extreme developmental delays. Fast forward to a year later...Rayden's optic nerves are there and no longer swollen. He CAN SEE! He may be delayed but not to the extent that they were saying. The CSF in his ventricles has decompressed to normal size and his brain tissue has expanded to fill up his skull. Dr. Elton stated (and I quote) "His brain scan is not good, it's GREAT!!" His brain has filled in DRAMATICALLY!" We praise God every day for the miracles he is performing for Rayden and pray that his life be an inspiration to others.

December 25, 2015 "First Christmas at HOME!"

What a difference a year makes! Rayden was only one day old and recovering from his first shunt surgery last Christmas. Therefore we say this is his 'first' Christmas! And what a joyous celebration it was! Our house was filled with laughter and smiles because all our children were home; happy and healthy!

Rayden's first birthday with family.