Hey everyone!

It's been a rough end of year for our little family. Nevets's little brother was born sleeping at 34 weeks. We've been struggling to get a little sense of normalcy in our lives. I should be able to get caught up on everything going on in the world of Super S within the next few weeks.

Thanks for reading :)

Yup. I'm horrible. Between all of Super Nevets doctor and therapy appointments and all the appointments for this pregnant, diabetic momma, I barely have time to breathe. Quick update: he's rocking school! Loves it! He's been making lots of strides in physical therapy. He is a lean mean talking machine. In December, he will start his first round of botox for his muscle rigidity.

I hope to get the time to update you all on the MANY things Nevets has been up to this weekend :) :)

progress progress

Nevets has been showing some serious progress in physical therapy. We have been working on a few things like his balance, jumping, and high-stepping (picking up his feet). Today he made his way through an obstacle course doing all that but jumping. There was a huge pile of toys-turtles, monkeys, and pigs. All of which he loves. He had to pick up a toy and then climb up some stairs and climb down. He then had to step over (high stepping) a row of swim noodles without touching the noodles or he had to start over. After he made it over the noodles, he had to walk over to a basket and deposit his toy. He then had to make his way back to the pile of toys, via all the stuff he had just done. He did this about 12 times. After all that he still had energy to jump. So his therapist, Dawn, incorporated some jumping activities towards the end.

Dawn was very pleased with the progress. Every time we go, he shows improvement. We see her every 2 weeks. She works him hard and doesn't let him get away with "cheating." I'm so excited!

Hydrocephalus :(

Nevets was born with an encephalocele which caused his Chiari Type III and hydrocephalus. It also is the main source of his spinal bifida, and cerebral palsy. This is a picture of Stevey with his encephalocele in tact. 

The term hydrocephalus is derived from the Greek words "hydro" meaning water and "cephalus" meaning head. As the name implies, it is a condition in which the primary characteristic is excessive accumulation of fluid in the brain. Although hydrocephalus was once known as "water on the brain," the "water" is actually cerebrospinal fluid (CSF)--a clear fluid that surrounds the brain and spinal cord. The excessive accumulation of CSF results in an abnormal widening of spaces in the brain called ventricles. This widening creates potentially harmful pressure on the tissues of the brain.

Hydrocephalus treatment is surgical, generally utilizing various types of cerebral shunts. It involves the placement of a ventricular catheter (a tube made of silastic), into the cerebral ventricles to bypass the flow obstruction/malfunctioning arachnoidal granulations and drain the excess fluid into other body cavities, from where it can be resorbed. Most shunts drain the fluid into theperitoneal cavity (ventriculo-peritoneal shunt), but alternative sites include the right atrium (ventriculo-atrial shunt), pleural cavity (ventriculo-pleural shunt), and gallbladder. A shunt system can also be placed in the lumbar space of the spine and have the CSF redirected to the peritoneal cavity (Lumbar-peritoneal shunt). Nevets is the proud owner of a VP Shunt that drains into his abdominal cavity :) He has only had to have two placed in all his almost 5 years. When he was roughly 4 months old, his first shunt got infected. Dr. Marion Walker replaced the shunt and we have had NO problems since then. Whew :)

SEPTEMBER

September is National Hydrocephalus Awareness Month, National Chiari Malformation Awareness Month and Childhood Cancer Awareness Month.  The first two are very close to our hearts. Be prepared to learn a little bit about them all through out the month :)

Chiari Malformation-in the simplest form

This little guy has Chiari Malformation Type III. It is the most serious form of CM. The cerebellum and brain stem protrude, or herniate, through the foramen magnum and into the spinal cord. Part of the brain’s fourth ventricle, a cavity that connects with the upper parts of the brain and circulates CSF, may also protrude through the hole and into the spinal cord. In rare instances, the herniated cerebellar tissue can enter an occipital encephalocele, a pouch-like structure that protrudes out of the back of the head or the neck and contains brain matter. The covering of the brain or spinal cord can also protrude through an abnormal opening in the back or skull. Type III causes severe neurological defects. Generally is it not compatible with life and is "almost always" fatal. the life expectancy is less than 2 years. Our little hero will be 5 in November.