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.

Back to School Back to School

Today Super Nevets made his way back to school. It's year 2 of his Functional Skills Preschool Class. He was super excited to be back! There are a lot of changes this year. His teacher from last year, Mrs H., accepted a position for a different district. I was heartbroken when I found out. Her and her Aides really helped Nevets blossom last year. The progress he made was astonishing. He LOVED his teacher and all the aides. But, I do have to admit. This position is much better for her right now. I talk to her quite a bit and my heart goes out to her. She is missing all her students like crazy. Those little ones in his class sure do grab a hold of your heart. Luckily, even though the teacher is new, all of the Aides are returning. He also changed classrooms. Everything was done kind of last minute, so there is a lot of work to be done :) 

We got up this morning and I asked him if he was ready to go to school today. You would've thought he had just won the lottery! He ate his breakfast in almost record time. We were ready to go over 25 minutes early. I was shocked. Normally, this little boy drags his feet the whole way. Any time we said anything about school, he was like "Mom we go to school now." We get to the car and I asked him if he was ready. He said "Go Go! School Mom!" So off we went. We turned the corner and his school came into site. I swear he squealed! He kept saying "Mom, school!" We got him out of the car. He didn't want to hold any one's hand. He just wanted to go go go. I was really proud of him, though. While he was super excited and wanted to hurry, he noticed that he was going pretty fast down the hill and slowed down. Normally he would've just kept going and tumbled. He did very well :) We get inside and still, no hands. He's a big boy now, apparently *sniff sniff* We get to his classroom  and he hands me his backpack and we start to go hang it up. The Aides see him. The first one, Miss Lindsey in the picture below, called his name and he stopped dead in his tracks. He practically ran into her arms. He was lit up like a Christmas Tree. The others noticed him too and I swear, it reminded Josh and I of when Norm would walk into the bar on Cheers. Mommy and Daddy no longer existed. :) We left and started to run a few errands. We got done and Josh asked if we could go get Stevey now. It had been like 15-20 minutes. I asked why. He said he missed him already. All summer, those two have been partners in crime in the mornings while Mommy went to work. I think that Daddy might be lonely for a while. :)

I am horrible! I have no idea where the summer has gone!! And we have been dealing with a few family issues. I hope, over the next few days, to get caught up on the summer and share some of our experiences. Since September is also National Hydrocephalus Month and National Chiari Malformation Awareness Month, I plan on doing some posts about that :)