Part of Super Nevets condition is the inability to gain weight. We've struggled with it since he was like 3 months old. He came out huge (9lbs 11oz) but that was it. His neurosurgeon said it was really good that he was that big considering the severity of the operation he had when he was less than 24 hours old :D We've done all kinds of  testing to make sure we were missing anything. All came back normal. We've had him on a very high calorie diet since he was a wee one. Average calories for breast milk or formula is roughly 20. We had his bumped up to 40/45. We did pediasure and all kinds of other things. We've been adding butter to everything he eats since he went to solids :) Nothing would make him bulk up. We finally switched pediatricians after his first way refused to see anything but a chart. He wasn't following standard growth charts, so he was a failure to thrive child and I was a bad mom. We got an amazing new doctor. He noted that he was following his own growth chart and that was enough. He was still growing. Just slowly :) What a relief. So, I have finally realized that he's gonna eat what he wants to eat. He's 6, almost 7 years old. An average child has developed his own taste and knows what he likes. I try to make his diet include fruits and veggies as much as possible. If it turns out that's in the form of  smoothie and/or juice, I'm cool with it. He's a super active little man, so he eats like one :) Some days I'm shocked by the amount of food he can put away. Today, we had his "well check" before he goes back to school. Turns out, in roughly 5 months, but little chunk has gone from 37.04 lbs to 43.5 lbs. His pediatrician came in and was "What happened???" I told him he just woke up one morning and he was a giant LOL He's holding his own at 41 inches tall. He's now actually on the chart LOL H'e in the 16% for his weight. He's only about 6 lbs less than the average 6 year old and about 6 inches shorter than average. For once, my little guy is about average :) The only "problem" with that is that his BMI has gone up about from 16.3 to 18.4. Am I worried about him being obese? Oh heck no. He has a pretty well rounded diet, albeit, if I let him, he'd eat his weight in cheese daily :) He's an active kid and with school starting, that's only going to increase. I'd say this crazy weight gain is gonna go in the WIN category for Super Nevets!

Struggles

As I spend yet another night cleaning up vomit, I'm reminded of the limitations of Nevets that I just don't understand. This is by far one of the most frustrating and I wonder if it's something he'll grow out of or if I just need to accept it. The slightest hiccup can bring a whole meal up. Any kind of gag at all and we're on clean up duty. If he gets really upset, more cleaning. He can be just fine, eating and being happy. Filling his little tummy when BAM. I know he hates it as much as I do. He doesn't get it either. And that's really frustrating on a different level. Besides, how am I supposed to fattened him up if nothing stays in the tummy? :)

changes

There have been some big changes in our home. Mommy has quit her job and will now be a stay at home mom. That being said, we're going to breathe new life into our blog. Be prepared for weekly posts :)

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.

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 :)

Blasted Desk

Today we had a wee bit of a scare this morning. My son, bless his heart, is a super wobbly man. The past few days have been very wobbly. This morning our little man decided to test the sharp edges of our desk. See below

Notice the sharp corners? Well, he fell backwards and hit his head. Then as he was trying to make it to Mommy, he fall back again against the chair this time. That really ticked him off. At first I was like, okay just a bump. He's just screamin' because he's mad. Then he got to Mommy. There was blood on his head. I know head wounds tend to bleed a lot. So, I grab a towel and do the mommy thing. It dawns on my which side the ouchie is on. Shunt side. That always throws a curve ball into the mix. The cut was less than 2 cms from his shunt line. Instantly panic mode kicks in. I call work and say I may be late telling them why. We take him to Insta Care. Nope. Doctor won't even look at it. Sends us up to Primary Children's. Josh dropped me off at work. He's more than capable of takin' care of the boy :) They get there and the boy instantly has all the nurses wrapped around his little finger. :) He's such a flirt. I'm in so much trouble when he gets older. LOL Josh said they got the best ER doctor EVER. He made a real connection with Bugga. He actually let him check him out :) He said that everything looked fine. They did an xray to check placement. All is well. 

Now, the desk is another story. I may have a new project this weekend. :)

And he's been upgraded :)

Our little Nevets has been upgraded. He's now going to be a big brother! :) he's so excited. He loves to lift up my shirt and "hug the baby." We're due 01/01/2014. We started genetic testing today for Downs Syndrome, T18 and T13. We did an AFP test to test for Spina Bifida also. We are going to keep track via ultrasound for any Neural Tube Defects (NFD) We have taken all precautions to insure that S's condition doesn't happen again. We'll take this one no matter what tho!

:)

Inspired 5am emails

Recently, I got to wake up to a wonderful email from Steven's favorite Aunt and my favorite sister-in-law. Bless her heart! She has a hard time sleeping and she spends a lot of time reading and what not online. I'm not sure where she found this, but I'm so glad she did. I woke up feeling a little blue and this hit me right in the heart.

The Brave Little Soul

By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," she asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through her suffering and God's strength, she unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love.Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer.Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever.It was good. The world was a better place. The miracle had happened. God was pleased.

Lots of Fun

So far this has been a pretty uneventful Summer! Mommy and Daddy have both been working and with Mommy's newly found medical condition (lol) things are a little limited. BUT! We have started to decorate our sidewalk LOL We colored MANY beautiful pictures! He's blown LOTS of bubbles and been working on his bike riding :)

Scattering Sunshine

Our little man has always been a super happy fellow. Once that nasty encephalocele was removed, he hardly ever cried. The nurses in the NICU knew that if Steven was crying, there was something up. He started smiling when he was roughly 3 months old and hasn't stopped. He started laughing when he was about 5-6 months old. His laughter is so contagious. No matter where we go, if he starts giggling, soon, everyone within ear shot is too!

Today was family errand day. We needed a few groceries and whatnot. So, off to Smiths we went. S has been getting a big independent streak and feels that he has to PUSH the cart rather than ride in it. He needs to help Mommy. We get our cart and head over to the produce section. He sees donuts and I lose him. :) Several people saw him teeterin' his way to the tasty pastries and smiled. One person in particular caught my attention. A landscaper came around the corner with a not so happy look on his face, but the minute he saw S his whole countenance changed. S smiled his super huge smile and pointed at the donuts. The gentleman beamed at my little boy. He walked back to get something for lunch I assume and S waved as he walked away. This worker may or may not have English as a second language, but it didn't matter. Smiles are universal. We head over to the "wallamelon" to see if we can find a good one. A Smith's employee came by us, pulling one of those pallets moving thingys. She looked tired and not too happy to be at work. The minute S saw her, he ran and say HI! She stopped. He started walking towards the beer, of all things, that was on sale. She smiled and said, "My kind of man." He smiled again and blew her kisses. She got a huge smile on her face and you could tell, her burden was lightened. We saw her again in a different section of the store and instantly, smiles were on everyone's faces. 

My favorite part of our trip was checkout. We were being helped by a lovely lady. She saw S and smiled at him. He instantly blew her kisses and did his best Tatum Channing pose (lifted up his shirt with one hand). He pointed at his belly and giggled. The employee smiled so brightly and said that he had just made her whole day. She asked if he wanted a sticker. YES! She gave him, gosh, 5 or 6 stickers. He signed "thank you." And when she signed back "you're welcome," S light up like a Christmas tree! He was so excited to be communicating :) 

It amazes me how much impact he has a strangers. This little jaunt to the store was definitely proof of that. No matter where we go, he always makes new friends. He's brightened many a day. My freakin' genius of a husband remarked that this must be one of his gifts. Steven may have a lot of "setbacks" or "trials," but he has so many gifts that sometimes I forget. His kind heart and warm smile are definitely gifts from a loving Heavenly Father. 

My little hero scatters sunshine every where he goes.

not quite swimming

We haven't made it to the actual pool yet, but we did have some fun in the water. We recently acquired a "cosy coupe" via an online yard sale. I plan on turning it into a bat mobile. In order to do that, we had to scrub it down :) So, we set out to do just that. But we had to have a little fun too! Stevey hasn't had a lot of interaction with water outside of bath time. At first, he was not so sure about the cold water outside. But he "warmed" up to it quickly.

Getting got by Daddy! "So cold" he says.

all smiles! He loved it and now has a clean "red car."

Part of our summer bucket list is working on riding his tricycle. We started a few weeks ago. This is something that he's also been working on in his physical therapy sessions. It's a little difficult for him. But I know he can do it. I love watching his face light up when he starts to catch on. 

And with a little help from the Best Dad in the World, he's got this. 

Summer Vacation Starts :)

This year I'm looking forward to doing so many new things with my little man. His walking has increased and he loves to do it. Soooooo... Here is our bucket list for this summer:

1. Go to Zoo
2. Visit the Aquarium
3. Go swimming!!! We are going to our local rec center
4. Nature hike
5. Work on riding our tricycle.
6. Cover our entire sidewalk in chalk art
7. Paint a new masterpiece