Brextin's Hope

Infantile Spasms - infant epilepsy - Microcephaly (Brextin became our guardian angel in May 2010)

Search Brextin's Blog (type in Medek, Oxygen therapy (HBO), Wingbo, neck ring,G-tube, etc)

Tuesday, August 11, 2009

Our photo blanket of our "Angel"

Brextin Kohen - Our Guardian Angel!

Our Brexy!!

Our Angel!! We lost him 1 week short of his 3rd birthday

Blog Archive

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Helpful products

A baby sling - that is good for water and land.
A chilling pad (helpful for kids who can't sweat)
A cup that eliminates the need to tilt the head Way BACK
A great body supporter - while on floor!
A great oral motor chew device
A great resource for medical supplies (sell and buy)
A recordable bear - I LOVE this item - I was able to record my son's giggle and babble (1 minute recording)
A special needs bed - that is reasonably priced
A ton of helpful products! A Ton - A TON!!
Adaptive bikes and accessories
Alternative to disposable diapers
Another baby helmet for those who may fall down
ATCH? This might help with shots!! Lesson the pain!
Attaches to baby carrier for extra storage
Autism clothing
Baby helmet for those who suffer from epilepsy - or falls a lot
Bath seat
Bib for a bottle to prevent - dribble.
Bib for bottles - prevents leakage
BIG bath towel - might be helpful!
Bike #1 that might work for a special needs child
Bike #2 that might work for a special needs child
Booster stool for when legs don't reach the floor while going potty
Brextin's favorite chew toy- Sophie
Bumbo chair for children with special needs
Button Buddies (these wrap around the G-tube)
C belly belts - velcro belts - that don't connect in the front
Cip Kup (we LOVED this cup - we just squeezed the liquid into his mouth)
Clothes that zip from behind (kids with autism can't undress themselves)
Colic baby (helpful)
Cooling mat for carseat
Cooling mat for stroller
Could strap onto a wheelchair/stroller
Doodlebug high chair helper
EscapeeJays Pajamas (zips in back)
Euro tub (I LOVED this tub!!)
Faucet extender for shorter children
Fleece soakers - helps at night - to prevent leaks
G-tube belt cover
Go and Grow special needs camping chair
Great books for vision impaired children - they actually show movement
Great for stroller or carseat - for extra support
Great head & body supporter for carseat or stroller
Great high chair helper!!
Great molar teether
Great photo items/props!!
Grocery cart for special needs kids!! Awesome!
Gum massager
Head supporters for carseat or stroller
Helpful bib clips - can go any where with you!
Helpful speech/oral products
Helps head control
Hokki chair (a great balance chair)
Hot and cold therapy items
Interesting teether
Keeps kids hands out of their diaper (for poop smearing kiddos) - PJ's
Kimba Spring Wheelchair by Otto Bock (This was Brextin's wheelchair)
Mama Taco Towel
Merry Muscles (a great exercise device)
More soft/bibs - but a special bandana one to help with drool!
My Huggabebe (a great product if your child doesn't have trunk control)
nap nanny (wonderful for those who can't sit up or have reflex)
Onsies up to 6T
Organic toothpaste (this can be swallowed)
Otto Bock bathing chair
Otto Bock for kids
Oxygen backpacks for children
Pacifier with bumps - great for oral simulation
Papillon Baby Bath Tub Ring Seat
Pewi - a unique walker for kids up to 44 lbs
Prevents g-tube disasters while sleeping
Reflux positioning (we used the tucker sling)
Reflux wedge for bed or crib
Seizure saftey table mat
Sleep aids
Special needs clothing - body suits with a g-tube pocket
Starter toothbrush - but it would be great for oral simulation
Swimming neck rings (A great product - in the tub and swimmng pool)
Talking Child - (He is beginning to learn how to suck from this cup)
Tap to talk communication device (Nitendo DS) we don't use this - but thought it could be helpful to others
This link is to help our site be better recognized.
Tool belt for moms to help with baby needs
Travel beds for baby or older child
Tummy time (looks like a great product!)
Waterproof/super soft bibs (long & short sleeve)
Wingbo usa (I was lucky to find a used one on Craigslist)
Z-vibe - A wonderful oral motor tool!!
Zipper in the back clothing - prevents children from removing it

Brextin all full of smiles!

Our Family!!

Together Forever!

Supportive list serves and websites

Microcephaly support group (yahoo group)
Infantile Spasms support group (yahoo group)
Children with micro

Brextin hits our local paper

Leader Telgram article on Brextin

Hyperbaric Oxygen Therapy

This is what we go in during his dives.

Brextin in glasses

He looks so grown up!

History of Brextin - May 2007- May 2010

Our son was born on Mother's Day in 2007 - we thought everything was fine - when he was born they did wisk him away because he was swallowing fluid - so they suctioned the fluid out and placed him on extra oxygen - just to be safe - they said I had nothing to worry about - he should be fine -

We noticed from day one he had a very pour suck - he also had a vomiting problem - it seemed that he threw up everytime he ate - then he ended up having a poop issue as well - every diaper was a messy diaper - so we were sent to the doctor - they placed him on a special formula - thinking he was protein intollerant -

The poop issue ended, but not the vomiting - at about 2 months of age - he got his immunization shot and 4 days later he stopped eating - we were rushed to the hospital - where he remained for 10 days - they did test after test - and found nothing - except that his head was smaller than the norm and sent us on our way -

Our local ped doctor checked over the reports and wanted a second opinion - so we were sent to Mayo - they claimed that he could have seizures - however none were noted yet - but the brain pattern was present - then about 1 month later - the seizures started to appear - so we had another EEG and that was when he was DX with Infantile Spasms -He was then placed on two types of seizure medicines - vigabitran or Sabril and topamax. Two years later - he is now off both of those drugs - but is currently taking generic Keppra.

We tried intensive therapy, Hyperbaric Oxygen therapy, and MEDEK therapy in June of 2009 - in hopes it would help him further his development. By doing these therapies over the summer - has allowed him to be able to get into 4 point and rock back and forth.

We just completed a second round of oxygen treatments - and currently he is learning how to suck - which he has never been able to do - so this is a huge milestone. He still is unable to crawl, communicate or stand independently (but will stand when placed up against a wall). We plan on attempting AIT training over the Summer. (he died before this was attempted)

Our son had a rocky start for his first three years of his short life, but he made a ton of strides, we were hoping he would have beat the odds of this terriable disorder, however we sadly lost our son one week before his 3rd birthday - we were in the process of receiving a second opinion on his condition at a hospital in the cities - and we have no idea what happened but he was called to the Lord above to become his angel right while we were in the hospital.

He began to vomit during each seizure which caused aspiration which spread to phenomena which took his life in just a couple of quick hours. I still cannot believe it – he was bouncing in his bouncer and sucking on his fingers just 24 hours before his death – however the heavens now have a very special angel and we have a very very special guardian angel who will watch over our family each and every day. He will be forever missed!

Brextin standing with help

I am hoping the intensive therapy over the Summer will strengthen his middle muscles so he can stand alone.

Brextin in his Merry Muscles

Jump Jump Jump

Brextin

Brextin in four point

Brextin at The Special Children Center

Therapist Dee is having Brextin bounce in the "Frog" suit.

Rolling over

Brextin is now rolling

MEDEK Therapy

Brextin with his MEDEK therapist, Azriel Novogroder PT

Brextin

All smiles

Brextin sitting up!!

He can now sit up!

Brothers (I get a new charm every year)

My photo charm - of my two boys (click on picture to see where I purchase them from)

Brextin's Seizures

This is what Brextin looks like while he is having a seizure. His hands freeze - eyes go in one direction - and he just freezes until it passes.

Brextin

This picture was taken by Forever Photograpy about 1 week before being hospitalized.

Our boys

Brotherly love!!

About Me

Brextin's Hope: I am a mother of two boys - one who was born in 2004 and the second son was born in 2007 in May (who is now our guardian angel) - He had infantile spasms or also known as West Syndrome, along with a smaller head than "norm" and a very contagious smile!

View my complete profile

My Blog List

Dear Trevor
Welcome to Elijahland
The Fisch Tank
Pray For Brayden
Grace's journey
better than normal
Makenzies Miracle
The Mighty Monkey
kidz
Special Parent Connections
Sara's Road to a Smile
MY LIFE AS MSK'S MOMMY
A little piece of heaven
Moms in Common - Home
CaringBridge / nashschult / Welcome
Journey with Hope
Suzy Beth Booze - Homepage
Days In the Life of Christina
CaringBridge / brycebennett / Welcome
Roa Jo's Journey

Comments - left by others (this gadget hasn't been working)

Followers

Current seizure medicines

Keppra - this amount keeps rising until we have his seizures under controled
Topamax (150 mg) (we just weaned him off of this)
Vigabatrin (1000 mg) (we just weaned him of this as well)

Alternative products/therapy that we have tried or plan on trying

Communication Innovations in Madison
Cuevas MEDEK therapy (we went to NJ)
Hyperbaric Oxygen Therapy in WI
Merry Muslces designed by an OT
Nutritional suppliments
Special Children Center in Hudson, WI
Water therapy (neck ring)

Helpful sights about the disorder

Microcephaly Information
Infantile Spasms
Infantile Spasms

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Please feel free to contact me - click on the word "Email" below.

I enjoy being connected with other parents who either can relate or caring individuals that just would like to drop me a note. Just click on this word "email" to send me a message.

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Brextin's Hope

Search Brextin's Blog (type in Medek, Oxygen therapy (HBO), Wingbo, neck ring,G-tube, etc)

Tuesday, August 11, 2009

More videos on MEDEK

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Followers

Current seizure medicines

Alternative products/therapy that we have tried or plan on trying

Helpful sights about the disorder

Please feel free to contact me - click on the word "Email" below.