Brayden
...usually goes by B.
My miracle baby toddler. He has the biggest smile that makes my day and melts my heart. He makes Cerebral Palsy look cool!! B loves to cuddle and will scam a lap for naps anytime he can. His drive and fight for life inspires me.
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Brayden came into this world 12 weeks early. After a text book pregnancy I woke up with some bleeding. An emergency trip to the midwife and we learned we were 5cm and in pre-term labor. Against everyone's best efforts to stop my labor, six hours later our B joined the world pink and screaming but very tiny.
Brayden James Helvey
August 27 2010
2 lbs 14 oz
15 3/4"
Brayden was taken to Loyolas level 3 NICU where our journey began...
He developed bacterial (e coli) meningitis, a grade III/IV brain bleed (IVH), and sepsis at 1 week old. He survived the impossible and at 7 weeks old his meningitis came back, which also brought on sepsis again. One day he was healthy and breathing on his own and then he was critically ill with a breathing tube...again! After weeks of healing he once again began to thrive.
After 84 days in the NICU he finally made his way home.
We were home only 5 short weeks when we saw signs of him getting sick. After a midnight trip to the ER we learned his meningitis had return...for a third time. This time we headed to Children's Hospital in Milwaukee where he spent 2 weeks in the PICU and 3 weeks on the nuero floor. Three brain surgeries, including a craniotomy to remove pockets of infection and treat ventriculitis, and loads of antibiotics later we were once again headed home.
One week later he had fluid build up in his head and he had his 4th surgery to have an EVD drain placed and then his 5th surgery to place a permanent VP shunt to treat his hydrocephalus, a complication of being premature and having meningitis.
We aren't sure why he kept getting sick and neither are the Dr's, they call him a one in a million baby. We have been extremely aggressive with treating the infection this last time and it's finally gone.
B still has long road ahead of him. He has suffered brain damage from his ordeals and will be special needs all his life. He is receiving occupational, physical, speech, and vision therapies to help him thrive to his full potential.
B has a large team of doctors and specialist that help us keep him healthy and thriving. He has a pediatrician, neurologist, neurosurgeon, ophthalmologist, rehab/special needs doctor, GI doctor, orthopedic doctor, orthotist. We are so thankful for his medical team and therapists. Although it can get overwhelming at times they make our lives run smoother.
B is currently on a seizure med (Keppra) for epilepsy because of the amount of seizures he was having while he was sick. He has been seizure free since Feb 2011. He takes a medication for his high muscle tone to help relax his tight muscles in his arms and legs (Baclofen), so far it's been a great help. We found out he has Nueromuscular Scoliosis because of the low tone (weak muscles) in his trunk and the significant brain damage. This is common in kids with brain injuries, with check ups and keeping an eye on it we hope it doesn't progress any further. He also takes Diazepam at night to help his muscles stay loose and help him sleep better.
He was given an overall diagnosis of Spastic Quadriplegic Cerebral Palsy at 19 months old. This is a direct result of a few factors; low birth weight, severe meningitis, and a brain hemorrhage. Cerebral palsy (CP) is an umbrella term for a condition that essentially means “his brain keeps his muscles from working the way they’re designed”. The Quad meaning all four limbs are effected. Learn more about CP here.
His 6th surgery happened June 2012 (22 months old) to have a Gastrostomy Tube (G Tube or feeding tube) placed. With this he can eat and get his meds/water much easier.
Life with a special needs child has been challenging but we are learning as we go and letting him lead the way. He'll do what he is capable of doing and that's OK with us. Brayden has a larger than life personality and the sweetest heart. I've never seen anyone smile so much, his smile lights up a room. He is so loved!
(Read Brayden's full birth story here)
B has a large team of doctors and specialist that help us keep him healthy and thriving. He has a pediatrician, neurologist, neurosurgeon, ophthalmologist, rehab/special needs doctor, GI doctor, orthopedic doctor, orthotist. We are so thankful for his medical team and therapists. Although it can get overwhelming at times they make our lives run smoother.
B is currently on a seizure med (Keppra) for epilepsy because of the amount of seizures he was having while he was sick. He has been seizure free since Feb 2011. He takes a medication for his high muscle tone to help relax his tight muscles in his arms and legs (Baclofen), so far it's been a great help. We found out he has Nueromuscular Scoliosis because of the low tone (weak muscles) in his trunk and the significant brain damage. This is common in kids with brain injuries, with check ups and keeping an eye on it we hope it doesn't progress any further. He also takes Diazepam at night to help his muscles stay loose and help him sleep better.
He was given an overall diagnosis of Spastic Quadriplegic Cerebral Palsy at 19 months old. This is a direct result of a few factors; low birth weight, severe meningitis, and a brain hemorrhage. Cerebral palsy (CP) is an umbrella term for a condition that essentially means “his brain keeps his muscles from working the way they’re designed”. The Quad meaning all four limbs are effected. Learn more about CP here.
His 6th surgery happened June 2012 (22 months old) to have a Gastrostomy Tube (G Tube or feeding tube) placed. With this he can eat and get his meds/water much easier.
Life with a special needs child has been challenging but we are learning as we go and letting him lead the way. He'll do what he is capable of doing and that's OK with us. Brayden has a larger than life personality and the sweetest heart. I've never seen anyone smile so much, his smile lights up a room. He is so loved!
