Hydrocephalus, Arthrogryposis, Chronic lung disease

Overview:
Hydrocephalus is a buildup of fluid inside the skull that leads to brain swelling. Hydrocephalus means ”water on the brain.”

Symptoms:
Symptoms of the diagnosis- this is not specific to your child.

Testing/Diagnosis:
Hydrocephalus thru MRI, Catscans, ultrasounds
Arthrogryposis is presented at birth

Treatment:
Hydrocephalus has no cure only treatment is brain surgery for a shunt.
Arthrogryposis treatment is castings, braces and surgery

Resources:
Hydro Angels over America
Shriners Hospital

Personal Story:
I want to share an amazing little girl who battles everyday to be here with GODS Grace.
Janyia’s battle started before birth, at 13 weeks along utero. She was cut off oxygen for 29 minutes due to a surgery that had to be done to save my life. They had discovered Janyia would of been a twin but the other baby ruptured my tube causing internal bleeding. Right before they took my back I remember the pain and not being able to breathe. My life, family, unborn child flashed in front of my eyes and I looked at my grandmother and said I’m going to die, she then said to me GOD was with me. I had took my last breathe and everything went away, no more pain, I seen the gates of heaven. Drs didn’t expect me to survive let alone Janyia. I had 2 surgeries, spent 1 week in ICU and 2 more on a regular floor. I was cut open from breast bone to pelvic bone. Drs and nurses would keep telling me I would loose Janyia anytime. One night in the hospital it came to me Janyia was the reason I survived and I knew I was hers. Were eachothers guardian angels. At my 20 week ultrasound we discovered she had no use/movement waistdown caused by Arthrogryposis. 36 week ultrasound showed fluid on her left venterical on her brain and again I was scheduled Csection at 38 weeks. Drs prepared me with everything that has happened and now she wouldn’t survive birth. Janyia was born March 12, 2013. She spent almost 4 weeks in NICU having her first surgery at 2 weeks for a feeding tube. Janyia has reflux, aspiration and no motion. Her legs were bent in and up with clubbed feet. She went to ia city every Monday for 12 weeks of casting to get them out. She has been admitted several times for different reasons. August 2 she had surgery on her brain to place a shunt. August 4 back to surgery for a revise. She spent a month admitted due to weight loss and vomiting and was switiched to a gj tube.she is on a 20 hr continuious feed. She had surgery Dec 12 for ear tubes and adnoids removed. January 2014 she had a close call I took her in due to her heartrate 260s plus. She was on a ventilatior due to RSV. Janyia has seizures and sleep apena. She requires meds, breathing treatments and oxygen. She has a home nurse and ither PT/OT and early acces everyday. She has tons of appointments to see all her specialists. Janyia is a true miracle and proof GOD is amazing. Janyia will never walk and has very limited head and trunk support. She endures so much and smiles. Thank you Lord, he has amazing plan for Janyia

Contributed by MOM Janyia Miracle

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