Today is Rare Diseases Day!
Click on the top picture to go to the Rare Diseases Day website and click on the second picture to go to The National Organization for Rare Diseases.
Baylie has 3 rare diseases that we know of.
These include:
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Living life with two girls ages 8 years and 4 years. My 8 year old has many medical issues.
Baylie and Kinzie
Baylie's diagnosis
Hydrocephalus:
-Aqueductal Stenosis
-Strata® Shunt placed 7-3-08
-set to 2.5
Pierre Robins Sequence
Absent Septum Pellucidum
Severe hearing loss: unilateral (right)
- permanent inner ear
Septo-optic dysplasia
-narrowed optic nerves
Torticollis
Dumping Syndrome
Precocious puberty
Os-Odondium
Cleft vertebrae in neck
Scoliosis w/ some pelvic obliquity
Hemivertebra in lower lumbar area
Spina bifida occulta
Mild hip dysplasia- right hip
Sensory Integration Disorder
G-tube and nissen
Developmental delays
34 week preemie
Nasopharyngeal Teratoma- removed
Cleft Palate- repaired
Tracheostomy - decanulated
Extra sinus fistula in nose- removed
Tracheal stenosis- repaired
-Aqueductal Stenosis
-Strata® Shunt placed 7-3-08
-set to 2.5
Pierre Robins Sequence
Absent Septum Pellucidum
Severe hearing loss: unilateral (right)
- permanent inner ear
Septo-optic dysplasia
-narrowed optic nerves
Torticollis
Dumping Syndrome
Precocious puberty
Os-Odondium
Cleft vertebrae in neck
Scoliosis w/ some pelvic obliquity
Hemivertebra in lower lumbar area
Spina bifida occulta
Mild hip dysplasia- right hip
Sensory Integration Disorder
G-tube and nissen
Developmental delays
34 week preemie
Nasopharyngeal Teratoma- removed
Cleft Palate- repaired
Tracheostomy - decanulated
Extra sinus fistula in nose- removed
Tracheal stenosis- repaired
Baylie's Surgeries
April 2003 (separate surgeries)
Nasopharyngeal teratoma removed
Tracheotomy placed
May 2003 (both done at the same time)
G-tube placed
Nissen
July 2003
Ear tubes placed bilateral
January 2004 (both done at the same time)
Cleft palate repair
Teratoma removed
June 2004 (both done at the same time)
Nissen redone
G-tube replaced in new area
September 2004
Third ventriculostomy
October 2004
Tracheal reconstruction
May 2005 (all done at the same time)
Dermoid cyst removed from nose, went from tip of nose to base of skull
Ears drained and tubes replaced
Scar tissue removed from trach stoma
October 2005
Sternoclidomastoid release
May 2006
Umbilical Hernia repair
October 2006
Eye muscle release- bilateral
July 2008
Shunt placed
December 2008
2 large hematomas drained from subdural space, external shunt placed
Nasopharyngeal teratoma removed
Tracheotomy placed
May 2003 (both done at the same time)
G-tube placed
Nissen
July 2003
Ear tubes placed bilateral
January 2004 (both done at the same time)
Cleft palate repair
Teratoma removed
June 2004 (both done at the same time)
Nissen redone
G-tube replaced in new area
September 2004
Third ventriculostomy
October 2004
Tracheal reconstruction
May 2005 (all done at the same time)
Dermoid cyst removed from nose, went from tip of nose to base of skull
Ears drained and tubes replaced
Scar tissue removed from trach stoma
October 2005
Sternoclidomastoid release
May 2006
Umbilical Hernia repair
October 2006
Eye muscle release- bilateral
July 2008
Shunt placed
December 2008
2 large hematomas drained from subdural space, external shunt placed
About Me
- Amber
- I am a SAHM who lives in Colorado. I have an 8 year old daughter, Baylie, who has many medical issues and a 4 year old daughter, Kinzie, who is typical. We are a busy family with lots of activities. In this blog you will find the everyday events as well as updates on Baylie.
Special Families
"God doesn't give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength. Raising a child with special needs doesn't TAKE a special family, it MAKES a special family."
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All content on this blog is protected by copyright. Please do not reproduce anything here without first getting permission from me. Amber Duncan RE: Life in this crazy house! at bayliesmommy at gmail dot com.
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