My Child Has Special Needs: Now What?
Finding out that your child has special needs can be overwhelming. Some common reactions can be “What do I do now? Where do I start?” This training provides families with a brief overview of how to:
If you know of a family that has just found out that their child has a special need, please let them know about this training.
October 1, 2014
6:00 p.m. to 8:30 p.m.
Location:
Hopebridge Pediatric Specialists
21 South Park Blvd., Suite 39
Greenwood, IN 46143
Cost: FREE – Sponsored by Hopebridge
Questions:
Email asktraining@aboutspecialkids.org
Register: Register online at www.aboutspecialkids.org
Finding out that your child has special needs can be overwhelming. Some common reactions can be “What do I do now? Where do I start?” This training provides families with a brief overview of how to:
- find support for your child and family,
- find information and services,
- find coverage to pay for services, and
- will help you start thinking about the future
If you know of a family that has just found out that their child has a special need, please let them know about this training.
October 1, 2014
6:00 p.m. to 8:30 p.m.
Location:
Hopebridge Pediatric Specialists
21 South Park Blvd., Suite 39
Greenwood, IN 46143
Cost: FREE – Sponsored by Hopebridge
Questions:
Email asktraining@aboutspecialkids.org
Register: Register online at www.aboutspecialkids.org
Faith & Friends, Inc. is sponsoring a Christmas supply drive for the Ronald McDonald House at Children’s Hospital of Pittsburgh.
Pantry
· Single serving snacks
· Breakfast bars
· Cereal
· Popcorn
· Juice boxes
· Small milk creamers/sugar packets (assorted)
· Soup packages
No time to pack
· Deodorant
· Shaving cream/razors
· Shampoo+conditioner
· Toothpaste/Toothbrushes
· Lotion
· Body wash
For our home away from home
· Paper towels
· Liquid dish soap
· Auto dishwasher detergent
· Scrubber sponges
· Toilet paper
· Large freezer bags
· 13/30 gallon heavy duty trash bags
· Paper cups (hot/cold), paper plates/bowls (not Styrofoam), plastic silverware
Pantry
· Single serving snacks
· Breakfast bars
· Cereal
· Popcorn
· Juice boxes
· Small milk creamers/sugar packets (assorted)
· Soup packages
No time to pack
· Deodorant
· Shaving cream/razors
· Shampoo+conditioner
· Toothpaste/Toothbrushes
· Lotion
· Body wash
For our home away from home
· Paper towels
· Liquid dish soap
· Auto dishwasher detergent
· Scrubber sponges
· Toilet paper
· Large freezer bags
· 13/30 gallon heavy duty trash bags
· Paper cups (hot/cold), paper plates/bowls (not Styrofoam), plastic silverware
Pack the Pantry Pittsburgh
Indiana Angel's Pageant
Mark your calanders for the first-annual Indiana Angel's Pageant coming Winter 2013! This pageant is designed for girls and boys infant to age 21 with special-needs. Every child will win a title, ranging from Most Beautiful Smile to Best Personality, a t-shirt, a goody bag, and a crown. Children will be escorted on stage by local heros to be announced. Volunteers will be needed for set-up, take-down, glitzing up participants, ushering, and many other tasks. We also welcome siblings who would like to help kids get ready.
Location TBA.
Register
Sponsors are sought to help cover the costs for the children. Each child can be sponsored for $25, covering dress/tux rental, photographs, crown and prizes, and venue.
Thank you to the Angels Pageant System for their assistance and inspiration: www.angelspageantsystem.com
Location TBA.
Register
Sponsors are sought to help cover the costs for the children. Each child can be sponsored for $25, covering dress/tux rental, photographs, crown and prizes, and venue.
Thank you to the Angels Pageant System for their assistance and inspiration: www.angelspageantsystem.com
World Rare Disease Day 2013- February 28
Events celebrating World Rare Disease Day, sponsored by the Global Genes Project, had their kick-off this week. To learn more, please visit: http://www.prnewswire.com/news-releases/global-genes-kicks-off-wearthatyoucare-events-for-world-rare-disease-day-2013-190163201.html
Feeding Tube Awareness Week- February 10-16
This week we are celebrating Feeding Tube Awareness Week. Feeding tubes can represent a lifeline for people unable to eat or drink, or can provide supplementation. They can be used for several months during an illness or after surgery, or for as much as a lifetime. Feeding tubes can be temporary or permanent:
NG- nasogastric: a tube going through the nose to the stomach
OG- orogastric: a tube going through the mouth to the stomach
N/OD- nasal/oroduodenal tube, dobhoff tube: a tube going through the nose or mouth
to the duodenum (first part of the small intestine)
PEG- percutaneous endoscopic gastrostomy: a tube placed through the skin
into the stomach during an endoscopy
GT- gastric tube: usually refers to a tube with an opening flush to the skin (button),
going into the stomach
JT- jejunostomy tube: a tube placed through the skin into the jejunum (second
section of the small intestine)
GJ- gastrojejunal tube: tube with openings into the stomach and jejunum
www.feedingtubeawareness.org offers this information on feeding tubes:
~There are myriad medical conditions which impair a person’s ability to eat or drink enough to sustain life, grow, and thrive.
~Tube feeding allows for proper nutrition and hydration while:
~Children grow out of their condition or adults recover from a procedure
~Children and adults grow stronger for medical procedures
~Children and adults battle their disease
~Children and adults find safe foods to eat
~Children learn that food doesn’t have to hurt them
~Children and Adults learn how to swallow/eat safely
~Tube feeding is a life-saving and life-sustaining medical intervention.
~Tube feeding can be used as a supplement to oral feeding, or for children and adults who cannot eat on their own.
~Parents of tube-fed children are often thought of as not trying hard enough to feed their children, when often they have tried
everything. The most basic of instincts is to eat and to feed your child. When a child is tube fed, parents often feel like failures for not being able to nourish their child. Moreover, medical complications can be a challenge to navigate, making it even harder on parents.
Faith had her first GT placed when she was 6-months-old because of dysphagia (difficulty swallowing, choking). She was bolus fed formula through her GT several times throughout the day until she was 4-years-old. Faith was allowed to eat soft food and thickened formula by mouth for pleasure and practice. Because her stomach was not emptying correctly, a pyloroplasty was done in January 2011. For some reason, this caused her GI system to shut down. A GJ tube was tried, but the formula would leak from her jejunum up into her stomach. A separate JT was placed about a month later. Because she was not able to tolerate enough formula through her JT to sustain her, Faith was on TPN (IV nutrition) for about 4 months. She is now on continuous JT feedings for most of the day. While it took a while to teach her not to walk away from her feeding backpack (ouch!), we're so proud of her for learning to keep track of it .
NG- nasogastric: a tube going through the nose to the stomach
OG- orogastric: a tube going through the mouth to the stomach
N/OD- nasal/oroduodenal tube, dobhoff tube: a tube going through the nose or mouth
to the duodenum (first part of the small intestine)
PEG- percutaneous endoscopic gastrostomy: a tube placed through the skin
into the stomach during an endoscopy
GT- gastric tube: usually refers to a tube with an opening flush to the skin (button),
going into the stomach
JT- jejunostomy tube: a tube placed through the skin into the jejunum (second
section of the small intestine)
GJ- gastrojejunal tube: tube with openings into the stomach and jejunum
www.feedingtubeawareness.org offers this information on feeding tubes:
~There are myriad medical conditions which impair a person’s ability to eat or drink enough to sustain life, grow, and thrive.
~Tube feeding allows for proper nutrition and hydration while:
~Children grow out of their condition or adults recover from a procedure
~Children and adults grow stronger for medical procedures
~Children and adults battle their disease
~Children and adults find safe foods to eat
~Children learn that food doesn’t have to hurt them
~Children and Adults learn how to swallow/eat safely
~Tube feeding is a life-saving and life-sustaining medical intervention.
~Tube feeding can be used as a supplement to oral feeding, or for children and adults who cannot eat on their own.
~Parents of tube-fed children are often thought of as not trying hard enough to feed their children, when often they have tried
everything. The most basic of instincts is to eat and to feed your child. When a child is tube fed, parents often feel like failures for not being able to nourish their child. Moreover, medical complications can be a challenge to navigate, making it even harder on parents.
Faith had her first GT placed when she was 6-months-old because of dysphagia (difficulty swallowing, choking). She was bolus fed formula through her GT several times throughout the day until she was 4-years-old. Faith was allowed to eat soft food and thickened formula by mouth for pleasure and practice. Because her stomach was not emptying correctly, a pyloroplasty was done in January 2011. For some reason, this caused her GI system to shut down. A GJ tube was tried, but the formula would leak from her jejunum up into her stomach. A separate JT was placed about a month later. Because she was not able to tolerate enough formula through her JT to sustain her, Faith was on TPN (IV nutrition) for about 4 months. She is now on continuous JT feedings for most of the day. While it took a while to teach her not to walk away from her feeding backpack (ouch!), we're so proud of her for learning to keep track of it .
