Timeline from first symptom to diagnosis

Our son Connor was diagnosed with JDM in January of 2010 and here is a bit of a timeline to show you how this diagnosis was reached...

Towards the end of November 2009, Connor mentioned some pain in his right foot. We found a Plantar Wart and began treating it. We went on vacation in Germany were he mentioned a pain in his knee's, to feeling in his own words, pain 'inside his legs'. By the time we got home on December 9, he needed to be carried almost everywhere. By the end of December he was unable to feed himself, dress himself, sit up or down, lay down and of course walk. Here is a list of tests he went through between December 10 to December 28, 2009

X-ray of his Hips
MRI of his spine
X-ray of his chest
CAT Scan of his brain
CAT Scan of his chest
MRI of his chest
MRI of his hips
Numerous Blood Work
Spinal Tap
and we finished with a Muscle Biopsy

There were many speculations of what might be causing Connor so much pain and one of them was Gullian Barre Syndrom (GBS) due to his first symptoms showing up within a few days of his H1N1 Flu Shot.

The final Diagnosis came on January 11, 2010
-Juvenile Dermatomyositis (JDM)-

Hope

Hope

Saturday, May 21, 2011

Starlight Foundation :)

Tonight I promise I write just a quick note but I am posting a description of the Starlight Foundation and the wonderful things they do for Children with a Serious Illnesses AND their families!


Last month we went to a most wonderful Easter Party and today we went to a Field Day. Both days have been filled with laughter and pure fun and we are so grateful to this Foundation.


This is what their Statement reads at the C-Springs Chapter:


"The way we see it, while researchers look for cures and doctors work to restore a child's health, Starlight works to restore the entire family's spirits.


When a child is diagnosed with a serious illness, the day-to-day joys of childhood take a back seat to the rigors of treatment and hospitalization. Starlight Children’s Foundation Colorado is dedicated to improving the quality of life for children with chronic and life-threatening illnesses and life-altering injuries by providing entertainment, education and family activities that help them cope with the pain, fear and isolation of prolonged illness.
We understand what families go through when a child is sick, and how important it is to find relief from constant worry and isolation. Our programs have been proven to distract children from their pain, help them better understand and manage their illnesses, and connect families with others facing similar challenges so that no one feels alone.
Unlike any other charity, Starlight offers a comprehensive menu of outpatient, hospital-based and Web offerings that enable us to provide ongoing support for children and families — from diagnosis through the entire course of medical treatment.
Programs include:
Family activities and outings that give families a chance to have fun together away from the hospital so they can relax, regroup and return home with a renewed sense of strength and hope. The events also forge important connections between families struggling with similar issues to combat feelings of isolation.
In-hospital entertainment technology that helps kids fill hours in hospitals or treatment centers with therapeutic fun; find distraction during long or painful medical procedures; access Starlight’s online educational programs and communities; and stay connected with the outside world and keep up with school work during extended hospitalizations.
Online communities and interactive websites that help seriously ill teens connect with each other and find tips and strategies for coping with their medical conditions.
In-hospital playrooms, kid-friendly treatment rooms and special events that help ease the loneliness, fear and boredom that accompany hospital stays.
Educational programming — delivered via online interactive games, ezines, webisodes, a comic book and websites — to help sick children understand common hospital procedures and manage illnesses and injuries such as cancer, sickle cell, cystic fibrosis, asthma, Crohn’s and colitis, severe burns and kidney disease.
Research studies have found that Starlight’s programs help reduce children’s pain while helping them to better deal with, understand and manage their illnesses. In addition, Starlight programs help the child, parents and siblings experience less depression, anxiety, pain and isolation and bond as a family.
The way we see it, while researchers look for cures and doctors work to restore a child's health, Starlight works to restore the entire family's spirits.
We invite you to be a part of the growing Starlight Colorado Springs network of supporters who are making a difference in the lives of children and families suffering through childhood illness."



After reading this how can you not love them for what they do? So here is another organization, next to Make A Wish, who is just magical and brings happiness to children!














Hugs,


R A C A

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