Wednesday May 28, 2008

Another sleepless night. I am sitting here reflecting on the events of the last year and a half. I am continuted to be stretched in knowledge. I am organinzing a gathering for family and friends wth MHE/HME in the Pacific Northwest. I am also try to start a fundraiser for Dr. Alvarez and her Research team at Childrens Hosptial. I am learning about Brain Injurys and new strategies for daily living. Somedays im more tired than others. For the most part I reflect back and think...GOD YOU ARE SO BIG AND SO MIGHTY...THANK YOU FOR NOT GIVING ME MORE THAN I CAN HANDLE. THANK YOU FOR SHOWING ME THAT I AM A STRONG COURAGEOUS WOMAN. THANK YOU THAT MY DAUGHTER IS ALIVE. THANK YOU LORD FOR THE OPPERTUNITY TO TELL PEOPLE ABOUT HME/MHE. THANK YOU LORD THAT YOUR MERICES ARE NEW EVERY MORNING. I GIVE YOU ALL THE GLORY.

This is how we overcome

Tehillah Toronto

My daughter was Diagnosed with HME/MHE in December of 2005. What is MHE? Multiple Hereditary Exostoses (MHE) is an inherited disorder of bone growth. People who have MHE grow exostoses or bony bumps on their bones that can vary in size, location and number depending on the individual. Although any bone can be affected, the long bones: legs, arms, fingers, toes, ribs; pelvis and shoulder blades are the most common. MHE can be referred to by various names such as Heredity Multiple Exostoses, Hereditary Multiple Osteochondromata, Multiple Cartilaginous Exostoses, etc.An exostosis is a benign bone growth that is abnormal or different than the underlying architecture of the bone. These bone growths generally grow out or at an angle from the normal bone. Sometimes doctors refer to exostoses as "tumors" which like "exostoses" is a general term meaning abnormal growth. It is important to remember that not all tumors are cancer. Most tumors like the exostoses of MHE are benign. Exostoses grow near the growth centers of the bones which are near the ends of the bones. That is why many bumps grow near joints. Exostoses can be rounded or sharp and will continue to grow while a child is growing.This condition is not contagious. MHE is a condition that is passed by the genes of the affected parents to their children. It is called an "autosomal dominant" disorder which means that if one parent has the condition, chances are fifty percent that their child could also develop MHE. Occasionally, a person can develop multiple exostoses with no family history of MHE. This situation is described as a spontaneous mutation meaning a genetic problem arose in that person without being inherited from a parent.Some children will have few if any symptoms while others are severely affected and will have a great deal of difficulty. Because the bone growths can cluster around joints, children with MHE can have a great deal of difficulty with normal movements such as walking, running, lifting, carrying, bending joints, kneeling, grasping and arm and leg rotation.Tumors can grow and increase at any time, but particularly during growth spurts. A child who has no problem with a movement one day may find that movement restricted the next and then back to not being a problem the day after that. A tumor may also grow in such a way as to create an entirely new restriction on a child's mobility. For example, a child who was able to sit in a certain position during the last semester may not be able to sit in that same position this semester, or in the future. A child who could run may not be able to do so following tumor growth. Some mobility problems may be corrected by surgery, but some may become lifelong limitations. Parents as well as teachers working with children with MHE must be aware of the changing nature of this disorder.While children with MHE may seem extremely fidgety, they may be simply trying to get comfortable. Many tumors cannot be seen and their affects can be subtle. One child with MHE may have multiple tumors at many different sites in the body, while another child may have only one or two tumors. No one yet understands why different people are affected differently at different parts of their body. NOTE THIS INFORMATION WAS FOUND DIRECTLY ON THE http://www.mheandme.com/ WEBSITE. Please read the links to find out more about MHE. Daryl will have surgery on July 12th 2007. She is 13years old and in Grade 7. She is an amazing young lady. I am so very proud of her. Her surgery will remove to large tumors that have grown in and around muscle in the back of her knee, that are pressing on a major artery. She is a very brave young lady. On October 24th 2006 MY GIRL was hit by a truck as she was crossing a sidewalk with the walk signal on her way home from school. Daryl was thrown eight feet out of her shoes. I was at work in Harrison Hot Springs at the time and found out by a man who answered her cell phone at the scene of the Accident. He asked, "are you the mother" My daughter was taken to our local hospital. It was there that she suffered a grandmal Seizure. She had fractured her skull. She had bleeding by the brain. She was airlifted to Childrens Hospital in Vancouver. It really did not look good. She was in critical condition. Daryl suffered a broken cheekbone, two breaks to the nose and many other minor scrapes and scratches. She damaged her ankle as put in a Cast. I will post a pic of that later. Daryl drifted in and out of conciencousness over 13 times. I almost lost my little girl. My daughter is a miracle. I have a beautiful story about FAITH AND PRAYER. We are so blessed. The Lord is so faithful. I will post more and the story later...