Ready, Set, Go....

March is the time of year we usually start with our marathon appointments, as long as we are not in the middle of a blizzard, and as long as Meggie's health is good. Over the years I have learned to try and set appointments up for spring and fall, to keep them grouped closely together, and then we can enjoy our summer break with the other kids and dad.

Starting with the physiatrist(or the equipment specialist as I call him), the orthopedic dr., x-ray dept., the neurologist, the gastroenterologist, the endocrinologist, the lab dept., the pediatrician, and your staff, not to mention therapies, OT,PT, eye dr., and the dentist. Please, Please forgive me if I missed anyone, we think the world of all the special people who devote hours upon hours of their lives to care for our children. The things I have learned and the information you have passed on to me is invaluable. I have come to appreciate all your knowledge and skills, you so passionately demonstrate,and I refer to you as Meggie's careteam, you make our lives more manageable. So many parents that have children with special needs have big loads to handle, and things may seem overwhelming at times. All I can say (with all my heart) is THANK YOU, THANK YOU, THANK YOU!!!

So as you can imagine, we need to be a little creative with the schedule at times. If there are books we can read or picture cards to work on with Meggie, those are things we can do while waiting in a room, but if you ask Meggie, she may rather play with her crinkly mylar paper, she finds it absolutely fascinating. If none is available, the exam table paper may do.

Though there are several things to watch for with ONH SOD, you can find out more by checking out more detailed information at the link below,www.One Small Voice Foundation or check www.MAGIC Foundation link, they give yearly seminars for parents and families to come together and listen to doctors, nurses, therapists, and researcher speak on ONH SOD and various other syndromes/conditions that children may have. Education is key, and can make this journey with these special children a much better experience for all if we are more prepared and equipped to face the seemingly numerous challenges we may or may not encounter. Knowing the needed necessary testing with hormone deficiencies, glucose levels, developmental delays, mid line brain malformations, etc. and the needed treatment will be of great benefit if the time comes when you may be need it. If a Child has ONH the severity may range greatly, all the way from light perception to visually impaired, in one or both eyes. We need to keep in mind that if the child has ONH they are at risk for any of the abnormalities that come with SOD. ONH is the leading cause for childhood blindness, and it is on the rise, being aware of the signs and symptoms may lead to earlier treatment and more effective results for the child. My goal is to share our story and educate others in this quest for helping our children lead better quality lives, with or without Optic Nerve Hypoplasia Septo-Optic Dysplagia, ONH SOD (or DeMoiers syndrome), all are one in the same. An important note to parents is ONH is the leading cause for childhood blindness and we all can join in being educated in this area.

With all that said, our children hold great value in this world and they are here for reasons that may be known to us, and some reasons that may be beyond our understanding.

Enjoy the little things in life for one day you may look back and realize they were the big things.
~Robert Brault