A Tidbit about us

Hello, My name is Maria-I write almost all the blog post, although sometimes my husband John does chime in on his opinion and feelings about a post.  I am a wife, and mother/stepmother of 5. I started this blog when my youngest daughter Gabriella (Gabby Roo) was born. She has a rare genetic condition called Muscle Eye Brain Disease. At the time it was a way for my family and friends to stay informed of what was going on.  I hope to bring awareness to her genetic disorder, and show other miracles do happen.

A little about our family: John and I meet in 2005 at work. Both him and I worked with mentally handicap adults at the time. Over the next couple of months we feel in love. (as every love story goes : ) John already had  Kiera & Dillon. (My Step children)  then there is Kirstynn, Jazmyne and Gabby. We got married May 17,2008. In 2008 John gain full custody of Kiera and Dillon,(CYS removed them from Bio-mom's house the day before we got married) and this remained until we moved to Ohio in November 2010. The judge did not allow the kids to leave the state until the school year ended. After all the court hearings, and fighting  they now share custody of Kiera and Dillon. Kiera lives with us and Dillon lives with Bio-mom. We do summer visits and school year visits with Dillon. We miss him dearly every day.We purchased our first home in Payne, Ohio. Its a very small town in Ohio right outside of Fort Wayne In. Its a great place to raise your children, and we are very grateful to have the best family and friends that we do.

Most of Gabby's doctors are located out of Akron, and Toledo (Meet Gabby's Team). We drive almost monthly to either place. Its a trip but worth it. We have set up a great team for Gabby. A tidbit about her Genetic disorder: Gene Pomgnt1 is displaced in her body. They have gave her the diagnosis of Walker Warburg Syndrom/Muscle Eye Brain Disease. Her MRI more reads of a child with WWS, but clinically speaking she shows more of a child with MEB (MRI Finding's). She has mad multiple surgeries trough her short life. She had a V-P shunt place for hydrocephalus at 3 months of age. She has infatile glaucoma, and has had 7 eye surgeries and currently has an implant in her left eye due to the high pressure returning. She also had a g-tube placed in March 2011. This was a very emotional situation for us-(See her story here). She had to have her bottom teeth removed due to her high tolerance to pain and her biting through her tongue several times. She has had several stomach biopsy's for Celiac disease and other reason's. She was also diagnosed with Cobblestone Brain. She is almost 3 and is mentally around a 5 month old child. She currently wears contacts due to her poor vision. She had her fist seizure on January 25,2012. We now have her on seizure medication for her safety. She continues to defy the odds on a daily basis. We know each day is a gift with her.

I hope to help someone everyday. Big or small. I love being a step mom,  a mother, and a mother to a special needs child. : D I hope to learn something new everyday. I am starting school back up her in spring of 2013 to become an LPN, then follow with my RN. In some states they allow a parent to be a payed caregiver for their disabled children if they have either an LPN or RN licence. I know its going to be a long road between now and then, but it will be worth it when its all done with. I have found several other parents who's children have MEB and WWS. If you are a parent sitting in our shoes please contact me :) Its great to be able to talk to another parent who gets it!
Much Love,
Maria