Tuesday, May 26, 2009
Today we saw Dr. Teodori, Madi's neurologist, at Phoenix Children's Hospital. She gave Madi a thorough examination and is pleased with the results. She agrees that Madi is one bright and shining little girl. She said she is doing remarkably well considering all that she is dealing with. We went over her latest MRI closely and discussed what we saw. Madi has a corpus callosum, however it is thinner than normal and is missing at the tail-end. Other parts of the brain can make up for it, so at this point, we aren't terribly worried. One of her ventricles is fuller than the other which is pretty typical. The side that is not shunted has more fluid than the shunted side. We actually already knew this from talking with Dr. Moss a few months earlier. She showed us what, specifically, her Chiari II malformation looked like and discussed what that meant with us. Although we can never know what the future holds, things are looking good for now. Madi is progressing well and we are just taking things one day, one appointment, and one test at a time. Madi has a lot of people who love her, and she is a very blessed little girl! We know she will continue to thrive despite her circumstances. Heck, she is just as stubborn as we are!
Tuesday, May 12, 2009
I am writing to you concerning the proposed budget cuts for early intervention programs in Arizona. I am a mother of two and my youngest, Madilynn, has spina bifida, hydrocephalus, and a Chiari II malformation. She is currently five months old and receives physical therapy, services from a developmental specialist, and is being evaluated for occupational therapy. Although we pay for private insurance, we also utilize The Department of Developmental Disabilities (DDD) and The Children’s Rehabilitative Services (CRS). These services are absolutely crucial to her physical, mental, and long-term wellbeing.
I am an educated individual with a Master’s Degree in Elementary Education, a reading endorsement, and an SEI endorsement. I have even taken a few special education courses at the college level and still do not have enough knowledge of how to most effectively work with Madilynn and help her live up to her full potential. It honestly takes the efforts of trained, knowledgeable, and caring individuals, such as the ones that work with Madi, to give her the assistance she needs. The specialists have given me ways to work with her and it is because of them that Madi is doing as well as she is. We have seen her make tremendous strides in just the few months she has had assistance. Unfortunately, though, when Madi meets her current goals, I will once again be at a loss of how to help her. Both Madilynn and I need the help and support of her therapists on a regular basis.
As you and I both know, money is short and changes must be made. I am thankful that federal stimulus money is available, but know that more needs to be done. I am asking that you will seriously consider taking money from other places so that our children can still strive and receive the help they so desperately need. For example, instead of paying for elective epidurals for women receiving ACHHS, you can pay for something that, in my opinion, is absolutely not elective-- our children’s futures. If Madilynn does not receive the help she needs now, her chances of walking are very slim,. The cost in the long run will be much greater not only for us, but also for the State. Madi is at her most critical point of development, and needs immediate, ongoing assistance. I have attached a copy of the appeal I sent to DDD and ask that you read that for more information about that long-term costs that will arise if early intervention budgets are cut. You can also read more about Madilynn and the amazing little gift she is by visiting www.missmadisjourney.blogspot.com. When you make decisions regarding budget cuts, please remember my daughter and the disservice you will be doing to her, and others like her, by taking away even 10% of the budget. Our children need you.