About Me

United States
My fiance (Joe) and I (Caytie) just delivered our third child. We have a son named Dustin, age 4, a daughter named Aryanna, age 1, and our new little bundle's name is Mira, and she has been diagnosed with spina bifida. She has a myelomeningocele, a chiari malformation, hydrocephalus, and a club foot. She had surgery the day after she was born on her myelomeningocele, and surgery when she was 6 days old to place a shunt in her brain. She is facing more surgeries, a lifetime of recovery and monitoring, and we will all be facing the journey of spina bifida. Prayers and kind thoughts are always welcome, and if our story can help others, that would mean the world to us. Spina bifida is a fairly common birth defect, but there's nothing normal about facing potential danger with your child. So this is our story, the journey of spina bifida, as we live it.

Friday, May 10, 2013

Early Intervention

Early intervention is a program in my area that is for children 0-3 years old. The program consists of having a variety of therapists come to your home and work with your child to help with or try to avoid any ways they could fall behind developmentally.
Today I was able to speak to the representative and set up our in-home appointment for next week. I am so excited about this opportunity! Not only for Mira, but for the entire family. The therapists listen to what goals you want out of the process and help with what you want to see accomplished. One of the things I've been struggling with is trying to figure out the family dynamic. Sometimes I'm unsure of how to get the entire family to mesh and function together. I'm trying to figure out how to include Dustin and Aryanna in Mira's schedule because I don't want them to feel like she is more important than them. Yes, she has more needs than they have combined, but none of my children will ever be more important than another. However, sometimes I feel like I'm excluding them to the point where they might think she's more important than them.
Because of this, one of my goals in working with the therapists in our home is to find our family fit. To figure out how we will all work together in meeting Mira's needs so that we are one functioning family instead of a bunch of roommates with different goals and different lives. I want my children to be as close as my sister and I are. I want to make sure all of my children feel included and important and loved. I want to see them working together and feeding off of each others' accomplishments. I absolutely do not want my family to feel divided or insecure. So I'm really hoping to achieve common ground and family-felt understanding. I've learned that spina bifida really is a team effort, so that's what I'm hoping to accomplish, team work and feeling connected.
I can't wait for our meeting next week, and the week after that is Mira's in-home evaluation. After that is when the work will start, and I honestly can't wait! I encourage everyone who has a child with any type of special needs to look into possible programs in your area. All you can gain from it is knowledge, and that's never a bad thing!