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.

Tuesday, May 21, 2013

Evaluation

Today was Mira's evaluation through early intervention. The point of it was to see how she responded to various types of stimuli to obtain her "score" compared to how other children do at her age. She's only a month old, so expectations are limited.
Honestly, she did fantastic! Her upper body strength is amazing, she's very good at following or tracking faces, she's eating well, sleeping well, and has a great grip.
The only thing she didn't respond to was ringing a bell. However, they told us this is actually really normal for babies that spent a long period of time in a NICU. A NICU is filled with high-pitched beeping, lots of noise, lots of activity, and lots of people coming in and out at all times of the day and night. So while under normal circumstances, the raining of a bell would be alarming to most babies; babies that spent a lot of time in a NICU typically don't respond because they are so accustomed to that type of noise. 
The evaluation was actually perfect timing. Mira was wide awake, but not upset, so she was in the perfect state and temperament to go along with showing off her skills for the early intervention coordinator and the therapist evaluator.
Picking up your head and looking at your Mother's face might not sound like much to most, but I was very proud of her! After everything she's been through, she is so strong physically and mentally, and she's such a happy baby! She just cuddles so nice, or she moves around and looks around, completely content, taking in the sights and sounds! Everything she's been through is certainly defined as traumatic, yet she shows not a single sign of being traumatized. She's not restless, she's not difficult, she's not unhappy or inconsolable. She certainly has many challenges that need addressed that most people don't even think about, but she takes them all in stride! She's so resilient, and I'm just so incredibly proud!
Aryanna was napping during the evaluation, but I was also proud of Dustin. He's very curious about everything going on with her, and he's such a great big brother to both of his sisters. He was asking our guests questions and showing them his action figures, but he listened so well every time I told him that we needed a few minutes to watch Mira do something or for the adults to discuss something. He would just go sit in his chair and wait, and he was so helpful and well-mannered.
So while early intervention is designed to help bridge the gap in developmental delays, or to avoid gaps entirely, I must say that I don't think she'll need too much help. I have an overwhelming amount of faith in my children, in their will power, their strength, their intelligence; and I am one proud mamma!

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