Friday, October 3, 2008

2nd through 6th years of age

At the time, we thought these were the hardest years, we had no idea how this would all play out as the years when by.

We were still searching for a diagnoses and we always seemed to run into to a brick wall at every turn. Every test came back as normal except her EEG. We also took a trip to the Mayo Clinic and still the Doctors had no answers for us.
Back then there was no such thing as the Internet so we did not have information at our fingertips like we do now.
The crying and laughing spells continued. Then she started having lung issues and tons of issues with vomiting. She was a huge eater, she was always hungry and had to have a straw cup at her side at all times, that was about the only thing that seemed to calm her. (besides being just left alone)
Kiera started to chew on her pointer finger, it was constantly in her mouth. We tried different things to protect her finger but she was determined to keep that finger in her mouth. When she was upset the chewing was more intense.
At 2 1/2 years old she was enrolled in a preschool program that was wonderful, she had OT, PT, Vision, and speech. We worked very hard on getting her hands down and using them for functional things but she was so tacitly defensive that it was so hard on her.
We also worked hard on sitting independently, potty training, communication, vision stimulation. She did gain skills through all this work. She learned to communicate by using a homemade board that had 9 different textures. All the textures meant something to her such as "Eat" Drink" "All Done" "Clean dry Pants" "Go rest" etc...
At about 5 years of age she was diagnosed with CVI-Blindness, This is a condition that causes you be blind in new situations, but eye exams show healthy 20/20 eyes. The pathway from the eyes to the brain does not make the connection. After a child 'learns' what they are seeing, that item then becomes more clear to them. CVI children see the familiar and are blind in new situations.
This diagnosis helped us understand why Kiera would just cry the minute we left our home, she could not see anything. We always thought that she just had hypersensitive hearing and even had ear molds made for her to drowned out some of the noise. In reality it was her vision.
She was 5 years old when she had her very first surgery, both hips were dislocated so she needed bilateral hip surgery to pin them back in place. This was a very hard surgery, she had lots of pain with it. The Doctors thought that they got a good hold on her hips so the did not do a cast, well that proved to be the wrong thing to do with a child that has a seizure disorder!
We were at home recovering and she had a very hard seizure, brought her knees right up to her chest and the sweat just started to pore. This was a status seizure to boot and we had no way to transport her, so 911 was called.
She healed fine from the surgery, she also had to go through PT therapy after which was not fun, for either one of us.
So this brings us to about the age of 7...
Skills I gained, Communication! Rolled over, learned to drink from a straw, learned to punch my arm into my sleeve with a verbal direction (Punch), and was successful with schedule potty training!
Diagnoses, CVI-blindness , reflux
Surgeries, Bilateral vargus derotational osteotomies (hip surgery)

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