I love Emily's "squeezes"

While I don't consider Emily to be a "special needs" child, she does require alot of extra attention and alot of patience on my part. I realized the other day that no one, outside my close circle of family and friends, really know what has been going on with Emily. And so, I have decided to share it with everyone!

At the age of 9 months, I and Emily's pediatrician noticed that her head was larger than most 9 month olds and she was also starting to grow pubic hair. At 12 months old, the hair (down there)continued to grow, her head grew at a much faster rate than normal, and she was behind on all her milestones. We got sent to an Endocrinologist who proceeded to take an insane amount of blood from my one year old and ran every test she could think of! Emily also had an x-ray to check her bone age, a head ultrasound and an abdomenal ultrasound. Everything came back normal.

When we moved to Oceanside, we went in for an MRI of her brain and found a new Endocrinologist who ordered more blood tests and another bone age x-ray. All blood work came back normal and because her head and pubic hair stopped growing, decided that there was nothing more he could do but monitor her.

The MRI came back showing a shadow on her pituitary gland. We will be going in for another MRI in June to find out if the shadow was just created by the machine, or if in fact there is a cyst or tumor there. Prayers would be appreciated.

Emily is also developmentally delayed in all areas. She is currently in speech, physical and occupational therapy to help get her up to par with all the other 20 month olds out there! In a few weeks she will be recieving orthotics or ankle braces to help stabilize her ankles. She has very low muscle tone and this not only allows her to be insanely flexible, but it is also preventing her from walking properly and from developing her fine motor skills in her hands.

And lastly, the occupational therapy that she is recieving has been developed around Sensory Processing Disorder. It is a neurological disorder that pretty much sends her senses hay-wire! She can't properly interpret and react to tactile sensations. This is the reason for her constant meltdowns and tantrums, add to the fact that she can't talk and we're talking major 1 year old drama! I am still learning about this disorder and trying to understand all that goes with it.

Needless to say, Emily has been going through alot lately!!! But she is a tough little girl and a joy to have around. She loves walks, bubbles, hot dogs, and her big sister. When she's not having the best day, she craves "squeezes" which is our word for a big bear hug! Thank you to everyone who has been supportive it is needed and greatly appreciated!!!