We have been meeting with an endocrinologist since Calleigh was about six months old. Her first year she hardly gained wait and didn't grow much. In December we went for testing to see if she is producing the growth hormone. She passed the test but barely. They measured four different levels and she failed three and passed one test by one point. This would disqualify her from being considered for growth hormones being covered by insurance.
We were told to come back in six months to evaluate her status again. The only change we made in the past six months is to remove gluten from her diet. We have been sticking to it and she has only had gluten a few times. I don't know if it has anything to do with it but if growing is a side effect of being gluten free we will take it!
Calleigh continues to make huge progress. Her speech is coming along tremendously. She is talking more and more. She still gets frustrated when she can't come up with the words but is doing much better finding her words. We also started her in private speech therapy with a therapist who specializes in children with low tone facial muscles. She has been pleased with her progress. She still struggles with her balance and overall weakness of her muscles. No one can seem to tell me why or how we can help her get better. She receives PT and OT at school twice a week and we also have her in private OT with a therapists who specializes in spacial relation and sensory issues. I have scheduled her for an evaluation with a therapist who specializes in Cuevas Medek Exercises. A friend of mine takes her daughter to him and he has worked miracles! No joke.
Anyway, just wanted to update that my lil girlie is growing and we are so excited!
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