Five Kids in Six Years, No Multiples. Our House is Always Crazy, Rarely Quiet, and Full of Love.

Five Kids in Six Years, No Multiples. Our House is Always Crazy, Rarely Quiet, and Full of love.

Category Archives: Neurofibromatosis

Lil’ Man: More Updates

Our Lil’ Man has had even more doctors appointments & we finally received the results of his biopsy. So here are he deets… Last week, we finally had our appointment with Genetics at the local children’s hospital. They did a physical evaluation of Lil’ Man & explained NF1 in more depth. For instance, they saidContinue Reading

Lil’ Man Update

{Lil’ Man rocking out his new bike helmet. He gets to ride a tricycle at Preschool! He ran around the house with this on, yelling “Kick!“} Lil’ Man had his 6 month dermatology check-up last week. [He has to go to the dermatologist every 6 months since his NF1 diagnosis to check for any newContinue Reading

Increasing Awareness for Neurofibromatosis

Six months ago, our then 2 year old was diagnosed with Neurofibromatosis. I was confused, upset & didn’t want to talk to anyone other than my husband about it. Although my husband & I have tried to explain Neurofibromatosis to family members, some think they already know what it is (and confuse it with someContinue Reading

Diagnosis

I’m scared. I’m confused. I’m angry. My heart is breaking. Today, our sweet, happy, lil’ man was diagnosed with Neurofibromatosis. I knew it was coming. I had detected it before he was even 6 months old. I had googled the light brown spots he had on his body as an infant & discovered they wereContinue Reading