On the frame and off

Blogging has taken a back seat the last few weeks. Perhaps I should explain. Our oldest granddaughter was born with a brain tumor called a hypothalamic hamartoma. Her tumor was 1-1/2 inches in diameter. While this is classified as ‘benign’ — it’s effects are not benign. It causes gelastic and dacrystic seizures, both of which can progress to more serious complex and tonic clonic seizures over time. For many children, these seizures – although lasting only seconds sometimes – can occur up to hundreds of times in a day. This inability to focus will eventually cause cognitive delay. For our granddaughter, the seizures are very brief lasting only seconds and occur 40-60 times per day. The majority of her seizures are the dacrystic type which cause crying and sadness. She does still have gelastic or laughing seizures too. She was four years old in December and has already had three brain surgeries which have resulted in the removal of all but a few remnants of the tumor. And now, the time will soon be here for a fourth surgery to remove those remnants. That has been on my mind, and although I’ve been quilting, it’s hard to write about anything.

She’s a very sweet and happy little girl except during these brief episodes when the sadness overtakes her. Lately, when there’s a lot going on around her and things get noisy, whether it’s her preschool classroom or at home, she will announce, “Inside voices, please.” Other times she will tell us, “I’m not all right.” We hope you’ll keep her in your thoughts and prayers. The surgery will be in May, near the end of school. The photo below was taken in January when she was clowning around with the glasses from her doctor’s kit.

Ezri 01-2011

You can find more information about this disorder at http://www.hopeforhh.org and also about Ezri by following the Caring Bridge link in the right column. 

6 Replies to “On the frame and off”

  1. Thanks for this update on Ezri, Marjorie – it’s been a while and I hoped she was doing well. It’s great to see her in this fun picture – what gorgeous hair and eyes, and what a beautiful smile she has!!

  2. Marjorie,
    We all wish the very best outcome for your grandaughter! Take care of yourself too — the blogging can wait.

  3. Marjorie, thanks for the update. What a beautiful little girl! I will be thinking of her and your family. Warm wishes.

  4. What a beautiful little girl. I know you cherish her. I will pray for her success in surgery. This is another lesson in appreciation for all that we take for granted. Best wishes to all of your family.

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