Gracie Girl
Our Baby
A little bit about Gracie and her journey...
Gracie was born on Halloween in 2007 - hmm, could that be why she always seems to be the centre of attention?!
She was born very healthy, pink and big! She was very aware of people around her and focused on them right away, it was mesmerizing watching her watching you. At 4 weeks old, she began some odd eye blinking on the left but the doctors and baby books say that babies have poor muscle control, so no need to worry. One night, at 5 weeks old, while nursing, Gracie's arm began twitching and pulling in. She was still aware and nursing and it didn't seem to bother her but her Mommy and Daddy knew immediately that it was a seizure - everyone went to the clinic and since the family doctor couldn't be sure, we went up to emergency where wonderful Dr. Swamy admitted her to get control of the seizures - they were happening at all times while she was awake.
Because of Daddy's diagnosis and history of Tuberous Sclerosis Complex, Gracie was also diagnosed with the disease. Unfortunately, her seizures were never controlled with the medications she was given - at one time she was on 4 medications at once and was having up to 100 seizures per day!! She even had a run at steroid injections where she became a 25lb 6 month old, but nothing helped.
At 11 months, we asked Gracie's doctors if we could try the ketogenic diet - a diet nearly eliminating carbs and protein and rich in healthy fats. This was the first treatment that showed some impact on Gracie and she flourished. Within a month she was sitting at her own birthday party!
The diet has never fully controlled Gracie's seizures however, so surgery was always in the future - but without a proper MRI showing where her tuber was, they could not perform a surgery safely. She was 19 months old before her MRI came out clearly enough and it was determined that surgery could be performed.
The prognosis for Gracie's surgery is that while it may help eliminate her seizures (there is no guarantee), it will also cause damage due to her tuber being very large and in the right motor cortex. Unlike a tumour, a tuber is actually brain tissue, not extra tissue growing - so to remove the tuber, they will also be removing part of her motor cortex. This means she will at least lose her fine motor skills on the left, and possibly lose total function of the left hand.
Now, this is what Gracie has been through, but it is NOT Gracie! The Gracie we know and love is very silly, happy, loving, playful and growing every day! She is an average 2 year old aside from not crawling or walking. However, she has begun scooting around EVERYWHERE on her bum and it's a whole new world for her! She explores everything and learns something new every single day!
She was born very healthy, pink and big! She was very aware of people around her and focused on them right away, it was mesmerizing watching her watching you. At 4 weeks old, she began some odd eye blinking on the left but the doctors and baby books say that babies have poor muscle control, so no need to worry. One night, at 5 weeks old, while nursing, Gracie's arm began twitching and pulling in. She was still aware and nursing and it didn't seem to bother her but her Mommy and Daddy knew immediately that it was a seizure - everyone went to the clinic and since the family doctor couldn't be sure, we went up to emergency where wonderful Dr. Swamy admitted her to get control of the seizures - they were happening at all times while she was awake.
Because of Daddy's diagnosis and history of Tuberous Sclerosis Complex, Gracie was also diagnosed with the disease. Unfortunately, her seizures were never controlled with the medications she was given - at one time she was on 4 medications at once and was having up to 100 seizures per day!! She even had a run at steroid injections where she became a 25lb 6 month old, but nothing helped.
At 11 months, we asked Gracie's doctors if we could try the ketogenic diet - a diet nearly eliminating carbs and protein and rich in healthy fats. This was the first treatment that showed some impact on Gracie and she flourished. Within a month she was sitting at her own birthday party!
The diet has never fully controlled Gracie's seizures however, so surgery was always in the future - but without a proper MRI showing where her tuber was, they could not perform a surgery safely. She was 19 months old before her MRI came out clearly enough and it was determined that surgery could be performed.
The prognosis for Gracie's surgery is that while it may help eliminate her seizures (there is no guarantee), it will also cause damage due to her tuber being very large and in the right motor cortex. Unlike a tumour, a tuber is actually brain tissue, not extra tissue growing - so to remove the tuber, they will also be removing part of her motor cortex. This means she will at least lose her fine motor skills on the left, and possibly lose total function of the left hand.
Now, this is what Gracie has been through, but it is NOT Gracie! The Gracie we know and love is very silly, happy, loving, playful and growing every day! She is an average 2 year old aside from not crawling or walking. However, she has begun scooting around EVERYWHERE on her bum and it's a whole new world for her! She explores everything and learns something new every single day!
Some facts:
- Sat on her own at 12 months
- First word: "hi" at 17 months (a sign of how social she is!)
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