Suli's Story

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Suli's Story
Suli with big sister Khali

Seven Year Old Sister Khali Has Been Such A Wonderful And Very Understanding And Caring Sister Whom Suli Idolizes.

 

It was a normal clinic day for me at 37 weeks. Nothing was out of the ordinary until I was told that I was having contractions.

I said, “It can’t be….my baby’s moving around like it does every other day”.

But I was told otherwise by the midwife who saw me that day. I was moved to another room where a doctor tried to physically turn the baby in my belly to be in the correct birthing position. Without success, an ultrasound was done and we were told that the baby was in distress and an emergency caesar had to be done.

Suli Peek was born on Friday the 13th of June, 2008. If the date has something to do with Suli’s condition, well, we are not superstitious. According to the hospital, Suli was healthy and happy so we took her home.

Between three-four months, Suli weaned herself off breastfeeding and started on solids. At about five/six months, we were concerned that she was behind in some of her developmental stages. She would try to sit up but fall back, she wasn’t crawling but she could worm her way around the house and roll from her back to her belly and vice-versa.

Suli's Story

Another thing that concerned us most was she was rattly in her chest. We took her to the hospital three times and three times we were told that Suli’s got bronchialitis and that the rattly chest will go away and she will catch up with her mile stones.

However, that was not the case because at 12 months Suli was very sick with pneumonia and was admitted at the hospital for a week. At 15 months Suli had her first seizure. She was asleep and woke up coughing and chocking in her vomit. We also noticed her whole body was shaking and then she went purple for a while and then recovered. We took her to our GP and were told she had just had a seizure.

"It cannot be," we said to our GP, who briefly explained why he thought it was. We were absolutely lost. Our GP then referred Suli to the Mater Children’s Hospital where she was diagnosed with Cerebral Pasly, Global Development Delay and Epilepsy late 2009.

Since then, Suli’s seizures were out of control. She would have about a 100 plus a day ranging from just hand and feet twitching, to partials where her head turns constantly from left to right, and clusters of tonic chronic where her whole body shakes and twists in opposite directions. These were happening day and night. We were scared, worried sick because we had no idea what it meant, what impact it would have on Suli, whether she’ll grow out of it or not.

She was put on Dilentin and her seizures went away for a couple of weeks and came back. Her medication was then increased until there was no room for increase and then Kepra was introduced and the same thing happened. Her neurologist then put her on Topamax and slowly weaned her off Dilentin. Topamax and Kepra worked for while but after three to four weeks her seizures returned.

We googled and read about all sorts of treatment, surgical operations and medication and then we came across the Ketogenic Diet. We then spoke to our family support worker from Epilespsy Queensland who gave us a lot of information about the diet and linked us with other parents with kids already on the diet. We decided that we would like Suli to go on the diet, if it works, it’ll be a blessing but if it doesn’t, at least we know we’ve tried.

So far so good. Suli’s basically seizure free except for when she she’s not well where she has breakthrough seizures. Suli’s progress so far on the diet has been slow but we believe in time she’ll be able to communicate with her eyes. Any other progress she makes will be bonus for Suli and us. Even though Suli can’t talk, sit, stand, walk or roll from her belly to her back, she’s still our little angel with the bravest heart and we love her so much. Even her seven year-old sister Khali has been such a wonderful and very understanding and caring sister whom Suli idolizes.

From our experiences with Suli, we now realize that epilepsy has had more of a negative impact on her life than the cerebral palsy has. So our advice to other parents who are starting off on a similar journey, keep talking to other parents, keep asking questions and never give up.
Suli's Story

 

Khali's Plan
Click To Watch Khali's  Special Report (aged 7).

Click The Plan To The Right To Expand.
(For Those Living Outside Brisbane, The Ekka Is A The Yearly Show Day, Link Below.)

Suli's Story



Cerebral Palsy League Qld

What is the Ketogenic diet?

Cerebral Palsy League Qld
Epilepsy Qld: What is the Ketogenic diet?



 
Mater Children's Hospital
Ekka
Mater Children's Hospital
 Ekka Show Website



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