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My Life continued page 2
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I started going to the ophthalmologist because Im at high risk for glaucoma, since my port wine stain covers my left eye. My pressure in my eyes are kind of high but are still in the normal range. I have to go back in three months to be rechecked.

I've finally turned one now. I've started physical therapy, occupational therapy and speech therapy. I have developmental delays from the Sturge Weber and seizures. I work hard on exercises at home with my mommy. I'm starting to cruise again and hopefully will be walking before long. I have a new pediatric doctor. I really like him.

He knows a little bit about Sturge-Weber Syndrome but is willing to take care of me. I have still been having seizures even though I'm on two anti-seizure medications.

Things have been going well. I started walking at fourteen months. I still can't talk but I'm signing well. I had to go back to the neurologist for a check up. He said I'm doing good and I still need to keep taking therapy. He upped my seizure medication some more. 

I've been getting sick a lot more than usual. I'm keeping ear infection and tonsilitis. I have stayed on antibotics for the most part. I just have to keep going to the doctors for check ups.

I have turned two years old now. Life was pretty dull there for a little while. Now things have started to pick up. I went swimming and I've been out of the pool for about an hour. My mommy and nanny noticed me turning blue from head to toe. So, they watched me for a little while, then my mommy called the doctor. The doctor wanted to examine me. We went to the doctors office and he found a heart murmur. I was admitted to the hospital for some tests. My mommy got scared when they admitted me to the NeuroICU. The pediatric unit wasnt capable of taking care of me. I stayed in the hospital for three days. They never really did figure out what happened.

 

 

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Blue Jack

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