Julia’s Story

Julia was born a happy and healthy baby on December 28, 2005, weighing in at 8 lbs 2 oz (SMALL in comparison to her older brother, a 10 pounder!) It was a scheduled C- section and after a few days we all went home. Life went on. Yes, having two young kids was stressful, but I had NO IDEA what God was preparing me for. Julia never really slept through the night until she was 9 months old. At NINE months……REPRIEVE!!!!!! God was Good!

Julia went in for her 12 month appointment the day after Christmas – December 26th, 2006, two days before her first birthday. I was told by the nurse that we could not do her vaccines that day, as it was two days too soon. I looked at her with a face of irritation. I had taken the day off of work (I am a veterinarian), and I KNEW that two days would not make a difference. So I asked to speak with the doctor about the issue. When I spoke to him he said we had a “window” and that it was likely OK to give her the vaccines. She got the proquad – MMR-V- from Merck (taken off the market six months later), and a Hepatitis vaccine. She screamed and cried, as to be expected – her big brother rubbing her head the whole time telling her it was to keep her “safe”. I will NEVER forget this day.

Eight days later, January 4th, 2007, Julia was sent home from daycare – not acting right, whining, inconsolable, febrile, etc. I was working a 12 hour shift that day, so my now ex-husband picked her up from daycare, fed her dinner, bathed her, and put her to bed at 7pm. I got home at 8:30pm, grateful that she finally got some sleep. Little did I know what was coming.

January 5th, 2007. I was in the shower, getting ready for work, and my then husband went to get Julia ready for daycare. He came running in from her room with her in his arms. He was SCREAMING. I got out of the shower–soaking wet and naked–and looked at our baby . I thought she was dead. Blue. Cold. Her head arched to one side. No response to her name. She was covered in feces and vomit. We put her on the bed and saw that she was breathing very shallow breaths, so I called 911. Then the “circus” began.

To make a long story short, she was life-flighted to Miami Children’s Hospital. She was in the PICU unconscious for about 10 days. She was then transported to the Neurology ward, and stayed for a total of about a month. Diagnosis – encephalitis–severe temporal sclerosis over the right side of her brain and more areas of “less” severe injury in both frontal lobes of her brain. When she was discharged, she was SEVERELY left sided hemiplegic, was aspirating food unless thickened, was unable to sit up or roll over, was nonverbal, and screamed and cried 22 out of 24 hours a day. We were back again to NOT SLEEPING for over three years.

In the spring of this year, we were able to procure an iPad for Julia. She had already been using an AltChat device with quite a bit of success (more so at school and therapy than at home), so she had some idea about the interaction element of the devices. It took a few days, but by trial and error and watching her brother play with the iPad, she picked up on it very quickly. In fact, she began using it to do some pretty sophisticated tasks. These included shape puzzles, which amazed us, and spelling games, which blew us away. She has since continued to excel and is even playing Angry Birds (well, sort of!) and doing more advanced spelling and sorting games. We feel this has contributed significantly and directly to a recent large jump in her progress. The last 6-9 months have seen an explosion in self-recognition, pride, esteem, skills, balance, and two very important developments: potty training and speech.

We watch in amazement the way she is able to do puzzles and spell words!

http://www.youtube.com/watch?v=TKyNcknHXts

http://www.youtube.com/watch?v=-DZYxaq7qck

 

 

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