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Alexandria's webpage has been created to keep all our family and friends updated on Alexandria's progress.
Alexandria is a beautiful and happy 8 year-old who brings so much joy to everyone around her. Alexandria starting having Seizures at 3 months old and then was diagnosed with Infantile Spasms at 7 months old. Alexandria has been on many medications and the Ketogenic Diet which worked very well for a while. Alexandria came off the Ketogenic Diet in early January 2004 because she continued to have seizures and we found out Alexandria was diagnosed with Mitochondrial Disease. Alexandria has a primary energy metabolism defect Complex 1 and a secondary Long Chain Fatty Acid Oxidation defect. Alexandria has had problems with seizures, pseudo obstruction, developmental delays, decreased stamina, fatigue, temperature regulation and chronic infection. Alexandria has a Central Line in which she started TPN in December 2004. Alexandria has a G tube that is to gravity and a J tube that she is being fed a small amount through. Alexandria gets iron infusions and monthly IVIG infusions. Alexandria brings us so much joy! Her brother Cameryn and Ethan look up to their big sister!
Alexandria loves playing with her brother Cameryn, painting, littelest pet shop, Ipod, Barbie and Cinderella!
Alexandria loves the princesses!
Please Visit Our Friends!
Hailey & Brenna's Page
Alex
Malisa
Friends of Alexandria Simoes
C/O Mechanics Cooperative Bank
75 County St
Taunton, MA 02780
Journal
Saturday, March 28, 2009 6:38 PM CDT Our site had not been up for many months....not sure why??? I am wondering how I sum up the past few months???? Alexandria went back to school in September 3 full days a week and she is doing fairly well but the kids are not very nice to her and it really hurts my feelings. She does have a couple friends that are good to her. She is reading and doing great. Alexandria turned 9 in October and I am amazed at what a young lady she is becoming.
Ethan turned 1 in November and he is doing well....Cameryn is 7 and doing great.
Alexandria had a difficult few months this winter with illnesses. She was hospitalized in February for fevers. She has been stable and continues on the same treatments. She is finally gaining weight after her TPN calories were increased in December.
I would love to update more often but it gets very difficult because my health has been up and down and we are juggling a lot as a family.
I have been sick on and off all winter, had surgery last week, Alexandria lost her health insurance, Ethan was sick now they want him evaluated by EI and metabolism, could be selling our house.....the list goes on and on. Talk to you all soon!
Love
The Simoes
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