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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
Tuesday, July 22, 2008 8:43 PM CDT I am trying to get better at updating and this update is just about a month since the last.
Alexandria has lost just about 5 lbs since January so this is an issue we are working on right now. She is doing GREAT! Her reading is coming along well she is at about the middle to end of 1st grade.....considering she has been out of school since October. Alexandria is golfing for Special Olympics and doing a great job! The school district contacted us to say they will have a nurse for school.........we are hoping it happens because she will be attending the local school Cameryn attends. They will be in different 1st grade classrooms.
Cameryn is having a great summer. We are trying to get through summer reading and summer packet. He will be starting Soccer and Golf in August.....yes we are becoming a golf family! We could have a future Tiger!!!!!
Ethan is doing GREAT! He is sitting on his own and attempting to stand up on his own......amazing. The time has flown by.....he is almost 9 months old. He has 2 teeth and he is doing great eating.....he is just about 17 lbs.
Joe is working a lot but he is doing good. We are going away in August......yes just the 2 of us....no kids! We are going to stay in Boston.....it is far away from home but close enough to my mom and the Boston hospitals if someone gets sick. We need this for us and we are so excited. Joe's dad was diagnosed with advanced lung cancer so it has been a difficult for Joe the past few weeks.
I had a very bad bout of headaches and severe nausea for 11 days. It was very difficult because there was a lot of changing of medications and everyone else was taking care of the kids. I am doing fairly well right now still with a slight headache but much better. We increased my hydration because of the heat and very low blood pressures. I will try to update soon. Please check out the professional pictures that were taken in early June of us:
http://www.lifeographer.com/slideshows/simoes/iframe.html
Heidi
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