BTW: He's going to be ALREADY be 15 weeks on Monday! Time flies....
Friday, September 18, 2009
Welcome Duncan Reed
Our newest Addition is here! Duncan Reed... he has been a great addition to our family :) And fits in perfectly!!!!! Aurora and Wesley love him to pieces!
WOW~
I cannot believe my last post was in Feb! Its been SO LONG! So much has happened. Literally. Aurora after my last post started having seizures anywhere from 3-30 a day. It had gotten so bad. She was being hospitalized every other day. We were taking ambulance rides to Boston Childrens Hospital! It was so insane :( Aurora was living a life of hell, and it soon felt like her quality of life was just completely disappearing. What a terrible feeling of not being able to do anything for her... not knowing whats next? Will this end? Will it get better?
The turning point was another night sitting in the ER, Aurora had a night of cluster seizures... and emergency meds. As we were sitting in the ER, the next plan was to put her on a 3rd medicine! I sat there by her side, bawling... (by the way at this point I was 8 months pregnant)! I didnt NOT want to put her on a 3rd med... I just wanted her to be better! I couldnt stand seeing her suffer from these seizures... to be so unhappy and live a bad life! The plan in my mind was to start her on the Ketogenic Diet. It was natural, it wasnt another med, and it was said to help treat "Hard to Control Seizures". The plan... start her on it that following Monday. She would need to be admitted to the hospital and fast for 24 hours. Then be started on the diet.
On that Monday, we brought her in to start the diet. She was so miserable... she didnt eat ANYTHING in the hospital. She didnt understand why this was happening? Why she couldnt eat her regular foods!?! She had a huge drop in blood sugar and was pale, shaky, weak... she slept ALOT the first 2 days in the hospital. It scared me to see her look so sick from starting the diet.
She went 40 days on the diet of NO SEIZURES!!!!! And since then she has gone about every 3-4 weeks of no seizures, and then has 1 day of a cluster, and recently that has even decreased to 1 seizure!!!! No emergency meds, and she hasnt been in the hospital for almost 6 months! Its been a huge change! The seizures are controlled about 90-95% with the diet... she has that little 5% left!!!!! We have been still tweaking and trying to modify the diet to get good results!
Even if she stayed this way! I am happy for her. She has her life back. She is playing, and doing all the things a kid her age should be doing! She looks great :) Its been hard to have her adjust to the diet, but she has been such a trooper! Shes one strong kid!
The turning point was another night sitting in the ER, Aurora had a night of cluster seizures... and emergency meds. As we were sitting in the ER, the next plan was to put her on a 3rd medicine! I sat there by her side, bawling... (by the way at this point I was 8 months pregnant)! I didnt NOT want to put her on a 3rd med... I just wanted her to be better! I couldnt stand seeing her suffer from these seizures... to be so unhappy and live a bad life! The plan in my mind was to start her on the Ketogenic Diet. It was natural, it wasnt another med, and it was said to help treat "Hard to Control Seizures". The plan... start her on it that following Monday. She would need to be admitted to the hospital and fast for 24 hours. Then be started on the diet.
On that Monday, we brought her in to start the diet. She was so miserable... she didnt eat ANYTHING in the hospital. She didnt understand why this was happening? Why she couldnt eat her regular foods!?! She had a huge drop in blood sugar and was pale, shaky, weak... she slept ALOT the first 2 days in the hospital. It scared me to see her look so sick from starting the diet.
She went 40 days on the diet of NO SEIZURES!!!!! And since then she has gone about every 3-4 weeks of no seizures, and then has 1 day of a cluster, and recently that has even decreased to 1 seizure!!!! No emergency meds, and she hasnt been in the hospital for almost 6 months! Its been a huge change! The seizures are controlled about 90-95% with the diet... she has that little 5% left!!!!! We have been still tweaking and trying to modify the diet to get good results!
Even if she stayed this way! I am happy for her. She has her life back. She is playing, and doing all the things a kid her age should be doing! She looks great :) Its been hard to have her adjust to the diet, but she has been such a trooper! Shes one strong kid!
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