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!
Tuesday, February 10, 2009
Update from yesterday..
I ended up having to give Aurora a Valuim at 3pm. And then she didnt have any episodes all night until 3am she woke up in a seizure...
We ended up taking her to the ER... nothing major happened. This time no IV or Ativan, just more Valuim. They want me to keep her on it every 6 hours for the next 48 hours until her new dose of Depakote kicks in.
We are all beat. Sucks. Kelly and I got into a huge fight. Its so hard to have a relationship and not be stressed out when you have a child who is in and out of the hospital all the time. I can say this on here.... I dont want Aurora to ever think her Epilepsy takes an effect on our relationship, but it does... its just alot of stress!
Oh well...
Now we wait and see if this new dose will stop these DAMN seizures!
We ended up taking her to the ER... nothing major happened. This time no IV or Ativan, just more Valuim. They want me to keep her on it every 6 hours for the next 48 hours until her new dose of Depakote kicks in.
We are all beat. Sucks. Kelly and I got into a huge fight. Its so hard to have a relationship and not be stressed out when you have a child who is in and out of the hospital all the time. I can say this on here.... I dont want Aurora to ever think her Epilepsy takes an effect on our relationship, but it does... its just alot of stress!
Oh well...
Now we wait and see if this new dose will stop these DAMN seizures!
Monday, February 9, 2009
19 Days of no seizures, and then it happens!!!!
Aurora had 19 GREAT days of no seizures! However for the past 5 days she has been saying she is going to have a seizure... and then gets the look and nothing happens. This is her pattern... a couple days of saying she is going to have a seizure, and then by the 3-4th day she finally has one!It sucks... 19 days is great! This is why when people say to me "WOW, 19 days!!! That is great!" I dont get excited. I have seen her go 30 days and then weeks of seizures! I hate to be NOT optimistic... but with Epilepsy you cant be. Its so uncertain! I hate it....
Anyways. I am waiting as I write this to speak with her Neurologist, to find out the next plan for her meds. I am sure they will increase her Depakote.
For now... we wait.
My poor girl. I wish for anything for this to all go away! I keep telling myself it could be SO MUCH worse, she could have Lukeima, or a child cancer!
Monday, January 26, 2009
Aurora and her Baby Alive...
She just had her most intense seizure ever. This was after 2 rounds of Ativan!!!
No matter the situation, she can always make things fun and positive. This is what I love about her!
What was so funny was that her and my mom (Mam) were eating strawberry shortcake, and Aurora thought putting whip cream on your face was the most hilarious thing in the world!
LOL, see Mam you do it!!! LOL~
She just had her most intense seizure ever. This was after 2 rounds of Ativan!!! 
No matter the situation, she can always make things fun and positive. This is what I love about her!
What was so funny was that her and my mom (Mam) were eating strawberry shortcake, and Aurora thought putting whip cream on your face was the most hilarious thing in the world!
LOL, see Mam you do it!!! LOL~
Friday, January 23, 2009
She's a free girl, KINDA!
Aurora finally got to get her leads off today! YIPPEE... she was so worried about where her hair went, LOL, and was suprised to know it was STILL there! I was able to get her out of the room and let her play in the playroom! She is so beat though so she wanted to go back to her bed and watch "Annie" her favortie movie!
I AM SO TIRED! SOOOOO SOOOOO TIRED!
I cannot wait to get out of here, and get these kids home!
The Neurologist and Epi should be in soon to discuss the NEW PLAN. I am sure they up'd her Depakote, and Keppra... and I heard they were contemplating adding a third med. One that she would take at night before bed!
I will update when I am aware of the plan.
I AM SO TIRED! SOOOOO SOOOOO TIRED!
I cannot wait to get out of here, and get these kids home!
The Neurologist and Epi should be in soon to discuss the NEW PLAN. I am sure they up'd her Depakote, and Keppra... and I heard they were contemplating adding a third med. One that she would take at night before bed!
I will update when I am aware of the plan.
Thursday, January 22, 2009
Still in Boston, Day 6
We are still here! SUCKS SUCKS SUCKS! Aurora had a massive seizure last night. Scared the crap right out of me! The docs actually just came in to tell me that she was actually in a PARTIAL not fully seizing, but partially there seizure for almost 1 hour, and I WAS LAYING WITH HER, and had no clue!
I am beating myself up about this... literally feeling guilty and shitty! Its not good! I cant keep my emotions in, I am run down and tired, and feel like complete CRAP! Last night when I was laying with her, I couldnt I MEAN COULDNT keep my eyes open. They just kept on shutting, and I guess during alot of those times that I kept passing out, Aurora was in a seizure! AND I WAS SLEEPING! See.... kicking my ass! Its not good!
Anyways. The plan is that she HOPEFULLY will have a seizure tommorow between the hours of 8am-2pm, where at that point they will inject a dye that will go straight to the area of her brain that is seizing... and this I guess is good information for them to know. THEN THEY PROMISED at 2PM she will go back on meds... WE will still be here for a couple days so we will probably head home Monday Morning!
I feel like I am living a nightmare right now. I want to get her home so bad.... :(
They have found out a lot of information, and said that now they know what TYPES of seizures she is having, EXACTLY what they look like, they will start an agressive treatment, and WILL HOPEFULLY stop ALL her seizures!
We will be watching all the Seizures on video before we leave so that we KNOW exactly what to be looking for!
I am beat, Aurora is beat, Wesley is beat.... WE NEED TO GET HOME... So please keep Aurora in your prayers, and hopefully I can bring my princess home on monday!
I am beating myself up about this... literally feeling guilty and shitty! Its not good! I cant keep my emotions in, I am run down and tired, and feel like complete CRAP! Last night when I was laying with her, I couldnt I MEAN COULDNT keep my eyes open. They just kept on shutting, and I guess during alot of those times that I kept passing out, Aurora was in a seizure! AND I WAS SLEEPING! See.... kicking my ass! Its not good!
Anyways. The plan is that she HOPEFULLY will have a seizure tommorow between the hours of 8am-2pm, where at that point they will inject a dye that will go straight to the area of her brain that is seizing... and this I guess is good information for them to know. THEN THEY PROMISED at 2PM she will go back on meds... WE will still be here for a couple days so we will probably head home Monday Morning!
I feel like I am living a nightmare right now. I want to get her home so bad.... :(
They have found out a lot of information, and said that now they know what TYPES of seizures she is having, EXACTLY what they look like, they will start an agressive treatment, and WILL HOPEFULLY stop ALL her seizures!
We will be watching all the Seizures on video before we leave so that we KNOW exactly what to be looking for!
I am beat, Aurora is beat, Wesley is beat.... WE NEED TO GET HOME... So please keep Aurora in your prayers, and hopefully I can bring my princess home on monday!
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