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!
Tuesday, January 20, 2009
Update on Aurora
Hey everyone. So we are still here in Boston. On day 4. My neck hurts so bad from having to sleep on a tiny cot with Wesley and I am ABSOLUTELY miserable, I CANNOT WAIT to get my kids home! So if I am that miserable, you can imagine how Aurora is! She is still on the leads, they have captured 1 seizure so far, and want at least 2 more. I am starting to think we will be here all week, which sucks! She looks and feels like crap! Poor kid! She kept saying last night: "I want to go home, where is the car?" "I love you mommy, I am sorry for this""Its all my fault, this is all my fault!" While she hysterically cried. When I told her that this wasnt her fault and that it was OK... and that we loved her so much, she just cried and hugged me and and said "I love you mommy!" SO DAMN SAD! This is horrible. We are here to figure this all out, but my Aurora is feeling upset and thinking she did something wrong. It breaks my heart! She asked me why Wesley didnt need his special hat, or have seizures! Epilepsy is so much more than the seizures, not only do we have to deal with the seizures, but trying to make Aurora understand she did NOTHING wrong, and that its ok... and try to explain to her why Wesley doesnt have to wear a hat or do what she is doing right now!This sucks! I cried a little bit yesterday because I had gotten the news that the night before when WHAT WE THOUGHT was Aurora's typical seizures (and had 9 of them) those were not showing up at seizures on the EEG. They said that they could be MINI seizures or Aura's that she is getting, because she had 9 of them and then she had a 3 minute long seizure. I WAS STARTLED when I watched the video with the doctors to find out that when she did have the seizure they captured on video that I WAS LOOKING RIGHT AT HER, and didnt even have a clue. It was so subtle. She cranked her head over, eyes kind of fixated, and then she turned rubbed her nose, and then eye... and then did something weird with her mouth which was so hard to notice because she had her paci in, and she was laying down trying to sleep.. and can I say this was at 4am! I felt so guilty that I had been LOOKING RIGHT AT HER and had no clue. Plus I was by myself here that night with both the kids, and I was exhausted and barely could keep my eyes open! I want to hurry and get this over with, and get my Aurora Bug home.... This has been a nightmare! And now that we learned what these new seizures look like, I feel sick to my stomach, thinking "HOW WILL I KNOW?" I am going to be that mom FREAK who questions every time she rubs her eyes or nose???? THIS SUCKS SUCKS SUCKS! Awwwwwwwwwww. Anyways, it feels good to write this all out!
Saturday, January 17, 2009
We are in Boston.
Well, Aurora went into cluster seizures 3 days ago... ER TRIP, IV MEDS, ect ect. We were suppose to come to Boston on Wednesday for a 5 day Video EEG... but because of this, we drove down last night...
We got here a little after midnight, and then didnt get into her EEG room until almost 4am, BOTH KIDS stayed up until about 4:30am and we all were up by 8am! TALK ABOUT BEAT!
Aurora is hooked up to the EEG, and they will start the med wean process tommorow. We already spoke with a couple of doctors, who feel that NUMBER ONE: Aurora is still not at a therapeutic level for her Depakote, so that can be why she is still having seizures, so they want to continue to increase it slowly to get to the therapuetic range, and then SECONDLY: The EEG they said will tell them so much if they catch her seizures...
So we are here. I am very tired.... The kids are tired. But we were advised to let Aurora SKIP nap and stay up until about 11-midnight tonight!
I feel so bad for her. I cant tell you how much this breaks my heart that she has to go through this! Its so unfair...
She has been stuck 5 times now.. 3 times to try to put in a IV for her stay here and then this morning for blood level draw. Then getting the leads on SHE HATES HATES HATES that, and just cries and looks at me and says "I love you Mommy, This is not good!" SOOOO SAD!
I have to so much hold my emotions in, but I feel like tonight I will take a shower here and just cry... because this is so much to go through for all of us!
I get mad and think sometimes, WHY THE HELL did this have to all happen to my daughter... but then I stop myself and think "THANK GOD I have her in my life, and things could ALWAYS ALWAYS be so much worse!"
Anyways. If you want to contact us you can call the BCH directly and ask for ROOM #917.
I will update soon :) I have limited computer access... and I cant log onto myspace... so hopefully people will know to come here!
We got here a little after midnight, and then didnt get into her EEG room until almost 4am, BOTH KIDS stayed up until about 4:30am and we all were up by 8am! TALK ABOUT BEAT!
Aurora is hooked up to the EEG, and they will start the med wean process tommorow. We already spoke with a couple of doctors, who feel that NUMBER ONE: Aurora is still not at a therapeutic level for her Depakote, so that can be why she is still having seizures, so they want to continue to increase it slowly to get to the therapuetic range, and then SECONDLY: The EEG they said will tell them so much if they catch her seizures...
So we are here. I am very tired.... The kids are tired. But we were advised to let Aurora SKIP nap and stay up until about 11-midnight tonight!
I feel so bad for her. I cant tell you how much this breaks my heart that she has to go through this! Its so unfair...
She has been stuck 5 times now.. 3 times to try to put in a IV for her stay here and then this morning for blood level draw. Then getting the leads on SHE HATES HATES HATES that, and just cries and looks at me and says "I love you Mommy, This is not good!" SOOOO SAD!
I have to so much hold my emotions in, but I feel like tonight I will take a shower here and just cry... because this is so much to go through for all of us!
I get mad and think sometimes, WHY THE HELL did this have to all happen to my daughter... but then I stop myself and think "THANK GOD I have her in my life, and things could ALWAYS ALWAYS be so much worse!"
Anyways. If you want to contact us you can call the BCH directly and ask for ROOM #917.
I will update soon :) I have limited computer access... and I cant log onto myspace... so hopefully people will know to come here!
Thursday, January 8, 2009
Home from Boston.
So we are home from our trip to Boston with Aurora.... I AM BEAT BEAT BEAT! Phew, it is good to be home.
Her appointment was GREAT! I transferred her care into the new doctors hands, Dr. Takeoka. He was an amazing doctor, very smart, and kind, and had a plan in place :) He was very confident that he could treat Aurora and get her control! I liked the idea of her seeing him because he is an Epilepsy Specialist, he eats sleeps and breaths Epilepsy... and that is where she needs to be.
He did say that because she is in the category of being hard to treat, that being in Boston was a great place for her, and that she would be in great hands!
We will be going back Jan 21st for a 5 night Video EEG, where they will actually wean her off her meds, and then want a seizure to be captured on the EEG. Then they will put her back on the meds, we will be there about 1 week!
He said that doing this is important to see EXACTLY where the seizures are taking place when they happen... he said with this information he would be able to narrow down meds that will work for her specific seizures and location of the brain!
To me, this is a good next step... I dont want to play guessing games with meds, and have her be a guinea pig... so this is good!
So, we are back home, we are all beat!!!!
For now, she is on day 6 of no seizures, and all is well except for these colds we caught being there... BLAH!
I have my doc appointment tommorow and then my ultrasound in 1 week to find out the gender of the baby!!! VERY exciting.. its crazy that I am almost 20 weeks... its flying by already!
Her appointment was GREAT! I transferred her care into the new doctors hands, Dr. Takeoka. He was an amazing doctor, very smart, and kind, and had a plan in place :) He was very confident that he could treat Aurora and get her control! I liked the idea of her seeing him because he is an Epilepsy Specialist, he eats sleeps and breaths Epilepsy... and that is where she needs to be.
He did say that because she is in the category of being hard to treat, that being in Boston was a great place for her, and that she would be in great hands!
We will be going back Jan 21st for a 5 night Video EEG, where they will actually wean her off her meds, and then want a seizure to be captured on the EEG. Then they will put her back on the meds, we will be there about 1 week!
He said that doing this is important to see EXACTLY where the seizures are taking place when they happen... he said with this information he would be able to narrow down meds that will work for her specific seizures and location of the brain!
To me, this is a good next step... I dont want to play guessing games with meds, and have her be a guinea pig... so this is good!
So, we are back home, we are all beat!!!!
For now, she is on day 6 of no seizures, and all is well except for these colds we caught being there... BLAH!
I have my doc appointment tommorow and then my ultrasound in 1 week to find out the gender of the baby!!! VERY exciting.. its crazy that I am almost 20 weeks... its flying by already!
Sunday, January 4, 2009
18 Weeks and counting...
I will be 18 weeks tommorow... and will be finding out the gender in 2 weeks!!! Time is flying by~ I pray things settle with Aurora, this whole pregnancy has been a WHIRL WIND of emotions and fear that she wont be controlled... and another baby might make things worse! I pray not! She loves her brother, and everyone says SHE WILL BE FINE!!!
I am excited to find out what we are having, and have names picked out, WHICH ARE SECRET! LOL!
I am excited to find out what we are having, and have names picked out, WHICH ARE SECRET! LOL!
Mr. Wesley
LOL... Mr. Wes is going to be 1 years old in 1 month!! He has been walking for 2 weeks now! He is such a good boy :) I love him to peices!
In this picture, he was laughing SOOO hard! LOL
In this picture, he was laughing SOOO hard! LOL
Seizures just couldnt stay away!
Aurora made it to day 28 with NO SEIZURES! This was amazing considering she hasnt gone this long in I dont even remember when!
I really thought that she wasnt going to have any....
Last weekend Dec 27th, I gave Aurora a peice of chocolate that we had gotten from Christmas time. I had my sister pick it out and asked her to give Aurora one with "Peanuts"... WELL the box must have been flipped the other way, and instead she got one with "Walnuts" which she has never had!
WITHIN 5 minutes Aurora was puking, and hives from HEAD TO TOE!!!! I rushed her to the ER where they gave her 3 different meds to make the reaction stop! It was horrible... She itched so bad!!!
So that Monday we took her to Timberlane Allergy, where she tested positive for being allergic to "Walnuts" and "Pistachio's" GREAT!!!! Which means she now needs to have an Epi pen with us at all times! And it seems like it would be easy to make sure she doesnt have these things, BUT because its tree nuts, they banned her from ALL TREE NUTS! COME ON! The other day I wanted to make some brownies with her... and what do you know, right on the side of the box, "This was manufactured on the same table as tree nuts!" You got to be kidding me! So now I am a freak CHECKING ALL LABELS!
So of course the next day after her ER visit and all the Steriod meds, she looked very off, very seizury! For the first time in 28 days, she was saying "Im going to have a seizure" she said this for days... until 2 days ago, she woke up at 5:30am, and had a seizure! Then she had 6 more, landed herself in the ER, IV Meds, and a crappy day! DAMN DAMN DAMN DAMN!
I wasnt suprised, because it seemed that the HIVES and Steriod meds made her look seizury, and her Pedi came to see her in the ER that day while she was having seizures and said that the Steriod Meds probably played a big part in her Break through seizures.
Her blood work done that day also showed that she wasnt at her level yet for her Depakote. Her level that they want her at should be 90-100, and she was at 61. Soooo, they bumped up her meds! She still looks off... but we are now recounting, and today is day 2 of no seizures, and that in my mind is good! I dont want her to have seizures everyday! So ANY DAY without a seizure in my book is A GREAT DAY!
Sucks to have to update with bad news! But that is why I havent updated, its been a crazy 2 weeks...
We leave for Boston to meet with the new Neuro in 2 days. I am excited to hear another perspective. We love her current Neuro, and do not have any problems with her at all, and think she has really looked out for Aurora... but sometimes other doctors think of something the other didnt, or they might have other suggestions, and at this point... I will take anything we can get to make her better!
In 1 month, it will be 1 year since Aurora was diagnosed with Epilepsy, and she isnt controlled fully! This makes me so sad... I cried in bed the other night thinking, PLEASE GOD give her the strength to make this better, to help her NOT have seizures!!!!!
I pray with this new year that she will get that!!!!!
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