Emily has had a pretty horrible no good bad kinda week. She has been retching and gagging like crazy, non-stop. I can't imagine how horrible it must feel. :( Her lips literally turn blue when she retches so much because she can't catch her breath. Her seizures are kicked up as well. Yesterday she seized on the walk to the bus, as I was putting her on the bus, and three times on the (hour long) drive to school. By the time she got to school she was post-ictal and lethargic and grumpy. They tried to help her relax and rest, but she continued to seize off and on. She only lasted until 9:00 before they called me to come get her. :(
This morning she had one pretty big seizure, and then only a few small ones at school.
I am so tired of seizures. I hate them. I hate even more that I don't even know what is or isn't a seizure anymore. She is such a moving retching sad thing, it's hard to tell.
Our testing hospitalization on Nov. 7th can not come soon enough. Yesterday was so bad, I almost drove her to UCLA to try and get in earlier through the ER.
Did I mention that I *HATE* seizures? Boo!
We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
Wednesday, October 27, 2010
Monday, October 25, 2010
We go inpatient on Nov 7th ...
It is considered pre-op, as we are doing a lot of seizure/brain testing. We are doing a LT VEEG, MRI, and PET scan. They are hoping it will isolate a seizure starting point that they can resect. If not, then we are talking seriously about a vagus nerve stimulator.
We are scheduled for at least one overnight, and up to five or so according to the scheduler. They want to capture at least three different seizure types or questionable activities.
This is our first stay at UCLA (Mattel Children's). I am used to CHOC, I know how everything works there. For $5 you can order a parent tray at each meal. There are chairs that fold out to beds. There are showers for parents. There are volunteers on each floor so that you can take a break if you are alone with your child. I will be alone with Emily the entire stay. DH now works from home, and we have Jacob to deal with. So I will be stranded there the entire time, and am trying to plan for it. PElizabeth, Heather, I need advice! Please give me your insight as to this particular hospital!
We are scheduled for at least one overnight, and up to five or so according to the scheduler. They want to capture at least three different seizure types or questionable activities.
This is our first stay at UCLA (Mattel Children's). I am used to CHOC, I know how everything works there. For $5 you can order a parent tray at each meal. There are chairs that fold out to beds. There are showers for parents. There are volunteers on each floor so that you can take a break if you are alone with your child. I will be alone with Emily the entire stay. DH now works from home, and we have Jacob to deal with. So I will be stranded there the entire time, and am trying to plan for it. PElizabeth, Heather, I need advice! Please give me your insight as to this particular hospital!
Saturday, October 23, 2010
We just had our meeting with Make A Wish!
We decided finally what to wish for, for Emily. We were thinking of a trip, a vacation, a cruise. In the end, we decided that although she would like any of those things, her house and her bedroom are her favorite places of all.
She was denied a Sleep Safe Bed through her insurance, so we are asking for that. They are going to propose that we get a new bed, an EmFit epilepsy monitor for the bed, a mounted TV with DVD player, and all new storage. Her room is so full of medical equipment and supplies that it is a disaster and has rubbermaid containers everywhere. So the plan is for them to completely redo her room.
She will LOVE it. She loves snuggling in her bed and watching DVD's. Without her down time every day she is extremely grumpy.
They are going to see if they can throw in an Ipad as an extra! :)
Sunday, October 17, 2010
Emily's Birthday Party - picture overload!
Emily did not want anything to do with opening presents! All she wanted was to get back in the bouncy house, which she LOVED.
Our little friend Jocelyn. She was SO excited over the lollipop from the pinata!
Our friend Brady taking a turn at the pinata.
Our friend Ryan taking a turn at the pinata.
All the kids on a mad candy scramble.
Emily and her pinata!
Happy birthday big girl!
The party in my front yard.
All of our friends in the bouncy house. This was SUCH a great idea for a bunch of special needs kids. They all LOVED it!!
Zoey ... she's got a special place in my heart. I just love her.
Colette and her Daddy.
Emily with Bumpa, and two friends.
This next picture is PURE joy. She LOVED the bouncy house!
Please help us raise money for our Children's Hospital!Donate to Princess Emily's team for the CHOC Walk!
CLICK HERE Any amount helps, even a few dollars. :)
Thank you!
Saturday, October 16, 2010
Seven years ago today ...
A peanut was born! Happy birthday to my sweet girl!
She was 7 months old in this picture, her newborn time is not on this computer. :)
Please help us raise money for our Children's Hospital!Donate to Princess Emily's team for the CHOC Walk!CLICK HERE Any amount helps, even a few dollars. :)Thank you!
Thursday, October 14, 2010
Emily's First Field Trip!
Emily is a second grader this year, but she is mainstreamed into the kindergarten class through-out the day still. She is very social and she LOVES it. She does circle time on the mat, calendar time, art time, and recess. The kindergartners adore her, and she has a great time with them. She's tiny, still the size of a small kindy kid, so it's a great fit.
This year, I asked at her IEP for her to be able to go on the field trips with kindergarten this year. Her special ed program doesn't go on any field trips, so this would be a great experience for her.
Her first field trip was this week, to a pumpkin patch! It's a real working far at a local high school. There were farm animals and a giant field to wander through. It wasn't very wheelchair accessible, but we had a blast. Since Emily is going on field trips now, her boyfriend gets to go too. He is in her special ed class, and goes to kindergarten with her. It was so much fun to take these two on a field trip!
It must be field trip week, tomorrow I am going on a big one with Jacob's class. It should be a blast! It includes a boat ride in the ocean and dissecting a fish! :)
Please help us raise money for our Children's Hospital!Donate to Princess Emily's team for the CHOC Walk!CLICK HERE Any amount helps, even a few dollars. :)Thank you!
Tuesday, October 12, 2010
Prayers for Bella's Family
Sweet Bella went to heaven yesterday, after fighting an amazing fight. She recently had a bone marrow transplant for Epidermolysis Bullosa. She had a long 100+ day UCI stay afterwards and her little heart just couldn't take it anymore. Please raise their family up in your prayers
Please help us raise money for our Children's Hospital!Donate to Princess Emily's team for the CHOC Walk!CLICK HERE Any amount helps, even a few dollars. :)Thank you!
Sunday, October 10, 2010
Busy weekend!
This weekend we had a baby shower for my sister, she's due at Thanksgiving with a little girl named Kaitlin. It was a lot of fun and she got a ton of stuff. :) It's going to be so fun to have a little girl around to spoil, and then send home! Hehe I am so excited. This will be my first neice.
After the baby shower we went to my parent's house for a bbq, since the weather was so nice. We have to take advantage of it before it starts getting cold every night! Today I took the kids to the aquarium. Daddy had to work, so it was just us three. It was so crowded that we didn't look at everything, but we had a lot of fun. Jacob loves all the touch tanks, and Emily liked watching the sea otters in the underwater tunnel. :)
This is a busy week, leading up to a busy weekend. Emily turns SEVEN this Saturday! We are having a Minnie Mouse party with a bouncy house. She loves sitting on someone's lap in them while other people jump. I can't wait, she is going to have so much fun. A bunch of her little friends are coming, there will be 6-8 other disabled kids. It is going to be a blast! :)
Sunday is CHOC Walk. I am looking forward to this so much. We picked up our bracelets and t-shirts today, so we are all ready! I am $22 short of my goal of $150 under my name. If I can raise another $22 I will get a special Disneyland CHOC Walk pin! If you haven't donated and have a few dollars to spare, PLEASE consider donating to CHOC Walk. Without Children's Hospital, we would not have our beautiful Peanut with us today. They have literally saved her life!! When I signed us in today at the headquarters, I bought her a Choco Bear. It is the hospital's mascot. It's SO cute, and it's almost as big as she is! :)
Please help us raise money for our Children's Hospital!Donate to Princess Emily's team for the CHOC Walk!CLICK HERE Any amount helps, even a few dollars. :)Thank you!
Thursday, October 7, 2010
Home again, home again, jiggity jig!
First, I have to say thank you to everyone who reads here, posts comments, follows us on Facebook, etc. You guys are all awesome and you definitely keep my spirits up when I am stressed. THANK YOU! :)
We saw Dr. Lerner at UCLA. He was incredible. His personality is fabulous, he flirted with Emily, he was so good at explaining things, and I felt like he really wants to help. He asked me about a few tests that no one at CHOC would do, even when I asked about them. The first was that she has some strange patches of skin that are lighter than the rest of her skin. He asked me if anyone had ever mentioned them to me and I told him that CHOC told me it was a birthmark. He laughed and said "of course it is. But did they mention it could mean anything?" No. Never. So he went and got this fancy light (looked like a black light) and checked her whole body. She has quite a few places of abnormal skin tone. He wants to have her tested for Tuberous Sclerosis. He also wants to have her tested for an epilepsy gene, something I had never heard of.
The plan is that we are going to go inpatient at UCLA for a lot of testing. We are going to start with a 24 VEEG. If we catch enough seizures during the 24 hours we will go home. If not, we will be staying until we do. We are also doing a new brain MRI, and a PET scan. I have been asking about a PET scan for over a year and no one would listen to me. This was one of the first things Dr. Lerner asked if she has had done. I am SO glad he is being proactive!
His hope is that we can identify for sure that all of her seizures are coming from the same place. Or that at least MOST of her seizures are coming from the same place. The most recent EEG's showed spikes all originating in the left temporal lobe. If we can isolate the seizure location, then we can hopefully do a resection and remove that piece of brain. If they are not localized, or the area of the brain is not okay to remove, we will do a vagus nerve stimulator.
Hopefully the authorizations for these things will be done within a week or two and we will get in to UCLA for these tests in November. In the meantime, he gave me a new schedule on how to increase her Mysoline better. He said to contact him with any questions or concerns. He mostly does email contact with parents, which is AWESOME. I love that. I wish all doctors would let you email them!
It was a great appointment. I really liked the doctor, I felt like he really listened to me and my concerns, and is going to be a huge help in Emily's care. :)
Please help us raise money for our Children's Hospital! Donate to Princess Emily's team for the CHOC Walk! click hereAny amount helps, even a few dollars. :) Thank you!
We saw Dr. Lerner at UCLA. He was incredible. His personality is fabulous, he flirted with Emily, he was so good at explaining things, and I felt like he really wants to help. He asked me about a few tests that no one at CHOC would do, even when I asked about them. The first was that she has some strange patches of skin that are lighter than the rest of her skin. He asked me if anyone had ever mentioned them to me and I told him that CHOC told me it was a birthmark. He laughed and said "of course it is. But did they mention it could mean anything?" No. Never. So he went and got this fancy light (looked like a black light) and checked her whole body. She has quite a few places of abnormal skin tone. He wants to have her tested for Tuberous Sclerosis. He also wants to have her tested for an epilepsy gene, something I had never heard of.
The plan is that we are going to go inpatient at UCLA for a lot of testing. We are going to start with a 24 VEEG. If we catch enough seizures during the 24 hours we will go home. If not, we will be staying until we do. We are also doing a new brain MRI, and a PET scan. I have been asking about a PET scan for over a year and no one would listen to me. This was one of the first things Dr. Lerner asked if she has had done. I am SO glad he is being proactive!
His hope is that we can identify for sure that all of her seizures are coming from the same place. Or that at least MOST of her seizures are coming from the same place. The most recent EEG's showed spikes all originating in the left temporal lobe. If we can isolate the seizure location, then we can hopefully do a resection and remove that piece of brain. If they are not localized, or the area of the brain is not okay to remove, we will do a vagus nerve stimulator.
Hopefully the authorizations for these things will be done within a week or two and we will get in to UCLA for these tests in November. In the meantime, he gave me a new schedule on how to increase her Mysoline better. He said to contact him with any questions or concerns. He mostly does email contact with parents, which is AWESOME. I love that. I wish all doctors would let you email them!
It was a great appointment. I really liked the doctor, I felt like he really listened to me and my concerns, and is going to be a huge help in Emily's care. :)
Please help us raise money for our Children's Hospital! Donate to Princess Emily's team for the CHOC Walk! click hereAny amount helps, even a few dollars. :) Thank you!
Heading to UCLA
Today's the day! Finally ... we have been waiting anxiously for our UCLA Epilepsy Center appointment since July. Since then her seizures have done nothing but get WORSE over time. With the new med she's on (since her last hospital stay two weeks ago) she isn't having tonic/clonic seizures, and she isn't clustering. But she is still having constant seizures, every day. It's getting to the point that I just want to cry when we sit and play. :(
Hopefully UCLA will have some insight into how to help my beautiful girl. I hate feeling helpless!
Please help us raise money for our Children's Hospital! Donate to Princess Emily's team for the CHOC Walk! click here
Any amount helps, even a few dollars. :) Thank you!
Saturday, October 2, 2010
October!
October already? It seems impossible. Emily will be SEVEN on the 16th. That is incredible! How many times have we been told she wouldn't be with us long. Here she is, and THRIVING! :)
Her seizures have been a ton better this week. She's had quite a few drop seizures when she's sitting on the floor. She just drops straight over, often times forward onto her face. It happens SO fast, in a split second! We have seen a bit of absence seizures and lots of small myoclonics, but that's about it. No tonic clonics at all! We go to UCLA Epilepsy Center this Thursday finally! We've been waiting months for this appointment. I am leaving at 6am for a 9am appointment, as it's in the far end of Los Angeles. Traffic from here to there for a 9am appt will SUCK. It's going to be a long drive, it better be worth it! ;)
I got the formal results of the EEG Emily had two weeks ago after her first ambulance ride of the week. It showed constant seizure activity in the left temporal region. She had them when she was awake and they increased in activity when she fell asleep. The office results read "Sleep-activated left hemispheric sharp waves, encompassing the C3 electrode. Profound background slowing. The above findings are consistent with the patient's clinical diagnosis of symptomatic focal epilepsy, and appeard as Lennox-Gaustat Syndrome".
This EEG just proves what I have thought for a long time now. She is seizing during the day a lot, but as soon as she falls asleep it's almost non-stop! I hope that UCLA takes this seriously. We are getting beyond exhausted in this house.
Emily's IEP is this Tuesday also, so this will be a busy week. I hope YOU are all doing well!
Her seizures have been a ton better this week. She's had quite a few drop seizures when she's sitting on the floor. She just drops straight over, often times forward onto her face. It happens SO fast, in a split second! We have seen a bit of absence seizures and lots of small myoclonics, but that's about it. No tonic clonics at all! We go to UCLA Epilepsy Center this Thursday finally! We've been waiting months for this appointment. I am leaving at 6am for a 9am appointment, as it's in the far end of Los Angeles. Traffic from here to there for a 9am appt will SUCK. It's going to be a long drive, it better be worth it! ;)
I got the formal results of the EEG Emily had two weeks ago after her first ambulance ride of the week. It showed constant seizure activity in the left temporal region. She had them when she was awake and they increased in activity when she fell asleep. The office results read "Sleep-activated left hemispheric sharp waves, encompassing the C3 electrode. Profound background slowing. The above findings are consistent with the patient's clinical diagnosis of symptomatic focal epilepsy, and appeard as Lennox-Gaustat Syndrome".
This EEG just proves what I have thought for a long time now. She is seizing during the day a lot, but as soon as she falls asleep it's almost non-stop! I hope that UCLA takes this seriously. We are getting beyond exhausted in this house.
Emily's IEP is this Tuesday also, so this will be a busy week. I hope YOU are all doing well!
Friday, October 1, 2010
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