Friday, November 19, 2010
Monday, October 25, 2010
I should of helped. But I was too tired. Besides, it was only a few minutes later that Brandon had Sophie out of the bath and wrapped into a towel. It was my turn to take over so he could finish up the other two still in the bath.
So I took her to her most favorite place in the house. My bed. Between the position of the room (in relation to the sun) and having the blinds closed, it is usually fairly dark in the room. It is a place I take her to several times a day when she is in sensory overload.
She immediately calmed down and smiled at me.
So I asked her... Why were you crying?
She replied... I was scared.
Scared of what?
Yes! It was at the front door.
It was at the front door?
It smell me.
At first, I thought...what book are they reading at school. Now I am wondering if it was a hallucination seizure. That thought just entered my head as I was typing this post. Maybe because I had just read this article.
Tuesday, October 19, 2010
There was no consistency in the EEG pattern with these movements. But, they believe the movements look like seizures so they believe they are seizures. They believe that the scalp EEG is not able to pick them up. In the remaining tissue in her left hemisphere, she continues to have intermittent spiking when she is awake and frequent spiking when she is sleeping.
She is currently on Dilantin and Depakote. It is a good combination to be on coming out of surgery because they work through different channels in the brain. But the Dilantin speeds up the metabolism of Depakote, so we were never able to get her Depakote level to a therapeutic dose. With each relapse, we increased the Depakote which would temporarily solve the problem. So we are taking a different approach this time. We are weaning the Dilantin in hopes that it will increase her Depakote level and stop the seizures.
We are currently weaning Dilantin with no relief in seizures. In fact, they are more intense. I now have no doubt...they are definitely seizures and they are getting worse. I am not sure what to do. Either her brain needs the Dilantin -or- she is having withdrawal seizures that will eventually stabilize. In the past, EVERY SINGLE TIME we have weaned an anti-epileptic drug (AED), she had withdrawal seizures. Even if the drug did NOTHING to stop the seizures she was currently having.
So, we will play the "wait and see" game and hope the past holds true. I really do not want to add another AED. Dr. Chugani suggested Vimpat. That is one she has never tried so it's time to do my research.
Wednesday, October 13, 2010
If your child loves Sesame Street, I highly recommend this.
She is learning lots from this book.
No...she wasn't this happy.
I asked her to smile and she obliged.
But not one tear was shed.
We were able to easily distract her.
Especially with her birthday present she got moments before...an iPad.
A birthday sign she had made at school.
Her incredible nurse decorated her door with the Happy Birthday letters.
Aunt Diane came by for a visit and gave her some fun books to read.
The hospital (along with a gift bag put together from a local girl scout troop) gave her birthday presents and balloons.
She has never before been interested in birthday presents.
But she ripped right into these!!!
Sophie's nurse and someone from Child Life Services.
Uncle Jason brought Sophie her favorite meal (chicken caesar salad from Panera).
Sophie's beloved Grandma came and stayed the day with her.
There is no one in the world that she loves more.
Singing Happy Birthday to her.
She pretended to blow out candles.
She had some fun with the icing on her cookie cake.
Uncle Jake came by for a visit and brought her a fun birthday present.
Daddy and Sophie.
Sunday, October 03, 2010
Because someone asked me if I am done blogging.
Because I just cannot find the right words.
So here is a video* for you all to see just how well Sophie is doing. Especially when you compare it to this video from a year ago (where I am requesting her to say words compared to actually having an on-going conversation with her now).
*I hope her chewing food doesn't distract you from the video. This is when her concentration and stillness levels are at their highest.
Thursday, June 24, 2010
Which brings me to yesterday afternoon. When I picked Sophie up from school. She told me she worked for skittles today...blue ones. But when I told her I did not think there were any blue skittles. She paused and said purple.
It sounded true. But I just had to double check. And this is the e-mail I just got from her teacher...
She did want to work for skittles and she wanted blue ones, I told her there are not any blue so then she said purple!!!! I am so excited that she remembered. She is such a smart girlie!!
She is remembering the details from her day AND sharing them with me. Simply AMAZING!!! She is talking in complete sentences. On average, 5 to 6 words but sometimes up to 8 to 10. My favorite is when she says...I want more cheetos PLEASE. As if shouting "please" makes it all better ;) Gotta love her.
Thursday, June 17, 2010
*I was under the impression she was only having rare, intermittent spiking.
Wednesday, June 16, 2010
She sat on Brandon's lap while holding her baby dolls*. We explained everything to her that was about to happen. We let her touch and feel all the things they were going to use on her. She kept saying "hurt" in the saddest voice. But we kept reassuring her that it would not. There were several times where she almost lost it but we were able to calm her down before that happened. I think it was also very helpful that she was simultaneously doing everything to her baby dolls that they were doing to her. Maybe she felt in control of the situation. I wish they sold EEG play kits (kind of like a doctor's kit).
Once we got back to her room, she kept wanting to leave and did not want to wear the backpack. So we resorted to letting her munch on all her favorite snacks since she was not interested in ANY of the distractions I brought. Finally, we put in a CD her teacher from school gave her. That got her excited. It is such a cute CD and she immediately recognized the songs. She knew the movements and even sang along to some of the words to a few of the songs.
She also LOVED when the doctors came in to check her out. She sat so still as they examined her. And when they (there were quite a few) would leave she would say "doctor come back". Have I told you how much she loves playing pretend with her doctor's kit at home and at school...it is one of her favorite toys.
She then ate a great lunch and now she is sleeping peacefully with her Daddy cuddled up right next to her. Child Life just came by and is getting together some toys for us. So hopefully, between my bag of tricks and the "new" toys, she will be distracted enough.
Thank you Uncle Jake for the yummy cookies and stopping by for a visit. Thank you Grandma Debbie for also visiting and watching the little ones for us. Brandon and I were able to have a nice lunch outside at one of my favorite restaurants down the street from the hospital.
*My sweet little 2 year old Elsa ran and got her beloved Dora doll for Sophie to take to the hospital with her when she found out Sophie had to stay the night in the hospital. And we also brought along baby Chou Chou...her favorite.
Tuesday, June 15, 2010
Because those bright red, tear-filled eyes are already haunting me. They are already breaking my heart.
Tomorrow, she goes in for a 24 to 48 hour EEG. Most likely 24 hours but they threw in the 48 hours for "just in case". She HATES getting the leads glued to her head. HATES it. HATES it. HATES it. It is pure torture for her. You should see the fit she throws for me when I want to brush her hair. Her short little bob cut with no tangles hair. She is very sensitive to people* messing with her head...as you can only imagine given her history. Because I still flinch when her mouth comes close to my arm in remembrance of her biting sprees. So I can only imagine the nightmares that must flash through her mind. They still flash through mine.
We are going in because she had been doing some "odd movements" that look eerily familiar. We upped her medication twice and things are looking much better. But we still have to know what is going on.
* Except for her 8 year old cousin Colin. In which, she would do ANYTHING for him...brush her teeth, lay still during diaper changes, brush her hair, take her medicine, etc. She absolutely adores everything and anything he does. He is the coolest person in the world to her. Colin can you please hop on a plane and be here by 8:30am tomorrow?
Thursday, June 10, 2010
As Sophie was sitting on the couch with one of her baby dolls, she had a two-sided conversation with her baby doll that went like this...
Sophie: Hi baby.
Sophie (talking for the baby): What is your name?
Sophie: Sophie. What is your name?
Sophie (talking for the baby): Baby.
I did not see it. But Brandon did. And I made him tell me the story over and over and over again. Sophie is going through another one of her developmental growth spurts. I wish I was on a reality TV show so that every little magical moment could be captured on film. Or maybe not, because with Sophie, every little magical moment comes with a not so...um...magical moment. Because as soon as Brandon turned his head to share the wonderful news, she decided to kick him where it hurts most on a male.
Wednesday, May 26, 2010
That night I was on edge after she fell asleep. Since I thought it was all related to breathing issues, I thought maybe she would stop breathing in the middle of the night. So I turned the baby monitor as loud as it could go so I could actually hear her every breath...what an incredibly sweet sound.
And then it happened again. That same sound she made during the first "episode". So I ran into her room and peeked into her crib. She was doing the exact same movements. I picked her up and she fell back asleep on my shoulder.
The following morning, she did almost the exact same thing. Except this time, she was sitting in her highchair and her arms came in instead of flying out. So I called the pediatrician and we got in to see her that evening. I showed her the videotape of the episode from earlier that day and she said she would call the neurologist's office in the morning.
I honestly thought it was nothing. I was so optimistic. She had been completely healthy up to this point. She was hitting the milestones. See...I was an optimistic person in life before all this. I always felt that things had a way of working out. But, this...what happened in the next few days...has forever changed me.
We got in to see the neurologist the next evening (by now it is Tuesday). She had a few more episodes by then. I gave him the whole history and showed him the videotape. He told us to come back first thing tomorrow morning for an EEG.
Still, no panic. None. Still optimistic. Everything was going to be just fine.
Well, moments after the EEG, our world came crashing down. I could not breathe. I could not stand. I could not stop crying. I just wanted to die. We were told that our sweet, precious, little baby girl has Infantile Spasms. That we were to immediately take her to the hospital in which they were going to run a series of test. We were told that she had a 70% chance of being mentally retarded. We were told that we (Brandon and I) would have to give our daughter daily injections, in which, a side effect is...DEATH. All this information in a matter of minutes.
We pulled ourselves together just enough to drive to the hospital. She had another EEG, blood drawn (the beginning of genetic testing), spinal tap, MRI and began the ACTH treatment.
Because of the side effects of ACTH, she went from looking like this...
May 15, 2006
To looking like this...
July 4, 2006 (In the middle of weaning ACTH)
These are hard pictures to look at. Brings back too many painful memories (or I should say nightmares). ACTH did not work. So we began the journey of working our way through a long list of anti-epileptic drugs and alternative treatments that failed, one after another. In which we were told that with each failed medication, our chances for seizure freedom was slim, if not impossible. And that there was nothing else we could do for our daughter. That there will be a time that the seizures will overcome her body and she will start regressing.
The only DOCTOR that ever gave us the option for surgery was Dr. Chugani. I say "doctor" because it was another mom (a mom whose son had surgery) that told us about Dr. Chugani. Because a MAJORITY of neurologist do not believe that those with Infantile Spasms are surgical candidates. Because their EEGs are too chaotic. With Infantile Spasms, there is CONSTANT electrical discharges occurring. Can you imagine your brain never being at peace?!?! But Dr. Chugani along with Dr. Sood and Dr. Asano (the surgical team) see beyond that. They see the potential these children have. They take the risk.
So one year ago today (May 26, 2009), the surgical process began. Grids were placed to monitor the seizure activity and map the areas to be removed. I am reliving it...VIVIDLY. I think I am finally letting those emotions surface. Because I went numb. I went into survival mode. I was 32 weeks pregnant. I had a 16 month old baby girl back home (about 575 miles away).
It is hard for me to deal with these emotions now. Because I want to repress them. I do not want to think about them. Surgery was a nightmare miracle (as Danielle puts it). It has brought so much pain and joy in my life. I am so grateful for it but I hate (and it eats me up inside) that she had to go through that to get where she is today.
And now there is another little girl who is about to enter this world...the brain surgery world. Please keep her in your thoughts and prayers.
Friday, May 07, 2010
I VIVIDLY remember Sophie's first cluster of jackknife seizures. It was May 7, 2006.
We went to visit my sister and her family at their condo on the lake only a few hours away from where we lived. It was Sunday and we were getting ready to leave in a few hours. Erin and I along with Sophie stayed behind while the rest of the bunch went fishing on the boat docks. Sophie had a little bit of a stuffy nose. As I laid her on the ground, she did some odd "movements". Her arms went out and her eyes slightly rolled back. She made this odd noise through her nose. I thought it was strange. And then she did it again. And again. And again. Maybe 8 times.
I picked her up and she fell asleep on my shoulder.I looked over at my sister and asked her what she thought. She did not know what to make of it. I do not know why the following words came out of my mouth. I have never seen or knew of a person who had a seizure. But I asked her if she thought it was a seizure.
Initially, I blew it off. I became preoccupied with packing things up. But once we got home, I could not stop thinking about it. So I called the pediatrician's after hour service. They said that she was probably having a hard time breathing since she was stuffy. So that was that.
Wednesday, April 28, 2010
*Sophie instantly fell in love with the Black Eyed Peas performing Boom Boom Pow on American Idol. We had it saved on our DVR for almost a year before it somehow got deleted. Thank goodness for YouTube.
Monday, April 26, 2010
Sophie is waiting anxiously to get on a horse.
Without even looking back, she grabs the complete stranger's hand and walks through the gate towards the horses.
Once they got her situated on top of the horse, she turned around and said "bye mommy". Absolutely no fear. No hesitation. Just pure joy.
Here she is holding onto the reins. Looking like such a big girl.
They do activities throughout the lesson.
Like put your hands on your helmet.
Or put the rings on the stick.
These were pictures from Sophie's first lesson. On our way home from this lesson, Sophie almost said the ABCs in entirety. She usually says ABCDE and then gets distracted. But this time, she said A through T. Then later that night, she finished T through Z.
Every day since then, she asks to "ride Scout" (the name of her horse). She is so very proud and loves to show everyone the pictures I printed off for her. It is an amazing form of therapy. Most of the people that work with this program are volunteers. Each rider must have three people with them at all times. One to lead the horse and two side walkers. They do a lot of fundraising events to help subsidize the cost. And if you absolutely cannot afford it, then they request that you put in some volunteer hours instead. (In other words, I highly recommend looking into this program wherever you may live.)
I am hoping that this will help with Sophie's ability to focus for longer periods of time. I am unwillingly (currently) to put her on any ADHD medications. I am trying to find some kind of alternative approach.
Therapy has always worked for Sophie. She retains the information. She just has issues with getting it to show. First it was the daily seizures. All that knowledge that she retained in the three years she received therapy through Early Intervention and preschool just came pouring out after surgery. It just proves how important therapy is even when you are not sure if the child is learning or retaining any of that information. It is absolutely amazing to watch her cognitive development take off. On the other hand, her lack of ability to focus is preventing her from showing us her full potential. So, hopefully, equine-assisted therapy will be another form of therapy that will help supplement what she is learning in school.
I think if Sophie could express it in words, she would tell us she wanted to move to a horse ranch and ride in wide open fields all day long. Because in her second lesson, she stood up in the stirrups and started bouncing up and down as to try to make the horse go faster. Here is a video from her first lesson...
Thursday, March 04, 2010
I was NOT looking forward to today. Sophie had to stay home from school. I was to be alone with all 3 kids. And if you REALLY know Sophie, if you have spent a long period of time with her in her normal home environment without the distraction of being able to have one-on-one attention from an adult, then you would know how hard this can be. But I am not going to get into that in this post. This post is about the sweeter moments.
And there was no sweeter moment than 12:10pm today.
Charlie had just fell asleep and I put him in his crib. I needed to make lunch and the kitchen was still a mess from breakfast. So, I got Sophie and Elsa cozied up on some blankets on the floor in front of the TV. Dora was on. Their new favorite. I picked up the dishes from the table and started rinsing them off in the sink. A few minutes later, Sophie came up to me saying "look, look". As I looked over at her, she was half naked, holding...
A POT FULL OF PEE!!!
I immediately swept her up and danced around and sang songs of praises. Her face was lit up. She was so proud of herself. I was so proud of her. We called grandma and daddy and even her teacher at school. I could hardly contain myself. This is the FIRST time that she has ever done this. There has been just a handful of times that if you sat her on the potty at just the right time or entertained her long enough, she would go. But this was the first time she had ever done it ALL. BY. HERSELF.
Just in case you don't realize the whole thought process that she had to go through, I will recap it for you.... She had to not only understand that she needed to go but to hold it. A huge concept if you really think about it. Because it is not something I can explain to her or show her. Then, she had to shift her focus from watching TV, decide to use the potty, walk over to the next room to use the little potty, take off her big girl undies*, and sit down and go. Hooray for Sophie!!!
*Sophie has a diaper rash so I used baby gates to close off the part of the house with hardwood floors, rolled up the rug and put big girl undies on her to let things air out. I kept reinforcing the fact that she was wearing them and not wearing a diaper.
Here are some random pics...
The other night, while we were eating dinner, Elsa decided to sit on Sophie's lap. We have a rule that no one is allowed to sit on anyone's lap while eating dinner. Because things were getting out of control with climbing in and out of laps and demanding this and that and blah, blah, blah. So, once Elsa was rejected by me, Brandon and Grandma Debbie, she decided to try Sophie who willingly let her on up.
Charlie fell asleep in between bites.
By the way, Charlie is doing incredible. He is cruising furniture and crawling all over the place (including up the steps...which I learned the hard way). He is still just a super laid back baby and can easily entertain himself.
One last thing. Sophie never made it in the potty again today. But she did pee on a paper plate that was lying on the floor that she was playing with earlier today. And she was very proud of herself. She said "peepee...yeah" and when we asked "where" she led us in the opposite direction of the potty to the paper plate. She was so excited. I wanted to be really excited for her but at the same time I did not want to encourage her to find random objects to pee on. Oh, this is going to be interesting. I am going to try to keep up with it through the weekend and see where it goes.
Wednesday, March 03, 2010
Sunday, February 21, 2010
Haley enjoyed catching up with her cousins and racing down all of the waterslides. It was hard to catch a picture of them but I made them stop for just a moment so that I could snap a pic.
Elsa had fun lounging around. Especially in the kid-friendly hot tub. She is not very adventurous. Okay, she is the complete opposite. She loved to be held and didn't want to go down any slides. I am wondering if her feet ever touched the ground?!?!
Sophie, on the other hand, is quite the adventurous one. She went down EVERY single waterslide and had a blast doing so. It took me until Day 3 to let her go down the last 2 that she had not tried (they were partially enclosed slides that she had to go down by herself). And she loved them. She had a HUGE smile on her face at the bottom of each and every single ride she went down.
Great Wolf Lodge has to be the MOST kid-friendly place that I have ever been to. From wearing our pjs to breakfast to the bedtime story telling in the cozy lobby to the magic shows and dance parties to so much more. You never had to leave the building and there was enough entertainment to keep the kids busy even outside the waterpark.
It was Valentine's Day weekend and they brought out a huge tub of heart shaped sugar cookies, icing and sprinkles for everyone to decorate.
Though it doesn't look like it in this picture, Sophie loved Wiley (the bear) and Elsa was scared out of her mind (but she can't resist cheesing it up for a picture).
One HUGE bonus from this trip... We got to meet Kylie, Jody and Matt. I will never be able to express in words what it is like to meet another family that has fought through Infantile Spasms. It is a bond like no other. Kylie is one adorable little girl and her parents are two of the sweetest and most genuine people I have ever met. They are doing an AMAZING job at raising Kylie. It was such an honor to meet this cozy little family.