Monday, October 26, 2009

Why is this still happening?

Quinn never made it to the hospital today because her parent's insurance has yet to approve the treatment of ACTH.

I am speechless.


At how a child could be sitting at home suffering with seizures without treatment in hand because of insurance issues.

Because Questor decided to charge over $25,000 per vial for ACTH. In which it takes an average of 5 vials per treatment. Yes, that is right. It will cost over $125,000 for a treatment that is not even guaranteed to work. A treatment that only a few years ago cost around $12,000 in TOTAL.

So please click here and show this family your support. I am sure they could probably use it right about now

And to read more about how Questor keeps parents and caregivers waiting on the edge of their seat to find out if ACTH will be their child's miracle drug click here.

Wednesday, October 21, 2009

More on our 24 hour video EEG...

The hookup was horrible. She was crying so hard that she was making herself gag. Not that the EEG tech wasn't great, it is just that Sophie is now very sensitive to anyone touching her head. Can't blame the girl.

Once she was hooked up, she did surprisingly well. She had my and Brandon's full attention. And the attention of any visitor or doctor that came into the room. There was this one doctor, in his fellowship, that came by to get familiar with Sophie's history. She was standing on the bed and he was standing in front of her. She put her arms in the air and kept saying up. So he would lift her up high in the air. Over and over and over again. He was an average size guy and I am sure he was getting tired of lifting all 38 pounds of her over his head. But he obliged until finally I grabbed her so he could make a quick exit.

Around 9pm, Brandon went home for the night. And Sophie and I snuggled up in bed for the night. She slept very well. But by the morning, she was ready to get out of there. I think 24 hours is her limit.

Here are a few video clips...

Monday, October 19, 2009

More than I let myself believe...

So we got the preliminary results of the EEG. The news was not perfect. But it was pretty darn close. Amazing considering we are less than 5 months post-op. Though I could only dream of a perfect EEG, I truly do not know if that is possible. That is a great question I will have to follow up with Dr. Chugani. Not that it could ever be completely normal since almost half her brain was removed. But I wonder what the best case scenario is for her now.

There was a neurologist from our local children's hospital that followed Sophie's care while we were in-patient. He came by on Thursday to get her complete history and then came by after he read the EEG on Friday. There were also a few residents that came by to get her history. Everyone seemed quite interested in her case and I am more than willing to share the knowledge I have gained over the last 3 years to anyone who is willing to listen.

So the results are...

Sophie's right hemisphere looks healthy and there was NO SPIKING on the right hemisphere!!! There was SOME spiking near the motor cortex on the left hemisphere. SOME is so much better than CONSTANT. It is unknown whether it is truly coming from the motor cortex or tissue surrounding the motor cortex that was disconnected. I am not sure if we will ever know.

A bit of history...

During Sophie's grid surgery, through a burr hole on the right side, a strip of grids were placed to monitor her right hemisphere. They were concerned about her right hemisphere because there was an area of concern that showed up on the PET scan. Her EEGs always showed constant spiking on both hemispheres. And since her EEGs were constantly chaotic, they were unable to tell where her seizures were originating. That is until the subdural grid monitoring. Those results showed spiking on the right hemisphere but no seizures originating from the right hemisphere.

There was a big question going into surgery. Since there was constant spiking on her left motor cortex, we did not know if they were going to remove it, perform the MST on it or leave it alone. After the other areas of her brain were removed, there was no spiking on her motor cortex so they did absolutely nothing to it. Which is amazing considering the amount of spiking there was.

All in all...

I am so incredibly grateful that her right side is normal but a bit surprised about the spiking on the left. Honestly, I really do not know what the expectations were post-op besides controlling any possible break-through seizures with meds. I cannot wait to get Dr. Chugani's thoughts on all of this.

Dr. Chugani should have the recording by Wednesday. I am quite tempted to hop on a plane to Detroit right now and stand by his side (or Dr. Asano) and have them explain to me what they are actually seeing on the screen. If I only had my own personal EEG interpreter. I have read this and I am tempted to buy this or this. Because I have many of Sophie's prior EEGs along with her latest EEG saved on my hard drive. So if any of you white coatless moms or dads have found anything you would recommend, please let me know.

How beautiful does this clean sheet of paper look???

Chilling out with Daddy.

Getting ready to get the markers out with Mommy.

Thanks Aunt Cindy and Aunt Diane for visiting.

This sink height was way too perfect...EEK. We went through 3 outfit changes before I finally figured out to put the tray table in front of it. Though, I initially let her play in it for about 30 minutes. Any chance of getting electrocuted?

Snuggling up with NaNaw.

Having a blast coloring.

A fun visit with Red Robin.

Wednesday, October 14, 2009

Yet another EEG...

The med game continues. Except we are on the other side. Before we were always trying to find the right combo to stop the seizures. Now we are trying to find the right dose to make sure they don't come back. Trust me...I realize what side I want to be on. But the thought of a 24 video EEG has my stomach all in knots. Especially dealing with all of Sophie's behavioral issues. So I am nervous about her getting hooked up...tomorrow morning at our local children's hospital.

After the grid surgery, Sophie was put on Dilantin and Depakote. We had issues getting her levels up while we were in the hospital. They did quite a few boluses. They eventually got the levels up to the lower end of the therapeutic range. We got her blood drawn two months after surgery. They were really low. Dilantin was 1.3 (therapeutic range is between 10 - 20). Depakote was 26 (therapeutic range is between 50 - 100). So I e-mailed Dr. Chugani and he suggested we increase the Depakote and check levels again in six weeks. So we did. Dilantin stayed the same and Depakote increased a measly 4 points. So I e-mailed Dr. Chugani again and he suggested that Sophie get a 24 hour video EEG before making any more med changes.

I know it is only one night in the hospital. Seems like nothing compared to brain surgery. But I am still stressed. I not only have to think about myself and Sophie but there is also Elsa and Charlie. I am also anxious to see what her EEG is going to look like. Is it too much to hope for a clean EEG? She has never had a clean EEG. They were always constantly chaotic. I do not even know if it is possible to have a clean EEG after getting almost half her brain removed.

By the way, if anyone in the area wants to come by and say hi, give us a call on our cellphones.

Tuesday, October 13, 2009

Pumpkin Patch...

It was a gorgeous day and a spur of the moment decision. I am so glad we went.

Sophie and Elsa both had swim lessons that morning. Haley had dance practice. Afterwards, we all headed over to the toy store to pick out some birthday presents for Sophie and out to lunch. Once we got home, Sophie was unbearable. Moody, crabby, clingy, mischievous...just exhausting. We were already exhausted. It would have been nice to just come home and chill out for a few minutes. But with Sophie, she is always on the go. So we loaded all the kids up in the car and headed off to the local pumpkin patch. And we had a blast. For the first time, Sophie was...hmmm trying to find the right word...manageable. She was not doing her normal out of control behavior things like rolling around on the ground or grabbing at strangers or trying to stick her fingers in other kid's mouths. By the way, gotta love the chewy tube.

We have moments like this...where Sophie is manageable. They are few and far between. But when we get them...ahhhhh...I just soak them up.


Please share any thoughts on whether to get the H1N1 vaccine and whether it matters if it is the nasal mist or shot. Thanks.

Sunday, October 11, 2009

Happy 4th Birthday...

Four years ago today, at 1:13pm, my sweet Charlotte Sophia was born. She was named Charlotte after Brandon's father. I was due on his birthday...what are the odds??? She was nicknamed Sophie by her big sister, Haley, and the name has stuck ever since.

It has been an incredible four years. It has had more twist and turns than I ever could have imagined.

She is an amazing little girl. With more strength and determination than I could ever muster up. Trust me...she has tested it out on me many times and won!!!

I love her with all of my heart. Her smile lights up my world. Her meltdowns crush me.

It is hard parenting a special needs child. Harder than I could ever imagine. But the rewards are greater than I could have ever dreamt of.

She continues to make strides developmentally. She gallops everywhere she goes. So adorable. She could only be going 5 feet but she will gallop to get there. It's fun for her. Something new.

Her new words are "air conditioner" and "watching you". After her surgery, sudden noises would scare her. The sound of the air conditioner coming on or the toilet flushing or the very faint beep at the end of the cycle on the washer or the automatic ice machine in the refrigerator. When she hears these noises, she gets a panic look on her face and jumps into the closest lap. It is getting better, as she is starting to understand what these noises are.

She will repeat a lot of words you ask her to except "I want" or "more ____". I will start going through the list of words she knows and she will repeat them. Does not hesitate. And then I ask her to say "I want". Complete silence. Does not even attempt to say it. I will even try to break it down by asking her to repeat just "I" or "want" by itself...refuses. But she has spontaneously put two separate words together. She does say two word combos like "air conditioner" or "watching you" or "thank you" or "all done". But these words are always said together. So what I am referring to is two separate words that make sense but not something I always say together. Like "mommy happy". I have no idea where she got that from. Just said it to me one day. She also said "I good" after getting in trouble at school one day. These are HUGE breakthroughs. I am so proud of her. I have no doubt that her language will continue to get stronger with time.

I love you my sweet baby girl. Happy 4th Birthday.

Tuesday, October 06, 2009

Charles Henry Coleman, The Original

Charles Henry Coleman II, turned 3 months old today. This is also the birthday of my (Brandon) father who passed away on September 4, 2001. He has been gone for over 8 years, which was 24 years longer than was expected. Shortly after my brother and I were born, my father was told that he had developed a rare form of cancer for his age or any age and that the survival rate was very low. I think often, not necessarily about the sadness of missing him (although that feeling will always be present) but rather about how different my life would have been if he wouldn't have fought and survived...what it would have been like without being raised by the greatest man I ever knew and will ever know. I never talk about him, with anyone really. As I just wrote that, I am not sure why. This year I didn't realize that I forgot about the anniversary of his passing until the day after...and I think he would have wanted it that way. He would have wanted us to remember all of the good years, which is what he told us when we sat by his side a month before he passed away. He told us that he was so blessed for the "extra" years he gained.

I started this post above yesterday and still can't think of what to say. I read father's day cards that I wrote, a paper from 5th grade on who I most admire, letters to him when I was away at 8th grade camp, and some poem I wrote him with what appears to be a calligraphy pen and flower decals (is it possible that I am gay?...not that there is anything wrong with that). Although it was good reflection and tears, it did not lead to any inspiration in what to write. Or it did and I still choose to keep those feelings to myself.

So, I will keep it short. I can see my father already in Charlie. He is the perfect completion to the family. Charlie, you have a big name to live up to and I can't wait to tell you all about him. Love you dad.


Monday, October 05, 2009

Trevor's Hope

I can't quite find the words right now. I am emotionally drained. But if you are following my story then I don't need to tell you how big of a day it is tomorrow for Trevy and his family.

Trevy is in Detroit. He is having the two-part brain surgery.

Please keep him and his family in your thoughts and prayers.