Picture perfect...

She rode the Special Education bus.  It's not the bus I had ever envisioned her riding to her first day of kindergarten.  Well, at least not before she was born...when all my hopes and dreams for her were of those of typical parents.  And then there was a time in my life that I didn't even know if she would go to school.  So, riding the Special Education bus is...in fact...a huge milestone for her.

My dreams for her have changed.  It was a hard thing to accept.  It still is.  And it is an ever-changing dream.  Because I still don't know what her future holds.  It's not that any parent knows what the future holds for their child.  But when you have a medically complicated child, there is so much more unknown about the future.  Sophie still has daily seizures.  They are affecting her.

At least when she was seizure-free, I kind of knew where she stood and where she was going.  I knew that she would always be developmentally delayed (she did have the majority of her left hemisphere surgically removed).  But she was making tremendous gains.

We have tried a whole list of medications since her latest relapse.  Nothing is working.  Zonegran did help but the positive effects have worn off.  Her seizures are at an all time high since surgery.  

Her speech and language are surprisingly amazing.  She is incredibly social.  And, of course, the most adorable 5 year old girl.  So the combination of those three traits...well...she can pull off appearing typical at times.  And I am SO GRATEFUL for that.  Not for the fact that she can pull off appearing typical but that her speech, language and social skills are at that level.  So I am trying my hardest to enjoy these days.  The days where she is five, six and maybe even seven years old and her immature personality will still seem that of a typical child of that age.  I know I am probably pushing anything past kindergarten since I already see the "hmmm something is not quite right here" look in the eyes of her peers.  Because even though she is incredibly social it's not always appropriately social.  One of the reasons I loved preschool so much is that it was a mix of three, four and five year olds...so being immature was easier to blend in.  I hope that as she grows with the kids in her class that they will just accept her for who she is.

And even though I have accepted who she is, I still do everything I can (when I have the energy) to make sure she lives a well balanced life with just enough therapy but not too much.  It's a fine line.  And Charlie and Elsa definitely help me with that!

And so does my mother-in-law, Debbie.  I can't even begin to list the number of things that she has taught Sophie over the years in such a fun and exciting way.  They have an amazingly special bond and she has always been there for Sophie (and me!).

We are living our lives the best we can.  She tries our patience to the fullest extent almost on a daily basis.  She pushes me over the edge to where I say and do things that I regret so much that it hurts my soul.  And at other times, she can make me so proud that I cry tears of pure joy.

The first two weeks of school have been a huge adjustment...for me, for Sophie, for her teachers.  But we are all beginning to find our way.

The sweeter moments...

EACH and EVERY day I am amazed at something that Sophie does. Amazed. It fills my heart with happiness and patience. And it gets me through the more challenging moments of the day.

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.
Going...

Going...

Gone.

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.

I'm back...

It's 9:43am on Monday morning. I have exactly 1 hour and 42 minutes of freedom.

I'm sitting at Starbucks, enjoying a latte*, and kid-free! Sophie and Elsa are at preschool and my mom is watching Charlie. I decided updating my blog was more important than buying groceries**.

Monday mornings is "me" time. The only time in the entire week where I can sneak off without an agenda in mind. I'm not allowed to come home until after I pick up Elsa. So I do whatever my heart desires. And today it is this very much neglected blog.

Sorry for taking so long to update. It has been chaotic. Especially with Sophie and Elsa off for winter break. I have been overwhelmed. Things are starting to return to my new normal.

My new normal. That is what has thrown me off these last 7 months. My world has been rocked. I had a very hard time readjusting to my new life. Although it is a better life, change is hard for me. Sophie is a COMPLETELY different person. Of course, I don't miss the seizures. But, at times, I miss my old Sophie. The one that I grew to love and cherish for a little over 3 1/2 years. But I have the new and improved Sophie. The one that remains seizure-free. The one that is TALKING. Actually talking. Not just labeling objects or people. But actually using words without being prompted. All kinds of words. Hundreds and hundreds of words. On a daily basis, I am amazed at the new words I hear that I have no idea how she has learned them. On top of all of that, she is consistently stringing three words together. Like "open the door" or "more snack please".

Then there was the birth of Charlie exactly one month on the day of coming home from the hospital with Sophie. No further explanation needed on how that changes the family dynamics.

So, I'm back. Ready to do a lot of updating. Starting with our last visit to Detroit. It has been a very emotional time. I will try to take you through it all. But I am in a good place right now. Meaning "right now". As I try to take each day as it comes. And the scale has finally tipped in my favor...it seems my good moments in a day are outweighing the exhausted, frustrated moments.

* I am "enjoying" a non-fat, no whip, mocha latte...trying to lose that baby weight. And, yes, I realize drinking a latte, no matter how you make it, isn't part of a diet plan. But I have to cut corners somewhere.

** Going to the grocery store is kind of a joke. Thanks to my INCREDIBLE mother-in-law. More on that later.

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.

The sweeter side...

Note: I wrote this late Sunday night and was interrupted by a screaming Elsa that I had to get back to sleep before I could publish. So "Today" refers to Sunday.

Today was a good day. Sophie and I had a moment. Where we totally connected. Where she was focused. Where she was calm. Actually, it was more than a moment...more like 15 minutes.

Elsa and Charlie were napping. Haley was on the computer. Brandon was playing hockey. Perfect setup to do some much needed one-on-one bonding time with Sophie.

Lately, it has been very hard for me to get Sophie to have some down time. She is constantly on the go. I miss cuddling with her. She was so cuddly and snuggly pre-op. Even post-op for awhile. But when the behavioral issues were kicked into high gear, the sweet cuddly Sophie disappeared. She just could not sit still.

Until today.

We snuggled in bed together...sharing a pillow...laying face to face. I asked her to point to my nose. She did. I asked her to point to your nose. She did. That is a new thing she has learned recently...the meaning of my and your. So we went through all the facial features. She not only pointed to all of them but she said them all too. My heart was beaming with joy. To have this moment. Then we had a little conversation, that went a little like this...

Sophie: Daddy?

Me: Daddy play hockey.

Sophie: Hockey.

Me: Daddy hockey.

Sophie: Hockey.

Me: Daddy hockey.

This went back and forth a few more times. We are working really hard to get her to put two words together, so sometimes we speak in very short phrases.


Sophie: Bock?

Me: Big Rock upstairs.

Bock is Big Rock Candy Mountain DVD that we usually play on a little TV we have in my room but we moved all of that upstairs into their room where Elsa was currently sleeping. This conversation also went back and forth a few more times.


Sophie: Night Night.

Me (singing my made up Night Night song): Night Night Sophie. Night Night Elsa.

Sophie: Row Row.

Me (singing Row, Row, Row Your Boat): Row, Row, Row Your Boat.

Sophie: Night Night.

Me (singing): Night, Night...

Sophie: Row Row.

Me (singing): Row, Row...

This went back and forth quite a few more times. With a HUGE smile on Sophie's face. And even a BIGGER smile on my face. See...our nighttime routine begins with reading books. Then I turn off the lights and lay in bed with Sophie and Elsa and start singing the Night Night song. Elsa, not wanting to go to sleep just yet, will immediately cut me off and starts demanding (in her cute sort of way) another song. Once I start singing another song, she immediately cuts me off again and demands another song. Usually, it goes back and forth between Night Night, Row Row and Monkey (5 Silly Monkey Swinging in the Tree). I humor her a few times and then I say "last song" which she inevitably requests Night Night and they both fall asleep. Well, this was the first time Sophie has ever played this "game" with me. She is getting "it". She is starting to understand things on a deeper level. Simply amazing!!!


Well, our bonding time ended when she started obsessively poking me in the eyes and then went on to obsessively slapping herself in the mouth with the palm of her hand with her tongue hanging out.

But it left my heart full of happiness. Her eyes would light up and she would get all excited every time she knew I understood what she was saying. I am so proud of her. And these moments are what get me through the not so proud moments I have with her. Which I will post about soon...her behavioral issues.

But in the meantime, here's a video of Sophie and Elsa being silly one night right before bedtime. Sophie keeps saying hand throughout the video because she wants to hold Elsa's hand.

Sad transition...

Since Sophie turned 3 years old in October, she had to transition out of the Missouri First Steps program and into the Early Childhood Special Eduction program. So we had to say goodbye to all of her therapist. It was a very sad week. She had 5 therapist so we scheduled it to where we only had to say goodbye to one every day the week before she turned 3. We miss them dearly. These people were such an important part of our lives for so long. Sophie started receiving therapy when she was only 9 months old. I know Sophie would not be where she is at today if it wasn't for each and every one of them. There is no way I could ever thank these people enough. They will always hold a special place in my heart. It takes an amazing person to be a therapist to a special needs child. So here they are...

Karen, Physical Therapist

Jen, Behavioral Therapist

Staci, Developmental Therapist

Erin, Speech Therapist

Olivia, Occupational Therapist (not pictured)

Best of Sophie

Here is the unedited edited version* of the video I sent to Dr. Chugani for him to present during the surgical conference.

Sophie will be one of five cases that will be discussed during the surgical conference on Monday. There are anywhere from fifteen to twenty doctors that will be present during the conference. Including Dr. Chugani, Dr. Asano (pediatric neurologist who would be performing the grid surgery), Dr. Sood (neurosurgeon who would be performing the resection) along with several other neurologist, fellows, and researchers. All of the testing performed (PET scans, MRIs and EEGs) will be presented and reviewed by the doctors for them to come up with their own recommendation. A letter will then be typed stating everything that was discussed, any further testing that needs to be done and what the consensus was. I will then receive a phone call no later than Wednesday evening with the results.

In the meantime, I am literally sick to my stomach thinking about it. There are so many moments in the day where I just want to throw up. I am so afraid. Not of the surgery but what the consensus will be. I think this surgery will be a miracle for Sophie. I never thought it would come to this. The first round of ACTH was suppose to be our miracle. But it wasn't and here we are. Praying to God that surgery is the path that lies before Sophie....that surgery will be her miracle.

I hope you enjoy the video. You will witness first hand how happy and how far Sophie has come. It is truly amazing that she has been able to do all that she has done despite having so many seizures a day.

* The actual one I sent Dr. Chugani was only 2 minutes long compared to this one that is almost 4 minutes long.

Happy 3rd Birthday!!!

Yesterday was Sophie's 3rd birthday!!! Wow...I cannot believe she is already 3!!!

Flashback 3 years ago...

It was Monday night, October 10, 2006. Brandon was sitting on the couch watching Monday night football. I was getting some things done around the house. We had just closed on our house 11 days prior. Sophie was already 3 days past due. I started getting an odd feeling in my tummy. I didn't think much of it. I had no signs of labor prior to this. Then the feeling started to get a bit stronger. So I sat on the couch next to Brandon. The feeling was now coming and going in regular intervals. This was it. I knew it. I was in labor. I was SO EXCITED. Brandon timed them...they were about 5 minutes apart but very mild. So I showered and finished packing my bag. We left for the hospital around midnight. By this time, the contractions were getting to be a bit painful. But it didn't matter. I was too happy. Already in love with my little girl who was getting ready to enter the world. I couldn't wait to meet her. I couldn't stop smiling.

I was admitted into the hospital and by 2am I had my epidural. Oh, how wonderful that epidural felt. We both fell asleep until about 6:30am. By this time, I knew people were waking up. So we started with the phone calls. At 1:13pm on October 11, 2006, Sophie was born. Labor was easy. I now knew why women could do this over again.

Thinking back upon that time brings so much joy to my heart. The excitement. The awe. Getting to hold her for the very first time. I will never forget that moment. I could relive that moment a million times over. She was my perfect little baby girl.

We named her Charlotte Sophia Coleman. Charlotte in honor of her late paternal grandfather Charlie. My actual due date was October 7th...Charlie's birthday...what are the odds??? Charlie was an absolutely wonderful and very involved father. Brandon was very close to him and is like him in many ways. I believe Charlie is Sophie's angel...watching over her...giving her the drive and determination to keep on going...to fight through every seizure...to not let it hold her back...as he fought through cancer to watch his boys grow up. We miss him ever so dearly.

Happy 3rd Birthday, Sophie!!! I love you more than words could ever describe.