The little things...

Well, maybe they aren't so little if you had almost HALF OF YOUR BRAIN removed.

But here is my attempt to show you all the amazing things that Sophie can do now. Starting with something as seemingly simple as putting on her own backpack. Though, she does make it look easy...don't ya think?

Make an on-line slideshow at www.OneTrueMedia.com

Another blood draw...

I hate the night before Sophie has to get her blood drawn. Because I know what I have to do the moment she wakes up...get her dressed and out the door before she starts demanding food. Then the moment she sees the chair, I have to try my hardest to keep her calm. Then the moment from when they start checking out her veins, I have to use every muscle in my body to keep her screaming, fighting, thrashing body still enough so they can draw her blood. All the while, trying to keep my emotions in check because I am heartbroken in the inside seeing the tears just pour out of her eyes and the snot running down her face. Because this is how much she HATES getting her blood drawn.


But NOT today.


Today was different.


Today was blogworthy.


Today started off as usual. I told her she had to go bye-bye with mommy. I didn't tell her where we were going. No need to unless she asked. And she was just happy to be going somewhere. So we pulled into the hospital parking lot. She was excited to get out of her carseat. As we are walking down the hall, she seems to recognize the place. She said to me "we going to see the doctor". I said "yes" which actually did not turn out to be a lie (this is the same building her neuro is in which we ended up running into). We got to the outpatient laboratory and I signed us in. She said "where's the doctor". I said "we have to wait until they call our name". So they called us back and as I was giving them our insurance information, she recognized the chair. She looked at me with the saddest eyes and said "I get shot". I said "yes you are...I am so sorry baby girl". So as we walk toward the chair, she hesitates. Her face is full of worry. I pick her up and tell her it is going to be okay. She sits on my lap and I put my arms around her. They take her arm and tie the band around it. She is remaining calm. As they stick her with the needle, she screams out and flinches. But no tears and she is calm. I tell her to sit really still so they can finish quickly. And she does. She is sitting there watching the entire thing. She says to me "all done". I say "not yet, there is one more vial to go after this (they are collecting four)". They switch out to the last vial and she says "band-aid". I tell her "yes they will give you a band-aid". They finish and she is okay...a little hesitant but still very calm. She picks out a sucker and we are on our way out.


I tell her how proud I am of her.


And she says "I brave".

Awe-inspiring moment...

A year ago, Sophie could barely talk. And, if it was not for the fact that she had almost half of her brain removed, she most likely would not be talking today. Her days would most likely be filled with seizures and her regression would be more evident.

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.

An irresistible sharing moment

Here is one of Sophie's latest miracle moments...

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.

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.

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.

Turning the corner...

...And there is a big wide open field. No wall. Sophie's behavioral issues are getting better and we have seen a spurt in her development. Especially this weekend.

So as the weekend unfolded and the blogworthy news kept building, I knew I just had to take the time to sit down and type it out...as quickly as possible because the clock just ticks way too fast during the day.

It all started Saturday morning. I was watching Sophie from the sidelines in her second swim lesson. The instructor, Sara, put a floating device around Sophie's waist and got her into the water. As Sara was holding Sophie, she told her to hold on to the edge of the pool and then she let go of her. And she held on!!! Just like that. She understood. In that moment, she looked so old. So...dare I say...typical. Just a 3 year old, holding on to the edge of the pool, chilling out. By the way, I will definitely remember my camera next week.

But it didn't stop there. She told Sophie to close her eyes. She did. Squeezed them so tightly together...too cute. She told Sophie to put her nose in the water. She did. She told Sophie to kick her legs. She did.

I was so proud of her that I had to fight back the tears!!!

Then came dinner time. Brandon went to the baseball game so it was just me, Sophie, Elsa, Charlie and Grandma Debbie (aka NaNaw). We decided to be brave and go out to dinner. Taking Elsa and Charlie...easy. But when you add Sophie to the mix...well nothing short of EXHAUSTING. But we were up for the challenge.

And Sophie did great. The I'm so proud, I could cry moment was when she dipped a piece of fish in tartar sauce. First of all, she requested dip by saying "dip, dip, dip". She learned that from Elsa. Elsa LOVES dip and will eat almost anything if you dip it in something. But it wasn't the requesting as much as the action. It was such a controlled and purposeful movement. She delicately dipped the edge of a piece of fish and then popped it into her mouth. In that moment, she looked so...typical (I don't like using that word but I don't know how else to describe it). Not that she looks so typical to the outside world...sitting in a highchair that looks way too small for her while obsessively blowing raspberries in the air and of course her very cute do*.

*Once, a waitress took one look at Sophie and made the comment...it looks like someone got a hold of the scissors.

There is more...

Late Sunday morning, Sophie said "dough dough" out of the blue. So I said, if you want to get a doughnut, you have to put your shoes on**. Getting a doughnut is a treat in our house. Occasionally, we will take the kids to the doughnut shop and go to the park. So she walked out of the family room, through the kitchen and grabbed a shoe out of the back closet and brought it to me. Usually, Sophie gets distracted in these situations and never quite makes it to where she initially plans on going. So for her to make it somewhere AND come back is huge. Most of the time, I continuously verbally redirect her or hold her hand in order to get her to follow through. And half the time, this doesn't even work because she will have a meltdown in the midst of it all. This time, there was no redirecting her since I really did not feel like taking her...it was raining outside and she just finished eating a big breakfast. But I was too proud of her to not follow through. Well...actually...Brandon took both her and Elsa.

**She hates wearing her shoes. You can't blame her. Who wants to wear hard plastic orthotics all day long. Just not comfy. But necessary.

There were more of these moments. I just can't think right now. All in all, it was a refreshing weekend. Something I have been longing for. And it could not have come at a better time. With all that was going on with Julia this weekend. I hope this good news gives this family hope. That Julia's surgery will be a success. That her parents will soon be blogging about their I'm so proud, I could cry moments. Please keep this family in your thoughts as Julia is in her last few moments of surgery.

Nothing but love, hugs and warm thoughts sent to you...sweet Julia.