So the story begins...

I have been flooded with raw emotions lately. So much has happened in the month of May over the years. So much is happening now. And it is consuming me. Flashbacks of the past are haunting me. Flashbacks of seizures and surgeries...all the pain and suffering she has been through over the years. I cannot stop thinking about it. I am struggling. I am fighting back the tears. I am overwhelmed with guilt. I want to go back in time and fight harder (for so many different things on so many different levels) because I have learned from my mistakes. But, with everything in life, it is not until you live through it that you know better. But because it was my child suffering, I cannot help but blame myself.

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.

To be...

So free. So innocent. That you would start dancing to your favorite song* the second you hear it. No matter where you are at or who is watching.



*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.

EAT

About 2 weeks ago, Sophie started Equine-Assisted Therapy. We almost did not get in. She was at the top of the wait list and we got a spot at the very last minute. But only for the first session which is 7 weeks long.

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...

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.

New insurance...

Means new headaches. And trust me...I am very grateful that I have insurance. I still have the insurance statements rolling in from Sophie's brain surgery and I am very fortunate to NOT have to pay all the charges STILL going through.

Our new insurance covers therapy. Sophie's physical therapy went through just fine. But her speech therapy was rejected with the following note...

Charges for speech therapy are covered only when the speech therapy is expected to restore speech function or correct a speech impairment resulting from non-chronic conditions, acute illnesses and injuries, or gross anatomical defect present at birth. Based on the information provided, this charge is for speech therapy which does not meet this coverage requirement.

I have put in one phone call so far with no answers. I am still planning on making a few more later this afternoon. But just wondering if anyone else has gone through this. I am not sure if epilepsy or brain surgery falls within the above category.

Great Wolf Lodge...

Last weekend, we packed up the whole family and drove almost 4 hours to Great Wolf Lodge in Kansas City. Well, I guess it wasn't the whole family. We left Charlie with my parents (thanks mom and dad) and took along Grandma Debbie (actually, she took us). We met up with a bunch of aunts, uncles and cousins. I am lucky to have married into such a large, wonderful and super-loving extended family.

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.

(Jody, Me, Elsa, Kylie, Brandon, Sophie and Matt)




(Sophie giving one of her famous smash my face into you hugs.)


Thank you Debbie for this wonderful and memorable vacation!!!
I needed this...a break from reality...a time to just focus on the family...I had SO MUCH fun.

Snow Day...

Thank GOD for Grandma Debbie. What would I do without her?!?! Here I am sitting in my nice, warm, cozy house drinking my morning (finally) cup of coffee and she is outside with the bundled up* girls...pulling them around on a sled and shoveling snow.

I hate the cold. Hate it. And I love my girls and all but I just draw the line there. The few minutes I was out there was enough for me. School was called off today. We got 4 inches. Probably does seem like much in other parts of the country (I know because I use to live in Connecticut).

So I am very grateful that Grandma Debbie was here because the girls had a blast (Charlie is sleeping) and I captured some beautiful pictures.

* Thanks Erin for leaving all your boy's snow gear behind when you moved to San Deigo!!! The snow suit fit Sophie perfectly and both the girls were able to fit into a pair of boots.

Charlie, Charlie...

He's our man.
If he can't do it, no one can.

That's a little chant we say sometimes. Except, Sophie likes the version that ends in "...we'll throw him in a garbage can".

And he is literally our little man. Just check out these pictures...

On the very day he was born, Brandon nicknamed him Button (after Benjamin Button). Especially when he had a little wrinkled forehead. Everyone that meets him, thinks he looks like a little man. I agree. His name fits him perfectly.

Charlie is 7 months old today. He is babbling (says dadadadada), army crawling all over the place, pulling to a high kneel, transitioning to the sitting position, working on perfecting the pincer grasp, eating soft regular foods and likes to dance. He loves to play with the Little People Happy Sounds Home for long periods of time (he likes to open and close the refrigerator door and toilet lid). He is much amused by his sisters and loves to be in the mix of it. He is a great baby. Very laid back and happy.

And he had his first (and hopefully last) EEG on Wednesday. He was freaking me out with some crazy head bobbing. It started a little over a week ago. And he was doing it consistently every day and various times throughout the day. This was the same age Sophie started with her head drops. Except I didn't think they were anything until she had her first jackknife seizure 3 weeks later.

I tried to ignore the odd movements he was making. Because they were more like head bobs rather than head drops. But my heart just couldn't take it anymore. So I called Sophie's neuro on Tuesday and they got us in the next day! He had a one hour EEG and then we met with the neuro immediately after (we weren't suppose to have an official appt for another week but his other patient didn't show up). He looked over the EEG and said it was NORMAL!!! He did a full exam and everything looked great. I know that is a lot to go through for some piece of mind but it was definitely worth it. Because I was driving myself nuts.

Here are some random pictures over the past couple of months...