So proud of myself...

(Note: I actually wrote this post on Tuesday night but I did not want to publish it until Brandon got back in town.)

It was right before bedtime and I was trying to get Sophie to make a beeline up the steps. As I yelled out for Elsa and Charlie to come join us, Elsa yells back "uh oh mommy...I made a mess".

I knew it was going to be a long day. And in the moment that I woke up that morning...I made a decision that I would try with all my might to hold it together.

It started off as a fairly typical day. But it was not a typical evening. I was on my own, as Brandon is out of town for the week.

So after dinner, I round up the kids and get them in the bath (which is what Brandon normally does). Things are going amazingly well. I get Elsa out of the bath, lotion her up, put on her PJs and blow dry her hair. I do the same for Charlie. As I got Sophie out of the bath, Elsa and Charlie ran out of the room to go play. I do the same for Sophie as I did for Elsa. Usually, Sophie does NOT like the hair dryer and runs off after a few seconds. But not tonight. She sat on the bathroom counter and let me dry every last strand of hair. In the meantime, my head is in la la land as I am thinking about how proud I am of myself at how well I am doing on my own...without Brandon here...and things are going pretty damn smoothly.

Let me just say...Sophie's behavioral issues can and do physically and emotionally drain every last ounce of energy and patience that I have on a daily basis. And it is fairly typical for any stay-at-home-mom to count down the seconds until reinforcement arrives...right?!?! Which is what I usually do. And the minute Brandon walks through the door, I feel like everything is going to be okay. Like I made it through another day even though the day isn't over yet. Like there is NO WAY I could have lasted a second longer without breaking down (though I have to admit there are the days where chaos ensues and Brandon walks through the door to find me a heaping mess).

So, back to the "uh-oh". As I round the corner, I find Elsa and Charlie standing in the middle of this...

Which I had just steam mopped earlier that day!!!

I drop to the ground and just start bawling. I canNOT deal with this right now. I WAS in the home stretch. I WAS going to get all the kids upstairs and shut the gate. Thirty minutes of play time and then I would sneak downstairs to get toothbrushes and Sophie's meds. And then they would all be in bed before the end of the hour. Nope...not now. I pull it together. I strip off Elsa's and Charlie's pajamas and put them back in the bathtub. Which means Sophie is now ripping off her pajamas because there is no way she was going to be excluded (she will try to take a bath or shower, at minimum, five times a day). UGH!!! But...somehow...someway...they are all sleeping at this very moment.

(Update: And I survived the week. Thanks to the endless amount of patience and love from Grandma Debbie!!!)

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.

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.

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.

Happy Birthday NaNaw...

Sophie decided to give NaNaw (Grandma Debbie) the best birthday present ever. If you know NaNaw, you would know how much she loves and cares about Sophie. They have a special bond.

While NaNaw was playing with Sophie in her toy closet, Sophie pointed to the top shelf and said animal. She was pointing to her toy farmhouse with the animals inside. I was in the other room and heard it clear as day. Sophie just said her first 3 syllable word!!! She barely even says a 2 syllable word. Plus, she has never even attempted to say animal before and she used the word appropriately.

When Brandon got home from work, we were telling him the story and she repeated it again for him...several times. I honestly don't know if I would have believed it if I didn't hear it myself. It wasn't the clearest sound pronunciation but it was close.

Sophie was in a goofy mood tonight. I love it when she is like that. Full of laughter and giggles. She has become quite the mischievous one. Brandon showed her how to get water out of the water dispenser on the refrigerator door. She has seen us do this a million times but has never attempted to do it herself. As soon as I saw it, I thought BIG MISTAKE. So a few seconds later, she takes her cup over, fills it up with water (let me remind you that she is in a VERY GOOFY mood) and executes it perfectly. But as she is walking away, giggling her little butt off and holding the cup up in the air with only one hand, she is spilling it everywhere. And all we can do is laugh. She gets it. She is learning. She is happy.

And this is only one of many stories tonight. She was up to many crazy antics...giggling and laughing the entire time.

By the way, pre-surgery she would have EXTREME meltdowns if she spilt just a drop of water on her when she was drinking out of a cup or if she dropped a piece of food on the ground. And I seriously have no idea why she was like that. I tried my hardest to make it seem like it was no big deal. To the point where I would drop things and laugh just to show her it was okay. Nothing worked. She could not stand the idea of anything spilling.

So, now she is the complete opposite. I will take giggles over meltdowns any day.

Happy Birthday NaNaw!!! Thanks for spending the day with us.

These moments...

(Note: I wrote this on Saturday evening but never got around to posting it until today so "today" and "tonight" is referring to Saturday.)

Are the ones I think I will remember forever. Sometimes I feel like these moments are not real. That this is not my life. Because I can't believe this day is here. Life feels so normal. No...much better than normal. I am on a high. Brandon looked at me tonight with happiness radiating from him and said I love our new life. Haley is with us today. Our lives feel so complete. I never want this feeling to end. Pure joy.

Our bedtime routine for our youngest girls has always been the same. But tonight it felt so different. It felt extra special...seeing Sophie's eyes light up like I have never seen them before. A smile on her face that was so pure. Part of our routine is letting Sophie and Elsa dance around naked after bath time (but only for a short bit to avoid the peepee messes and then we gradually get them in their diapers and PJs).

Brandon pulls them out of the tub and wraps a towel around them and hands them off to me. Where I snuggle with them in bed. Then he turns on the music...loud. Big smiles appear on their faces and you can see the excitement.

Tonight, Brandon swooped Sophie off the bed. Her eyes sparkled as he twirled her around. I felt like it was happening in slow motion as I watched them dance and bounce around.

I am amazed that JUST 2 weeks ago, Sophie was 1 day post-op from major brain surgery. That today is 2 weeks of seizure freedom. That today she is up and walking around. That today she is saying more words than she was before surgery. That 2 weeks ago marks a new beginning for Sophie...a new world has opened up to her. A world that is much clearer.

Baby feet...

After reading this post, it reminded me of this picture of Sophie when she was 10 months old.


I love baby feet. Love them. Love them. Love them. A bit obsessed. They are just too darn cute. So here are a few extra pics...

In the hospital (less than 24 hours old)...

Check out these chunky ACTH legs (10 months old)...

Taking a nap (23 months old)...

Practicing to be a contortionist...

These pictures were actually taken on April 1st...hence the warmer clothes. We have had really warm weather lately.

Banzel - Day 3...

It has been 3 days on Banzel at 100mg per day. We haven't seen any results but we weren't expecting to see any at such a low dose. Tomorrow we increase the dose to 100mg twice a day. The straw method of taking the medication is working...such a relief. It is so easy to get her to take her medicine. I am in LOVE with the straw method. I actually tried to get her to take her omegas that way but they were too big to fit in the straw. I can't believe I just found out about it. It would have made things much easier in the past.

I am so hopeful that Banzel will be the "it" drug for Sophie. I haven't been this hopeful in such a long time. It is scary having my hopes up so high at the moment. But at the same time I find myself having a renewed sense of peace. Peace that no matter what happens, Sophie is going to be okay. That she is happy. That is what matters the most. That her smiles consume her day. My day. Her smiles far outnumber her seizures. She is such a happy child. My favorite part of the day is right before bedtime for the girls. And not because it is "right before bedtime". The girls are in their PJs. Fresh out of the bath. Smelling all sweet. Teeth are brushed. They know it's bedtime but they get all giddy. There is this unspoken vibe between them. And they both start belly laughing. Sophie is doing circles around Elsa. Then she gets right into her face. Eye to eye. And they both just start laughing. Then Sophie runs off. Elsa can't take her eyes off of her. Then they start playing, more laughing and Sophie just being her goofy little self. I will have to get this on videotape and upload to the blog soon. It is just way too adorable.

Happy Valentine's Day...

Sophie had a Friendship Day party at her preschool on Thursday. It was so adorable. She was full of giggles as she couldn't figure out why Elsa was there. Elsa sat at the table waiting for her treat just like the rest of the big kids. Sophie kept looking over at her and laughing. It was so sweet.