Friday, January 22, 2010

Happy 2nd Birthday...

To my messy,

Rock star,






Birthday Girl, Elsa.

From the very beginning, she was always on the go. Learning at a pace that has always amazed me. She has a heart that is full of love and forgiveness. She is passionate and strong-willed. She is my helper, my snuggler, my milk addict. I love her with all of my heart.

She is so incredibly smart. She can already recite her ABCs and count to 15. She can sing the words to entire songs and has the words to certain books memorized. She knows all her colors and shapes. She can put on her own clothes, socks and shoes...the right way (she knows the tag goes in back and which shoe goes on what foot).

She is my mischievous, sly and agile girl. She loves to climb up on everything so much that I had to put safety locks on my kitchen cabinets above my counters. She gets a certain twinkle in her eye when she is about to do something wrong and loves to push the limits.

She has a bond with Sophie that is so heart-warmingly strong. She forgives Sophie quickly through all her stages of aggression. At times, they have huge belly-laughing fun moments. At other times, they cuddle up and sleep next to each other. At other times, they are beating each other up (even though Sophie is twice her size, she can hold her own).

From the moment she wakes up in the morning, she has to account for everyone in the family (Daddy work, Charlie sleeping, Sophie at school). When it is just the two of us hanging out during the day, she is the first to hear Charlie's cry when he wakes up from a nap and insists that I go get him right away. She loves to feed him his bottle and always makes sure he has a bib.

She is mostly potty-trained and INSISTS on running around naked all day long. She has a love-hate relationship with clothes. She loves to pick out what to wear but hates to wear them unless I threaten to leave her at home unless she gets dressed.

Her sippy cup of milk is her lovey. She screams for it whenever she is tired or hurt. If I let her, she could probably drink a gallon of whole milk a day. And yet, she remains my little peanut. She is so tiny that she makes Charlie look big.

She loves to help me with everything and always has to know what I am doing every second of the day. She is practically glued to me at times. I love taking her out and about with me. She makes running on errands fun. She has such a huge personality on her.

She has somehow inherited my slight OCD behavior. If she gets a drop of liquid on her clothes, they must come off immediately (maybe just another ploy to get naked) no matter where we are. She is very particular about certain things and notices the tiniest details. Like a little paper tag hanging off the edge of her new Memory game card MUST come off.

She LOVES her baby dolls and does everything with them. It is fun watching the way she interacts with them. She is so gentle and caring and loving.

She goes to preschool two mornings a week and her teachers refer to her as the other teacher. She is always concerned that everyone is taken care of and loves to clean up the toys.

Happy 2nd Birthday my dear sweet Elsa. I hope you have a wonderful day.

Friday, January 15, 2010

Post-op Detroit visit...

Note: We arrived in Detroit on Monday, November 16th.

We met with Dr. Sood on Monday. He felt around on Sophie's head and said it all looked great. The gaps that we feel are normal. I guess the bone is suppose to grow back over time. He commented on how well she seems to be doing developmentally. And in less than 5 minutes we were out the door. Never to see him again. Hopefully. But I couldn't help but feel connected to this man. The man that removed a majority of my daughter's left hemisphere. The man that held her brain in his hands. But, alas, this is his job. Not his life. And on our way we went.

I wish Tuesday could have gone as smoothly. Getting her sedated for her MRI was quite the ordeal. They stuck her twice and missed. Shot Versed up her nose which made her gag. Then stuck her two more times and missed. Took her up to pre-op area (same place she was before her brain surgery...that was emotional in itself) and then gassed her up. And finally put an IV in her wrist that worked. Needless to say, she was upset when she woke up. But she forgave us quickly and had fun getting pampered back in our hotel room.

Then was the highly anticipated appointment with Dr. Chugani on Wednesday. It was jam packed in the waiting room. Our appointment wasn't suppose to be until later that day but we (along with many others) were bumped up because he was leaving to go out of town. In the first 10 seconds of the appointment, his comment was... "Is she always this hyper?". He suggested giving it some time but thought she would ultimately have to be put on risperdal or adderall. But, overall, he was impressed with her development. He didn't have the results for the MRI because it is going to take some time to analyze. We are going to leave her medications as is for now. She is suppose to have a repeat 1 hour EEG in 6 months. But I don't think I can do that to her. There is no reason to unless we are going to try to wean a med.

Then I asked Dr. Chugani a question that is better left unanswered. Because nobody knows the answer*. They are just guesses. But I couldn't help but ask. Whether from his own past experiences, if he felt that Sophie would ever be able to live a somewhat normal life. His answer... "Independently? I don't know. But I definitely think she will be able to live in a group home."

And that got me all worked up inside. I couldn't let it go. I was crushed. And it took me months to pick up the pieces. But I did. I have moved on. And my hopes are growing once again. Because Sophie is a fighter. And I believe in her. And with every crazy twist and turn this journey has taken us on, it only gets better. And I have to believe in the moment. Especially, when I think about the past.

Because if someone told me on May 10, 2006 (the day Sophie was diagnosed with Infantile Spasms) that Sophie would someday have almost half of her brain removed and that she would be better off because of it. I would not have believed them. But it happened....on May 30, 2009. And I saw it on her most recent MRI with my own eyes. It was quite eerie. Looking at almost half of her brain missing on the MRI and then looking at her. Standing before me better than she was before. How is that possible? She is missing almost half of her BRAIN. Her BRAIN. It is hard for me to come to grips with that at times.

Okay, that was a summary of the medical portion of our trip. Now for the fun stuff...

In order to keep Sophie distracted while she couldn't eat anything after 10am on Tuesday, we took her to the Warren Community Center pool that has a huge indoor play structure and lazy river. It was only about 20 minutes away. We all had so much fun but we miscalculated how long we could actually keep her entertained in the pool. Actually, it was Brandon and me that were exhausted. I think Sophie could have kept going.

So around 1pm we got out of the pool, showered and got dress. Also, in the Center was a library. So we found some of her favorite books to read to pass some more time. Finally, we headed to the hospital.

We stayed at a casino hotel that was only a couple miles away from the hospital. Sophie had fun eating room service, taking hot showers and getting ice from the ice machine. Besides the sedation, she had a blast. She amazes me with her resilience. I only wish I could bounce back as quickly as she does. One day at a time...right? I try.

* Because there is a part of me that does believe...the part of me that wishes my faith was stronger... I feel compelled to say...He knows.

Monday, January 11, 2010

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 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.