Thursday, June 24, 2010

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 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.

Thursday, June 17, 2010

Survey says...

No change. EEG looks the same as it did 6 months ago. But it is actually worse than what I thought it was*. After the neurologist explained the findings, I was surprised to hear how much spiking she was having. So she went back and compared this one to the last one. They look the same. She has some spiking from the left central region when she is awake. She may go 30 minutes with nothing and then a few spikes. But the spiking is almost constant when she is asleep.

*I was under the impression she was only having rare, intermittent spiking.

Wednesday, June 16, 2010

A Nice Surprise

The EEG hookup went AMAZINGLY well. Not one tear shed!!! I am not sure how that is possible. Sophie has had over a dozen EEGs (I have lost count) and she has NEVER done that well. Not even close. The one she had six months ago, she almost vomited from crying so hard. This is a true sign of her development. We were able to talk her through it and reason with her.

She sat on Brandon's lap while holding her baby dolls*. We explained everything to her that was about to happen. We let her touch and feel all the things they were going to use on her. She kept saying "hurt" in the saddest voice. But we kept reassuring her that it would not. There were several times where she almost lost it but we were able to calm her down before that happened. I think it was also very helpful that she was simultaneously doing everything to her baby dolls that they were doing to her. Maybe she felt in control of the situation. I wish they sold EEG play kits (kind of like a doctor's kit).

Once we got back to her room, she kept wanting to leave and did not want to wear the backpack. So we resorted to letting her munch on all her favorite snacks since she was not interested in ANY of the distractions I brought. Finally, we put in a CD her teacher from school gave her. That got her excited. It is such a cute CD and she immediately recognized the songs. She knew the movements and even sang along to some of the words to a few of the songs.

She also LOVED when the doctors came in to check her out. She sat so still as they examined her. And when they (there were quite a few) would leave she would say "doctor come back". Have I told you how much she loves playing pretend with her doctor's kit at home and at is one of her favorite toys.

She then ate a great lunch and now she is sleeping peacefully with her Daddy cuddled up right next to her. Child Life just came by and is getting together some toys for us. So hopefully, between my bag of tricks and the "new" toys, she will be distracted enough.

Thank you Uncle Jake for the yummy cookies and stopping by for a visit. Thank you Grandma Debbie for also visiting and watching the little ones for us. Brandon and I were able to have a nice lunch outside at one of my favorite restaurants down the street from the hospital.

*My sweet little 2 year old Elsa ran and got her beloved Dora doll for Sophie to take to the hospital with her when she found out Sophie had to stay the night in the hospital. And we also brought along baby Chou Chou...her favorite.

Look at that sweet, innocent face just moments after being hooked up. No bright red eyes. No tear stained cheeks. Just my sweet, little angel of a girl. All that stress...worrying...knots in the stomach...sleepless night...guilt...all for nothing. Thank goodness!!!

Tuesday, June 15, 2010


That is what motivated my shopping trip today. Causing me to buy 3 bag full of goodies for Sophie. New toys, puzzles, DVDs and her favorite snacks are what filled those bags.

Because those bright red, tear-filled eyes are already haunting me. They are already breaking my heart.

Tomorrow, she goes in for a 24 to 48 hour EEG. Most likely 24 hours but they threw in the 48 hours for "just in case". She HATES getting the leads glued to her head. HATES it. HATES it. HATES it. It is pure torture for her. You should see the fit she throws for me when I want to brush her hair. Her short little bob cut with no tangles hair. She is very sensitive to people* messing with her you can only imagine given her history. Because I still flinch when her mouth comes close to my arm in remembrance of her biting sprees. So I can only imagine the nightmares that must flash through her mind. They still flash through mine.

We are going in because she had been doing some "odd movements" that look eerily familiar. We upped her medication twice and things are looking much better. But we still have to know what is going on.

* Except for her 8 year old cousin Colin. In which, she would do ANYTHING for him...brush her teeth, lay still during diaper changes, brush her hair, take her medicine, etc. She absolutely adores everything and anything he does. He is the coolest person in the world to her. Colin can you please hop on a plane and be here by 8:30am tomorrow?

Thursday, June 10, 2010

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 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.