Ashe Background

Ashe Background

Friday, February 26, 2010

Lexie's Two Months Old

Last Tuesday, Lexie turned two months old!!! Yesterday we made our way down to Wilford Hall for her appointment with the neurologist and her 2 month baby check up. When I do think about it, it does feel like she has only been with us two months but dealing with everything else makes me wonder if 10 months have passed. Her neurologist went over the CT scan from before surgery and the CT scan after surgery. He showed us the areas were there is improvement and expects more improvement as the year goes on. From my opinion, you can see a difference. It is not a HUGE difference but seeing how it is so early, it is still a difference. In about a year she will have another CT scan and then we will be able to see if any more changes have occurred. I also wanted to know the area of the brain that she is missing and how it will affect her. Through science we know which parts of the brain do certain things so I wanted to know what to expect. Well, this is where it gets tricky because he said the area of the brain that is gone is apart of the motor category. However, he has said that it is not a given that there will be certain things she can/cannot do. Since the newborn brain is still growing and changing he doesn’t know if there is some re-wiring being done or if cells have implanted elsewhere. He said if an adult would have this brain injury, he could give a definite prognosis but since the brain is changing in a newborn….he is well….clueless. We like him nonetheless though. Plus, her neurosurgeon is just surprised that she is able to move all four of her extremities so we are just going to sit back and watch her. But, I should say the neurosurgeon is a strong willed pessimist and her neurologist seems like the opposite.

After that appointment we made our way down to her 2 month well baby check-up. She weighs 7lbs 12oz which means she has gained three pounds exactly since she has been born. She measured 20.6 inches long and screamed her little lungs off when she got her three shots. The doctor seemed impressed when Lexie showed her how she can pick her head up when placed on her stomach. She said that Lexie seems to be acting like a typical 2 month baby that was born premature, which brings me to a personal choice I have made. I will not be posting what things Lexie may be behind on or just not reaching on the milestone chart. We only want to look at the positive and I will happily post all of her little achievements like I have been doing with Ethan and Gracie.

Finally, I know many of our friends and family worry on how we are doing and I know a few are just waiting for us to lose it. But, to be honest we are doing better than expected. We know things could be much worse and it now seems quite normal to us. We never regret giving her the life she so much deserves and despite some comments, she does and will continue to live a happy life. We don’t feel the burden or resentment that we were afraid of. Don’t get me wrong, I still think hydrocephalus is one of the most horrible words I have ever heard in my life but if it comes with Lexie, we will take it. I really don’t even notice her shunt when I look at her. I know some mothers of special children don’t like it when people stare at their little ones but I don’t mind it one bit. I feel that the longer they stare at her and her beautiful face they will see how much she is loved and how much love she brings to our family.

Wednesday, February 24, 2010

He Said, She Said

Both of the kids were coloring when this conversation took place:
Ethan: Gracie, am I a good brother or a mean brother?
Gracie: You Ethan.
Ethan: I know that but am I a good brother or a mean brother?
Gracie: Uughhh, you good brother!
Ethan: Thanks! I knew it.

Whenever Gracie starts to get on her brothers nerves, he always tells her "Your freaking me out Gracie. You are freaking me out".

We were playing outside and Gracie went to sit on one of the rocking chairs. Ethan hightails it over there, sits in the other one and says "It has been a really long day, huh Gracie. Let's rest"

When Ethan's Grandfather was visiting, he asked Ethan if he was a tough guy and Ethan said "Yes". Then he asked him who was the toughest guy in our house and Ethan replied with "Mom"!

After bath one night, Ethan was trying to explain to me how he wanted his hair cut.
Ethan: I want a mohawk like the Black Eyed Peas.
Mom: Like WHO?
Ethan: The Black Eyed Peas that sing It's going to be a good night
Mom: When did you see all this?
Ethan: Dad showed me on You Tube!

One of Eric's favorite shows is COPS and he is often reminded in front of the kids that it is inappropriate for them to watch. After I left the house one night, Ethan turns to his dad and says "Dad, Mom went to Wal-mart so we can watch COPS now". We are going to need to discuss doing whats right regardless if mom is present or not.

Tuesday, February 23, 2010

She's so cute......

.....I could just eat her up!

Monday, February 22, 2010

Tummy Time

Lexie's Therapist, Cheri has been putting her on her tummy and has been impressed with how much she moves her head. We have to do it before she eats though because that is when she is the most active. Unfortunately she doesn't like to wait to eat so she gets a little grumpy.

Thursday, February 18, 2010

Welcome to Holland

"Welcome to Holland"

By Emily Perl Kingsley, 1987. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Thursday, February 11, 2010

Saturday, February 06, 2010

Tid Bits

Lexie likes to sleep on her left side.
I often find her rolling her body over to lay on her left side.
She is vocal and when awake, she is either grunting or cooing.
She has a raspberry birthmark/spot on the tip of her nose.
The only time she uses her lungs is at night. Rarely cries during the day.
When naked, she reminds us of a frog laying on its back.
Doesn't mind tummy time and will even move her legs back and forth.
Seems to sleep better during the day when it is loud than at night.
But once asleep she only wakes up once a night.
She has dark hair and it is already looking wild and out of control.
She brings us more joy and happiness than we ever imagined.