"Adventures, I used to call them. I used to think that they were things the wonderful folk of the stories went out and looked for, because they wanted them, because they were exciting and life was a bit dull...But that's not the way of it with the tales that really mattered, or the ones that stay in the mind. Folk seem to have just landed in them, usually...I expect they had a lot of chances, like us, of turning back, only they didn't. And if they had, we shouldn't know, because they'd have been forgotten."

-Samwise Gamgee, The Lord of the Rings

Saturday, May 28, 2011

Picture post

Not much to say, but I have a new phone and Alexander downloaded a cool FX camera on it for me. So thats been fun. I have cute video's too from it but blogger is being a pain in the butt and won't let me upload them.


Eating her first s'more! Actually she took one bite, then took out the chocolate and ate that. LOL!


Hanging out in the yard, eating campfire hotdogs. :)





Watching the ducks with daddy


Her hair is to her shoulders now! I put a couple braids in, it was cute.... this girl has some majorly thick hair!


Eating ice cream after a long afternoon outside. :)


We attended a deployment ceremony.


Alina testing out some big wheels.


Taken by Alexander.


Riding with big brother.


Playing with friends


Enjoying the love of a big brother.


Beautiful day!


Oh Anthony


Watering flowers


The boys and their dog


My lovies



Friday, May 27, 2011

MRI news

Alina had her MRI last week. We decided to go ahead with it to know where the damage is and to get answers to some questions that were in her medical history that nobody really knew the answers to. What we found out was that she has damage to the white matter of her brain, which is likely due to lack of oxygen at birth, and because of prematurity. Alina was born at 30wks and was quite small. This is the best explanation for what the damage to her brain is called.

Periventricular leukomalacia is a long, difficult-to-pronounce couple of words that describe an injury to the brain that most often affects babies who are born prematurely -- although infants born at term may acquire this as well. Breaking the words down into their basic parts gives a little insight into this diagnosis. The ventricles are normal spaces within the brain that are filled with fluid. "Peri" means around. So, the first word describes a location, namely the area around the lateral ventricles, which are the largest fluid filled spaces of the brain. "Leuko" means white, and "malacia" means soft. Therefore, periventricular leukomalacia (PVL) refers to softening of the white matter of the brain located next to the lateral ventricles.

This softening represents injury to the brain tissue, usually due to lack of oxygen or blood flow to this area of the brain. This poor blood flow may occur prior to delivery, during delivery, or after delivery. Determining when exactly the lack of blood flow occurred is usually impossible. However, the bleeding within the ventricles, which may occur in babies born very prematurely, clearly puts the area around the ventricles at risk for PVL. Unfortunately, there is no effective treatment for PVL. Therefore, most research is directed toward prevention. But even in this arena, there are still no absolutely effective measures to prevent PVL other than preventing premature births.

The periventricular area of the brain primarily contains fibers that control motor functions although there are certainly other functions that reside in this section as well. Therefore, children who develop PVL are at high risk for developmental delays and motor difficulties. PVL remains a major factor in causing cerebral palsy. However, it is impossible to predict what a child will and won't be able to do based upon the extent of PVL. This is why careful developmental follow-up of these children is so crucial. Children with PVL have different outcomes and manifest their delays at different times and with different severity.


So there you have it, Alina's brain is missing some white matter, otherwise its developing and growing normally. And we think she is perfect just the way she is. :)

Tuesday, May 24, 2011

Video

Sorry its sideways.... I took this with my new phone and I know now that it doesn't orientate.... lol. Techie I am NOT!

Friday, May 20, 2011

Playground anxiety

Anyone who has a handicapped child can relate to this.... you pull up to a playground and its full of children and their parents. You take a deep breath and get the kids out of the car, then walk up to the playground. Parents look over, most stare. Little kids point or ask 'Why is she walking so funny?' or if she's wearing shorts and they can see her braces, they ask 'What ARE those things on her legs?'

And I admit, sometimes I hesitate. Did I make the right decision to bring the kids when its so busy? Will a someone make fun of her? Will a parent get ticked off if she's blocking the stairs as she slowly makes her way up? What if she falls and gets hurt? Will I be scoffed at for taking a handicapped child to a park and letting her go?

But Alina? She NEVER hesitates. She NEVER questions herself. She NEVER notices anyone staring at her. She jumps out of the car, sights set on the tallest slide and makes it her mission to climb to the top and slide down that slide over and over again, even if it takes her ten times longer to get up there than it does other kids. She doesn't know she's different. She confidently walks up to other kids and says hi. She smiles and laughs when other kids do, and every.single.time. she is included in the games, even if her big old mom has to help her walk around to participate. Little kids don't care, they are the model of inclusion. They don't care if she doesn't speak clearly, or walks funny, or has braces on her legs. Neither does she.

Sunday, May 15, 2011

New AFO's!

Alina's first pair of AFO's were getting too small. We'd had them built up already and adjusted a few times but they just needed to be replaced. This time she chose an orange/yellow color. The most exciting part is they now have a 'hinge' in them so she has ankle movement! She's pretty wobbly on them when walking alone, but overall her gait has improved a ton with the ankle movement. She's able to bend down easier because she can use her ankle to squat down, and she can push off her toe when taking steps.

Princess chalky butt!


Still have the de-rotational bands, this time trying double wrap around the left side, which is the side that really turns in.


Does this girl love her daddy or what? :)

Monday, May 9, 2011

Thunderstorms and morning light

Remember being scared as a kid? Waking up to thunder shaking the house and lightening flashing like a paparazzi mob outside? Or maybe a scary dream tore you from your slumber. Possibly waking up in the middle of the night ill, calling out to your mom. Calling out to your mom who you knew would race into your room and hold you, calm you, help you. That feeling of no matter what happened in the dark of the night, mom or dad would be there to comfort you. It was like morning light breaking through the darkness.

I often think about the kids still in orphanages around the world. Who comforts them when they wake from a bad dream? Who holds them if they are afraid of thunder and lightening? What happens if they are ill at night? Who is there to comfort them? They may have a nanny or a caretaker who is there overnight.... but does that compare to a mom and a dad? Does a caretaker take the time to comfort every child at every need? Its nearly impossible, and doesn't happen.

Children, regardless of age, race, disability or where they are in the world, NEED homes. They NEED a mom and a dad to care for them. They NEED to know that no matter what, someone will be there for them, night or day, scared, hurt, sad, angry or happy.

As I type this, a little 4yr old girl is sitting on my lap. Six months ago this girl wouldn't cry when hurt, she didn't show emotion, she kept herself guarded. But just today she spent 1/2 hour throwing a tissy because her brother smacked her in the arm when she was in his face. And she has a scab on her elbow that she's been nursing for a good four days, making sure to show it to everyone who looks at her, and some who don't. She seeks us out now when hurt, sad, angry or scared. She brings her blanket to me during the day saying 'mama wets nuggoo' (mama lets snuggle). She asked to be picked up and held, she knows what it feels like to be loved. Fully, unconditionally, and forever. She's starting to realize that comfort is something she wants.

Thats after only six months. 147,000,000 orphans wait in this world for a family. You don't have to be rich, have a big house, drive a fancy SUV, or be perfect. You don't have to be thin and have great hair. You don't have to be anything spectacular! Being someone's comfort, someone's stability, someone's MOM.... that makes you spectactular. Providing love, a home, a family. That is what kids want. Regardless of age, race, disability, or where they are in the world. A family.

God doesn't call the equipped, he equips the called. Are you listening?