Wednesday, August 25, 2010

A Tiny (Trivial) Tantrum

Let me preface by saying I'm trying really hard not to be a whiner. I'm trying to be grateful that we're not sitting in a hospital room. I'm trying not to be bitter about the cesspool that is daycare. Seriously, though - give my girl a break! M now has pink eye. Yup, pneumonia to back-to-back upper respiratory infections, to pink eye. Don't get me wrong all of these things are way better than shunt failures, hemorrhages, and blood infections so I'm not complaining....really. I just want her to have a week or so of health! Is that too much to ask? Tantrum over.

Monday, August 23, 2010

Final....FINALLY!




It's been a looooong time coming, but M's adoption is finally final! There was a lot involved with coordinating finalization via video conference. Mostly that the State of Louisiana doesn't allow finalizations to occur anywhere but in the courtroom of the sending agency's Parish. Thanks to our SW and Attorney well-written appeal, the judge granted an exception to our case. So, this morning, Via Skype, our case was heard, the decree was signed and M was declared an official Fenske!

Friday, August 20, 2010

And she's rolling.....

....almost! Yesterday, M got a little crazy and started doing a sort of "half-roll." Usually, you could place her in any position, no matter how bizarre, and she'd just lie there. She does not typically have the strength or coordination to get herself into or out of any position. Well, yesterday, when placed on her side, almost to her stomach, she would consistently roll herself to her back. Her therapist was absolutely thrilled and of course, she did it for Daddy several times last night. This is a HUGE accomplishment for her!

In other news, her new wheels have been approved to 80% by our primary insurance. Now we just have to wait for her MA to process the remaining, then we can get an order placed. This is the chair we've decided to go with, although not in this color. It will be a relief to finally have a chair to put her in where she doesn't flop forward, backward and side-to-side. She can be....get this....comfortable AND safe! Unfortunately, our request for an adaptive bath seat has been denied as a "convenience item." Apparently, trying to bathe a wet, soaped-up, slippery 20lb child with no tone who's unable to control her movements is merely an inconvenience. If you ask me (who happens to bathe her), it is down right dangerous. Then again, I don't have the vast educational knowledge on these things like an insurance underwriter does. Bitter? Me? No way! I digress. We still have a slim chance that MA will approve it. If they don't we'll have yet another (very large) out-of-pocket expense. Gotta love insurance companies!

Sunday, August 15, 2010

C-L-U-T-Z

This is what happens when you carry two children, a bag, and a bunch of papers while simultaneously trying to remote open the van doors in a parking lot full of holes:


Not broken - THANK GOODNESS! Just a really bad sprain.

Saturday, August 14, 2010

Prayers Needed

There is another beautiful, sweet Marissa out there who needs some prayers. This amazing little girl (and her amazing family) is preparing to embark upon a very difficult new leg of their journey with IS/Epilepsy. Please take some time this weekend to pray for them and the doctors that will be caring for her.

CLICK HERE TO READ HER STORY

Sunday, August 8, 2010

Sweet Smiles

You just have no idea how grateful we are to see these! A very short time ago, M was so trapped inside herself. Seizure control has really brought out her happiness. In other news - the last picture is my first shot at an actual hairdo. She still doesn't have much to work with, but it turned it out way cuter than I thought it was going to.



Saturday, August 7, 2010

Where did it go?

It is AUGUST! How did that happen? I have no idea where this summer (or this year, for that matter) has gone. In two short months, it will be time for us to lock ourselves down in our house and pray for a winter of good health. Yup - I know some of you are shaking your heads already; thinking "she's insane - kids NEED germs to build up their immune systems." You probably don't have a medically fragile child. You probably don't need to worry that that "little cold or 24 hour stomach bug" could be fatal to your child. Flu and RSV season is rapidly approaching and I won't lie, it frightens me. We spent 3 months in the hospital last winter (and we know what a germ factory hospitals are). Yet, M managed to not even get a single cold all season. She got her first cold in April one week after starting daycare. She was sick again in May - thanks to daycare and she had pneumonia in July.....again....daycare. Currently she has more upper respiratory crap. Luckily, none of these infections have landed her in the hospital. Winter is a frightening time for parents with medically fragile children. Please, as the season looms near, remember those with children who may not be as strong as yours. Respect them and respect their wishes. WASH YOUR HANDS and don't roll your eyes if they come at you with a bottle of hand sanitizer. Please keep your children home when they are ill. Please, if you are ill or have been ill, or have been around someone who has been ill, postpone visits to loved ones who are at high risk. I'm hoping we survive the winter with few illnesses and, dare I say, zero trips to the hospital.



In other news, I'm happy (and scared to death) to report that next month I will be changing from full-time to fill-in status at work. This means that I will likely only work 8-16 hours per week. The kids will be at home either with a family member (hopefully) or a sitter when I'm at work. NO MORE DAYCARE!!!! I have NEVER not worked full-time. I'm frightened to give up all the benefits that my job offers. I'm frightened that I won't be a great SAHM. I'm frightened that Kevin is going to feel overwhelmed with the burden of being the primary breadwinner. Financially, it is going to be beyond tight. Yet, the thought of being with my kids, who are growing up waaay too fast, and being able to go to every appointment or every field trip and have time to enjoy them is so incredibly exciting to me. The thought of being able to be there for M, to work with her more, to give her every opportunity she deserves is such a gift. E will be at 4K from 8-11:15 Mon-Thurs. That gives M and I a nice amount of time for daily therapy. I'm so looking forward to spending un-rushed time with both of my children. I saw this posted on another blog and it really describes how I feel (sorry, Honey, I know you hate poems).



I Took His Hand and Followed

Mrs. Roy L. Peifer


My dishes went unwashed today,
I didn't make the bed,
I took his hand and followed
Where his eager footsteps led.
Oh yes, we went adventuring,
My little son and I...
Exploring all the great outdoors
Beneath the summer sky
We waded in a crystal stream,
We wandered through a wood...
My kitchen wasn't swept today
But life was gay and good.
We found a cool, sun-dappled glade
And now my small son knows
How Mother Bunny hides her nest,
Where jack-in-the-pulpit grows.
We watched a robin feed her young,
We climbed a sunlit hill...
Saw cloud-sheep scamper through the sky,
We plucked a daffodil.
That my house was neglected,
That I didn't brush the stairs,
In twenty years, no one on earth
Will know, or even care.
But that I've helped my little boy
To noble manhood grow,
In twenty years, the whole wide world
May look and see and know.

Sunday, August 1, 2010

Mothers Lie
By Lori Borgman

Expectant mothers waiting for a newborn's arrival say they don't care what sex the baby is.
They just want to have ten fingers and ten toes.
Mothers lie.
Every mother wants so much more.
She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.
She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.
She wants a baby that will roll over, sit up and take those first steps right on schedule.
Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.
She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.
Call it greed if you want, but a mother wants what a mother wants.
Some mothers get babies with something more.
Maybe you're one who got a baby with a condition you couldn't pronounce, a spine that didn't fuse, a missing chromosome or a palate that didn't close.
The doctor's words took your breath away.
It was just like the time at recess in the fourth grade when you didn't see the kick ball coming, and it knocked the wind right out of you.
Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled him for a checkup, and crashed head first into a brick wall as you bore the brunt of devastating news.
It didn't seem possible.
That didn't run in your family.
Could this really be happening in your lifetime?
There's no such thing as a perfect body.
Everybody will bear something at some time or another.
Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery.
Mothers of children with disabilities live the limitations with them.
Frankly, I don't know how you do it.
Sometimes you mothers scare me.
How you lift that kid in and out of the wheelchair twenty times a day.
How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.
I wonder how you endure the clich├ęs and the platitudes, the well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.
I even wonder how you endure schmaltzy columns like this one-saluting you, painting you as hero and saint, when you know you're ordinary.
You snap, you bark, you bite.
You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling,"Choose me, God. Choose me! I've got what it takes.
You're a woman who doesn't have time to step back and put things in perspective, so let me do it for you.
From where I sit, you're way ahead of the pack.
You've developed the strength of the draft horse while holding onto the delicacy of a daffodil.
You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.
You are the mother, advocate and protector of a child with a disability.
You're a neighbor, a friend, a woman I pass at church and my sister-in-law.
You're a wonder.