Hoping to someday find M's brother adopted in the U.S. -
Myckola Oleksandrovych Markov - 8/26/2003

Wednesday, February 29, 2012

The "Before" of botox

Here's Mariah trying to turn her hand over.  This is why we got botox.  She has spasticity in her forearm that makes that movement impossible unless her arm is drawn up to body.  So, this is the "before" and I hope to be posting the "after" in about two weeks!

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Pic 1: anything to get out of actually sleeping at naptime! Yes, those are stickers!

Pic 2:  Mariah being a bridge.  Later, she tried being a gate in front of Wes who was being a train.  Turns out objects in motion remain in motion even when acted upon by pesky things like gates.

Pic 3:  what Mariah's SMO looks like in her shoe.  Yay for no sweaty legs this summer!  We can get short socks!

Pic 4:  Wyatt feeding his frog, "Little Buddy" some bacon.  Cause frogs luv them some bacon, right!?

Pic 5:  Wyatt holding "Buhriah" as he calls her while they were watching cartoons.  These 2 play together really well... except for when they don't.

I seem to do the majority of my blogging from my phone now...

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Who says CP means you can't do what everyone else does?

Mariah LOVES to twirl on the sit and spin.  She does it till she gets dizzy and lets go.
We were painting the trim in her room so that's why you see the cardboard and paint bucket!

All 3 of the kids love to bowl.  Mariah can do it pretty much by herself as long as some puts the ramp up and sets the ball on it.  She has just as much fun cheering everyone else on and stomping around being sassy as she does actually bowling.

My husband's parents have a powerwheels for the kids.  Its one of Mariah's favorite things to ride on and she is actually pretty good at it, even reversing the direction to back up and adjust when she runs into something (which is fairly often!).

Tuesday, February 28, 2012

Botox, SMOs, & a friend!

We spent 4 hours at the Kluge Children's Rehab Center yesterday.
The first good news came at registration.  Mariah had gone from 29.5lbs in October to 34.5lbs now.  She gained 5lbs!  Whoo hoo!  The Carbo Gain shakes are working!

Mariah's Dr agreed that botox would be a good thing for her right arm so we waited an hour for insurance approval (think $1K a vial!) And got it done. 

Her Dr also said she has gotten much stronger and has good range of motion in her legs so we could go to SMOs!  Yay!  Three months ago they refused to let her have hinged AFOs because she was too weak and now she doesn't need the high calf support at all.

While we waited for botox approval, she got casted for SMOs which she loves doing now!

She got to pick out colors and boy did she pick out a doozy of a combo!

Multi-speckled foam padding, rainbow stripe velcro and bright blue straps. Oy!!

The orthotics guy cut her AFOs down to improvised SMOs so she can get used to less support.

While we were there, we met up with another CP mom at Kluges and had lunch in a really small, really weird little cafeteria.  Her little boy was so sweet and is also adopted from Ukraine very close to the same time that Mariah was.  She stayed after lunch to help me hold Mariah down for her botox.  She screeeeeeeaaaaaaaammmmmmssssssss from the time she sees the needle till after I pick her up.  I also have a tendency to pass out or sometimes throw up (or both) when faced with needles.  Thanks Marnie!  I didn't mention that I might throw up... just the passing out part, but fortunately I was ok this time.  Whew!  Honestly the nausea part comes only IF I begin to black out and fight it.  Fun right!?

The Dr also mention Mariah's legs still look great from botox 4 months ago and she might not even need botox in her legs again, but we'll see.  It typically lasts 6-8 months.

We also got a look at her MRI from the summer and it was fairly non-surprising.  It showed a bit more damage on her left side in the arm area so no surprise its spastic.  Her Dr. just wanted to check the MRI to make sure that it was indeed the brain damage causing the spasticity and therefore the botox is a good choice for treatment.  She has a mix of spasticity in her body that he said was kind of unusual.  Tight right ankle but floppy leg.  Looser left ankle but tighter left hamstring yet unaffected left arm.  Usually most people with CP have a definite side that is affected more, but with Mariah its kind of a mix.

I asked if it looked like there was any reason to think there was a cognitive impact and the Dr. said it looked like the damage was mostly in the areas that affect gross motor skills.  He also said that the brain wasn't formed quite "normally" while pointing at the lumpy folds on the outside edges close to her skull.  Not sure what "normal" looks like though!  Of course with Mariah standing there looking at her brain image complete with eyeballs on the screen saying, "Oh dat is so gross!  Dat is scary! I don't wike dat!  Ewww!!"  we all had to laugh.  One of the assistants was like, "Well she seems really bright!"  Yep, she impressed everyone with her chattering. 

Overall, she's doing awesome!  Her Dr. said that there really isn't anything else that needs treatment right now so just keep doing what we're doing because she is making great progress. 

I realized once Marnie and I said goodbye that we didn't take a single photo of each other or our kids together!  Ooopsie.
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Sunday, February 26, 2012

March Madness

Good things always seem to happen to our family in March.

Usually its a big change and one that we didn't see coming.

No surprise, as March is coming up in a few days that we'd suddenly find ourselves in the middle of what could be a big change for us. It means that something I thought I was supposed to do probably won't be possible, but that something else we had wanted to do, but thought we couldn't, probably will be!

Sometimes its hard to sort though what you *thought* you were supposed to do when it seems a different plan is unfolding and definitely not of your own doing or timing. God's timing is funny like that.

Hopefully I can share a bit more later, but that's it for now!

Friday, February 24, 2012

Random pics of the week

So we have Wes with some microwaved peeps.  I hate these disgusting artificially colored mounds of fluffy sugar.  I take pleasure in nuking them.

Mariah made me dinner the other night, complete with setting the table and using a piece of tissue paper for the tablecloth.

I found Mariah in her room stretching her baby's muscles this morning.  She was doing it quite efficiently!  Baby should be loosened up for days!

Pic #4 is me and my new haircut.  I have ridiculously thick hair.  What I see on a model in a book never looks the same on me!  Mariah has perfect hair for the style I was trying to achieve.  Guess what she's getting next time!

The last pic is of Mariah at a local park.  They have a good bit of special needs equipment at this park so its nice she can play at something that doesn't require climbing.  She can climb, but its nice that she can do other things and still have fun.

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Tuesday, February 21, 2012

6 year old in the house!

Wes' BD was on President's Day.  He was born on President's Day 6 years ago.  We had a bowling party over the weekend and then he got his wish: snow!  I can't believe I'm the mom to a 6 year old.  Wow... where does the time go?

Now my other two are insisting that they have bowling parties for their BDs as well...  Wy wants a spiderman cake and Mariah wants (surprise surprise) a princess cake!  All 3 kids looooove bowling and with the ramp, Mariah is able to fully participate!

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Snow Day!

We finally got some snow this winter!  Happy kids!!

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Saturday, February 18, 2012

We found him!

We found my little man's dog.  Praise God!  My mama's heart was breaking after 2 days and no sign of Snickers.  We found him a few miles away just laying in someone else's yard!  He followed a creek through the woods and must have gotten lost.  Thanking God for His blessings tonight!

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Thursday, February 16, 2012

Prayers Please

We have two dogs that we got at the end of the summer for our boys. One of the dogs went missing today. He is never seen without his brother so I am very worried about what has happened to him. He's my littlest guy's dog and he LOVES that dog. PLEASE pray that we'll find him tomorrow. I have a sad puppy and I'm gonna have a very very sad little boy if we can't find his dog. We have a pretty large plot of land the dogs play around on but only one dog came back from playing in the creek today.

Thanks for the prayers. I can't stand to see my baby sad.

Tuesday, February 14, 2012

Progress Report

Mariah's new preschool gave me a progress report they did with her last week.

Just to refresh, some of her year end goals for public school just two months ago were things like:

Stand in line.
Stop and start on command when walking 2 out of 4 trials.
Stand up from a chair
Identify primary colors
Identify shapes like "circle, square, star, triangle"
Draw intersecting lines 2 out of 4 trials
Sit in a group and "attend" what's going on (book reading). They said she wasn't paying attention.

Those are YEAR END goals. That means they hoped she could do those things by the end of the school year in June.

Well, her progress report today from her preschool that she's been attending since January surprised me, and in a good way!

She is working on using scissors. Something I was told she was not able to do by the OT.
She has actually cut things out by herself w/ her tutor assisting her with holding the paper. She the kite post below...

From her New Preschool:

Her skill chart states that she listens and follows directions.
She waits patiently for her turn.
She cares for toys and school materials (not surprising. she is very respectful with toys at home)
She uses the potty on her own.
She listens to stories and books in a group setting.
She participates in group activities.
She puts on and takes off her own coat.
She knows her name.
She identified "yellow, blue, pink, and white" This is HUGE. At public school her teacher just couldn't get her to identify one color consistently. They worked on yellow from August to December. I was really beside myself as to why this was!?
She identified "square, triangle, and star"
She can count to 14! (but won't do it for me...grrrr...)
She can count items in a row.

At the bottom it says,
"Mariah is a JOY to have in class."

When I drop her off each day, she goes as fast as she can "running" down the hall WITH the other kids to get to class. She can stop. She can start. She might fall down, but she gets up and keeps going. She can stand up from a chair and walk across a room. She is participating in class and doing great :)

She made the class newsletter with a picture of her writing letters in shaving cream :) Yep, that might as well be OT. I am so glad we made the decision to withdraw her from public school and send her to preschool with Wyatt. I really worried about it, but she is doing awesome!!

Monday, February 13, 2012

Mariah at PT

We do formal PT once every 2 weeks.  I get pointers on what to work on at home and Mariah gets evaluated for progress. 

This week she was trying out bosu balls, dyna disk, and a rocker board as things to work on with her balance.  These can help her learn to balance on uneven surfaces and help her ultimately navigate outside better.

Her PT also said she thinks Mariah is ready for SMOs or "shorties" instead of the full leg AFO she wears now.  Awesome!!

We'll also be going for a botox eval on her right arm in a few weeks.  The botox worked awesome in her legs so our hope is it will help relieve the spasticity in her right arm as well. 

Exciting stuff!

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Thursday, February 9, 2012

Mariah Flying a Kite

Mariah made this kite with her tutor.
When she got home she was SO excited to show me how she can fly a kite. She told me, "Its good practice for my muscles."
Look at her go!

Thank you God for sending her wonderful tutor our way.

Here she is standing up from the floor BY HERSELF.
This is a recent accomplishment.
Now falling isn't such a big deal cause she can get back up!

She won't be able to do what? Say it again cause I caaaaaaan't heaaar you!

Wednesday, February 1, 2012

Sibling fun

Thankfully, my kids get along fairly well.  Yes, they squabble and fuss and squeal about sharing, but for the most part they really like each other.  I hope they are close when they grow up too.

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We witness a miracle every time a child enters into life; but those who make their journey home across time and miles, growing within the hearts of those who wait to love them,are carried on the wings of destiny; and placed among us by God's very own hands. --Kristi Larson