My little survivor turns four!

  Happy Birthday, Princess!!

Special Exposure Wednesday – Olive Fingers

SEC is hosted by 5 Minutes for Special Needs.  Please stop by to see more or link up! 

All my kids like “olive fingers”.  I am trained in my mommy duties to provide each child with no less than 10 black olives on their plate.  One for each finger.  For PM I consider it therapy on the sly.  Look at those fingers open!!!  Whatever works, I say!

Brendon’s Smile

As part of May being Stroke Awareness Month I wanted to introduce you to one of our friends.  Although we’ve never met in real life, I feel close to this family because Brendon’s story is so similar to ours.

Brendon suffered a stroke before he was born, as a result he has Cerebral Palsy (right sided hemiparesis, like PM) as well as Muscular Scoliosis, Speech Apraxia and Aphasia.  His parents were inspired to create  Brendon’s Smile, a non-profit organization to raise awareness of Pediatric Stroke.  Please head over to Brendon’s CaringBridge site to learn more!!

1 in 4000 babies will have a stroke

PM is a stroke survivor.  As a result she has Hemiplegic Cerebral Palsy that affects her right side.  May is Pediatric Stroke Awareness month and today I want to re-post a video we made for PM after her first round of Constraint Induced Therapy (CIT).  CIT involves casting the “good” arm while participating in more intensive physical and occupational therapy to build stronger neuropathways for her weak side.  You can see the effects this has in just 4 short weeks!  PM did a second round of CIT in June 2009.  We would like to do more soon.  Therapy is so wonderful for her and has really improved her movement and fine motor skills.  We know it will never be perfect, but there has been a TON of improvement!!

You can learn more about Pediatric Stroke at KidsHaveStrokes.org !

May is Pediatric Stroke Awareness Month

Did you know kids have strokes, babies have strokes, even the unborn can have a stroke? Our little girl is a stroke survivor. May is Pediatric Stroke Awareness Month and you can learn more about pediatric strokes at Kids Have Strokes.  A purple ribbon is the symbol of pediatric stroke.  Through out May I will be introducing you to some amazing kids like PM who have survived strokes.  I hope you’ll follow us and come back again!

Special Exposure Wednesday – The Wing

Special Exposure Wednesday is found at 5 Minutes for Special Needs.  A chance to showcase your special parenting in pictures!

I have started to think of PM’s right hand as a wounded wing, tucked up under her arm.  The thing is, with work and little reminders, that wing is functional.  I realize we can never completely “fix” cerebral palsy.  I realize I can’t expect her to do everything perfectly, but I can see what she’s capable of.  I know there’s nothing truly stopping her from flying with that wing when she wants to.   But it takes work on my part, too.  For now, anyway.  Encouragement, love, and patience.  Oh, and probably some prodding and therapy.  She may not always be happy with me for strapping on the “pink” (her left hand restraint) or for asking her to use her other arm, but in the long run I am positive it will be a good thing.  I see it already.  I think she does, too.

 

About the pictures: I shot these with my Canon 50mm prime lens at f2.8and natural light.  If you use a Canon camera I highly recommend this lens, it’s inexpensive and you will looove it!

A Thousand Words Thursday - Contemplation

A Thousand Word Thursday is a chance to post those pictures, old and new, that you love to see.  They are always worth a thousand words.  See more at Cheaper Than Therapy.

Piper’s “pink” comes off this afternoon!! Yaay!  I was happy to see some progress with her Constraint Induced Therapy. I was honestly hoping for more, like the big strides made LAST TIME, but it’s still good.  We are in the fine tuning stage this time, not the leaps and bounds from before. Still good.

A Thousand Words Thursday – A Year and a Half

A year and a half ago we learned Piper had Hemiplegic Cerebral Palsy.  We learned about the difference between Occupational Therapy and Physical Therapy.  We learned that toddlers are sedated for MRI’s.  We learned that what damage is done cannot be undone.  We learned what AFO’s and UCB’s are.  We learned what Kinesio tape is.  We learned about CIT.  We also learned that these things do not define Piper.  We learned that we can’t know what lies ahead, because it’s never what you think.  We learned how determined and strong a two-year-old can be.  She taught us those things, and she continues to teach us and surprise us. 

A Thousand Words Thursday is hosted by TheMomJen at Cheaper Than Therapy.  Please stop by her place to see even more!

Friday Fragments – Fourth

Get ‘em all out, all those bits and pieces you’ve stored up all week. It’s Fragment Friday! See tons of other random thoughts at Half Past Kissing Time!

• I have been trying to get my house in order all week.  Fat lot of good it did. Should’ve just sun tanned instead, the place would look the same.
• My clothes line is loving all the attention, I think there’s been something on it every sunny day lately! Especially all my lovely cloth diapers.  I feel like such a nerd that I’m excited over butt covers.  I imagine the novelty will wear off, but for now I love washing them, hanging them, folding them.  Surely I’ve cracked.
• I will be gone over the fourth to shoot a wedding.  The couple is from Hubby’s National Guard unit that he went to Afghanistan with.  Sadly, Hubby can’t even attend.  I on the other hand am not only attending, but doing so SANS KIDS.  A whole weekend. without. kids.  I’ve not done this since we had half as many.  I’m pretty excited!! That being said, I’m feeling some trepidation.  Wouldn’t you know it the baby spiked a little temp today and the oldest mentioned that her throat hurt.  Can’t you guys just hold out through the weekend?? I promise I’ll drag you all into Urgent Care first thing Monday morning if that’s what you need!!!!!
• You know me, I get restless, so I changed the look of my photography blog.  You can see it by clicking the button below:

I’d love to hear your input!!

• Oh, Billy Mays! Who’s gonna shout at me in the middle of the night to keep me awake while I edit pictures!! You will be missed “OxyClean Guy” (that’s what the kids know him as)
• The neighbors just had their front steps rebuilt and their house painted.  Our house, in the mean time looks like its falling apart.  Hope we’re not bringing down their property values with our ghetto corner lot, peeling paint, toys strewn about the lawn and listing garage.
• Steve (that’s the Hubby in case you weren’t sure) and I are adopting… I’ll tell you all about it this weekend (in a post I have set to publish while I’m gone – hee hee!)

CIT Day 10 tally:

# times anyone was smacked upside the head with a cast: 1 (poor Jackson!)

# times “pink” got caught in the swingset climbing ladder: 4

# times Piper freaked out about “pink” getting stuck: 4

# Princess color book pages done RIGHT HANDED: 2!!

A Thousand Word Thursday - Cheating

Thousand Word Thursday. All those photos worth a thousand words...or more! See the selections of the week at Cheaper Than Therapy!

Ssshhhh! You didn’t see this. Dr. K will never need to know. Worked like a charm, though!

~~~~~~~~~~

CIT Day 9 Numbers:

# times MD was clobbered with cast: just 1 all weekend!!

# baths requested: 5 or 6

# full baths actually received: 1

# times PM fell at the park: 2-3

# full sized band-aids in the van first aid kit: 0

# teeny tiny band-aids needed to cover a skinned knee: 2

Ever the princess…

Friday Fragments – Week One

Gather up all those little thoughts and air them out for all to see read. It’s time for Friday Fragments, my weekly “spring cleaning” of the mind. If only real spring cleaning was so easy! Thanks to Mrs. 4444 at Half Past Kissing Time, we all get to share in the cleansing!

• We went ahead and purchased a family membership to the local pool for the summer. Now I just need to make sure they go at least 25 times to make it worth the cost!!! I am pretty certain that when I was a kid I was there every day they were open so I don’t think 25 days in an entire summer will be difficult.
• Can you believe Michael Jackson is gone?? Seriously? I know he really went downhill this last decade or so, but I mean the King of Pop? Even with all that has transpired, he was an extremely talented musician. I used to have a big time crush on MJ. I still have a whole box of memorabilia my mom brought over to our house when they moved and cleaned out my old room. Hmmm, I guess I may have to visit e-bay this afternoon, I bet the market value has gone up.
• I’ll be listing some new stuff on Etsy this afternoon, I’d love it if you all would drop by. ALSO… the reason I started really listing on Etsy was to HELP COLE. I have listed a Baseball themed Scrabble Tile Pendant that you can personalize. The proceeds go to help sweet little Cole go to a special care school and pay for necessary equipment. Any of you with special needs kids know how expensive things can get, even with good insurance. So, please, take a few minutes to check in on Cole and if you feel led, buy a pendant!! There is also a button on my sidebar that will take you directly to my shop on Etsy (if you REEAALLY want to help, e-mail me, I’ll send you the code for the same button for your blog!!)->->->
• The kids and I have been making little cardboard houses for AM’s miniature cats to live in. I get to show off my prowess with craft paper and a hot glue gun, the kids get “new” toys. Even MD will play with the girls and live in the houses. They were upstairs for almost 2 hours on Tuesday just playing “kitties”. Ahhh, a little quality computer cleaning time!

• PM and MD love to push each other’s buttons. I know this is what it’s like for siblings, but they both seem to be particularly good at it. MD will say or do over and over again the one thing PM reacts to. PM on the other hand, finds that one thing that bugs MD and stores it in that little Rolodex of a brain she has and keeps that nugget for a time when he least expects it. She analyzes the situation, then accesses her file of things-that-bug-MD and pulls out of her arsenal something that will almost frustrate MD to tears.

• We are almost done with Week One of PM’s CIT. Here’s today’s numbers:

# times asked for “pink off”: 1

# times MD got clobbered with cast: 0 (woohoo!)

# kitchen gloves mom bought for swimming: 2

# hours PM was in the wading pool: 2.5

# ounces of water in said kitchen glove and dripping out of cast later: maybe 1

# times mom kicked herself for taking PM to the pool: most of the evening!

A Thousand Words Thursday – Photos by AM

I’d like to introduce a girl after my own heart, my oldest took this shot. She got a couple of really good ones, actually. She told me she doesn’t want to be an archaeologist any more, but a photographer. I told her she could probably do both, and still sketch as well. AM was elated.

Do you have a picture worth a thousand words (or more)? Join in showing them off at Cheaper Than Therapy!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

CIT Day Three Numbers:

# drinks spilled: 0 (yaay sippies, I cheated)

# times asked for “pink off”: 0 (progress!)

# times MD was clobbered with cast: 1

# times she wanted to clobber MD with cast: at least 15 (more progress!)

# of times PM fell face first spread eagle onto the parking lot pavement at Wal-Mart thus inducing several “Mom-of-the-year” stares from people noticing the poor girl already has a cast on one arm and a brace on the opposite leg: 1 (sigh)

Wordless/Wordful Wednesday – A little leftover from Father’s Day

Wordless Wednesday is brought to you by the fine ladies at 5 Minutes for Mom!

Daddy comes home for a visit, October 2006

~~~~~~~~~~~~~~~~~~~~~And now the wordful part~~~~~~~~~~~~~~~~~~~~~

You know those times when you tell yourself “I’m not going to cry” even though you know just how its going to end up? That was the day. Daddy was home, albeit for only 2 short weeks. I absolutely love this photo, and I was so glad that someone was thoughtful enough to catch this moment for us. I slept so well those two weeks, simply from the relief of knowing my husband was in the bed beside me. You wouldn’t believe how often I freaked out when someone knocked at our door, praying silently that this wasn’t a pair of men in dress blues with a letter for me. What can you do in two weeks? Well, attend a few parties, love on the kids a whole lot (meet the daughter you haven’t even seen in person), and eat….a..lot. My hubby had actually written a list of the foods he’d like to enjoy while he was here. I think we made it through all but one or two items on the list. Two weeks was never so short.

Wordful Wednesday can be found at Seven Clown Circus

~~~~~~~~~~~~~

CIT Day Two Numbers:

# drinks spilled: 1

# times asked for “pink off”: 1

# times I was clubbed with cast: 2 – NOT intentionally

# times PM asked to take a bath: 3 at least

# of baths PM got to take: 0

Constraint Induced Therapy – Round Two, Day One

PM got her new cast put on this afternoon. She wasn’t too interested in getting a new “pink” when we talked about it, but like the trooper she is, she sat quietly and watched as they wrapped up her left arm. She picked out red this time, but we still call it her “pink”. If you’re not familiar with CIT, constraint induced therapy, you can read the definitions HERE. Basically, we are constraining the “good” arm to force her to use the weaker one. This should help the brain remember that the other side is available and help build stronger neuropathways. We saw pretty good results with the last session in October, so we wanted to get another one in before she gets to old for this type of therapy isn’t as effective. I have videos of her last session on YouTube. Having a cast that can’t be removed makes all of her daily activities become therapy. When you have a cast that can be removed, they know it. PM has already asked twice for me to take it off, when I tell her its “stuck” she accepts that answer and goes back to what she was doing. I can imagine her throwing more of a fit if she knew the cast came off and I just wasn’t removing it for her.

I’ve already noticed a few issues we didn’t have last time. 1.) PM no longer drinks from sippy cups and her little fingers just don’t wrap around a regular kid cup well enough to drink from it. 2.) PM wasn’t potty trained last time, so I will have to accompany her to every bathroom visit since she probably won’t be able to do it all alone. You can read about our last adventures with CIT in October HERE (start from the bottom). I’ll also be posting more on her Caringbridge site.

Today’s Tally:

# drinks spilled: 1.5

# times asked for “pink off”: 2

# of people who thought she broke her arm: 1

# times MD got clubbed with a cast: 4 - yes on purpose.

A Thousand Words Thursday – Birthday tribute

Find your favorites photos worth a thousand words and share them at TheMomJen’s Cheaper Than Therapy!

I meant to get this done yesterday, for PM’s birthday, but it took me an extra day. I hope you like it. I tried to keep it under 10 minutes, so grab some popcorn!!

Wordless Wordful Wednesday – Happy Birthday Sweet Princess

Wordless Wednesday is brought to you by the sweet gals at 5 Minutes for Mom.

~~~~~~~~~~~~~~~~~~~~~~And now for the wordful part~~~~~~~~~~~~~~~~~~~~~~~~

It’s PM’s third birthday. It’s significant for us in a number of ways. Today she is no longer eligible for our state’s Early Intervention program. She has “graduated”, which doesn’t at all mean she’d done with therapy. She has many years of physical and occupational therapy left. It simply means the state will no longer send over an OT to our house, and ALSO she is no longer covered by Medical Assistance, so we will now be responsible for a larger part of her medical care (co-pays and items not covered by our personal insurance). It also is significant because many children with Hemiplegic Cerebral Palsy suffer from seizures and take medication daily in hopes to control it. PM has not had a seizure, and it is less likely now that she will have any, but not impossible. We are in love with this little girl and inspired by her strength and determination, her tenacity and playfulness. Happy Birthday Sweet Girl!!

Wordful Wednesday posts can be found at Seven Clown Circus!!