Saturday, February 26, 2011

Love my girl's imagination...

Amelia is wearing an apron she put on earlier in the day to clean with.  She was scrubbing down her police car outside (note the Kearney Jr. Police badge she is wearing up by her neck). She took a break to play house with her roly poly guys - they are all looking for the treasure in the clouds (a blue ring in cottonballs), which is right outside their house that looks suspiciously like an old diaper box.

She's got quite the style.  Note the zebra hat and the feather boa on her baby.  No sensible shoes for this girl!

Scenes From a Low Country Oyster Roast

This entire ALL you can eat oyster roast was only FIFTEEN DOLLARS.

Amelia, loving her oysters.  She will only eat "the little, cute ones", according to her. 

You're making Momma proud!!

Oysters roasting on a metal rack, covered in a wet cloth

Shoveling the oysters into buckets to dump on the tables
Frying turkeys

Grilling hotdogs and pulled pork

Roasting marshmallows for s'mores

Digging in at the oyster table

Sacks full of oysters and wood on a trailer

Bring your own gloves and oyster knife;
 table is full of hot sauce, paper towels and cocktail sauce
The emptied oysters get dumped in buckets, and the buckets dumped in wheelbarrows. 
They are then recycled back into the water to grow more oyster beds.

All you can eat oysters; still more sacks waiting to roast

Sitting by the fire, pulling pork; oysters roasting under the cloth
Everyone is eating plump oysters, chili, hotdogs, chicken mop, fried turkey, pulled pork,
brownies, chocolate nut cookies, crackers, drinks, and s'mores.  Mom and Olivia are right in front.

The end of the night; sitting around warming up by the fire. 
It's around 60 degrees by this time.

Friday, February 25, 2011

First moments with new SMO's

Olivia has never worn shoes and she's almost 18 months old.  She doesn't walk so I didn't really see a need to buy expensive shoes she would just grow out of quickly.  But this week we did get some special supports for her feet to help stabilize them and her ankles so that she could learn to walk.  Here she is with our Occupational Therapist right after we put them on her.

Kissing the Birdie

Working with the cognitive therapist taking birdies out and putting them back in

Thursday, February 24, 2011

My New Administrative Assistant

She's at it again... helping me sort my mail!

Sunny Day at the Park

Amelia loves her hats.  She's become quite the little model when the camera comes out.  I don't even know how she knows to make these cute gestures, but this was the first I'd seen them.  It was 74 degrees out yesterday and a lovely day!

Wednesday, February 23, 2011

Favorite Therapy Tools for the first year of PWS

When Olivia first came home from the hospital, she could not move purposefully.  We had tons of physical, occupational, cognitive and speech therapy for her.  All the therapists would give us a different area to work on during the week - homework so to speak.  Our cognitive therapist gave us this book so I could find a way to sing and play with her.  It was a great book - shows the actions to take with the words and lots of childhood rhymes.  One of the best things about it was that my brain was overloaded with all the information I was learning about PWS, and my physical time was taken up with taking care of her.  I had very little mental or emotional energy left over just to play, and I definitely had zero creativity.  This book was great for that. 

She also gave us the bird.  It's a very old fashioned toy, and if you ever see it, snatch it up.  It has a deep toned, very pleasant sounding bell inside that dings when the bird is moved in any direction.  It's extremely easy to move.  In order to encourage Olivia to move, I used to place it between her thighs as close to her crotch as I could as she laid on her back.  Again, this was in the not moving much at all stage. She couldn't lift her head nor did she have the strength to hold on to even the simplest of toys, literally.  Her legs were the strongest part of her and they would occasionally move, or she might squirm with the slightest of movements.  So anytime any part of her moved, this bird would chime.  It was an immediate feedback for the tiniest of movement on her part.  She loved this bird, and it would come into play during therapy in all different ways during the past year. 

The other toy with the multiple birds is extremely easy to move.  With the slightest touch, the birds twirl and the toy rolls.  Again, this provided excellent feedback to any of her movements and encouraged her to move when she would accidentally touch it. 

The last toy that is her favorite is not pictured here.  It was examining room table paper - the paper from the table at the doctor's office.  I noticed that every time we took her there (weekly for the first two months), it seemed to be the only time she really moved was on that paper.  It's so noisy and crinkly, and again it provided loud, fun, immediate feedback to her movements.  So I asked them if they would give me some of that paper to take home and they gave me a small roll of it.  I would tear off sheets of it and lay her on it for tummy time or for back time and watch her try to move more to make noise. 

Time to move on, toys!!!  I donated them all to EDIS.  She's on to bigger and better things. 

She says Dada!

18 months old (15.5 months adjusted age)

Monday, February 21, 2011

It's not the first time, and it won't be the last...

From PWS Mom blog:
She asked what Prader-Willi was and I briefly explained that it is something that affects the brain and makes it so you never feel full.

She said laughing,"Maybe that's what I have."

I kind of chuckled to be polite but I still cringe every time someone says that to me. They are joking of course. But I don't think it's funny.

This really hit home with me.  I've had this exact same conversation and thoughts a few times already with people who mean well.

 I cringe also... for the person who said it; for my daughter; and for the person I used to be who might have said the same thing - not knowing the sickening reality of PWS and not aware of how hurtful a light comment can sometimes be.

Sunday, February 20, 2011

She's quite proud of herself....

       "Who says I have low muscle tone?
Hmmm, I wonder if Mommy will notice that I just dumped over the laundry..."

Ooops! Caught!

Maybe if I smile real big, she won't notice the laundry on the floor

Thursday, February 17, 2011

Crazy Communication Milestone Day!

This past year and a half has been difficult in more ways than one.  Only recently did I realize that I really had hardly ever written down any milestone that Olivia has reached; so when I look back I am only sure of the specific date for a few things.  I'm really going to remedy that going forward.

Today was just a strange day in a really good way.  Livi has been on the cusp of doing a lot of things - ever since she started crawling the Monday before Christmas, it seems that her motor skills have just exploded.  It was as if her body and her brain finally realized she could move and do so much more than just sit there.  It took her almost a week to try and venture out of the area we did her therapy in all the time.  At first it was confusing to me, until I realized it was a sort of learned helplessness... she had always been in that area for stimulation and didn't realize she could go farther.  To combat that, we kept putting her in other areas of the house with things that crinkled (her favorites) a little out of her reach in the hallway outside the room.  Now it's thrilling to see her try and follow us from room to room.  She still doesn't do it as much as I would like, but it's neat to know she wants to be with us. 

Earlier this week, Amelia was playing dragon and roaring alot.  Sunday, right after Mia roared, so did Livie - who was right next to her.  It was so funny!  She did it several times after Mia, and then today as I was telling the OT the story and imitating what Livie did, she roared again. 

About two-three weeks ago at a play date, two of the moms said they heard Olivia say "baby" in context, but I didn't hear it then or since.  Between speech therapy and normal life today, she said baby, bye bye bear, bye bye bunny, grandma, and made the sign for eat in context and several times.  She doesn't really say mama a lot, but she has been able to say that one for a while.  She also has tried to say "eat" but with no sound coming out.  It looks sort of like a monkey grin - those real cheesy wide grins that squish the eyes shut.  She does it after I say, "eat, eat" to her and I was emphasizing the facial expression - drawing out the "e".  Try it and you will know what I am talking about.  It's kind of funny that she mimics the movement but can't quite get sound to come out.  All of these words are approximations, but they are in context and I will take it!

Our speech therapist is really an amazing woman.  We have been so blessed with our therapists.  She has so much knowledge and explains so much to us.  Janet told us that universally, once children get about 25 words in their vocabulary, they begin stringing them together in 2 word sentences.  It's neat to see Olivia starting this process.  It makes me wonder if she has the other words in her vocabulary but simply can't vocalize them enough for us to understand what they are.  I'm also reminded that with PWS, the receptive speech is much, much stronger than the expressive speech. 

 She has been wanting to walk so badly... she hates to sit down and actively fights against it when we are holding her up and need her to sit in a chair, on the floor or on our laps.  She tries to climb up our shoulders and bodies and stands on tippy toes at the windows trying to reach the blinds to play with them.  She bounces constantly and has been pulling herself to stand everywhere trying to reach things.  She's actually quite tall for a PWS child - 31 plus inches, 22 plus pounds and 17 months old.  She's WAY more inquisitive than I remember Amelia being at this stage.  Either that, or I have way more stuff on the counters now that she could pull off and I just notice it more. 

Olivia also walked today with a toy walker!  Our occupational therapist brought a Vtech Learning Walker she picked up from the local CAPA store, and Olivia took about 4 wobbly steps on it.  She would go about 3-4 steps with it slowly, then it got away from her and she would sink to her knees, pull herself up and then try again.  She was going from the therapist to myself and back again.  She was exhausted after therapy was over and slept an hour longer than normal for her nap. 

This time a year ago, I definitely did NOT see this happening in my future... after so many months of Olivia really not moving or talking much, it was hard to hold on to the promise that these kids do eventually gain a rough form of motor control, and some of the PWS kids do even better than that.  I'm so grateful we were able to start growth hormones at 4 months, and I wish we could have started them even earlier.  We just didn't have an endo that was current on PWS at the time, but now we have a great one.

Monday, February 14, 2011

Top Ten Good Things About Prader Willi Syndrome Babies

1)  When she was first born and didn't make any sound and slept anytime she wasn't being stimulated, it was easy to take a nap.  Theoretically.  If it wasn't for the enteral pump, bottle feeding for therapy, breast pumping, PT/OT/ST, eating and taking a shower once a week, I would have definitely been able to sleep.

2)  I could take her with me anywhere.  She never cried, moved or made a noise.  People who didn't know me told me I was a great mom with an amazing baby and I just smiled and said, "YES, I AM".  Let them envy.  I have plenty of my own for their baby's healthy screams.

3)  She could fall asleep anytime, anywhere.  I never worried about not scheduling therapy during her naptimes, because she fell asleep anytime she wasn't being stimulated.  I figured she got enough sleep, get her up and get her to work.  The more therapy, the merrier.

4)  She was very snuggly.  She never tried to wriggle out of my arms.

5)  She would let anyone hold her without crying.  So I told everyone, "See, she really likes you!!"  All she cared was that she had physical contact with someone.  Although to be honest, she has always shown a clear preference for men.  Hussy.

6)   She has a high pain tolerance.  So when I dropped her on her head, she only cried for about 5 seconds. 
Kidding.  She cried for 10.  OH, still kidding... I didn't drop her on her head. Chill.  I have accidentally poked or prodded her in the process of changing a diaper or moving her around while trying to wrestle a 4 year old at the same time - you moms know what I am talking about - and with no real reaction. 

7)  She'll eat anything now that she's on baby food.  So I feel like a great mom, feeding her a wide variety of fruits, vegetables and meats with no protest.  She only "kind of" spits out things by smooshing it out her mouth, but it's mostly bland food.  She has a good palate at an early age.  She loves mommy's cooking.  She is the only one in the family who doesn't complain when I make collard greens. 

8)  Since she was failure to thrive, we're on Neosure now that my year of pumping milk is over with and it's paid for by insurance.  Regular milk is expensive.  Thanks, Tricare.

9)  I never had to get up in the middle of the night every 2 hours.  It was more like every few minutes to listen to her breathe, check her temperature to make sure her body was holding temp and reposition her head and body so she wasn't too floppy.  I learned to sleep with one ear open until she stabilized at home.  I never woke up to screaming cries, but the sound of the alarm on the enteral pump going off to tell me it was time to pump milk and feed her again.

Wait, wasn't that supposed to be a good thing?  Oh well.  Fail for #9.

10)  When she finally smiled at me almost a year after she was born, I knew it wasn't gas.  She was smiling AT ME, and I EARNED THAT SMILE!

A valentine heard around the world...

Happy Valentine's Day from Beaufort, South Carolina to somewhere in Afghanistan. 

I'm seeing boats on the water and Spanish moss blowing in the wind; and you are seeing snow capped mountains. 

I see our children dressed up in princess outfits, giggling and laughing; you see sweaty men in military uniforms. 

I see our girls food smeared faces smiling up at me; you see the dirt stained faces of the Afghan children. 

Someday soon, we'll see the same things at the same time.  Until then, know you are loved and missed by your girls.

Valentine's Day Dinner

Shrimp Cocktail
Salad with onion vinaigrette
Garlic Roasted Pork Butt
Rosemary Potatoes
Collard Greens with Onion and Bacon
Green Beans (for mom)
Macaroni and Cheese (for Amelia)
Fresh Pineapple

Almost everything but the tiramisu, wine and pineapple were bought on sale. 

Spell Check

This post is for you, Barbara!


I never use spell check (which is obvious to my friend Barbara who often sends me emails with one word in them... correctly spelled).  Most of the time it's a genuine typing error because I know how to spell very well; but there are three words that I always have to think twice about and most of the time I still get it wrong.  I am clueless as to why I can't remember such simple words. 

So Barb, I typed very slowly tonight.  Just for you. ;)

Valentine's Day Box

Last year Amelia had her first Valentine's Day at school, but I barely pulled it together in time.  If not for a dear friend of mine (thank you Lori W), I would not have even had valentines for her to take to school.  It was completely off my radar screen because of all the work Olivia was taking at the time.

This year, we received a notice early to have shoe boxes and valentines ready for tomorrow.  So my uncrafty self came up with a fun craft that Amelia and I could do together.  It's stolen and modified from a more complicated craft online, but I love how it turned out.  It literally cost me nothing, as I already had the supplies. 

The best part of it is the fun we have had making this together.  We worked on it a little bit each day, and she was always so excited to do her part.  She was able to do most of it herself, with just a small amount of input from me.  She can hardly wait to go to school tomorrow and show off her work.  Not only that, but she had a few design suggestions that were better than mine.  Seriously, I am very lame in the decorating department.  Bested by a 4 year old. 

Yesterday while finishing up, she was also rocking a pink fairy costume with pink/orange argyle leggings and black boots; she'd asked me to pin her hair up into "princess hair" and then she got dressed.  She definitely has some style.

Here is what we did:  (I took pictures, but on a video camera that I don't know how to download from)
1)  Covered a shoe box in scrapbook paper.  I cut the pieces to fit, she put glue on the box and put the paper on.
2)  She stamped the inside lid of the box with all kinds of her little stamps - flowers, birds, hearts, etc
3)  She wrote her name on a piece of scrapbook paper and that was glued to the side of the box.
4)  I took another, complementary vintage pinkish design scrapbook paper, drew 6 rectangles on them and let her cut along the lines using the scrapbooking scissors with the wavy lines that make pretty edges.  I didnt' care if it was perfect, she cut pretty well but it still looked hand made.  Nice.
5)  Then I picked out purple, pink, red, blue crayons and gave her a pencil sharpener to shave crayons with into small bowls.
6)  I tore off two sheets of waxed paper and laid one sheet on top of a paper sack on an ironing board.  The paper sack is essential if you don't want to buy another fabric cover for your ironing board.  I had also lowered the ironing board to its lowest height.
7)  She sprinkled the different colors around the wax paper.  One thing I would do differently if I did a project like this again is to have her leave a bit more room between the colors.  They spread pretty well once they melted.
8)  I put the second piece of wax paper on top and then let her iron, with my hand on top of hers on the iron.  She pretty much directed the iron; I just wanted to make sure I had it just in case. The wax melted instantly. 
9)  While the crayons were cooling, she wrote her name on the back of all the cards. 
10)  Once cool, and while she was still writing, I took the fancy scrapbooking scissors and cut out hearts free form. 
11)  She worked over a paper bag; put glue on the hearts and put them in the middle of the scrapbook paper on the pretty design.  Originally I wanted her to put the hearts on the white part of the paper, the back of it by her name.  I thought the hearts would show up better.  Shows  how much design sense I have.  She didn't like that idea, hence the change. 
12) She saw some purple ribbons and wanted that, so she picked out two types of ribbon and I cut them and made little bows by just wrapping the skinny one around the middle of the bigger one and tying it in a knot.  She glued those onto the cards.

All this took about 4-5 days, working a little bit each day on it to accomodate the attention span of a 4 year old.  It was a peaceful, fun project to do together.  I can hardly wait to see her excitement again in the  morning as she takes them to school.

Unexpected Prayers

At night, snuggled together in the covers, Amelia and I say prayers together.  I would say the Lord's Prayer every night while she listened, and then one day out of the blue, she repeated the whole thing with me.  There is something magical about listening to a child pray.  We're nestled together, her cheek pressed to mine and I hear her sweet voice. 

Every night, I pray outloud.  I want Amelia to know that I come to God for help, for praise, for thanks.  Every night she listens.  Every once in a while, she wants to pray outloud.  Mostly she likes to pray in her mind, she says.  She's quiet for a minute, then tells me she's done.  Occasionally she will tell me she wants to say the same prayer again outloud.  She'll tell God thank you for friends, family, toys... ask him to watch out for Olivia and Daddy, often talk about relatives. 

Lately, I've been asking God to help me become a better mommy, to learn all I can about the intricacies of my children, along with the other things I pray about.  What I meant for it to be was an example of how we can go to God in all things and to be an example in asking for self discipline (which she surely needs right now). 

What it turned out to be was far different.  Last night, she prayed "in her mind" and then wanted to share with me the prayer outloud.  It was tender and sweet, right up to the point where she prayed "for mommy to be a better person".  I know she was repeating what she'd heard me pray, but I couldn't stop my reaction.  I said, "I AM a good person!!"  She immediately got the giggles and I knew I'd made a monumental mistake.  The kind your kids don't forget.  It had my attention, so she was going to repeat it over and over.  She did, last night.  In the car today on the way home from church.  Again tonight.  "Dear God... please help mommy be a better person".  What kid prays for that?  Seriously, it makes me feel like she's praying for a better mommy. 

I just  hope she doesn't start telling people she prays for her mommy to be a better person.  I know she's messing with me.  It's working.

Saturday, February 12, 2011

Chicken Pox

Olivia has chicken pox and a fever of 100.4 earlier today.  The chicken pox is very mild and this version apparently an attenuated virus, which is good.  I'm thrilled at several things...

She isn't too fussy, just tired.  Doesn't feel uncomfortable - because she has a reduced sensitivity to pain, I don't think she really notices anything itchy.

She's very snuggly and keeps reaching for my pants leg to be picked up.  :)))))))))

She had a fever.  A normal fever.  I wonder what this means for us... it's not typical that PWS children have fevers and the doc said a low fever was typical for this type of chicken pox.  It's actually great news that she had a fever in my mind.  I don't know enough about it to know otherwise, but it feels like it's a good thing.

I was supposed to make a meal for Family Promise tonight and be a dinner host... couldn't because we're not supposed to be around kids for 48 hours.  I made the meal and dropped it off, went home to do some work and then went back to pick up my containers two hours later.  I should be sleeping right now.


It's been an extremely busy month.  Every day I want to sit and write about what we've been doing but all I do is surf and let my brain veg when I finally get a chance to sit down.

Last Friday Mom and I drove the girls to Roanoke, Virginia to see my niece in a play at Hollins University.  What was a 7 hour drive ended up taking us 2 days.  My brand new van broke down right outside of Charlotte, NC.  Thank goodness for the wonderful people at Hendrick Honda... although it was after hours  (7 pm) and the service department was closed, they found a mechanic to drive out to where we were and check out the van.  We definatelly needed a tow according to him. 

Mom waited for the van to get towed almost 4 hours... the first tow truck driver threw the keys at her when she asked him why he was taking the plastic covering off the extra key.  Crazy!  The mechanic drove myself, Olivia and Amelia back to the dealer in a loaner van, where we dropped him off and found a place to stay for the night.  I checked in, dropped our stuff off and tried to get the girls to go to sleep.  They finally fell asleep a little after midnight, just in time to get 15 minutes of rest before I had to wake them up to go get mom.  Poor Amelia... she was as floppy as Olivia when she was a baby.  I could NOT get her to wake up and ended up carrying a 4 year old in one arm and a 17 month old in a baby carrier in the other arm down to the first floor and out the door.  I dropped their blankies in the freezing rain and generally had a rough time. 

We finally got the girls back into bed after picking up mom; and they worked on our car first the next day.  When they realized they couldn't fix it quickly, they gave us another vehicle, this time a rental, and had us go on our merry way.  We booked it to Hollins and made it just in time to see the last 30-45 minutes of Katie's play.   She has no idea how hard we worked every angle to get there on time.  It was great to see her. 

Finally home late Sunday night.  What was supposed to be a quick trip turned out to be one of the longest and hardest short trips I've ever taken. 

Thank goodness Olivia has Prader Willi Syndrome.  She was calm and quiet the whole time :)  I guess there's something to be said for a baby who doesn't ever really get fussy.  I hear she will make up for it later, but I am enjoying the flexibility for now.

The bad part of the trip is that it was so exhausting, somehow I misplaced my camera or it fell somewhere and I didn't notice it.  I'm missing a disk that was stored in there with some priceless pics of Amelia as a baby.  Don't ask me why I was dumb enough to put them in the storage part of the camera case.  I'm hoping that I find it somehow.