SNERT

We had our first SNERT yesterday for Olivia. 

The Marine Corps Special Needs Evaluation Review Team (SNERT) consists of qualified personnel whose goal is to make an assessment of the accommodations necessary for a special needs child to participate in Marine Corps Children, Youth and Teen Programs (CYTP) and to determine the most appropriate placement for the child. An installation’s SNERT reports to the installation commander and includes, at a minimum, the CYTP Administrator, EFMP Coordinator, medical personnel, parent(s), the child or youth when appropriate, and other applicable CYTP or community agency personnel. 
Children who require medical or educational intervention, assistance, or other accommodations are eligible for services.  This includes, but is not limited to, children with autism, asthma, allergies, hearing impairment, orthopedic impairment, developmental delays, behavioral issues, specific learning disablement, and mental, physical, or emotional challenges. Upon request for services, the SNERT will make an assessment of the accommodations necessary for a special needs child to participate and determine the most appropriate placement.  
Parents can read Marine Corps Order P1710.30E, "Marine Corps Children, Youth and Teen Programs," 24 June 2004 for more information on SNERT.

Currently with my husband deployed, my mom is my respite care provider.  She's received permission from his CO and housing to live on base with me and it has been invaluable for Olivia's care and therapy.  I think she is MUCH farther ahead than she would be otherwise because of the level of care and therapy she is receiving from both of us on a daily basis.

I want to take her out to thank her, and give us both a day of fun filled relaxation with no kids.  But.. SHE is my respite care provider.  So I looked into putting Olivia in the CDC (Child Development Center) on base for drop in care and found that I needed to do a SNERT to enroll her. 

It was a little surreal - kind of like an IEP meeting for preschoolers.  The director of the CDC was there; a representative from the EFMP office (Exceptional Family Member Program); and a nurse.  I was told that a representative from EDIS (Educational Developmental Intervention Services) would also be there, but I think she was unavailable on such short notice. 

The director interviewed me and asked me about Olivia's medical history and potential issues.  It was hard to explain what was wrong with Olivia, because while I was stating the facts, she actually does better day to day right now than it sounded.  It was sort of the feeling you get as a special needs parent when you think your child is doing great and your life has settled into "normal" right up until you go to the doctor's office and they make you fill out the questionnaire on developmental milestones - and you realize how far behind she really is.  The director sounded really anxious and nervous, and every time I told her something it seemed she worried more and more.  The CDC's have only recently begun accepting federal money for their food programs and so they have to abide by the disability inclusion laws for education.  Prior to that, they did not. 

The nurse kept trying to talk me into having Olivia taken care of at a local family provider home on base - basically a home child care business run by a mom.  There are quite a few providers on both bases available for this option. 

The EFMP director is AMAZING and she actually has seen Olivia in action.  She was there basically to observe and facilitate as needed for my rights.  She kept quiet most of the time, just listening as we went back and forth between the director and the nurse and myself.  I had to keep saying things like, "Ok, let me wrap my mind around this and make sure I understand you - You are telling me that you are uncomfortable with your ability to supply her needs and take care of her at the CDC and you want me to take her to a Family Home Provider instead" (which is illegal).  The nurse would come back with, "Well, I just think you would be happier if you took her to a Family Home Provider who could provide a more individualized level of care because there are less children in the home".   It was all very tricky and subtle how they worded things. 

I really wanted her in the CDC for several reasons, not the least of which was socialization with other children her age.  We've had to keep her seperated for so long because of health issues, I really think she needs to be around a lot of other little kids close to her age. Finally the EFMP rep stepped in and said one sentence and they sort of all fell in line and agreed to have her come to the CDC.  They want me to put her in care this Friday for a trial run while I am still close by in case anything happens they have questions about.  It's all so strange to me - they called me 3 times after I left the meeting to ask questions about her development level and kind of sounding panicky every time I gave an answer. 

Here are some of the issues they had:
Can she sit in a chair (the other kids sit in chairs and self feed)?
Can she drink from a sippy cup?
Can she have the lunch they provide?
Can she eat solids?
Can she follow their schedule?
Can she sit up?
Can she feed herself?

They really didn't give me the impression they were too thrilled with having to do the extra work it would take to have Olivia there - feed her by bottle, feed her by spoon, put her in a high chair, etc.  They actually asked me to bring my own high chair.  I am providing the food, the spoon, the milk in a thermos already mixed in bottles, the bib for her.... It sounds like this huge deal and really it's no different from having to watch an 11-12 month old.

It's official - I'm twice as stressed as everyone else...

Did you know that mothers of children with Prader-Willi Syndrome have up to twice as much stress when compared with parents of other developmentally disabled children?  In addition, parents with disabled children already report a 10% higher number of stressors then the average parent.  Not to mention a recent American Psychological Association poll that found that one-third (32%) of parents in general report that their stress levels are extreme!

This is from the Foundation for Prader Willi Research - Canada.

I heard that statistic very early on after Olivia was diagnosed with PWS.  At the time, I found it very hard to believe that a PWS parent could be more stressed than any other parent of a disabled child.  It smacked of hubris to me and I thought that either the person quoting it misheard the original information, left out a word, or just "felt" things were worse. 

I don't believe that anymore.  Although it feels kind of wrong for me to admit this - I've never been a big fan of the whole game of "my stress is worse than your stress" or "my problem is worse than your problem" or worst of all, "my husband's deployment is worse on me than your husband's deployment is on you"; I can understand a little bit of why PWS feels a little worse.  While it is not true in all cases, there are some things unique to PWS that are not encountered in any other disability that I am currently aware of. 

It's the food.  Always the food.

If you think we're a food obsessed culture now, wait until you have a food related disorder and then you will realize you can barely go even a few minutes without thinking, hearing, seeing, smelling food in some way.  Everyone is talking about food -  using food for motivation or discipline; as metaphor for hospitality, love or caring; as a tool for health or fitness; for familial or community bonding; for tradition or cultural reference; for hobby and relaxation; for business deals and entertainment; as a story-telling tool in parables and books... the list goes on. 

In our family, even before Olivia, we really limited the amount of sweets and snacks we have in the house.  I don't really buy junk food; and by this I mean cookies, chips, candy, snack crackers, cake or sweet bread mixes, etc.  It's not that we never ate those things, but they were eaten sparingly and rarely, and mostly at other people's houses.  About two years ago I started collecting all the candy that Amelia was being given at various functions and put it in a clear plastic shoebox.  Every time she received treats, she could eat one or two and the rest went into the shoebox for special occasions.  I've periodically dumped out a bunch of it in the trash and yet the box has never gone empty. 

Even though Olivia doesn't have the extreme hunger YET, I find myself constantly confronted with situations now that I find stressful because I am so much more aware of food that I never noticed before.  Today at church really brought this home to me.
We go to church and there are candy dishes everywhere, filled with peppermints.  I can't get into church without fear that my 4 year old will have a screaming fit because she sees candy and wants a piece of it.  I want to tell her no, but I created a bad habit/expectation by letting her have one piece of candy when she comes in the door so I can speak in peace to the people around me.  If it was never there at all, I would have NO problem with her whatsoever, I could still speak in peace.  It's the temptation that causes a problem for my four year old. 

Then once in church, there are donuts at the back.  They are such a treat because we never buy them, and I allow her to have one donut before we sing for praise and worship time.  She constantly asks if she can have one more but always accepts the answer is no. 

I take her to her Sunday School class, and the first class that is her age rewards the kids with a small amount of goldfish.  I don't like it, but at least it's not sugar. 

I started going earlier, and last Sunday was shocked when I went to pick her up from her new class when I found out she had a paper bag full of candy and other goodies she "earned" by answering questions.  A sack.  Maybe it was 6 things, but when you need a sack to carry the sugar, I think it's too much.  The teacher told me it was a special class and that wasn't normal.  I didn't know ahead of time that is how things worked and it never occurred to me to ask.  I forgot between last sunday and this sunday and she went again to the early class.  When it was over, she came running out with more candy for answering questions correctly.  Only two pieces this time, but .... then the inevitable questions.  Can I have it?  Now?  If not now, then when? 

It's so frustrating because we're only trying to keep her a bit healthier and away from the national average of  122 pounds of sugar eaten yearly per person.

"As little as 100 years ago, it is estimated that Americans ate around one pound of sugar a year." (Dr. Scott Olsen)  Teens eat even more sugar than adults, and we want to establish healthy habits for her very early on. 

It will be easier to stick to what is healthy than to retrain her as an adult to not eat unhealthy foods... think of your own diets and food downfalls.

So all that is only the background for what comes next. 

It's everywhere.  EVERY. WHERE.  So pretend that you have a crack cocaine addict that is attached to you with handcuffs.  You can not go anywhere without this addict by your side.  It is your job to make sure that the cocaine addict behave him or herself at all times; use proper manners; use appropriate language and social skills; have appropriate hygiene; be pleasant and fun to be around. 

Everywhere you go, someone offers you some cocaine.  You don't have the same problems with it, so you just say no.  It's left on the counter in front of you in case you change your mind.  You open a book to read a story to your companion and there are pictures of cocaine everywhere, stories with long descriptions of how wonderful cocaine is as part of the storyline or even background plot.  Listen to the radio and you will hear whole programs on cocaine.... you get the idea.  All the while your companion is expected to not indulge, to control him or herself, to behave like a normal human being with no problems. 

Only it doesn't  happen.

How do you operate as a normal family around the dinner table, laughing and talking and preparing dinner together when you have to watch like a hawk what your PWS child is doing in the kitchen?  It takes a joyful, everyday event and creates a tension and stress filled one.  Even if you have a system in place, I would imagine how guilty I would feel knowing I won't be able to feed Olivia as much as she wants to eat.  It has the potential to create eating disorders in other family members that would never have existed otherwise because of the ritual/cautions needed around food of all kinds and the tensions that result from that.

How do you go for family vacations with your extended family?  How do you stay at houses that don't have food locked up?  Will I ever be able to visit my brothers or my sisters or my parents at their house again without stress of where she is at every minute?  How do I go grocery shopping when I have to take her with me?

Most of all, how do I balance my love of cooking with my oldest daughter (4 year old Amelia) and all that we will cook together in the future in shared companionship - creating an intimacy in that area that Olivia and I will never know together - without making Olivia feel left out and left behind?

Not only do you have to control their eating habits and calories, you have to control your own and that of your family.   You can't indulge in an ice cream sunday for dessert for the whole family when your child can only have 700 calories total for the day.  In order for your child not to feel left out or a burden or unfairly penalized, everyone eats the same thing; only you have a few more calories on your plate.  The food becomes much healthier but you will leave behind a lot of old family favorites and traditions.  You can't just swing into a restaurant or fast food place when  you are running late because the caloric content is too much for your child.

In the end, I think the intense stress comes from a variable that shows up in so many unexpected places, in so many unexpected ways, and yet is essential for both physical and social life.

I don't think I explained this very well as I read over this but I'm tired and done for tonight.  And I am so tired of seeing junk food and candy EVERYWHERE.  And a whole other rant.. why do we reward kids with food anyway??? ... saved for another time.

***EDITED TO ADD:  I've had so many comments, both public and private, on this asking to link to this page. You are welcome to link to it; thank you so much.  Please let me know where you link; I love to read other's blogs.  It helps to know it's not just me that feels this way. 

Listen for it!!

Every day my oldest says something cute and every day I forget what it was when it comes time to write it down.  Not this time, my friends!!  She had me and mom doubled over in laughter.

And yes, of course, it's potty humor.  So if you are like the pre-mom me and don't get the funny-ness of this, skip ahead to the next post. 

We're both talking as she runs into the bathroom and sits down.  All of a sudden she says, 'Shhhhhh, Momma!  BE QUIET" in a stage whisper.  I ask her why, and she says very dramatically, "So you can hear the PLOP", still in a very loud whisper.  I thought I heard something and wanted to get the heck out of there, so I said, "Oh, I hear it!" and started to head out the door.  She replies with disgust - "Noooo! That's just a bubble in my bottom!"

Everything Becomes a Therapy Tool

Olivia stood for 2 seconds yesterday and for 6 seconds today, barefooted.  She's 18 months old. 

She's fascinated by the open dishwasher.  When I'm loading it, I have to be very careful of where she's at - she'll hear it and crawl to it as fast as her legs can carry her.  Yesterday I had a blast watching her have fun pulling the clean dishes out of the bottom rack - they were simple plastic things like strainers, measuring cups, etc.  and laughing.

I know I should have stopped her, but I kept thinking, "THIS is GREAT therapy!!!"  She would pull herself to stand, reach inside and grab something with one hand, while barely holding on with the other.  She was shifting her weight from side to side and balancing her core.  The bottom rack would slide in as she leaned forward, so she had to figure out how to simultaneously pull it out, hold her balance and grab.  She reached for a whisk she really wanted and stood for two seconds putting both hands on the whisk before plopping down.  Today she grabbed the same whisk again and managed to balance herself while holding it for six seconds. 

Yes, I stood there and counted and waited for her to fall. 

It's amazing the development I took for granted in Amelia comes in so many tiny steps when you see it in slow motion, as I do with Olivia.

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.

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

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!

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)

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.

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

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.

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
Tiramisu
Wine

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

Spell Check

This post is for you, Barbara!

Surprise.
Exercise.
Definitely.

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.

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.

Exhausted

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.

Rising Kindergartener

Amelia goes to a Montessori school where she's in a class with 3-6 year olds.  At any given time in class, there are children quietly working away on math, art, history, geography, napping, reading, eating snack.  They work on an individual rug that is about the size of your standard outside door mat.  After they finish each work, they take it back to the shelf they picked it out from and go get another work to set on their mats.  They stay away from each other's mats, or work together on a project.  It's all very quiet and very productive. 

There are "works" available for each stage of development, and the children choose what they work on.  Amelia has been fascinated with being one of the kindergarteners since she saw them graduate on stage last year.  In her class, she can actually do kinder work if she chooses it.

Tonight they had a meeting for parents of rising kindergarteners for questions, and I found out that while she could choose the work now, she hasn't been.  She has stuck with the work that is the precurser for the more advanced work.  When I asked her why she hasn't tried something new, she told me that it was for the kindergarteners, not her!  I had no idea that she got that idea in her head. 

So on the way home tonight, I told her the meeting was to tell us that she could now do all the kindergartener's work and you would have thought I handed her the best present ever.  She was so excited and wanted to turn around and go back to school to do her work.  At home, she was jumping around and telling Grandma all about being able to do that more advanced work now.  I'm excited to see what happens with her.  I can't believe she was holding herself back!

On another (food related) note... I made a griddled sandwich for dinner tonight using Rudi's Rosemary bread.  Sliced a bunch of brisket I had made and frozen in chunks a while back, layered it on the sandwich with some horseradish cheddar and horseradish sauce and griddled the whole thing.  It was so good!  I had some Frogmore Stew for lunch.  All of this is still eating out of my freezer and pantry.  I have a long way to go to empty out all of it.

Before and After

The house smells so good every time I walk into it today - garlic, onions, bacon - too bad none of it was for us!  I often volunteer to cook meals for people who need them.  I'm on a committee at our church and also for the base I live on to deliver fresh, hot meals.  When our church does Family Promise, I volunteer for a shift and cook for them also.  I'm often making a bit extra and handing it out to whomever is stopping by that day - Sunday when I made corn chowder, we invited a friend of Mia's over to play and they stayed for dinner.  Sometimes its my friends, and sometimes it's the excellent therapists that end up walking away with a bite or two of some goodie.

Today I made a meal for a beautiful woman who has cared for Amelia and other children during church services.  I really wanted to be able to give back to her during a time of need.  I made sweet cornbread, collard greens, and more beans and sausage to drop off.  I never thought I would like collard greens.  I've had them a time or two and they just seemed so bland to me.  But it turns out with enough bacon and onions, along with a touch of garlic, anything tastes scrumptious.  I sweat those items first, then jammed the greens into the pot on top.  Sprinkle kosher salt, cracked pepper, and sugar and put the lid on to let them cook away.  I think most people add a bit of stock but the lid was heavy and they had their own liquid.  They probably would have tasted good with a bit of heat and some acid - like maybe some cayenne or red pepper flakes, very subtle; or garnished afterwards with a shake or two of tabasco and/or vinegar.

I also cooked up some pears for Olivia and hummus for home group (bible studies in someone's home).  I made another dip for home group tonight out of stuff hanging out in my fridge.  2 blocks of cream cheese, big handful of sun dried tomatoes, a jar of feta in oil (minus the oil), 2 garlic cloves, a tiny glad container (about 1/4 cup) of pureed basil from my garden a while ago, 4-5 black olives that were left over from a salad the other night.  It turned out great.  I think it would also make a great stuffing for chicken; or with some roasted red peppers and fresh spinach spread on a hot crepe and folded for a "crepe sandwich" would be YUM.

Every time I cook now, I think of Olivia.  Every.Single.Time.  It's an awareness I wish I didn't have; sort of like the first time you found out there wasn't Santa Claus.  I think to myself...  Does this have too many carbs?  How many calories are in this dish?  How can I keep the flavor and lose the calories? 

Will this be the last time I cook this?

No, actually it feels more like the way the world changed September 11, 2001. 

The world no longer felt as safe, happy and innocent as it had just seconds before, with the sick feeling that nothing would ever be the same again.  It's how my world changed when we got the PWS diagnosis.

Movies on a Military Base

Yesterday I took Amelia to see Yogi Bear at the Parris Island base theater.  We usually get movies here about a month or two after they come out in town - they play here on Friday and Sunday and at MCAS Thursday and Saturday.  Movies change each showing, so on Sunday it was 3 different movies starting at 2:00 pm.

It's very inexpensive to see a movie here, so I don't mind waiting a month... 
$2.00 - movie ticket
$2.50 - small popcorn, small drink, regular size candy of your choice
$  .25 - refills on soda

We ran into a bunch of our neighbors there (the theater is about 2 blocks away from housing) and Amelia found a little friend to sit and giggle with throughout the movie.  At the start of the movie, the National Anthem plays, and everyone stands up, faces the screen and is silent until it's over with.  This is actually one of my favorite parts.  Anyone who is active duty, in uniform or not, will stand at attention with their backs rigid, heads straight forward, arms at their sides with their hands in position.  When it's over, everyone sits down and continues on.

When was the last time you heard the Pledge of Allegience or the National Anthem outside of a football game?

Photos soon!

My camera charger found its way back home :)  I left it in KC on our Thanksgiving. 

I think I am going to try and eat as much stuff from my pantry and freezer as I can without buying anything else.  I just bought milk and cream cheese this week - on sale for .99, and with 30 cents off coupons I couldn't pass it up.  I really want to buy some to freeze but that would ruin my whole point in eating up the stuff I have.

Tonight I made corn chowder - chopped up about 4-5 stalks celery, two onions.  Threw them in a heavy pot (used Le Creuset tonight) with some butter and thyme and let them sweat for a while till they were bright and crunchy and delicious smelling.  Then I tossed in a big cooking spoonful of flour, stirred it around and cooked for a while to get the raw flour taste out.  When that was done, I poured in a bunch of white wine from my handy dandy box o' wine with the pour spout, stirred around and cooked out the sharp wine taste.  Finished it up with 7 small cans of corn, juice and all; a box of turkey stock (I didn't have that much chicken stock); and what was left of my pint of cream.  I think it was about half a cup.  Stir well, simmer for a while, season with salt and pepper to taste, puree half and pour back in.  TaDa!  Soup for the masses.  I'm going to freeze the extra.  All in all it ended up being about a gallon of soup.

Wholesome Baby Food

Wholesome Baby Food is a great site I stumbled across today.  Wish I had found it years ago.  You'd think, being a former Chef, I would have tried harder.  Still having teeny mommy guilt about that.  But honestly, it's more like mommy annoyance because I want her to eat more of what we are eating.

Fun with Food

Well, I might as well have fun with food while I still can. 

Yesterday I made Tuscan Beans and Sausage (white beans, garlic, onion, celery, carrot, sausage, seasonings) and some sweet cornbread.  I went all out and spread the cornbread with melted honey and butter mixed together.  Delish!  Olivia loved the beans and sausage, I didn't give her the cornbread.  My mom mashed it all up for her.

This morning I was thinking perhaps she loved it TOO much.  Diapers were a big change.  :(

A few new communication breakthroughs...

We've spent months trying to teach Olivia to do things that most babies learn pretty early.  While the specific process is slightly different for each "thing" we try to teach her, it basically involves us (my mother currently, my father when he was taking his turn here, the four therapists, myself) physically moving her body to do the "thing" over and over again; all the while doing the "thing" ourselves. 

If anyone has a better word for me right now than "thing" please comment.  It's 2am and I'm tired and literally at a loss for some words.

Months = Since she's been born.  Since before she could actually move any part of her body on her own.
We = we, the team of people- my fabulous therapists, doctors and family

Besides the obvious physical skills, we've also been working on social movements - waving hello, goodbye, giving kisses.  Over and over again, kiss the dolly.  Kiss, kiss, kiss.  We say the word, make the motion, bring her dolly to her face.  She's recently been bobbing her head toward the dolly for a kiss with her nose and sometimes with her mouth open.  I keep telling her she's not allowed to kiss like that until she's married.

Back to the breakthroughs.  Olivia has always had this connection with her daddy, even in the hospital when she wasn't too responsive to anyone else - but especially not me.  She would respond a bit more, slight responses that you could barely detect at first, but more as time went on and she became stronger.  Maybe it was just a blink, or a slight focusing of the eyes in his direction, or a twitch when he spoke.  Rafe was the first person to make her smile (when the smile consisted of the tiniest of upturns of her mouth), the first to get her to laugh.  She did those things very rarely, but when they did happen it was with him. 

This past week, Rafe called from Afghanistan and had some time to talk/play with Livie on the phone - not so many people waiting in line to talk at that time.  I put the phone on speaker and her whole face brightened up when she heard his voice.  She got this huge smile on her face and was reaching for the phone.  I assumed she just wanted to punch the buttons.  He kept talking and I said, not expecting a response, "Livie, do you want to kiss daddy?  Give daddy a kiss".   Rafe was telling her he loved her, asking for a kiss and (most important) making kissing noises in the phone.  She leaned forward, bobbed her nose on the phone and leaned back.  I thought it was a fluke, but we kept on doing it.  She did it 3 more times!  Each time I told her to give daddy a kiss, and he made kissing noises, she would lean forward to the phone to "kiss" with her nose; she held out her hands and brought the phone to her face like she would with her doll and deliberately touched her face/nose to the phone.  It all happened in slow motion because of her muscle issues, but it was amazing to see how purposeful she was. 

And... the significance of her recognizing his voice 5 months after he left is not lost on me.  Not just in a familial way, but in a cognitive, she's got brain function kind of way. 

Not quite as exciting, but still cool, is that she waved goodbye to me today.  It took a few minutes for her to process what she needed to do, but she finally did it in slow motion again. 

She also recognized her speech therapist and her OT this week and got very excited when she saw them, stopping what she was doing and crawling toward them immediately (for the ST) and leaning toward the OT when she was in my arms.  She actively seeks me when she is crawling around.  She will crawl to the feet of someone and slowly "climb" her arms/hands up your pant leg to indicate she wants you to pick her up. 

She's so stinkin' cute.

More on the baby food...

Yesterday I made roasted carrots and parsnips, forgot the ginger, but Livie loves them today. 

I also made a "loaded baked potato" - 2 heads cauliflower, 1 head broccoli and about 8 small baked potatoes mashed without the skins.  Pureed the veggies and then mixed it all together with some (GASP) velveeta cheese.  Hey, I'm all about using up what I have in the fridge.  I should have used cheddar cheese but I didn't have any and didn't feel like running to the store.  I didn't have time to put in ice cube trays last night, and this morning it was a bit stiff and very hard to spoon into the trays cold.  I have a 21" pastry bag left over from my culinary days so I just put it all in the bag and piped it into the trays.  It took less than a minute!

So today for lunch she had a cube of the potato mix, a cube of the carrots and parsnips, and some pureed blueberry applesauce.  It seems sort of strange to me that my daughter who will eventually eat everything is getting a wider variety of foods to try than my first daughter, who is now quite picky about food.  I knew better, I knew I should have exposed Mia to more stuff when she was a baby... oh well.  The crazy thing is that Amelia likes soft shell crab, smoked salmon/capers/cream cheese bagels, and shrimp.  The stuff she does like is expensive!

Baby Food

I am kicking myself for not making Amelia's baby food when she was ready for it.  I'm trying to remember now why I didn't; and I think it was a combination of things. 

She was my first baby, and I was SO particular about everything.  Rafe was still deployed; I was still working until she was 9 months old (she was in a daycare right down the hall from where I worked, so I still nursed her); I was tired basically being a single parent; I wanted her to have only organic foods, especially dairy.  As a matter of fact, she's only a few months ago had her first regular milk that wasn't organic.  I totally jinxed myself - she could taste the difference and stopped drinking milk.  She didn't even see the carton, she just told me the milk tasted funny and she didn't like it.  I finally had to switch back.

Since I was the only one who needed "real" food, I hardly ever cooked at home.  I just ate mostly fresh fruits and veggies and the food I cooked at work.  I bought Amelia's food, but the range of organic foods was limited in the area we lived in.  She never liked the taste of meat unless it was some concoction that had brown rice, beef and peas in it.  I don't blame her, I've tasted meat baby food and it's awful. 

The bottom line is that I didn't give her quite the variety of foods I should have when she was a baby.  I wanted to make her food, but for some reason I had it in my head that it was this arduous process with precise recipes.  HA!  I was so wrong. 

So now I am making Livie's food and having so much fun doing it.  It's so much easier than I ever thought.  For the most part, I just cook really good meals and then puree parts of them.  I've also recently bought some things just to make her different combinations of fruits and veggies.  I've been using my handy dandy ice cube trays (love those things!) for freezing them.  I freeze for a couple of hours, pop the cubes out and put in labeled freezer zip loc bags and fill them up again. 

One thing I've realized is how much I have been getting ripped off buying baby food.  To get that nice thin consistency that baby food stage 1 comes in, you add a lot of water to a small amount of puree. 

So far we've done:
Plaza III Soup
Beef Stew with Mushrooms
Garlic Roasted Chicken (added a bit of stock to this)
BBQ Smoked Turkey (the real smoked whole turkey, also added a bit of stock to this with the bbq sauce)
Pumpkin Applesauce (used up a bunch of apples hanging around and our Halloween decoration pumpkin)
3 Apple Sauce
Sweet Potato with Cinnamon
Butternut Squash
Peas
Roasted Root Vegetables (turnips, parsnips, rutabagas, carrots, celery, onion, herbs)
Corn, Peas, Carrots
Beans

I bought some carrots and parsnips and tomorrow I'm going to roast and puree them; pears were on sale so I'm roasting those; maybe some chicken and leeks I've got hanging around in my veggie drawer and needs to be used; cauliflower; collard greens; black eye peas and rice;  I might do something with spinach and potatoes...I think I might have some brown rice in the pantry.  I might even throw in some wheat germ or flax seed into some of the mixes. 

I've decided to cheat a little and look on baby food websites to get ideas of combinations also.  I don't bother with a recipe, just the main ingredients (like Sprout, Jack's Harvest, Happy Baby, etc)
It's so much easier than I ever thought.  Just cook, throw in food processor, blend.  Add liquid as/if needed.  Freeze.  That's the whole recipe right there.

Oh, you hate your job? Why didn’t you say so? There’s a support group for that. It’s called everybody, and they meet at the bar.”
~Drew Carey

How to know when your husband is going "outside the wire"...

He calls and tells you how much he loves you and the girls and to give them hugs and tell them that, and what time will you be available the next day for a phone call and ends the call.  The next time you check your email there is only a few sentences telling you again how much he loves you and the girls and make sure you tell them how he feels.

Oddly enough, he's really sweet when he's about to get in the line of fire.  :O

Just kidding.  I knew something was up because normally we talk about daily things and don't get too mushy on the phone.  I asked him if he was going outside the wire and he just said he'd call me the next day.  Today I found out he spent 9 hours with special ops forces on a foot patrol with all his gear on.  He had a great time and wants to go out again.  So much for the safe job inside the wire!

She finally realized she could move!

Olivia is 16 months old and she crawled, real crawling, the Monday before Christmas.  1 1/2 weeks later, on Thursday, she pulled herself to stand by the piano so she could start cranking out some tunes.  Kidding about the tunes part. She did bang away on the piano, though.   We think she was actually trying to get to the book on the piano, because she loves books and hunts them down. 

Friday, she pulled herself to stand again with the speech therapist and walked three very tiny steps from the therapist to the couch (with the therapist holding her hip for stabilization), where she cruised along trying to get to a book on the couch. 

Today, Saturday, as we were sitting here she pulled herself to stand again and tried to get some books off the couch to "read".  She then crawled over to me, tried to pull herself to stand again.  But she's in footie jammies, and her feet started sliding sideways until she was doing the splits while holding on to the couch all the while with her head vibrating with excitement.  Mom and I couldn't stop laughing.  Is that so wrong??

A few minutes later, she had crawled over to the diaper bag, pulled everything out of it and then took off down the hallway dragging the diaper bag on her foot.  Then back to the play area, where we heard a big THUNK and looked over to find she had dragged the small grocery cart onto it's side.  She rolled over on her back, put it on top of her and kept lifting it up and down.  I tried to get it all on video but my camera battery went dead as soon as I started.  I can not believe the things she is doing now!

Funny little girl

Amelia says the funniest things, and it's often not exactly what she says but HOW she says it that makes it so funny.  Tonight I was combing her hair and telling her to hold still so I could get the rat's nest out.  She asked me, in all seriousness, "Mama, why do the rats keep building nests in my hair?" 

Extended Christmas Holidays

Since Rafe is in Afghanistan, we went to Camp Lejeune to spend Christmas with some dear friends and their two boys.  We wanted to be a part of a full, noisy household on Christmas, and it has been wonderful.  As my mom commented, "For a house with four kids in it, it sure has been nice and quiet".   The kids were noisy, but the well behaved, fun kind of noisy and not the screaming, fighting kind of noisy. 

As luck would have it, we were only going to stay for a few short days and come back.  I had some big plans for getting the house ready for the New Year, and some goals I wanted to prepare for both mentally and physically.  That will have to wait for something far more important - my friend is having her 3rd child via Csection and she's pretty high risk.  Her mom won't be with her until next Monday, so I am staying to help until then.  Mom went back with the van and Olivia so she could continue with her therapies, and I am taking one of their vehicles back to PI with Amelia on Sunday.

If you are reading this and we had tentative playdates lined up, I am so sorry.  I left my contact book at home.  Amelia was looking forward to spending time with all her little friends from school and the base.  She's still having fun here (even got to make a snowman). 

Moving at the speed of light

Somehow I missed posting this, although I wrote it last week, two days after Olivia started crawling.

Today Olivia discovered: trash cans, the blinds, paper sacks, filing cabinets with doors that open, computer wires and vaccuum cleaner cords. I never thought things would change so fast! I need to childproof in a hurry.

Who knew I would be so tickled to see my child getting into things?  I should tell her NO and teach her not to, but I'm wrestling with being so excited at what she can do.

She also tried to stand up and look out the window... but I really think she was trying to play with the blinds again.  She found some blinds that went all the way to the floor and got herself tangled up in them.  Every time I turned around, she was missing.

I loved every second of it!

Observation

My husband and children thrive on schedules, organization, predictable routines. 

Unfortunately for them, I seem to be constantly overcome with bursts of  random spontaneity.

WE'RE FULL ON CRAWLING!!!!!!!!!!!!!!

I know I've mentioned somewhere that Olivia had started the beginning stages of a crawl probably around October sometime.  She first looked like a mermaid - doing the crawl with her arms and hands but motionless from her waist down.  It slowly evolved into a very flat commando crawl, and from there into a more active commando crawl.  The steps have been excrutiatingly slow.  But now... HOUSTON! WE HAVE A CRAWLER!

Every day we'd work with her on her "all fours"... putting her in position over and over again, with a hand under her core to support, and at the same time try to move her hands and legs in the right sequence.  Our PT explained to us that we needed to create the neural pathways for the right movements long before she could do them herself, and the more we did that the easier it would be for her to crawl.  And to be honest, I would have to say that it was really my mom who did the majority of this PT daily as I often took care of other things. 

When we went to Florida to see Dr. Miller she prescribed carnitine for Olivia.  It was something I'd asked about and it seemed it was time to add that supplement.  She began taking it on a Sunday, and she crawled Monday 3 times ON ALL FOURS, about 2-3 feet each time at her morning PT session.  One of those times she had a choice to crawl to a toy, to mom or to me.  She hesitated and thought, looking back and forth, and then deliberately started off toward me very slowly. Then later in the afternoon, she crawled about 5 feet from her area over to Amelia's play area.  About an hour later, Amelia and I were both in the kitchen at the same time and all of a sudden Amelia started shouting, "Look, Mama!!  Livia is crawling! LOOK!"  I look up and see Olivia has crawled from the living room to the kitchen to hang out with us. 

Today she has been crawling everywhere.  It's like she finally realized she could get out past the area where her therapy and toys/tools are. 

Carnitine seems to have sharpened her in the way an out of focus camera suddenly sharpens; the change is hard to explain but definately there.  She has more energy, more tone, like a light just switched on.  I don't think the crawling is just the carnitine, but I do think it had a lot to do with pushing it to finally click.

Not only is the crawling a big deal, but I have to say this...

SHE CRAWLED TOWARD ME!  memememememememememememeeeeeeeeee!!!!  and then she wanted company and crawled toward us in the kitchen when she was surrounded by endless amount of new toys!!

To put this in perspective:  For over a year, my child has shown very little particular preferences for anyone or anybody, with the exception of my husband and men in general.  She seemed to be slightly more active and alert with men.  She didn't cry for us, have seperation anxiety, show likes or dislikes with any great intensity.  We could sort of gauge now and again how she might be feeling by her very slight reactions, ones that most people would most likely miss.  She has never held her arms out toward me or in any way indicated that she knew I was her mother other than recognizing my voice and briefly watching me if I was talking and entering a room she was in.  When she was sick over the Thanksgiving holiday, she called my name one night, slowly and one time.  It sounded deliberate, but I still couldn't be sure.  Not only does she have PWS, CAI and temperature dysregulation to deal with, she was 2.5 months premature with a very traumatic birth.  I'd be lying if I said I haven't wondered about her cognition. 

Today we had more great news - we received our 1 year evaluation from EDIS (Education and Development Intervention Services).  She is now 16 months old.  Olivia scored in the middle of the normal range for her adjusted age in cognitive skills, and below normal for all others, especially motor skills.  Susan told us that it wasn't a predictor of the future or commentary on the past, just where she is currently.  But currently, she's NORMAL cognitively!!!!!!!  Again, a huge worry lifted off my mind with the apgar scores of 1, 1, and 4; 30 minutes of CPR and 3 chest tubes for collapsed lungs immediately after birth.  We've never been able to ascertain how much oxygen she lacked for how long during that time.

My daughter knows who I am.  And she prefers me to a toy :)

Hallelujah Singers

We spent today at home - Amelia's cold is worse, but Olivia seems to be holding her own.  So far no fevers, so I'm hoping it's just a simple cold.  Olivia is faintly rasping a bit when she breathes; and if it gets worse tomorrow I'll take her in to the doctor to check for RSV.  She had her RSV shot at the beginning of the month so I'm hoping she'll be ok. 

This evening everyone seemed to be feeling better, so we headed out to a free concert by the Hallelujah Singers held in a small church in downtown Bluffton.  I've been pretty proud of myself for finding so many wonderful free things to do during the holidays this year with the girls.  The church itself was beautiful - enormous stained glass windows blazing with light.  Coming upon it reminded me of a picture postcard of an old fashioned church in the snow, with the beautiful stained glass colors illuminating the night. 

The church was packed, and it wasn't a large one.  The singers were maybe 2-3 feet away from the pews.  Mom and Olivia were able to sit toward the front; I sat a little further back with Amelia.  From that vantage point, I could see Olivia literally vibrate with excitement when the music started.  She seems to have a particular affinity for live music and does the same thing when she hears the praise and worship music at church.  She was standing on Mom's lap, with Mom holding her up - I swear it looked like she was dancing!  She was waving her arms around to the beat and bouncing up and down with a big grin on her face.  She does the same thing when she is really excited.  She would get a bit tired, collapse and snuggle for a bit; then pop back up again when the beat picked up.  She really likes the Gullah beat the best; just like she really loved the marches the Parris Island Brass Band played. 

Amelia had a bit rougher time.  She is usually good at these sort of things, but this month we've been to 3 events where she lost some self control about halfway through.  I think we're up just a bit too late and it's hard for her to hold it together.  But all in all, I love taking them places.  This in particular was something she probably won't ever get a chance to see again.  They travel all over the world and the musical style and storytelling are unique to this area.  The Gullah accent itself is very rhythmic - when the Gullah Geechee speak, it often sounds like they are singing when they are talking.



Here is some more about the Hallelujah Singers:

The Hallelujah Singers

A vocal group from Beaufort, founded 10 years ago by Marlena Smalls, the Hallelujah Singers seek to preserve through music the Gullah heritage, rooted in West African traditions and language, and brought by the slaves to the Sea Islands of South Carolina and Georgia. The Gullah language is Creole blend of West African and European dialects, developed in the isolated plantations of the coastal South. Most of the Gullah vocabulary is of English origin, but grammar and pronunciation come from a number of West African languages, such as Ewe, Madinka, Igbo, Twi and Yoruba. The slaves' knowledge of rice cultivation, a crop that had been grown in the West African region since 1500, made them desirable to the plantation owners of the South Carolina Low Country where rice had become a staple crop. The plantation owners, seeking the comforts of their city homes, often left the day-to-day operation of the plantations to the overseer or foreman, causing these isolated plantations to be much less influenced by Euro-American culture and allowing them to retain their "African-ness.

Smalls developed and refined a series of concerts to define the Gullah culture and the "Sea Island sound." Her goal was to preserve the melodies and storytelling technique of the South Carolina Sea Islands. Interwoven with music and narration, the singers present miniature dramatizations of some of the unique personages, rituals, and ceremonies that played an important part in shaping the Gullah culture. Among the Hallelujah Singer's repetoire are traditional plantation songs dating back to the 1600s. The group consists of five singers and two musicians, playing strings and conga drums. They have recorded three CDs. The first, "Gullah - Songs of Hope, Faith and Freedom," produced in 1997, features plantation melodies and spiritual songs. In 1998, "Joy - A Gullah Christmas" was released, and finally, in 1999, the latest CD "Gullah - Carry Me Home" was produced; it is the first to be nationally distributed. Performing at youth recreation, community, and senior citizens centers around the country, participating in various music festivals, and providing educational outreach for students in South Carolina and Georgia, the group has earned a number of awards, including the South Carolina Folk Heritage Advocacy Award, the Alpha Kappa Alpha Community Service Award, and the South Carolina Humanitarian Award. The Hallelujah Singers have performed in concert worldwide, and have appeared in television documentaries and the motion picture Forrest Gump. They have also performed for the United States Congress, Hillary Rodham Clinton, and South Carolina legislators. In the fall of 2000, the group will give a concert at the Kennedy Center in Washington, D.C.

Hoping for an uneventful week...

One of Amelia's little friends came down with Strep Throat this past week, and two days later both my girls are showing signs of being sick.  Mia's throat hurts and she's congested, and Olivia is congested.  I'm hoping it's a simple cold and not Strep.  Especially right before we are to travel to Jacksonville for Christmas!  We spent this rainy, cold day inside watching movies from the library and lounging around.