Oh Cute.... You have 3 girls

OK seriously. I know my girls are cute.

Kisserbella: She has a magnetic personality. Seriously. We can't go ANYWHERE without someone stopping to say hi to her, touch her, flirt with her. Seriously. We are frequent visitors of Costco and we always see the same manage and she is always making googley eyes at him. Women respond to her in the same way. She has the best smile that just takes over her entire being. She just has a glow. It is like she is telling you a story through her blue eyes and infectious smile. She can say a thousand words without saying a thing. I think she knows more than I. I truly believe that she can see Daxton, that they carry on conversations, and that my friends, is why she is so enchanting and irresistible

Bikenna: Well who wouldn't follow her around. She is my big helper. She unloaded all the groceries and "payed" them at the grocery store. ALL OF THEM. Seriously. I know. Long gone is the little girl. She is my big Kenna. I can't believe it. She is the mother of us all. She keeps order to our home.

Sawannah: Must say "hi" to EVERYONE. I mean everyone. She knows their name, first and last by the way, what they are doing, how many kids they have, if they have a dog, and where they are going. All this within minutes. She is friendly, nosy, and loves to meet new people.

So we go to the grocery store with all the personalities balled into one cart. Kisserbella in the front (of course), Mikenna driving the car (you know the obnoxious carts with the cars that take up most of the isle, turn all over, have no control, and the kids fight over who is going to sit where? Yes that is the one), and Savannah holding onto the cart (with the threat that if she lets go she is going straight into the cart.

Savannah was filling up the car with gas, loading it with groceries, and just plain being the runner girl for Mikenna (sound familiar?), Mikenna ordering Savannah around to get her groceries, put gas in her car, taking her order, etc. All the while Iserbella is in the cart making googley eyes at EVERYONE!!! I am not kidding. And then there is me. From the outside looking in: 1 mom, 3 girls. Going crazy shopping. Some might think it was chaotic, but the girls were having a ball. They like nothing more than to "pay." (play store with scanner and all, which by the way we have two of).

No one is more excited to go to the store and "pay" than my two girls and no one was more excited when they came out with the self checkout than them either. It is like a dream! We went up and down the isle, me loading up my cart, and Savannah filling up the space in the car where Mikenna was sitting with MY groceries. Hilarious.

Then we get to the checkout stand where I meet a long time family friend whom I haven't seen for years. He thinketh I have time to talk... all the while Mikenna has talked me into using the self checkout (I only concede because the regular checkstands have at least 10 customers in line with 2 full carts each and lets face it, I just don't have that much patience) Savannah has talked the sales lady into emptying our groceries into her hands, which she then places on the "moving thing" so Mikenna can scan "pay" the groceries, Iserbella is making googley eyes and I am just praying that I don't end up buying everything twice. Maybe it was because I had 2 hours of sleep after working all night, but I just didn't even care!!!! And if you know me, being uptight is not an uncommon occasion.

So we finally finish our little assemble line, the friend eventually lets me get back to my "checkers," and we are ready to pay. Savannah wants money to come out (change: but seriously when was the last time you paid cash and got change back) and Mikenna has called dibs on the grocery receipt (I have to tell Savannah that the coupons that printed out are also the receipt.... but alas, she is too smart, luckily she is side tracked easily :)) and I have to show my license to the real checker lady.

She drops it into a hole. A deep dark hole at that. SERIOUSLY!!!!! SERIOUSLY!!!!! HAS SHE NOT WATCHED ME THE LAST 30 minutes????? ER!!!!! FOR REALS!!!!!!!! I can't even believe it. Luckily, as aforementioned I have only had 2 hours of sleep and could really care less (except that my spending habits will be haulted much to my dismay, but not my husbands :)) SO I do my best, remain patient and eventually pry my credit card from the deep dark hole.

And so ends the trip to the store.

The only problem is the comment 3 times no less "oh cute... you have 3 girls" the last one added "and no boys." OUCH. I know I have 3 cute girls, but it doesn't make up for one boy I don't have..... Today I missed him. A.L.O.T.

Savannah and PWS: the horrible, honest to goodness truth

Some of you have asked about Savannah.... well here ya go :)

Savannah was born on November 1. I was 21 years old. VERY young by most standards. Ok all standards, but that is old compared to the babies I take care of. She was initially diagnosed with Russell Silver Syndrome. There are many traits and characteristics and I will only list those of Savannah. She was tiny. They call it IUGR (intrauterine growth retardation). They told me it was nothing that I did. That was comforting. She has her left side shorter (and smaller) than the right. You can see the physical mostly. She has a shoe lift about 9cm and brace on her left ankle to keep her from falling and breaking it. She has low muscle tone and tires easily (you would NEVER know this if you have seen her in 'action.'

She learned to roll over at 9 months, sit up at 12 months, stand at 2 years, and walk with a walker at 3. She shed the walker at 4.5 years old and has been moving EVER since. She had her first surgery when she was 6 months old. And has since had 3 others.

When she was about 4 years old, she was diagnosed with Prader Willi Syndrome. It is the UNCONTROLLABLE UNSATIABLE desire to eat. There are other characteristics, but this is the main one. Not only are they ALWAYS hungry, but they burn less calories because of their low muscle tone. So NOT only is she on a limited diet, but she gets 70% the calories that other children her age get. Sounds fair right? One might think that it would behoove someone like Savannah to hit the nearest buffet and load up. Truth is, PWS children and adults have been known to eat themselves to death. Literally. Their hearts, guts, and overall body just can't take it.

Typically it is late diagnosed and by that time the kids are too old and too overweight. Not that it can't be fixed but it is VERY hard. Trust me I did it and it was torture for us all and she was only 4.

What does this mean for us? We lock our pantries, my mom, my aunt, me. There were times when we would wake up in the middle of the night and find her scooping ice cream, cool whip, popsicles, anything she could find. She didn't even realize what she was doing until we found her, but she was shoveling food in like she would never see another bite. This sets us back LOADS of calories when she does this because I have to make up for it by decreasing her already LOW calorie diet.

I have gates up in my hallway to my bedroom and from their bedroom, that way they can only come into my bedroom. I had to do this because I would find her doing random impulsive things (very common. the impulsions for PWS) like emptying ALL my lotion (really it was like 10) onto the bathroom floor. Opening all the toilet paper (from costco) and then unraveling it all over the floor, painting my bathroom walls with nail polish, and oh did I mention buzzing her hair? And she was 6.5 years old when she did all this.

This is all to be blamed on the PWS. Really. She isn't being 'naughty' per se, it is more the uncontrollable impulsiveness and not enough will to stop. When she is caught, she feels terrible, but sometimes she just can't stop. This is the maddening part. I can't get TOO mad at her, you know like slap her silly or yell because ten minutes from now, she isn't going to remember what you are mad about.

Back to the food. There can't be one morsel ANYWHERE, gum, candy, crumbs, food. ANYWHERE. She will sniff it out, find it, and eat it. No exceptions. I don't know how she does it. So all food is in pantry and fridge under lock and key. NO EXCEPTIONS. After each meal, the food is cleaned up, dishes done (because she will see if there is anything in the sink) within minutes of finishing. There is no food in any bedrooms of any house she visits regularly. We have certain snack times and meal times and if there is any wavering, the day is shot to you know where.

Thing is, Savannah is NEVER full. Despite the large plates of fruits, veggies, low carb items that I feed her. NO amount of food is enough. She is NEVER full. Someday this will be a big problem for me. Some PWS kids are not uncommonly found sneaking out the window to run to the local grocer and get some food. It is not uncommon they will do favors for people in exchange for food. I have to know where Savannah is at ALL times. Not a minute goes by I don't know exactly where she is and exactly what she is doing. Did I mention that NO amount of food will fill her up? NO AMOUNT. She goes to school 'hungry,' she goes to bed 'hungry,' she leaves the table 'hungry.' ALWAYS. She always will. It is the fact of her life.

It is the most horrible, awful way to live life. I have been hungry and it sucks. To feel that way all the time because me brain is broken in that area? I just don't know if I could bare it. One might ask is the appetite suppressants work or if there is some special "yoga" to do to decrease hunger. NOPE. NOTHING. The part in the brain that says you are full is broke. BROKEN. Someday (hopefully never) she will have to be put in a home where PWS adults live. Where they lock all food away. Where they have to lock all the doors and windows. Just to keep them safe. I hope it doesn't come to this. But one day it might.

Life: what a ride

I can't believe I have a kindergartener!!!! That makes me OLD. But what really makes me old is that I have a second grader. The first day of school went well. The kids met their teachers the other night and LOVED them. I was nervous for Mikenna, new school, new class, new friends, new bus. But Savannah took care of her. She sat with her on the bus. She said "hi" to her at lunch. She gave her a hug at recess. She was the big sister today. It. was. awesome. She doesn't always get that role.

Babies grow up way to fast. I hold Isabella and kiss her and cherish her. I spoil her rotten. I carry her almost anywhere. She is almost attached to my hip. When I drop her off at the gym, I have a hard time leaving her there for an hour. Seriously. I know.

I don't take my precious little gems of girls for granted either. I am grateful for every successful swimming adventure. I am grateful for every morning we all wake up. I am grateful that I have hair to do and clothes to buy (and wash) for my little ones. I am grateful for their health (mostly). I am grateful for each time I leave them and come home to their smiling faces. I am grateful every time I see Isabella's smile, or laugh, or cry. Nothing is missed (ok. maybe.)

I am grateful for their kisses at night. I am grateful that I can hear them play or fight or ignore each other. I am grateful that when they get off the bus they have been safe. I am grateful for every car ride that goes without incident. I am grateful that when I get home from work, I can see Isabella's pinchable bum and kissable cheeks awaiting my arrival.

I just can't believe they are getting so big. And that I have had them all this long. Sometimes I have to look around and realize that there are families who have all of their children. Most of the time this is a conscious effort. Just like when Mikenna was born, I thought to myself, babies suck? on a boob? on a bottle? They actually eat? They don't eat from a tube? They don't blow up like balloons because the doctors tell their mothers to keep feeding them? It was and continues to be a whole new experience. Life.

It is always a new adventure. Every day. And for that, I am grateful.