Time Management

Today, The SM, Levi, and I met with a dietitian from Primary Children's Hospital.  The appointment was one I have been looking forward to ever since we heard the words, "Prader Willi Syndrom" three weeks ago.  Has it been three weeks?

I have felt like I have been shooting in the dark in regards to what Levi can eat, what he can't eat, how to manage public situations, exercise, a target calorie count for the day, target weight loss, etc.  Help!

I have been counting down the days to today for answered questions.  So many questions!  The visit went great.  These last three weeks have been incredibly hard.  Hard in trying to figure out what to cook for dinners, what to put together for school lunches, what snacks in between that Levi needs because he needs to eat every three hours, and how much daily exercising.  To say this has been consuming my thoughts and actions for weeks is an understatement!

But, it's been worth it!  Today, Levi weighed in and in the last three weeks, he has lost seven pounds!  Go Levi!  That part is wonderful news.  I'm now left with more dilemmas and questions though.  The biggest being, time management.  Anytime you have a child with special needs of any sort, they require more of your time.  Levi already has taken a lot of my time.  Now, he's taking even more.

I told The SM that I feel like I am feeding an infant again.  Levi needs a meal every three hours.  The difference is that instead of hooking him up to the ol' "dairy bar" me I have to prepare a meal/snack for Levi every three hours.  On top of that, I need to make sure he is exercising everyday which means long bike rides or walks or visits to the pool.

Here's the concern/worry.  The other natives.  They need time with mommy too!  So, more to figure out.  I know once I get a schedule of monthly meals put together that things will get easier and we will get into a pattern.  In the mean-time, all of my flowers that require me watering them by hand have died, the bathrooms haven't been cleaned in a day I'm lying it's been way too long, laundry is piling up, the training of Henny Penny's dog hasn't happened, yet.......  my house looks like me, a mess!

So, bottom line.  What we are doing with Levi as far as food and exercise is concerned is working wonderfully.  Now we have to figure out how to make sure the other natives get their personal time with mummy too!

Don't you just love how answering some questions leads to more questions??

Cauliflower. It can be edible!

In my quest to find foods that are healthy and that Levi will love, I was told to check out this recipe (click here to see recipe) for Cauliflower Pizza.

Cauliflower Pizza?  Are you kidding me?  I don't like cauliflower.  I know.  Big surprise.  It's a vegetable!  And, it's gross.  I did NOT want to taste a 'pizza' that tasted like cauliflower.  But, Levi absolutely loves, adores, dreams about........ you get the idea.  Pizza!!

So, we tried it.  And......... it was really really good!!  I did what the recipe said and squeezed the living daylights out of the cooked cauliflower.  I mixed in the seasonings, eggs, and cheese.  Cooked it for about 30 minutes in a 450 degree oven.  I wanted the crust to be nice and crisp.  I then added pizza sauce, salami, red and yellow bell peppers, onion, and bacon.  I turned my oven up to 'broil' and keeping the rack in the middle, put in the pizza to cook the veggies until they started to get little black edges.  I then added more Mozz. cheese and put it back into the oven just a minute or two until the cheese melted.

Oh my heavens!  There is actually a way to eat cauliflower besides smothering it in Velveeta cheese! And!!  The natives liked it and more importantly!  Levi liked it!  Success!!

Closet Eaters

Closet Eater:  An abnormal eating behavior in which a person binges on food when alone.  Closet eaters usually eat normal meals in front of other people, but when alone, the binging begins.  A closet eater sneaks foods and hordes goodies in a bedroom, car, or other secret place.  

Closet eating.  Every father or mother knows that it is a right of passage!  When one needs a treat break from the natives, one goes into their closet and eats some chocolate takes a deep breath and regroups.  It's a very select group.  We take our membership very seriously.

I'm a horrible mum!  I've broken the code.  This is a parents only group!  One must go through the initiation of parenthood to get into this group.  There are laws I tell ya!  Laws for a reason!!  I broke them.  I hang my head in shame.

Because Levi is on such a strict diet of what he can and can't eat, we all have to be strict with him.  It's not fair to eat donuts and cookies and ice cream and truffles and brownies and candy and chips and crackers and scones and could you hold on a second?  I need to go in my closet for a minute.  Just typing this has made me realize I need to take a break for a minute.

Phew!  Okay, I know I said a minute but a minute turned into a nap.  Yes, I was napping that whole time in my closet!  Who's asking?????

Anyway, as I was saying. One shouldn't eat things in front of others who can't.  It's just not nice.  So, in the argument of being kind, I've divulged the secret of the closet society.  I know!  I'm sorry!!!  What's a mum to do??  The other natives were starving I tell ya!  They were having with drawls and foaming at the mouth!  I had to do something.

Yesterday, Levi was at a friends house.  I was craving some sanity.  Oh was I craving it big time.  Over the top big time.  I climbed up on top of my island and reached far back into the cupboard above the fridge and grabbed a sugar cone.  It wasn't good enough to just sink my spoon into a tub of ice cream and eat out of the tub.  Ohhhh no.  Yesterday, I wanted a big double decker ice cream cone with fudge on top.  Levi was gone!  I could!  I could sit in my kitchen and indulge myself!  So, I did.  I also scooped a bowl of ice cream for Henny Penny and how we relished those first bites.  And then....... we heard it...........  the front door.  WHAT?!  HOW THE?!!  IT CAN'T BE!!!!  HE'S NOT SUPPOSED TO BE HERE!!!

I put on my super sneaky hero suit and flew across the kitchen!  Ripped the bowl of ice cream out of Henny Penny's hands, slammed my ice cream cone into the bowl on top of her ice cream, (had a silent sob, it was a beautiful cone),  yanked open the freezer door, and hurled the bowl of ice cream with my cone into the back of the freezer with a slam of the door shut.  Levi walked around the corner and asked, "Watcha doin"?

Oh nothing honey!  Just teaching your sister to hide and hoard food.  Just giving your sister one more thing to work out in therapy as she gets older.  More bad habits!!!

One doesn't want to waste one's money or the therapists time so I am giving them plenty of things to work on!

Dear Natives,
You're welcome

Love,
Mummy

The End!

Prader Willi Syndrome and Levi

I am going through all sorts of emotions today.  Yesterday I had a good cry and then wondered why in the world I was crying!  Nothing has changed.  Levi is still Levi, right?!  Another label. Something else to worry about.

I took Levi to the doctor for a routine physical and his latest immunizations required by the schools to enter Junior High.  The doctor wondered if Levi had ever been tested for Prader Willi Syndrome.  No.  Why? After the doctor's suggestion that I go home and look it up, I am quite convinced that Levi does in fact, have Prader Willi Syndrome.

Prader-Willi syndrome is a complex genetic condition that affects many parts of the body. In infancy, this condition is characterized by weak muscle tone (hypotonia), feeding difficulties, poor growth, and delayed development. Beginning in childhood, affected individuals develop an insatiable appetite, which leads to chronic overeating (hyperphagia) and obesity. Some people with Prader-Willi syndrome, particularly those with obesity, also develop type 2 diabetes mellitus (the most common form of diabetes).

People with Prader-Willi syndrome typically have mild to moderate intellectual impairment and learning disabilities. Behavioral problems are common, including temper outbursts, stubbornness, and compulsive behavior such as picking at the skin. Sleep abnormalities can also occur. Additional features of this condition include distinctive facial features such as a narrow forehead, almond-shaped eyes, and a triangular mouth; short stature; and small hands and feet. Some people with Prader-Willi syndrome have unusually fair skin and light-colored hair. Both affected males and affected females have underdeveloped genitals. Puberty is delayed or incomplete, and most affected individuals are unable to have children (infertile).

It's as if these two paragraphs were written about Levi.  Excepting the light hair.  Pretty much everything else applies.  So what now?  The usual.  At first, it's just information.  Okay.  Deal with it.  Then it slowly starts to sink in and I find myself emotional and crying not understanding why until I talk it out with my baby sister.  It's another big thing to absorb.  It's no longer, "Levi has a weight problem".  It's a life threatening weight problem.  On top of the AHC that he already has!  And the way we do things, the food we eat, all of that has to change.  Drastic!  Huge!  It's overwhelming and I've no idea where to start!  

A dietitian with Primary Children's Hospital is going to work with me.  I have to keep taking big breaths and reminding myself that this didn't just happen in a day.  Levi will be okay if we work into this.  Yes, we need to be aggressive and make huge changes but it doesn't all have to happen today.  

I start to print all the information I can get my hands on from the Internet.  I'm pouring over papers trying to get ideas and suggestions.  I'm brainstorming thinking about what will work for Levi.  I keep praying asking for guidance and inspiration and I am writing down my thoughts and taking notes as the inspiration comes.  

I think the biggest thing I am worried about is the emotional toll this is going to take.  Not just the hard work to put this all into place, but the emotional.  Having Levi crying and telling me he is hungry and wants more to eat and not giving in.  He doesn't understand.  He doesn't feel full.  I already deal with this and I've always given in and given him what I thought were healthy alternatives but from what I am reading, I won't be able to give him in the future!  Even healthy isn't necessarily healthy for Levi.  

If Levi didn't have siblings at home, this would be a lot easier.  Their lives are going to change too.  Everything will need to go into a lock down and anything Levi can't eat, they'll have to eat in private where he can't see them.  Do you get the magnitude of this?  It's not just home.  It's at friends houses, school, church, parties.  How does one do Thanksgiving?  Levi can't eat a lot of what everyone will be eating.  We can't live in a bubble!  We can't seclude ourselves.  These are things I have to figure out because it is no longer just a weight problem.  This is Levi's life on the line.  

I have no idea how this will all workout or come into play but I do not doubt that it will.  I have faith that it will.  Levi lived with our Father in Heaven first before he came to The SM and me.  He knows Levi best and what Levi needs.  I know He will continue to guide us and help us find our way on this journey.  In the meantime, there are tears still to shed.  It's a process.  Grieving.  And that is okay. There's always a rainbow after the storm, a beautiful thing.