Making memories one day at a time.......and then I write about it.

Wednesday, August 12, 2015

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.  


  1. Honestly, Rachel - even though I feel so lucky and blessed to be where we are when we are, to have the beauty and wonder around us that we do - even in the face of peace and safety and all the lovely things = lately, I feel like it has been raining small bricks. And like one more thread gets pulled out of my courage every single day. We will make it through. We have a support group that is awesome. And in the end it will all be fine. But just now - just now - it's sometimes just dangnable tough going.

    1. It is. It is hard. The last week, I've felt raw. And alone. It's a nutrition thing. I'm the one who cooks the meals, has to worry about the food, how many calories, how to handle situations when there is food present that Levi can't eat, how to ward off storms before they happen. I'm overwhelmed with it all. I think after I meet with the dietitian and ask my gagillion questions, things will settle down. I wish I could see what this looks like in real everyday life in other households. In the meantime, I'm muddling through as best I can. That's all any of us can do really..........

  2. Oh, Rachel, go ahead and grieve through this transition time, but know that it won't always feel so hard. On a very much smaller scale I've been feeling a similar way. One of our new children (did you know we just had 4 children placed with us for adoption?) has severe eczema. It doesn't seem life-threatening, but left untreated he gets infections that could kill him. This means we are busy administering meds orally and topically 3 times a day. It takes 15 minutes every time--which isn't a big deal until it is three times every. single. day. And there are 11 other children needing my attention and meals to make and clothes to wash and . . . Anyway, sometimes I feel suffocated. I know it's not really the same thing, especially because this little fellow will be able to take care of himself one day, but I guess I just wanted to say I understand . . . at least I think I do.

    And I definitely understand the difficulty of having to control someone's diet in the world all around! It is SO HARD! You have all of my empathy over that issue.

    1. Anaise!! No, I didn't know your family had grown to 11. You amaze me. You truly amaze me and yes, applying meds three times a day would get old soooo fast!! What an angel you are! That suffocated feeling. Yes. My prayers to you. Oh that we lived closer to each other..... how many times have I said that before?? You need to move here to our area so we can help with your little bundles! :)


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