Monday, February 28, 2011

Little Bit 'A Random

I read another blog, where the author does "stream-of-consciousness" posts...I'm going to try that, sort of!

-WHAT A LONG FREAKIN' WEEKEND!!!  In what has probably been the loooooooogest month of February EVER!  Oh my gosh, people.  I know, I know, the stereotype is that everyone looks forward to their weekends, and everybody loves snow days, and Valentine's Day is just a big 'ol Love-fest for the whole world.  Well, not so much, not for everyone!  We've had two big storms in my area in the very short month of February, which means lots of shlepping through snow, shoveling the driveway umpteen times, branches getting weighed down with ice and breaking off.  Plus three snow days, yippee.  If you know me at all - and well, some of you don't, so let me just say I am not big on playing in the snow.  I am also a slacker mother, who (gasp!) neglected to buy snow-worthy boots for K, you know, way back in JULY when the stores were actually stocking snow-worthy boots.  So not only do I feel like a terrible mom because I don't jump for joy at snow days, but also because I stupidly am not thinking about snow boots in JULY, when they for some reason are on the shelves in the stores.  So, K is not really able to play in the snow, so alas, we are at least one of the lawns on my block lacking the cute snow-people.  Bad mommy, bad mommy!
-and, don't get me wrong, I love my kids, my husband is a great guy, but it's been all of the house (and snowed in on Friday)....ALL WEEKEND.  Whatever part of the brain it is, that needs people around for company, is
So, y'all can go on back to work, back to school....I'm good.  I'll be here at 3 p.m./7 p.m., when you get home.  K'thanks.
-a little edit - Valentine's Day was actually decent, here.  B snagged tickets, from a co-worker, to see "South Pacific". 
-My husband, being the long-suffering, great guy that he is, made dinner today.  Did I sorta nag him into doing it? Yep.  Did it kill him to actually step foot in a grocery store, and plan a meal? No, it did not.  Do I feel badly for having sorta badgered him into doing it? definitely wasn't a bright spot in the day, but darn it, no I don't feel badly. He even made dessert, which I don't do.  So, I have to say, it was nice to not spend yet another Sunday afternoon at the grocery store. For the guys reading this, please don't hate me!
-It took me about four hours to clear the driveway and front walk of snow, on Friday (B was home but he wasn't feeling well).  The amount of snow we got, all in about 8-10 hours, was just insane.  It was quite a workout, let me tell you!  I felt really mellow the rest of the day; either from weariness or all those endorphins (I think those are the feel-good things that get released when you exercise), I don't know.  And, by this time tomorrow, it will look as if there was never any snow on the driveway at all, go figure.  Oh well, I couldn't have let it sit and just melt, as we wouldn't have been able to even drive down the driveway.  Yes, we have a snowblower but I think ones of the blades is broken or something, so it's not really effective at moving snow at the moment.  Plus, it's fun to look all strong and durable and long-suffering, out there with my shovel, braving the wind and the 2,000 lb chunks of snow, while the neighbors power through their drifts with the snow-blowers.  Good times.  Love winter.
-I cleaned S's room yesterday!  Initially she was NOT happy about this.  She grabbed the box for some game insisting that one was staying in her room (even though she's played with it all of two times since she got it two Christmases ago), proceeded to have a minor meltdown, ended up falling asleep on B's lap in the family room....and all was well after that, thank God!!!  Her room was just a mess, with a drift of toys by the bookshelf, junk all over the dresser...I'm surprised she ever wanted to play/sleep in there.  But, I think she really likes it clean.  She seems really happy about how it looks now, and I think she really likes being able to get to her favorite toys without tripping over a pile of stuff.  Next up...K's room.....sigh. 
-Well, actually, it's a toss-up between straightening K's room (one last time...I promise...from now on she'll do it all herself, for sure...) and straightening the now-messy basement, where I've been putting all the kids' things as I empty out/clean their rooms.  Can we say, garage sale?  I've been telling K she could make a pile 'o money on Ebay, selling some of her Barbies.  Wasn't there some mom, who warned her family that if they didn't clean up their stuff, she'd sell the lot of it on Ebay?  Hmmmmmm........
-I am pondering teaching K (she's 11) how to cook this summer, using some of the time while S is at day camp.  Any suggestions? Good cookbooks?  Advice on how to stay patient :-) ?

Okay, I think that's enough random for now.

Friday, February 25, 2011

Prader-Willi Syndrome Questions, #6: What can I do to help my newly-diagnosed relative/family friend?

Q. My grandchild/niece/nephew/friend's child has just been diagnosed with PWS.  How best can I be of help to them??

A. This is an excellent question, as obviously it is more than just the child, and the child's immediate family, who will be affected - both short-term and long-term - by the Prader-Willi Syndrome diagnosis.  [As a side note - to any of my own family who might be reading assured you have been very supportive of our routines with S!  If the families and friends of all PWS families could be supportive as you have been, that would be great!!]

The first thing that those involved in the child's life should do, is learn about the syndrome.  The best way to do this is to visit, which is the website for PWSA(USA), the national Prader-Willi Syndrome organization in the United States.  There is also an international organization, IPWSO, which also has a website,  Both of these organizations are well-equipped to not only provide immediate and crisis-based assistance, but they are a great place to start in terms of connecting with local/state organizations, which will then put you in contact with families or parent mentors near you, if you wish.  I strongly encourage parents, caregivers, and all extended family members of the individual with PWS to connect with these organizations and local PWS organizations, and stay connected permanently by maintaining membership.  The support and advice gained from connecting with other families is, in my opinion, crucial to providing the child-with-PWS and his/her caregivers with much needed, and appropriate, support.

The second thing you should do, as you learn about the syndrome, is take everything you learn about it with a nice helping of objectivity!  PWS is very much a "spectrum" syndrome, which means that descriptions of its symptoms are of necessity very comprehensive and will cover every last medical/behavioral/psychological observation of individuals with PWS, if they happen in enough cases.  This does not mean that every single one of those will happen with the child you know.  Those comprehensive descriptions should be used as education, not as prediction.

The third thing you should plant in your brain, as you are supportive of the parents of the newly-diagnosed individual, is that THE PARENTS ARE THE EXPERTS ABOUT THEIR CHILD.

Let me repeat this, because it is important: THE PARENTS ARE THE EXPERTS ABOUT THEIR CHILD.  They  are the people living with the syndrome, trying to raise the child with PWS, day-in and day-out.  If you are spending time with the family, you must absolutely respect the policies and procedures, systems and routines that the parents have put in place for their child with PWS.  Raising a child with this syndrome is, without a doubt, going to look different than perhaps what you did with your children - and that is okay, it is necessary for the health and safety of the child with PWS for the parent/caregivers to do exactly what they are doing.  If you have concerns, ask the parents in a respectful way, for the purposes of educating yourself but NOT with the goal of changing what the parents are doing.  Further, if the parents/caregivers of the child with PWS have gotten to the phase where their child is on a restricted-calorie diet, and every calorie is counted, DO NOT feed that child anything without first asking the parent/caregiver.  This means, do not even feed the child a cookie...or a juice box...or even a stick of gum.  Nothing.  Calories are calories are calories, and when a parent is counting calories for their child with PWS, your action of giving that child food/drink of any kind is an act of disrespect to what that parent is trying to do for their child!

I think there is more I can say in answer to this question - but I'll stop here for now.


Thursday, February 24, 2011

Thankful Thursday

Five things for which I am thankful!

1.  The relative health of my husband, and both my kids...especially today, S's first day back at school after being out for a week!

2. Hot water, hot coffee, and hot showers.

3. The ability to read!  Reading has made me smarter (I think :-) ), made me more aware of the world, helped my become and stay a decent writer, helped me be a better communicator, and entertained me for all my life.  Pretty cool!

4. That the dog which I wasn't sure I really wanted, has turned out to be an awesome dog.

5. For every single person who reads this blog, and leaves a comment - and for those who just lurk! (Hi Betsy!)

Have a great Thursday,

Wednesday, February 23, 2011

Let us not buy socks...

...which are so similar in size, style, and color,
that it will cause a huge fight
at eight-o-clock in the morning,
about whose sock is whose,
because it fits this foot or that,
and she doesn't HAVE a pair like that,
and YES I DO,
until all a parent wants to do
is take said socks
and hide them
in the deepest, darkest, spidery-est
corner of the basement,
and then it is what socks? never heard of 'em.

Later, after a martini,

[set to auto-post at 4:00 p.m. 2.23.11]

Dripping with diamonds

[set to auto-post at 9:00 a.m. 2.23.11]

Isn't it amazing
to be quiet and bare of leaves
in the dark at midnight
and then to wake up


[all photos copyright 2011]

Saturday, February 19, 2011

When I exhale

Do you remember that movie, I think it came out in the mid-90's perhaps, it was called "Waiting to Exhale"?  I liked the movie, but the thing that has really stuck with me all these years is not the movie's subject but its title. 

"Waiting to exhale".  What does that phrase mean?  I think it means that moment when circumstances in one's life finally ease up - there's money in the bank, or one's body is finally healthy again, or a troubling relationship is either resolved or in permanent, soul-easing disconnect....that moment when the weight which has been hanging over your head like a 9,000 pound anvil, keeping you constantly on edge, finally disappears.  And, having been taking short, panicky breaths for hours/days/years, you finally feel like you can fully breathe in...and fully, totally, exhale.  The stress melts away from your neck and shoulders, your mind empties for a moment, maybe even you sit down and just sit, and think about absolutely nothing...because God knows your thoughts have been running a mile-a-minute for what feels like eternity.

Do you know when I exhale, on a day-to-day basis?

When my child-with-special-needs is either in the competent care of someone I trust, or when she is finally in bed.  When I finally, after a long and emotionally draining day, have a moment to myself to just sit, just think about nothing, just be.

I have to imagine that many parents who have children with special needs may have this same brand of "exhale moments".  This is especially true when the child's diagnosis-based behavior issues are becoming or have been severe.  Moments like these, when the primary caregiver can "exhale" even for an hour, are also called "respite".  Not every parent of a special-needs-child is able to obtain respite, and some who can easily get it, through social services of one kind or another, may even decide they don't need it.  But, bluntly speaking, most special-needs parents probably do need respite assistance, and they should always, always use it.

And with all due respect to parents everywhere, please do not tell me that parenting my special-needs child is just like parenting any "normal" child - it isn't.  I have one of each - a child with no diagnosis or special need of any kind, and one with Prader-Willi Syndrome.  My "normal" child is the older of the two - by 4.5 years - so I was very well aware of what parenting a "normal" child looked like, before S came along.  I know for a fact, from second-by-second experience, how very much different it is to be a good parent to S compared to my first 4.5 years of parenting.  While I do breathe a bit easier when my older child is finally in bed, it is in NO WAY the same kind of "exhale" I experience once Sophie is finally in bed.  Parenting S is a daily emotional roller-coaster.  I am almost literally on the edge of my seat, for all the minutes and hours she is at home and awake, not knowing what is going to happen with her next.  Is she going to have a planet-sized meltdown about food, about something, about anything?  Is she going to go use the bathroom, and end up sitting there picking at her skin if I let her sit too long?  Is she going to spend the remainder of the day being exceedingly nasty to me - just because that is part of the PWS behavior issues and for no other reason?  She is 7 now, so this is no longer about "it's just a phase" or "it's the terrible twos" or "it's the terrible threes".  No, this is part of Prader-Willi Syndrome.  Her tantrums can be epic,.they can poison the atmosphere of the entire house (although she seemingly recovers with no residual effects). Her PWS-based behavior issues can be extremely unpleasant to be around, and that is not going to change without medication, I believe.  I have been in contact with enough parents who have (even just slightly) older children with PWS, to know that these behaviors are part of the syndrome.  So they are here to stay, it's not a phase - or, even if it lessens somewhat, I'm aware that changes in the body or changes in routine or changes in circumstance can bring it on again.  It is probably a bit like living with someone who, at the drop of a hat and for no obvious reason, turns on you and becomes verbally abusive.  S can and does turn on me, the syndrome causes her emotions to swing from very loving to just plain mean - and she's only 7.  I am her primary caregiver, I am with her more than anybody else including her father.  I am on the recieving end of whatever mood she's got going, and while I love her and know she's a gift from God, this drains me.  Although I expect that I will outlive her, I have many years ahead of me of trying to figure her out, trying to anticipate/head off if I can, the things that set her off. 

I have many days ahead, of waiting to exhale.


Friday, February 18, 2011

5-Question Friday!

Heeeeeere's the q's and a's!  And, by the way, this is generated by the mom over at  Just wanted to make sure she got the credit here!

1. Have you worn the same outfit more than one day in a row?
Yes, yes, yes.  To the point where my older daughter has started calling me on it!!  At which point I usually respond, "well, honey, I've spent all my money buying you and your sister clothes/toys/an education, so this is all I have left in my closet!".  Lovely when one's children start pointing out one's lack of fashion; it's like having "What Not toWear" living here in my house.  See, I don't even need to go on that show!

2. If you had to choose any LARGE city to live in, which would it be?
Wellll.....probably either Seattle, Portland (OR), or Vancouver BC - only because I have siblings who live either in or near those cities.  I don't get to see them very much, consequently, so a year in any one of those cities would be fantastic!  Plus, I find those large cities somehow easier to manage than New York City (which will probably be the city-of-choice for a lot of people answering this question!).

3. Fly or drive with the kids on vacation?
Definitely fly if at all possible.  Are you kidding me?? Even driving to the corner with my children in the car is sometimes an exercise in insanity!!

4. What is your idea of "spring cleaning"?
UPDATED Answers:
Reality = Vacuuming on a day that feels spring-like.  :-)
In-My-Dream-World Answer =  Well, I would send my husband and kids on a 2-week-vacation.  Anywhere, they could even go to Paris and I think I'd be okay with that, if it enabled me to live out this dream!  Then, in that two weeks I would go through the entire house, top-to-bottom, rent a dumpster and park it in the driveway under a convenient window, and pitch, pitch, pitch!!  Then, near the end of the two weeks, I'd hold a monster garage sale. Now, that is spring cleaning. 
With the profits from that, I could probably send myself on a really nice trip.
Sigh.  It'll probably never happen quite that way...but I can dream, right?

5. What is the best book you have ever read?
Oooo, this is a tough one.  I have read probably a couple thousand books by this point in my life; being an English major in college definitely ups that number.  I will say that one book I am going to be re-reading shortly is Prodigal Summer by Barbara Kingsolver.  Great book, great story!  And, a wonderful book I just finished is Major Pettigrew's Last Stand by Helen Simonson - again great book, great story!  Highly recommend either one of these.

Have a great weekend!

Thursday, February 17, 2011

Ten Things I Believe In

[From "The Imagination Prompt Generator" at www.] [because I have total blog-block and could not get myself going today]

Ten Things I Believe...or Believe In

1. I believe in God (and Jesus) (and the Holy Spirit) (and grace) (there, got that out of the way...needed to be said, seems an obvious thought)

2. I believe that the human mind is capable of digesting new thoughts and ideas at any/every point in a person's life.

3. I believe that humans have a responsibility to continue educating themselves throughout their life - to seek out knowledge about topics completely new to excuses!

4. I believe that stay-at-home mothers should always, always, always, always take at least an hour or two every single week to do something without their children...something which builds on any intellectual background they might have, or which increases their "thinking power" (so NO, I do not count manis/pedis in this...unless you ar studying for your master's degree while you get your toes done!).  Now, please know that I fully support motherhood and parenting and all that.  But there is a whole part of an adult's brain which needs feeding, needs stimulation.....and which has absolutely NOTHING to do with baby food/diapers/toilet-training/tantrums/duplo blocks or playdates.  Feed your brain!!!!

5. I believe that females should always pursue the highest level of education that they can, before they even get married.  Because, in my humble opinion, the very second a female gets married, it is a lightning-speed-progression to living a life of cleaning, cooking, cleaning, child-rearing, get my drift.

6. I believe that every human on the planet, to the best of their ability, has a responsibility to cultivate a "world view" mentality.  Without judgement I believe we all need to educate ourselves thoroughly about at least one other country - preferably one we know little about - at least every one-two years.  I think this would potentially help our relationships with other countries.  We don't have to agree with how other countries do things, but international politics might be helped if we at least understood the background.

7. I believe that humans, when they are thinking charitably, have a responsibility to support charities that help/support humanity, before supporting charities for animals.  If humanity is suffering, they aren't exactly able to care for animals anyway. So support the human-based charity first, then by all means adopt an animal from your local shelter (which we did) or donate to ASPCA.

8. I believe that before people start looking to other humans for inspiration/help with life's problems, they might try looking to God.  Just a thought.

9. I believe that people should at least participate in a Bible study, before they decide that "God is not for them".  Don't knock it 'til ya try it.  Again, just a thought.

10.  I believe that there really isn't any good reason to start a child into the acting/tv/Hollywood life before they are, say, 18.  It is just sad to hear about the young people in the entertainment world, who make waaaay too much money at such young ages, and then sniff it all up their nose/shoot it into a vein and end up in rehab - or dead - by the age of 25.  In that atmosphere it is hard for even the best of parents to shield their child from the drugs and the negative influences.  Won't the child be just as talented - and more mature and able to make better decisions - at 18??

Well, there ya have it.  I'm not always this serious, folks, just trust me on that!!


Wednesday, February 16, 2011

Tuesday, February 15, 2011

Prader-Willi Syndrome Question 5: How do you structure meals and snacks?

Q. How do you structure your daughter's meals and snacks - do you keep her on a schedule?

A. Yes, S is very much on a schedule.  She eats about every two hours or so, except for the hours between dinner and bedtime.  She has three meals a day and two snacks. 

In order to be successful at managing the PWS lifestyle for S, we had to do this.  There could no longer be a pattern of just open snacking all day long - not for us, and not for her sister, either.  K was only 4.5 years old when S was born, but by the time S turned 2, we were on a schedule.  We all eat at the same times - if S can't eat, then no-one eats.  It may sound harsh - and believe me, there are many times when I regret having skipped a meal, because I am of course feeling incredibly hungry but I know it would be a mistake to eat before S can eat too - but this has worked very well for us, and it is a system which I recommend to any other PWS families I have opportunity to speak with, especially if there are other children in the family.  The child-with-PWS needs to have it made clear, as early on as possible, that they cannot eat or snack all day long - this is so important to teach them, because of course they will be getting that hunger signal constantly.  I have tried to explain to S that the signal is just a mistake - that it's Prader-Willi Syndrome tricking her into thinking she's hungry.  I've even tried to explain to her that her stomach still has food in it from the last time she ate, that her stomach needs at least two hours to digest before putting more food this point she is too young to really get these explanations.  She may not be able to really understand PWS until she's much older, and perhaps not even then, so trying to explain it to her may or may not help.

So, the very best thing parents of children with PWS can do, is to get on a schedule for eating and snacking.  That way, the clock becomes their ally - when their child begins to ask about eating and becomes anxious (as I would too, if I felt like I were starving and were worried about obtaining more food), the parent/caregiver can point to the clock and say, we will eat again in _____________minutes.  I used to use the timer on the microwave or oven, because setting the timer for the next time S could have something to eat seemed to help her think about something else for a while.  It was as if the timer was then doing the worrying for her, and she could do something else and just wait for the beep.  She now knows how to tell time - plus we have chiming clocks in the house - so she doesn't need the timers as much anymore.  Getting on a schedule of eating every two hours or so also helps to keep the blood sugar levels constant - so that whatever intensity of hunger S is feeling isn't made more extreme by a huge dip in blood sugar levels.  There has to be structure to the eating schedule for kids with PWS, because food is, ultimately, everything to them.  Yes, they do have hobbies, and can do some of the things other kids can do - but as a parent I do not ever, ever mess around when it comes to food with S.  I have learned to be prepared, to take snack with me if necessary, to plan outings/errands around the time between meals and snacks, because I understand what part food plays in S's daily life.  It's not always fun, and I've spent more time thinking about "food" in the past 7 years than I ever have before, but thus far it has been manageable, thank God.

Later (and thanks Rachel for the question!),

Monday, February 14, 2011

AAAGggghh, clothing for the 11-14 year-old girl

Hello all....Happy Valentine's Day!

Well, the Father-Daughter Dance is this week, and my mission between now and then is to somehow find a suitable dress for each of my daughters.  In addition K has been told by her music teacher that the 6th grade girls will get extra credit if they wear a dress to an upcoming Art/Music concert at the school.  Finding a dress won't be too difficult for S, but for K, who is now 11....sheesh.  This is difficult!  Her favorite store at the moment is J.ustice.  We went there a week or two ago, and while they did have a dress, she didn't like it - I don't remember the exact details but it was probably too pink, or too frilly, or too flowery, or too.....yeah...too girly.

Now, don't get me (or her) wrong, she's all about the girly stuff.  She loves painting her nails, now has her ears pierced twice, likes to smell pretty, is jones-ing to wear makeup, it is taking her more and more time to get ready to go somewhere, all that stuff.  But when it comes to clothes, she is NOT into anything that at least I would describe as feminine.  No dresses for everyday wear.  No basic cardigans - has to be a "hoodie" preferably black.  No knit leggings-as-pants anymore, has to be yoga pants, jeans, or "jeggings" (basically skinny jeans which are also stretchy). 

Just shopping for basic clothing for this age bracket is, in my mind, made more difficult because of their age.  They are too old for some things, or wouldn't wear that stuff anyway because in their mind they are actually 15 and not 11, and need to dress accordingly.....not happening.  Because, if I let K dress the way she thinks she should/could be dressing, well I doubt her choices at this point would be appropriate.  And then, they are too young for many of the clothes which are being marketed to their age bracket!!  We went to a local department store about this time last year, once again looking for a dress for this same dance.  And the we say inappropriate, can we say dresses for a 25-year-old woman on a bender, can we say I would not ever let her wear these??  It's a challenge to find a decent dress, these days, for an 11-year old girl; what the "popular" clothing market produces is often not really a great choice, and yet what I would find decent, she won't wear because she is basing her likes/dislikes on what the clothing market is pushing.

Maybe I should learn to sew, and just make all her clothes?



Friday, February 11, 2011

5-Question Friday! And it's a "Linky" party!

Heeeeere goes:  5-Question Friday!

1. Would you rather be on ABC's Extreme Home MakeOver or TLC's What not to Wear?
Oh my, this is actually a funny question....My husband, older daughter and I were watching "What Not To Wear" one night, and I all of a sudden blurted out to them, "if you EVER nominate me for this show I will never speak to you again!!"!  I love the show, but I always feel a bit sorry for the people on there whose entire wardrobe gets thrown in the trash.  I'd much rather be on Extreme Home Makeover - YES, PLEASE give me a kitchen/pantry which I can separate from the rest of the house and lock up - our younger daughter has a syndrome which makes it very dangerous for her to even be around food at all, so this (while it sounds odd) would actually take a huge worry off our shoulders!
2. Do you have any tattoos? 
No...not yet!  I really, really want a tattoo.  I have been thinking about getting one for a while, I just can't decide what to get and where to put it (but I'd never get those 'stripper' tattoos).

3. Do you tell your kids about things you did growing up?
Of course!  Favorite childhood memory: playing hide-and-seek outside during the summer until 10 p.m. (always more fun to hide in the dark), swimming at the neighborhood pool, having the time to read for hours or play Monopoly all afternoon.  And, I am the youngest of 10 children, so I do tell my kids "yes, having to share with your siblings is NORMAL, having a sibling do things just to tick you off  is NORMAL....I also tell my older daughter...frequently...that my family went without a television for ONE WHOLE YEAR and I survived unscathed!

4. If the traffic signal turns yellow, do you stop or speed up?
That depends...if I've been tailgating someone I will usually go around them carefully and then try and get through the light.  Not that I'm a tailgater.

5. What's your preference: chocolate or chips?
Neither, these days - I've been loving Cheddar Cheese Quakes - like cheetos only much healthier! your OWN blog below, and answer these Fab 5 Q's yourself!  Have fun!

Jen :-)

Wednesday, February 9, 2011

Prayer warriors needed!!!! Please pray for EllyAnnah

Hello everyone,

PLEASE PRAY for baby EllyAnnah, and infant with Prader-Willi Syndrome.  She was born 8 week premature in late July 2010, spent about 9 weeks in the NICU and was finally able to go home in late September.  Due to illness Elly was rushed back to the hospital on December 7, was discharged Dec 18, was rushed back on Dec 30, and is still there.  In recent days her condition has taken a turn for the worse, as she has had high fevers, low blood-oxygen levels, and high respirations-per-minute numbers.  [Update: She has spiked a fever again today 2/10] The right ventricle in her heart is now having trouble because Elly has decreased ability to expel CO2. She is battling pneumonia and a staph infection.   Her progress is slowed due to complications of the syndrome.  Contracting pneumonia is especially dangerous for our children with the syndrome.  Please keep EllyAnnah, her mother, and all their family in your prayers.  Please keep all individuals with Prader-Willi Syndrome in your I've said before, the syndrome is extremely challenging and, while the general public may not know much about it (yet), our kids still need your much-appreciated support and praryers.

Thank you,

Tuesday, February 8, 2011

Prader-Willi Syndrome Question 4: Is there a cure for Prader-Willi Syndrome?

Q. Is there a cure for Prader-Willi Syndrome?

A. No, there currently is no cure for PWS.  Since this syndrome is genetically-based, any kind of "cure" will involve altering the pathways of many different signals sent from the hypothalamus to the rest of the body.  Finding a cure for PWS involves lots and lots and lots and lots of research!  The tough part about that, is that because the PWS community itself is not large, pharmaceutical companies (who would stand to make the most money from any drug-based therapies seen as a 'cure' for PWS) would not initially be making a ton of money - and so they aren't chomping at the bit to fund PWS research, unfortunately.  That is why fundraising efforts involving the PWS community are SO important, because compared to the amount of funding given to research efforts and quality-of-life supports for something like cancer, PWS is woefully UNDER-FUNDED.  This is very frustrating to parents and caregivers of individuals who struggle with PWS - we'd like a cure too.  Quality-of-life is just as much an issue for my child, even though she's not undergoing chemo or radiation or losing all her hair!

Sometimes people have asked whether appetite suppressants, or surgeries like bariatric surgery, are of any help for people with PWS - as these would seem to address the extreme, constant, deadly hunger sensations which are such a threat to those with PWS.  Unfortunately, appetite suppressants and surgeries have proven unsuccessful with, and actually very dangerous for, people with PWS.  You see, PWS is not really about appetite, or the size of the stomach.  It involves an erroneous signal being consistently sent from the hypothalamus to the hunger centers in the brain, and the signal is constantly giving the "you're hungry, you're hungry" message.  The message keeps coming even when the person's stomach is full to the brim with food.  Appetite suppressants don't turn off that signal; and surgeries which alter the stomach's size definitely do not turn off that signal. 

How do I personally feel, as a parent of a child with PWS, about there someday being a "cure"?  Well....of course I would love for there to be some kind of drug that S could take, or safe surgical procedure that could be done, which could relieve her of even half of what she goes through every day.  I would especially love it if some smart researcher could formulate a drug which could turn off that hunger signal...that, for S, is the hardest part of this.  No surprise there - of course it is hard for her to think about much else, when her brain is telling her she is starving, every second of every day!  But I am also realistic about the "cure" idea.  PWS is genetic, which means it is embedded in every single cell of her body.  Whatever might be found to help the PWS community will involve some pretty complex research and, at this rate of funding, is still some years down the road.  So I do have hope for some kind of cure, but I know that we have to wait...hopefully something will be discovered in S's lifetime. 

While much, much more research is needed, I am encouraged to know that there is research currently being done on PWS, how it happens, how the genes in question work exactly, what role the hypothalamus plays in satiety and obesity, and what might be done to address the challenges caused by PWS.  The general population should be excited by PWS research as well, because if some of these questions about the "mechanics" of PWS can be answered, then questions about obesity itself will hopefully get answered as well.  If we can better understand why we eat what we eat, I think we may all be better off.

For more information about Prader-Willi Syndrome, and to donate towards research and quality-of-life resources, visit OR


Monday, February 7, 2011


To-do list:

1. Feel guilty for not having gotten more done today (including writing a much more interesting post!!):

Jen :-)

Thursday, February 3, 2011

"Run!! She's quoting from the Bible!!"

My last post, from Sunday 1/30, focused on one of the readings I heard at church that day, and a part of the sermon. 

Since my blog is now "syndicated" via Facebook, and also part of BlogFrog, whenever I put up a new post it shows up in those two places.  So, presumably, there are a certain number of people who can see the title, and the first few lines of, any post I do.

So I knew, going into that post on Sunday, that there would be large number of people who would steer very clear of that particular post, because it included a quote from....(cue dramatic music)...the BIBLE.  Sigh.  Let me just say something here.  I joined BlogFrog because it is a community of people who blog, usually pretty consistently.  I also syndicated my blog via Facebook because, like most folks who blog, they actually want friends, family, acquaintances and perfect strangers to read what they are writing.

But, here are some things I am NOT trying to accomplish with my blog:
1) I am NOT trying to sell you anything, or start my own home decorating business, or revamp your eating habits with lovely, home-tested recipes, or give you the Top Ten Easiest Ways to Change Your Life....etc etc etc.  There isn't anything wrong with any of that, I just am not the kind of person to want to write about those things or do those things. 
2) Fortunately for me/them/us, none of my children are terminally ill, so I am NOT blogging to capture the attention of thousands in search of prayer warriors.  I would certainly appreciate prayer on behalf of my daughter who has Prader-Willi Syndrome - and all individuals who have it - because even though she is doing pretty well, the syndrome still sucks and comes with its own frustrating challenges.  And, to be honest, there are enough mysteries about this syndrome that, indeed, something could happen tomorrow that could take her life.  I don't know.  It is scary to not know - and I know that none of us know the day of our death - but PWS really takes that out of our control even further.  Perhaps that in itself deserves prayer.  That is another post, I think.
3) I am NOT trying to convert you to (insert religion here).  Believe me, folks, it has been enough of a journey, enough of a challenge, enough of a commitment just to get myself to this point in my faith life - I really don't have the time or energy or 'fire' at the moment to try and take the world by storm with a blogging ministry.  If I quote from the Bible, or talk about the faith-focused books I'm reading, or mention having a relationship with Jesus...I'm really just thinking out-loud.  If it helps someone else, that is wonderful.

On a further note - and perhaps this should really be addressed in another post, but here goes:  I am not a fan of people looking for direction for their life, from other humans.  I will never be a fan of any 'self-help-guru', like Dr. Oz, or Joel Osteen, or Oprah (seriously?), who goes about helping people by telling those people that they can rely fully on their own human nature to live a peaceful life.  Why would I, how could I, depend solely on other humans for advice on how to live?? Aren't those other humans prone to deceit, to making mistakes, to pursuing selfish desires just like any other human? Aren't they driven by the same base human desires as any other human?  Go to any bookstore and you will see a couple hundred self-help books, from a zillion different perspectives.  You know what?  Those authors and their depend-on-yourself advice will be dead-gone-and forgotten in the blink of an eye.  If I am looking to change myself, to change how I treat others, to change how I love others, I would much rather take lessons from God, than from humans.  I have tried to change under only my own power, and it just. doesn't. work.