Monday, March 28, 2011

Food Journal

The past 7 days we've been keeping a food journal of everything K eats or drinks at the request of her nutritionist.  This has actually been fairly enlightening.  We discovered 2 things this week: One, that her mom does a much better job with her intake than I thought; and two, that the school gives her a lot more food than I thought.  Hence my earlier post.

On Monday's K's class volunteers at a food bank.  We had an issue with this last year when they started but agreed to let her go after discussing it with her (she really wanted to do it) and the teachers (we would only agree if a teacher - not a para - had 1-on-1 supervision for her at all times).  Well, today they gave her a peanut butter and jelly sandwich and yogurt dip and apples.  In addition to the lunch we sent.  That is essentially 2 lunches for her.  When I e-mailed her teacher about this he said that is what they do every week.  For 2 years.  And I just heard about it today.  Ugh.  Yep... that makes 4 out of 7 days of the week I was keeping track with food issues with the school.  And 2 of those 7 were weekend days.  This is the best we can do??  Seriously?!

I just sent in her IEP and her food log to the nutritionist and now we wait.  Sometime in the near future (hopefully within the week) we will get a nutitional plan back that we are all to start following.  Also, the nutritionist will be talking to the school about what they need to be doing.  I honestly don't know what more to say to them without coming off as rude.  Maybe I need to be rude.  I just don't know.  I've always been of the philosophy that you catch more flies with honey.

At this point, nothing is going on with Pittsburgh yet.  I am still waiting to get K's insurance back on track.  I have yet to receive the request for financial info that I know must be coming.  So, if I get nothing yet again tomorrow I'll be calling them.  It's terrible to call and I put it off as much as I can because it literally takes 2 hours every time I call just sitting on hold for them to tell me "Oh, we didn't get it" or "Oh, we're still reviewing".  I think we have a seriously broken system when it comes to dealing with disabled kids and the state.

So, that's where we're at for now.  Literally the day her insurance is reinstated I'll be mailing in our application to Pittsburgh.  It's ready and waiting.

Friday, March 25, 2011


Sometimes dealing with PWS is really a struggle.  I mean sure, you can go days in between a bad day and you can almost feel normal.  You have your routines and you just go about doing things in a normal way.  Then one day the phone rings or you get an e-mail telling you something has happened.  And you stomach drops because you know it's not good. 

K has an IEP for school.  We have to go meet with the school once a year and re-do it to make sure everything we want is in it.  For the past 3 years (at least) it has said specifically in her IEP that she is not allowed to have ANY food at school unless it is sent from home.  Period.  She takes her lunch every single day.  We did strike a deal with the teachers last year that if they called us in advance for things like class parties we would work something out special to send in for her as a substitute or if it wasn't going to be too bad, she could just have what everyone else was having - with close supervision of course.

Well, this past week, as per my previous post, we met with a nutritionist.  She asked us to keep a food log and in keeping with this I e-mailed K's teachers and asked them to let me know if she eats anything at all extra at school.  She is not supposed to, but in the past there has been a history of her getting into things and us not finding out about it until much later and when brought up as an aside. 

The first day after I sent this e-mail, I get an e-mail letting us know that the class had watched a movie and K had received a "small helping" of pretzels.  No advanced warning, no option for substitution, no nothing.  And how much exactly is a "small helping"?  How do I measure that in terms of calories?

The next day I get an e-mail that K had somehow gotten money (later found out this came from her mom's house) and convinced another student to buy her chips and cookies out of a vending machine at school.  Luckily they caught the student before he was able to give the food to her.  So we had to have a discussion about this and that her mom needs to keep money out of sight.  K is not allowed to have money under any circumstances.  If she gets birthday money, we hold it and take her to the store and let her pick something out.

The next day, I get an e-mail letting us know the teacher has brought in individual bags of chips for the students and can K have one or would you like to send something?  Now, I am convinced had I not sent the e-mail asking them to let us know everything they would have just given her the chips without any notification whatsoever to us.  I find this incredibly frustrating.  It goes against our wishes in her IEP.  It goes against what they tell us in conference - that they don't allow class parties or their students to bring in extra food and they emphasize to all students that their food is their own and not for sharing with anyone, ever.  I need to start holding their feet to the fire and do a little research into how the law works in regard to enforcing the IEP.  I know their resources for monitoring are limited but if we don't advocate for K, who will?

Monday, March 21, 2011


Things have been interesting lately. 

First off, we had an appointment to get K her AutoPAP last week and the day of the appointment I got a letter in the mail stating that our insurance had cancelled.  Now, K has state inusrance and I had sent in her renewal form and somehow they "lost" it.  I then sent in another renewal form which they also "lost".  I finally did a 3rd one and called to see if they had received it and they had.  So now we wait in limbo until this all gets straightened out.

In the meantime, today we had her appointment at the University of Washington clinic that handles children with PWS.  It was an interesting appointment.  We met with Dr. Leavitt and a nutritionist, Sharon.  They asked us a ton of questions and wanted to just get a general picture of what we had going on.  I have a lot to do over the coming weeks!  They want us to start keeping a food journal.  K's BMI is literally off the charts.  They want to get her somewhere between the 75th and 90th percentile for weight and they'll be happy (and so will we!).  They also want us to followup with her endocrinologist and find a ophthalmologist at Children's Hospital for her to see.  Of course, I can't do any of that until we get the insurance situation straightened out.  Also, they want to help us out with getting her school on board in regards to making sure they understand the severity of keeping her supervised at all times.  They also want us to look into getting her into some sort of a P.E. class.  I'm glad there will be someone besides just us advocating for the school to supervise her more.  Sometimes I think they think we overreact when it is literally life and death for K.

Now we just have to explain to her mom and grandma why it is so important for us to limit her calories so severely.  We're not sure what her daily allowance will be just yet as they need to figure it all out and will do so when we give them our food journal (which I will be starting tomorrow).  Also, they recommended we get her legal guardianship taken care of before she is 18 which will make things easier on us later.  I have that and Social Security to take care of so while Pittsburgh is on hold until insurance comes through, I need to get busy on that stuff.  Just when I felt like I was getting caught up, there's always more to do!

Wednesday, March 2, 2011

It's been awhile...

Sorry it's been so long since I've updated but there just hasn't been much going on in the way of Pittsburgh.  I finally got notice today that the insurance approved K's CPAP machine at 100% so I'm waiting now on the call to get that scheduled.  I'm hoping it really improves her quality of life (espeically with her frequent naps during the day, sometimes during inappropraite times).

I also tried to give Pittsburgh a call to see if we should wait until we go the K's PWS clinic appointment to send in her application or just go ahead and send it in now.  I got a voicemail with that so for now we wait and see.

This weekend (Saturday) is K's 16th birthday so we're gearing up for that.  We were going to have it at a really nice local park but because the weather has been so crazy lately (snow, wind storms, rain) we decided to just go ahead and have it here at the house.  We got the invites out pretty late because of snow days at school, so I'm not sure how many kids we're going to have yet.  This is the first party K has ever had where all her friends get to come.  It'll definitely be a new experience!

So for now that's where we're at.  Just playing the waiting game and getting ready to party this weekend.  I'll update again soon.

Monday, February 21, 2011

Birthday Time!

It's been a little while since my last post because there isn't much going on in the way of Pittsburgh right now.  Until we get the last of our records back and have the appointment at UW we're sort of in a holding patterns.  But in the meantime, we have a party to plan!

K's Sweet 16 is on March 5 and I've started planning a party for her.  We've actually never had a birthday party with school friends for her before (usually it's just been family) so because it's her 16th we gave her that option this year.  We're inviting all of her friends from school (not quite sure how many this will be, but it sounds like her entire class...) plus all the usual family.  I've already figured out what I'll be making to eat (all low calorie) and her theme will be "Glee".  I've even found low-calorie cupcakes I'm going to make with music notes on them for the theme.  We've already ordered her presents, too.  So, things are coming together nicely.

K used to do the treadmill every day for an hour on the days when she was at our house.  We stopped that for some reason along the way and yesterday I had her go back on it for the first time.  She did 35 minutes and I was so glad to have her back at it.  Today she didn't do it because she played the Kinect Sports for quite a while and that is actually a good workout for her.  I'm not going to get too crazy with the exercise plan for now until we see the nutritionist at UW.  I'm really hopeful for a lot of good change at that point (although I am still fully gung-ho for Pittsburgh - I think it's just the drastic change needed to get everyone on board for K's health).

Along with all this, we've got 4-6 inches of snow in the forecast for later this week.  In some places, this may not seem like much.  But around here, we hardly ever get snow and the place pretty much shuts down with anything over 2 inches.  Should make for an intersting week!

Wednesday, February 16, 2011


Yesterday I talked about the x-ray K got to check on her growth (when we were exploring the possibility of Growth Hormone treatments a few months back).  I thought I'd share the x-ray since I think it's kind of neat.

    Things were pretty slow around here today.  K spent the afternoon playing with her baby sister and the dogs.  I think it's about time we get her back on an exercise routine.  She used to do an hour on the treadmill every single day, but we got off that routine.  It happens slowly but surely and the next thing you know she doesn't do it at all anymore.  So, I think it's time we re-visit that and see if we can get a couple of pounds off before her UW appointment. 

    Tuesday, February 15, 2011

    Birthday Cake

    Since K's 16th birthday is coming up on March 5, I thought I'd share a recipe I use to make her a low-cal birthday cake:

    1 boxed cake mix (chocolate or vanilla/yellow)
    1 can either diet cola (for chocolate) or diet lemon-lime soda (for vanilla/yellow).

    Disregard the instructions on the box and just mix the entire can of soda and the cake mix together.  Bake for the time it says on the box (depends on the pan you're using, I usually make cupcakes to help limit portion size).

    Frost with sugar-free cool whip once cool.

    One cupcake will come out to roughly 180 calories (if you only make 12 cupcakes which are pretty big, if you make more it will be less calories per cake).

    Today's News

    Well, we finally had K's followup with the Children's Pulmonologist.  It's as we thought: Sleep apnea.  They say the first step in treating kids with this is tonsills/adenoids out.  Well, she had that done in 2004 so that's not really going to do anything for us.  So the next step is a CPAP machine.  We have to wait for insurance approval and then someone is going to come out and bring it to us and get it all set up.  This should make for an interesting time since K travels back and fourth between our house and her mom's during the week.  Plus, it's just another thing for her to get used to which can either go alright or go horribly.  Guess we'll have to wait and see which one it will be.

    I am getting more and more excited for her appointment at our local genetics clinic (where they supposedly specialize in PWS) at the University of Washington.  We're going to be meeting with a doctor, a behavioral psychlogist, and a nutritionist.  I feel like I have so many things I want to ask and get information about, but they're all scattered around in my mind and I can't seem to just pick them out and write them down.  Hopefully I can better focus them as the time gets closer (March 21).  I think at this point I'm most excited to see the nutritionist.  I understand K should be eating about 600 calories a day to lose weight with PWS but what I don't know is how to feed her that and give her the nutrition that she needs.  Can't wait to learn all about it!

    As for Pittsburgh, I only have 1 more records request to submit.  I have gotten records from the Everett Clinic and the school district.  I'm waiting on the records from Children's Hospital and I still have to submit the request to the University of Washington.  I think that's just about the last step.  I got this neat (and unexpected) CD in the mail the other day from Children's and when I popped it in the computer, it was a computerized file of a bone density x-ray K had done to check her growth plates in her hand a few months ago.  I wasn't expecting it but it was pretty neat to see :)  I haven't shown it to her yet - maybe tomorrow.

    Thursday, February 10, 2011


    Yesterday I really didn't get much accomplished.  Today was a different story, though.

    I went to the school district and got current copies of K's IEP and also any behavioral evaluations she has had done.  I also went to her primary care physician and picked up the referral letter she typed us.  At the same time, I dropped off the records request for them.  All I have left to do is send in the request for UW records and I'm done with all the requests.  Feels good to be nearing the end of that task list!

    One thing that was a bit surprising today was in K's referral letter from her primary care physician, she put in that she suffers from obstructive sleep apnea.  As we haven't met with her pulmonologist to get the sleep study results, I was a little surprised and it is a bit scary to be honest.  I thought if she had that we would have heard back from them sooner about getting some treatment going, but I guess not.  I'm just glad we're going to be going in Monday and I think I need to make a list of questions to ask when we go.

    I think this news today just made me feel more resolute about the fact that K needs to be on this journey.  With everything required and all the hoops to jump through, I often question myself.  "Is she serious enough to need this?"  I think between the fact she has gained 10 pounds in just a few months and now with the obstructive sleep apnea, I feel like we're going down the right path.

    I'm hoping we start to get some records soon so I can send back the application to Pittsburgh and then we wait and see if our insurance will allow her to go.  I guess it feels good now to be doing things to make this happen.  At some point in the near future, everything will be sent in and it will be out of our hands.

    Tuesday, February 8, 2011


    I had a lot I needed to get done today and ended up having to put a lot off because it was my dad's birthday and he lives a few towns over so the day was spent driving and with family.  However, one very important thing happened today: I FINALLY got K and appointment at our local PWS Clinic at the University of Washington!  I have been trying to get her in there for MONTHS.  Yesterday, as I wrote, she saw her primary care physician.  Well, come to find out today, without any prompting from us (outside of telling her yesterday we had yet to be able to get K in to this clinic) she put in a personal call to them and let them know they needed to schedule an appointment with us ASAP.  So yay!

    Other than that, not a lot done today.  I still have my entire list from yesterday to do, so I hopefully will be knocking some stuff off of that tomorrow.  I am just so happy to have gotten that appointment.  She goes in on March 21, so we still have a little wait, but at least I know what date.  I'm also curious to see what her sleep study report says.  We'll be meeting with the doctors about that on Monday, February 14.

    I forgot to mention yesterday that when she got weighed yesterday, she was up 10 pounds from the last time we weighed her.  And this is with us trying to at least have her maintain her weight.  Yikes.

    Monday, February 7, 2011

    Just Another Day

    Today was spent taking both the baby and K to their doctor for appointments.  Luckily they were able to squeeze them in at the same time.  K needed shots which we only found out about after having assured her she wasn't getting shots today.  Oops!  Sometimes that's how it goes.  She took them like a champ, though.

    We had to talk to her primary care physician about getting a referral letter to Pittsburgh.  She thought it might be better coming from her Endocrinologist, but since she has only seen her Endo once, we thought the primary care physician was the way to go.  That should be ready for us in a few days.  She also got an EKG while there today, and we will get the results of that once I do a records request from the Everett Clinic.  Add that to my list of stuff to do tomorrow...

    1. Go to the school district to get psychology and evaluation records, plus copy of current IEP.
    2. Call UW Clinic again and leave message (AGAIN) for appointment down there with their PWS specialists.
    3. Print out and send in records request from UW Medicine.
    4. Fill out and drop off request from the Everett Clinic.
    Every time it feels like I'm making strides more and more pops up to do.  At least it's not a neverending list of to-dos.  At some point it will be done and we will just wait and see what happens.  Sometimes I wonder if this is the best plan.  Couldn't we do this stuff here?  But then I think about how important this all is and I think it will be worth it in the long run.  For now we just have to stay the course and jump through all the hoops they need us to jump through.

    Every day is one step closer to help.

    Saturday, February 5, 2011


    Since it's the weekend, I haven't gotten any more done in the process to Pittsburgh.  However, I did learn some interesting facts about the Red, Yellow, Green diet they will be implementing (the psychology of it).

    For instance, the Green (or "go") foods are generally less than 25 calories per serving and they are allowed seconds of any of these foods.  But, they should not be called "unlimited" because this causes someone with PWS to have anxiety and become obsessive over the prospect of a food being unlimited.

    Also, if someone with PWS consumes just 500 extra calories a day, that translates to 48 extra pounds per year!  It's amazing how different their bodies and metabolisms are than a "normal" persons.  I would never have thought that the general rules that apply to diet and exercise would be so far off in someone with PWS.  Clearly I have a lot more to learn than I thought.

    All of this was just so interesting to me.  I can't wait to see all the other things we're going to learn.  Up until now, it's just been sort of the blind leading the blind in regard to what we're supposed to do.  No one has been through this before, no one really knows.  But we're learning and doing the best we can.  I'm so excited about this journey.

    Friday, February 4, 2011

    More Small Steps

    Well, I got a few more things taken care of today:
    1. Called the PWS Clinic at the University of Washington and left a message to try and get an appointment.
    2. Called the UW Medical Center and requested their form to get records released.
    3. Called and spoke to the school psychologist and figured out how to get those records.
    4. Mailed the records request to Children's Hospital.
    On Monday I need to go to the school district to get copies of her re-evaluation (including psychological evaluation) from 12/09. 

    I feel good like I'm starting to make some real progress.  Soon there won't be much to do but sit back and wait for the records to come in.  I can't do a whole lot more at this point but wait for those and take K to the appointments she has scheduled next week.  I am really curious to see what the results of the sleep study will be.  Between when we had it and now her doctor left Children's and he had a plan for her.  I'm hoping he communicated it to his replacement.  Anywho, it feels good to be doing something.  I can't wait to take that next step and get her on this journey.  We talked to her about it a few days ago and she told us she wants to go.  We asked her why and she told is because it will "help me get healthy". 

    I also have other things to be working on for her, too, like Social Security and contacting her case manager and ARC of Washington.  I've been trying to get ahold of someone (anyone!) that can give me info on a group home for K.  She really wants to lead as independent a life as she can and we want to give that to her (without her actually being independent... a group home or something of the like will be more appropriate).  Because there are so few resources, I want to start this process now because she's already 15 and the waiting list can take years.  So far, no one is returning my calls or e-mails.  I think that's just par for the course when it comes to stuff like this, though.  I just have to keep trying.

    Thursday, February 3, 2011

    First Steps

    Yesterday I got the Pittsburgh application in the mail.  Like I said earlier, there is a LOT of required information.  Since I wasn't around at the beginning of K's life and when she was diagnosed, I don't have any of that info on hand.  So today I began the process of printing and filling out paperwork and making necessary appointments.

    This is what I've done today:
    1. I am working on filling out a medical records request from Children's Hospital - Seattle.
    2. I called and scheduled an appointment to get the results of a recent overnight sleep study we had done (because the Institute needs a recent sleep study).
    3. I called and scheduled an appointment for an EKG (again, CI needs a recent EKG) and to discuss with K's primary care physician the referral letter we need.
    Tomorrow I will mail the request to Children's, call the UW Medicine Genetics department and try and get a records request going with them, and call the school to find out if K has had a behavioral analysis done.  When we go see her PCP on Monday, I will see if she thinks we need to set up an outside psychologist for K also.  Phew!  I feel like I got a good start on all that needs to be done, but am just taking the first steps.  We also talked to K's mom A today and she seems to be on board so far.  We let her know we're moving forward with the process.  So much still to do!

    The Beginning

    Prader-Willi Syndrome is something that affects our family.  My step daughter was diagnosed at 3 months old.  If you don't know anything about PWS, the short version is that it causes a person to never feel full.  Ever.  There are also behavioral issues, low muscle tone, extremely slow metabolism, short stature, tics like skin picking, and mental retardation.  Extreme food seeking is also an issue.

    PWS affects everything we do.  We plan our life around it.  We don't resent it - it is what it is.  We make the changes we need to and we move on.  Unfortunately, many issues arise and sometimes we need help dealing with them.  Right now, K's weight is fairly out of control.  She is 4' 10" and at last weigh in (which was, I believe, in September or October) she weighed almost 170 pounds. 

    People look at you like it's your fault she's heavy.  Like you must be a bad parent because your child carries all that extra weight.  What they don't see is the hour a day on the treadmill she does or the fact that she is on a strict diet.  It can be hard dealing with the stares of strangers sometimes.

    Even with these precautions, I don't think we're feeding her as little as we should be.  I try to keep her diet around 1200 calories a day.  I'm pretty sure she should be actually eating around 600 a day to lose weight.  I'm just not sure how to feed her using only 600 calories a day.  That's where The Children's Institute in Pittsburgh comes in.  They have a program there for children with Prader-Willi Syndrome.  It is the only one in the world.  It works miracles.  The kids go there and stay inpatient with other kids that have PWS.  They learn how to exercise and they are put on a very strict diet.  One where you can't coax a cookie or bag of chips out of your cafeteria neighbor. 

    Recently I was inspired by a program I saw on TLC called "My Deadly Appetie" about a boy named William with PWS.  It was incredibly inspiring to us and is what actually got me to call the Institute.  His mother, Faith, is a sweet woman who has been so helpful to me throughout the beginning stages of this process.  I got the application for the Institute in the mail today and was a bit overwhelmed by all the information they need.  Current lab tests, referral letters, current sleep study, current EKG, and on and on.  Looks like I've got my work cut out for me.  It's a lot of work, but if it will make K healthy it's all worth it in the end.