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.