Current weight: 161.2
I had a revelation earlier today: The hardest thing about PWS is that outsiders don't help you like they should (i.e. not watching as closely, giving extra snacks because they 'feel bad', etc.) and the person with PWS doesn't help you either because they are constantly trying to go behind your back and sneak food. You're the lone person standing at the end of a very heavy tug-o-war rope with the rest of the world on the other end.
We have been having a bit of a rough time lately. We pulled K out of her public school and her dad is now home schooling her (he has his bachelor's degree in education and most of his master's degree at this point). It was getting to where every single day she was coming home with food in her bag or on the bus or we would find out she got into something. A 20 oz Mountain Dew bottle that was mostly empty that she had gotten, of all places, in PE class was the final straw. She had only been in school for about 3 weeks and there were several instances already. We just decided the best course of action for her was to pull her out.
Then today, as I periodically do, I looked under her pillow and around her bed which is where she likes to hide any food wrappers she has managed to get into. I found a wrapper for Ritz crackers with cheese (the sandwich kind) that was 150 calories. She said she got it in my room. Then I search her backpack and find 3 wrappers: One for shredded Parmesan cheese, one for a whole block of Gouda cheese, and the other was a Ziploc baggie with unknown contents as all that was left were crumbs. Now, I know these 3 did not come from me. I have never in my life bought Gouda cheese and I buy my shredded parm in a plastic container, not a bag. So I am thinking maybe these were just left overs from school, but I ask her anyway (something I feel is important to do because I need to know where it comes from so I can make changes) and she said the garbage. Are you kidding me? The f'ing garbage?? So disgusting. Her dad had been having her help by taking out the non-food trash and this is what happened. So now there's another thing to change.
Things around here with her have been really tough lately and as a family we're in a little bit of a difficult place with her. I am hoping things get better soon because living like this is really not fun.
Friday, September 28, 2012
Monday, September 17, 2012
Why don't they listen?
Current weight: Unsure
Why do people not listen or think they know better when you tell them how they have to deal with someone who has PWS? Don't they understand that no one knows better than family members what that person needs, how they act, how sneaky they are, etc.?
I am at the point where I want to rip out my hair out of sheer frustration at the whole situation. K's new school started out fine (as it always does) but then she gets comfortable, starts to see consistent areas where she can exploit and get food. This past week, we already had 3 instances of food issues. THREE. In one week. I am just so tired and so frustrated. I don't know how to continue living with the stress of this. It is too much to home school her because she is just so difficult, but sending her to school is equally bad. There is no winning in this situation.
I need to get going on all her paperwork and fast. I need to have a plan for the future in place. Right now everything feels so up in the air and that combined with my frustration is just a bad situation to be in.
Why do people not listen or think they know better when you tell them how they have to deal with someone who has PWS? Don't they understand that no one knows better than family members what that person needs, how they act, how sneaky they are, etc.?
I am at the point where I want to rip out my hair out of sheer frustration at the whole situation. K's new school started out fine (as it always does) but then she gets comfortable, starts to see consistent areas where she can exploit and get food. This past week, we already had 3 instances of food issues. THREE. In one week. I am just so tired and so frustrated. I don't know how to continue living with the stress of this. It is too much to home school her because she is just so difficult, but sending her to school is equally bad. There is no winning in this situation.
I need to get going on all her paperwork and fast. I need to have a plan for the future in place. Right now everything feels so up in the air and that combined with my frustration is just a bad situation to be in.
Thursday, September 13, 2012
Challenges
Current weight: 161.2
Weight lost: 14.8
While K has lost quite a bit of weight and I am proud of that, there are so many challenges that just crop up with PWS. You get into a routine, you think everything is going fine and then BAM! You discover something that makes you change everything about what you were doing. This is how it always happens in our house with PWS. Seriously, it's almost something I can count on.
Today while I was changing the sheets on K's bed, I discovered a pile of wrappers of food she had collected from various places around the house, eaten, and stashed the wrappers. I was surprised and not surprised at the same time. We shop at Costco and since the girls moved in with us, we had to squeeze everyone in our apartment and so have had to go from storing our Costco foods in my office (now K's sister's room) to our bedroom. There is no room in the kitchen or pantry. So, we put them up super high thinking there was no way she could reach them. Unfortunately we were wrong. So I think the plan at this point is to go buy a door handle with a lock and key and swap out our doors. Also, her sister is going to have to keep her back pack in the kitchen or our locking bedroom from now on since she can't seem to remember to get the food out of it before K goes in her room and searches through her stuff for food. I was wondering why with the extra activity of having 2 PE classes at school her weight loss had significantly slowed. I guess now I know.
I am so very frustrated and tired and it can be so incredibly difficult from day to day. Of course I will march on because that it was I have to do, but today is just a day where I feel down.
Weight lost: 14.8
While K has lost quite a bit of weight and I am proud of that, there are so many challenges that just crop up with PWS. You get into a routine, you think everything is going fine and then BAM! You discover something that makes you change everything about what you were doing. This is how it always happens in our house with PWS. Seriously, it's almost something I can count on.
Today while I was changing the sheets on K's bed, I discovered a pile of wrappers of food she had collected from various places around the house, eaten, and stashed the wrappers. I was surprised and not surprised at the same time. We shop at Costco and since the girls moved in with us, we had to squeeze everyone in our apartment and so have had to go from storing our Costco foods in my office (now K's sister's room) to our bedroom. There is no room in the kitchen or pantry. So, we put them up super high thinking there was no way she could reach them. Unfortunately we were wrong. So I think the plan at this point is to go buy a door handle with a lock and key and swap out our doors. Also, her sister is going to have to keep her back pack in the kitchen or our locking bedroom from now on since she can't seem to remember to get the food out of it before K goes in her room and searches through her stuff for food. I was wondering why with the extra activity of having 2 PE classes at school her weight loss had significantly slowed. I guess now I know.
I am so very frustrated and tired and it can be so incredibly difficult from day to day. Of course I will march on because that it was I have to do, but today is just a day where I feel down.
Tuesday, August 14, 2012
Progress!
August 14, 2012
Current weight: 163.4
Total weight lost: 12.6 pounds
I haven't been following a strict diet at this point (I do watch what she eats, portion control, etc., but I haven't been writing everything down) and we haven't been doing a ton of exercising lately. She still walks the dogs 3 times a day and helps out with her little sister, but outside of that she spends quite a bit of time on the computer. I just have been so busy lately between getting them registered and ready for school, requesting medical records, making tons and tons of phone calls trying to get their insurance done and SSI started, plus trying to get her on the wait list for The Resource Exchange for housing funding (current wait is 7-10 years) I just haven't had a lot of time to stay on top of her exercising. That's why when I weighed her this morning I was so shocked: She had lost 12 1/2 pounds! We must be doing something right at this point. I even weighed her twice just to be sure. I am so happy about this progress. She has lost almost all the weight she gained while living in Washington this past year.
Things have been a bit difficult lately just trying to get settled. We don't like the schools in the dictrict we live in, so we had to apply to get the kids into the next district over. But, they don't want to go to the same school. We already got the younger girl registered, but we are waiting to hear if K got in. I imagine it is more of a process because of her special needs. I hope we find out soon, though, because school is scheduled to start this Thursday. I don't imagine she will be starting on time.
I also have sent requests for all her medical records to Seattle Children's Hospital, The Everett Clinic, and the University of Washington Medical Center (where the PWS clinic is located). I am still waiting for all the records to come back. So far I have only received a copy of her IEP. I needed this to include an IQ score for The Resource Exchange (as they will only accept you based on IQ score...) so now I have to wait until she gets into school and then request that the school perform a full IQ test. It seems like every time I get something done or I get answers about something, I come across more and more that needs to be done. So far this whole thing has been never-ending. Once we get her medical situation sorted out, we will have to establish her with a new primary care and then have them fill out paperwork for her SSI. Unfortunately, all the physicians she was established with in Washington haven't seen her in a year (...) and so they will not fill out the paperwork. Once I get everything gathered and sorted out for all of this, it will be about time to begin guardianship paperwork. Sigh. Makes me tired just thinking about it.
Current weight: 163.4
Total weight lost: 12.6 pounds
I haven't been following a strict diet at this point (I do watch what she eats, portion control, etc., but I haven't been writing everything down) and we haven't been doing a ton of exercising lately. She still walks the dogs 3 times a day and helps out with her little sister, but outside of that she spends quite a bit of time on the computer. I just have been so busy lately between getting them registered and ready for school, requesting medical records, making tons and tons of phone calls trying to get their insurance done and SSI started, plus trying to get her on the wait list for The Resource Exchange for housing funding (current wait is 7-10 years) I just haven't had a lot of time to stay on top of her exercising. That's why when I weighed her this morning I was so shocked: She had lost 12 1/2 pounds! We must be doing something right at this point. I even weighed her twice just to be sure. I am so happy about this progress. She has lost almost all the weight she gained while living in Washington this past year.
Things have been a bit difficult lately just trying to get settled. We don't like the schools in the dictrict we live in, so we had to apply to get the kids into the next district over. But, they don't want to go to the same school. We already got the younger girl registered, but we are waiting to hear if K got in. I imagine it is more of a process because of her special needs. I hope we find out soon, though, because school is scheduled to start this Thursday. I don't imagine she will be starting on time.
I also have sent requests for all her medical records to Seattle Children's Hospital, The Everett Clinic, and the University of Washington Medical Center (where the PWS clinic is located). I am still waiting for all the records to come back. So far I have only received a copy of her IEP. I needed this to include an IQ score for The Resource Exchange (as they will only accept you based on IQ score...) so now I have to wait until she gets into school and then request that the school perform a full IQ test. It seems like every time I get something done or I get answers about something, I come across more and more that needs to be done. So far this whole thing has been never-ending. Once we get her medical situation sorted out, we will have to establish her with a new primary care and then have them fill out paperwork for her SSI. Unfortunately, all the physicians she was established with in Washington haven't seen her in a year (...) and so they will not fill out the paperwork. Once I get everything gathered and sorted out for all of this, it will be about time to begin guardianship paperwork. Sigh. Makes me tired just thinking about it.
Friday, August 3, 2012
Unsure
August 3, 2012
Not sure of current weight.
We got off track on K's weight because I really got discouraged. In one day she gained 3 pounds and I just couldn't figure out where from. I was driving myself crazy over this when I felt like I was putting in all this effort only to send her back to her mom in 5 weeks to have her gain it all back because her mom could care less about her diet. As K once put it "My mom doesn't like it when I go on a diet". Nice, huh?
Well, yesterday we got the call I had been wondering if we would get. Her mom called us to tell us not to send her home, that she couldn't deal with taking care of her and we needed to just keep her. So, here we are! I am going to do some more research and really try to hone her diet. My husband is going to take over the exercise side of things for the most part. We are enrolling her in a new school out here where we live so it should be interesting to see how they adapt to her challenges.
I feel renewed because for once we won't have to worry about a lack of effort (or outright sabotage) from the other parent. We can just do what's best and hope for lasting results. I have also begun to work on getting her on state medical insurance and beginning the process for SSI. I submitted several records requests today (things I had already done once before and left for her mother to do, which she did not do and now has the records and is refusing to send us anything...). So, I am starting again. I feel better that I can control this all because I think it really needs to be done in an organized and efficient manner. This truly is what is best for K.
In the coming days, weeks, and months I will not only be updating about diet and exercise, but about the paperwork process of getting all of her stuff handled (SSI, guardianship {she's almost 18}, medical, etc.) and just general life with PWS. Thanks for sticking with me!
Not sure of current weight.
We got off track on K's weight because I really got discouraged. In one day she gained 3 pounds and I just couldn't figure out where from. I was driving myself crazy over this when I felt like I was putting in all this effort only to send her back to her mom in 5 weeks to have her gain it all back because her mom could care less about her diet. As K once put it "My mom doesn't like it when I go on a diet". Nice, huh?
Well, yesterday we got the call I had been wondering if we would get. Her mom called us to tell us not to send her home, that she couldn't deal with taking care of her and we needed to just keep her. So, here we are! I am going to do some more research and really try to hone her diet. My husband is going to take over the exercise side of things for the most part. We are enrolling her in a new school out here where we live so it should be interesting to see how they adapt to her challenges.
I feel renewed because for once we won't have to worry about a lack of effort (or outright sabotage) from the other parent. We can just do what's best and hope for lasting results. I have also begun to work on getting her on state medical insurance and beginning the process for SSI. I submitted several records requests today (things I had already done once before and left for her mother to do, which she did not do and now has the records and is refusing to send us anything...). So, I am starting again. I feel better that I can control this all because I think it really needs to be done in an organized and efficient manner. This truly is what is best for K.
In the coming days, weeks, and months I will not only be updating about diet and exercise, but about the paperwork process of getting all of her stuff handled (SSI, guardianship {she's almost 18}, medical, etc.) and just general life with PWS. Thanks for sticking with me!
Friday, July 20, 2012
Day 12
July 20, 2012
Current weight: Uknown
Weight lost: Unknown
Lunch:
1 spaghetti and meatball lean cuisine (270)
1 Cascade Ice (0)
Total: 270
I did not weigh her this morning as she came back from her grandma's after breakfast. I normally weigh her first thing in the morning before she eats anything in order to keep her weigh ins fairly consistent. From what I can tell of what she ate yesterday (according to K so take it with a grain of salt)... she had pizza for dinner with fruit snacks, grandma took her out for ice cream and they sat around watching TV and movies all night. This morning she had cocoa puffs and I know her grandma uses 2% milk only so she had that also. I asked her if she got into the kitchen at any time while there and she said no but who really knows. I am not hopeful about her weight tomorrow morning. We shall see how it turns out.
Current weight: Uknown
Weight lost: Unknown
Lunch:
1 spaghetti and meatball lean cuisine (270)
1 Cascade Ice (0)
Total: 270
I did not weigh her this morning as she came back from her grandma's after breakfast. I normally weigh her first thing in the morning before she eats anything in order to keep her weigh ins fairly consistent. From what I can tell of what she ate yesterday (according to K so take it with a grain of salt)... she had pizza for dinner with fruit snacks, grandma took her out for ice cream and they sat around watching TV and movies all night. This morning she had cocoa puffs and I know her grandma uses 2% milk only so she had that also. I asked her if she got into the kitchen at any time while there and she said no but who really knows. I am not hopeful about her weight tomorrow morning. We shall see how it turns out.
Thursday, July 19, 2012
Day 11
July 19, 2012
Current weight: 169.8
Weight lost: 6.2
Breakfast:
1 c Cheerios (100)
1/2 c 1% milk (50)
1 medium banana (105)
Total: 255
Lunch:
2 c Progresso light clam chowder soup (200)
1 packet Craisins (100)
1 Cascade ice (0)
Total: 300
Finally she has started on a downward trend again. I hope we continue on this trend. Even if she only loses a little at a time, I just want her to keep losing. Today should be interesting. She is going out today just her and her grandma. I am sure they will be gone during lunch time so hopefully that goes well.
Update: I sent her with some easy to prepare foods to her grandma's, listed above.
Update 2: She ended up spending the night with her grandma so I am unable to finish yesterday's meal list.
Current weight: 169.8
Weight lost: 6.2
Breakfast:
1 c Cheerios (100)
1/2 c 1% milk (50)
1 medium banana (105)
Total: 255
Lunch:
2 c Progresso light clam chowder soup (200)
1 packet Craisins (100)
1 Cascade ice (0)
Total: 300
Finally she has started on a downward trend again. I hope we continue on this trend. Even if she only loses a little at a time, I just want her to keep losing. Today should be interesting. She is going out today just her and her grandma. I am sure they will be gone during lunch time so hopefully that goes well.
Update: I sent her with some easy to prepare foods to her grandma's, listed above.
Update 2: She ended up spending the night with her grandma so I am unable to finish yesterday's meal list.
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