This is my first post for Wasteful Wednesday, posts to highlight how with a child with a metabolic disorder so much of my time, money, and patience are "wasted" on the silliest of things. Also, the insurance company and the government spend a lot of their money (which then translates to the rest of us) on the mistakes and bad policies.
We get our supplies from a very large national supply company. We are pretty stuck with them because we can't get an Infinity pump and Propimex from other suppliers. We regularly get the wrong order. Last month, I placed our usual order, Polycose usually ships in its own case as does the feeding pump bags, and the rest of the supplies are put into larger shipping boxes. After Steve, our UPS guy, left, I realized that one box was not the regular size and shape of what we regularly receive and my pump bags were missing. When I checked the label, I saw that it was a case of 50 of those pink hospital basins, you know the ones you use for sponge baths and puke buckets. The supply company didn't want them back because it wasn't cost effective to return them.
So, if anyone needs 50 pink basins they are at Goodwill.
It does baffle me how a case of Zevex Infinity pump bags could be confused with a case of basins.
Wednesday, August 24, 2011
Tuesday, August 23, 2011
IEPs
Today we had an IEP meeting for Talli. In the end, we got pretty much what we wanted. There is new administrative staff at the school this year and the special ed and health staff from the district has changed. For things that we previously had push back on, some staff were asking for. One thing in particular, is that in the Health Plan within the IEP there will be a listing of the knowledge/skills that a staff member and her nurse need to have prior to being responsible for.
Typically, Talli's IEP is in May right at the end of the school year. We had this one today because we filed a complaint with the State Board of Education, this is different from Due Process in that the State can rule and have things changed without a hearing. It is also quick, they rule within 60 days of the complaint. In May 2010, the school did not give us 10 days notice for the IEP meeting. They also removed the Health Plan from the IEP and months later said it was a 504 plan. They also removed nursing as a support service in her IEP, so no nursing minutes were listed, only consult minutes from the school nurse. The State Board ruled that they had violated our rights (really Talli's) and that since she has an IEP because of the result of her medical conditions, the health plan and the nursing minutes need to be included as part of the IEP. So they had 6 weeks to get to the state 1. a meeting notice that was appropriate and 2. an IEP with the Health Plan included and the nursing minutes stated. Since neither of those things occurred in May 2011 when we met, they needed to hold a new meeting.
Tomorrow, I am going to start a line of posts called "Wasteful Wednesday". It will list the occurrences that happen that waste resources- it could be our time, money, or other people's money. Most are so frustrating, they are comical.
Typically, Talli's IEP is in May right at the end of the school year. We had this one today because we filed a complaint with the State Board of Education, this is different from Due Process in that the State can rule and have things changed without a hearing. It is also quick, they rule within 60 days of the complaint. In May 2010, the school did not give us 10 days notice for the IEP meeting. They also removed the Health Plan from the IEP and months later said it was a 504 plan. They also removed nursing as a support service in her IEP, so no nursing minutes were listed, only consult minutes from the school nurse. The State Board ruled that they had violated our rights (really Talli's) and that since she has an IEP because of the result of her medical conditions, the health plan and the nursing minutes need to be included as part of the IEP. So they had 6 weeks to get to the state 1. a meeting notice that was appropriate and 2. an IEP with the Health Plan included and the nursing minutes stated. Since neither of those things occurred in May 2011 when we met, they needed to hold a new meeting.
Tomorrow, I am going to start a line of posts called "Wasteful Wednesday". It will list the occurrences that happen that waste resources- it could be our time, money, or other people's money. Most are so frustrating, they are comical.
Saturday, June 18, 2011
Our version of Home schooling
Although, Talli does go to ESY I supplement a hodge-podge of different bits and pieces that I have pulled from several places. All combined, we spend no more than an hour on "homework", excluding reading.
Handwriting
Spelling
Math
Geography
Reading
Science
Handwriting- A former OT of Talli's introduced us to Handwriting with Tears. Talli's writing is horrible, although, it has much improved. Occassionally, she reverses her letters, the letters are large, and she has difficulty with spacing. This summer we will work in the Printing Power book, each day she writes in 1-2 pages. On some days, she will write on the lined paper spelling words or items she has composed.
Spelling- We have added spelling goals to her IEP. Each year, there is a list of words that the kids are expected to know, many of the words are repeated to keep them fresh. There are about 100 "no excuse" words for the 3rd and 100 for the 4th grade. Her goal is to have a certain proficiency for both lists.
I make flash cards to help her practice the words. She has a very good long term memory, so once we can get the words in there, she tends to keep them. Since laminating can get expensive and I hate working with the home laminator I purchased a few years ago I do a quick and cheap version- trim them up and tape them to index cards with clear packing tape.
Since the tape doesn't cover the entire card, I have writing space on the back to make notes. I run through the words to make sure she can first read them. There were only 2 words in the 3rd grade list she couldn't read the first time through. Then we work on spelling, if she can spell it out loud (picture a spelling bee), then it is passed off with a note on the back and we don't bother with it for a couple of weeks. We work on about 6 words at a time.
Each day she tries to spell the word I read aloud. Once a week, I have her write them. We also use spellingcity.com to practice the words with the games. Her favorites are Hang Mouse and the word scramble.
Each year's worth of cards fit very nicely in a box for Energy Options candy bars.
Math- Talli is working on basic addition and subtraction, telling time, and counting money. At school, she uses Touch Math. She no longer needs the dots on the numbers or coins, but counts as if they were there.
Each day, I have her do 2 worksheets from the books listed below. Once a week, she gets her allowance of $3.50, which she has to count out and put 1/10 towards tithing and 1/10 towards savings. Then there is a discussion about how much she is going to save for a special event or toy and she has me put away a certain amount for that. Currently, she is saving to pay for her ticket to Disney Live! Three Classic Fairy Tales, which will be here in Illinois in March 2012.
The materials we use are:
Horizons K Math Package (I purchased from Son Light with the flashcards and manipulatives)
Time, Money, & Factions 1-2 (An I Know It Book)
Science- For science we are using
Magic School Bus books and videos
The Human Body, Super Science Activities
Facinating FActs, The Human Body
We talk about the systems of the body and she will do a worksheet out of one of the latter two books.
Geography- We started covering the Great Lakes Region, then the Prarie states, and then the West and Southwest (Florida was discussed almost daily because... That is where Disney World is!).
We used the following materials-
The 50 States Book and Magnetic Puzzle Map
Leap Tag Pen and Map
A cardboard puzzle of the states
A two week trip driving to California
Handwriting
Spelling
Math
Geography
Reading
Science
Handwriting- A former OT of Talli's introduced us to Handwriting with Tears. Talli's writing is horrible, although, it has much improved. Occassionally, she reverses her letters, the letters are large, and she has difficulty with spacing. This summer we will work in the Printing Power book, each day she writes in 1-2 pages. On some days, she will write on the lined paper spelling words or items she has composed.
Spelling- We have added spelling goals to her IEP. Each year, there is a list of words that the kids are expected to know, many of the words are repeated to keep them fresh. There are about 100 "no excuse" words for the 3rd and 100 for the 4th grade. Her goal is to have a certain proficiency for both lists.
I make flash cards to help her practice the words. She has a very good long term memory, so once we can get the words in there, she tends to keep them. Since laminating can get expensive and I hate working with the home laminator I purchased a few years ago I do a quick and cheap version- trim them up and tape them to index cards with clear packing tape.
Since the tape doesn't cover the entire card, I have writing space on the back to make notes. I run through the words to make sure she can first read them. There were only 2 words in the 3rd grade list she couldn't read the first time through. Then we work on spelling, if she can spell it out loud (picture a spelling bee), then it is passed off with a note on the back and we don't bother with it for a couple of weeks. We work on about 6 words at a time.
Each day she tries to spell the word I read aloud. Once a week, I have her write them. We also use spellingcity.com to practice the words with the games. Her favorites are Hang Mouse and the word scramble.
Each year's worth of cards fit very nicely in a box for Energy Options candy bars.
Math- Talli is working on basic addition and subtraction, telling time, and counting money. At school, she uses Touch Math. She no longer needs the dots on the numbers or coins, but counts as if they were there.
Each day, I have her do 2 worksheets from the books listed below. Once a week, she gets her allowance of $3.50, which she has to count out and put 1/10 towards tithing and 1/10 towards savings. Then there is a discussion about how much she is going to save for a special event or toy and she has me put away a certain amount for that. Currently, she is saving to pay for her ticket to Disney Live! Three Classic Fairy Tales, which will be here in Illinois in March 2012.
The materials we use are:
Horizons K Math Package (I purchased from Son Light with the flashcards and manipulatives)
Time, Money, & Factions 1-2 (An I Know It Book)
Science- For science we are using
Magic School Bus books and videos
The Human Body, Super Science Activities
Facinating FActs, The Human Body
We talk about the systems of the body and she will do a worksheet out of one of the latter two books.
Geography- We started covering the Great Lakes Region, then the Prarie states, and then the West and Southwest (Florida was discussed almost daily because... That is where Disney World is!).
We used the following materials-
The 50 States Book and Magnetic Puzzle Map
Leap Tag Pen and Map
A cardboard puzzle of the states
A two week trip driving to California
Thursday, June 9, 2011
Extended School Year
Today was the last day of the regular school year. On Monday, Talli starts Extended School Year (ESY) services. ESY services are for those who risk loosing skills over the summer break or who have an emerging skill that could be lost over the summer break. Those with Propionic Acidemia qualify for ESY as a metabolic crisis or stroke can cause them to loose skills.
In our district ESY is held M-Th in the mornings for 6 weeks. It is held at one elementary school in the district, so she will be bussed there each day. The classrooms are either multi-needs or instructional. Talli is in an instructional classroom. It tends to build her self-confidence as some in her class are a little behind her and some a little bit ahead.
The benefits for Talli are significant- rather than loose about 1 month of skills that the typical student looses over the summer, she tends to gain skills. I do work with her extensively over the summer as well, in my next post I will go over some of the things that we do during the summer and extended breaks from school.
In our district ESY is held M-Th in the mornings for 6 weeks. It is held at one elementary school in the district, so she will be bussed there each day. The classrooms are either multi-needs or instructional. Talli is in an instructional classroom. It tends to build her self-confidence as some in her class are a little behind her and some a little bit ahead.
The benefits for Talli are significant- rather than loose about 1 month of skills that the typical student looses over the summer, she tends to gain skills. I do work with her extensively over the summer as well, in my next post I will go over some of the things that we do during the summer and extended breaks from school.
Tuesday, April 19, 2011
What is average and what does it mean?
I was met with frustration again this week when I was discussing something with a medical provider and she did not seem to understand some basic math terms that are used all of the time in the medical field. The specific point was the "median" life expectancy for those with Propionic Acidemia. Nothing has changed in the past 9.5 years and the median life expectancy remains at 3.5 years.
Median is the middle number when you are looking at a series. So in the series 1, 3, 5, 8, 9, 15, 17, 23, 49-- 9 is the median as it is the middle number. So to get 3.5 years as the median life expectancy in PA there are an equal number of affected individuals dying under age 3.5 years as those older than 3.5 years. Median is useful in describing a set of data or series where the numbers are in a far reaching range.
Mean is what people usually think of when they talk about averages, it is when you take a set of numbers and add them and then divide by how many numbers in the series. So looking at the same numbers above- 1, 3, 5, 8, 9, 15, 17, 23, 49-- Add them 1+3+5+8+9+15+17+23+49=130. Then divide 130 by 9 as there were 9 numbers in the series- 130/9=14.44
So with the same set of numbers the median and mean can be very different.
I was upset because this medical provider was telling me that propionic acidemia was not life threatening, when it is even when you are past the median life expectancy. She was essentially telling me that since she is older we don't have anything to worry about-- no, we do. We have to continue to be careful and cherish everyday because it is not known how long she could have. So shame on her for passing on misinformation from a person who should know these basic math concepts.
Median is the middle number when you are looking at a series. So in the series 1, 3, 5, 8, 9, 15, 17, 23, 49-- 9 is the median as it is the middle number. So to get 3.5 years as the median life expectancy in PA there are an equal number of affected individuals dying under age 3.5 years as those older than 3.5 years. Median is useful in describing a set of data or series where the numbers are in a far reaching range.
Mean is what people usually think of when they talk about averages, it is when you take a set of numbers and add them and then divide by how many numbers in the series. So looking at the same numbers above- 1, 3, 5, 8, 9, 15, 17, 23, 49-- Add them 1+3+5+8+9+15+17+23+49=130. Then divide 130 by 9 as there were 9 numbers in the series- 130/9=14.44
So with the same set of numbers the median and mean can be very different.
I was upset because this medical provider was telling me that propionic acidemia was not life threatening, when it is even when you are past the median life expectancy. She was essentially telling me that since she is older we don't have anything to worry about-- no, we do. We have to continue to be careful and cherish everyday because it is not known how long she could have. So shame on her for passing on misinformation from a person who should know these basic math concepts.
Wednesday, March 16, 2011
Pounding the Pavement for PA
On October 16th, I will be joined by several other parents and friends of those affected by Propionic Acidemia in Columbus, OH. We will be running in the Columbus Nationwide Half Marathon. Our goal is to raise $13,100 for the Propionic Acidemia (PA) Foundation, that is $1,000 for each mile of the race. My personal goal is to raise $4,000. I will donate $1 to the PA Foundation for each mile I run in training and in events. I will also be running in the Hot Chocolate 15K with my husband, Rawlo, on November 5th in Chicago.
HOT CHOCOLATE 5K 2010
Ryan, Jill's son on the left, I am in the center, and Jill, President of the PA Foundation is on the right
The PA Foundation is dedicated to finding improved treatments and a cure for Propionic Acidemia by funding research and providing information and support to families and medical professionals. I have been on the board of directors for the past 5 years and we try very hard to make sure we get the most out of the funds donated.
PA is a tough disorder. Talli has faired well compared to most others that we know of, but we do not know how her life will play out or for low long. PA can cause seizures, low muscle tone, developmental delays, cardiomyopathy (enlarged, weakened heart), Long QT Syndrome, low blood cell counts, osteoporosis, stroke, suppressed immune function, optic and auditory nerve atropy, pancreatitis, and very early death.
Please make a donation to the PA Foundation. You can do so through the Paypal link at http://www.pafoundation.com/, through my Firstgiving page at www.firstgiving.com/fundraiser/brittany-smith-2/poundingthepavementforpa, or send a check payable to Propionic Acidemia Foundation at 1963 McCraren Rd., Highland Park, IL 60035.
You can follow the progress of my training on the Firstgiving link above.
Talli October 2010
Talli October 2001, her first "crisis"
HOT CHOCOLATE 5K 2010
Ryan, Jill's son on the left, I am in the center, and Jill, President of the PA Foundation is on the right
The PA Foundation is dedicated to finding improved treatments and a cure for Propionic Acidemia by funding research and providing information and support to families and medical professionals. I have been on the board of directors for the past 5 years and we try very hard to make sure we get the most out of the funds donated.
PA is a tough disorder. Talli has faired well compared to most others that we know of, but we do not know how her life will play out or for low long. PA can cause seizures, low muscle tone, developmental delays, cardiomyopathy (enlarged, weakened heart), Long QT Syndrome, low blood cell counts, osteoporosis, stroke, suppressed immune function, optic and auditory nerve atropy, pancreatitis, and very early death.
Please make a donation to the PA Foundation. You can do so through the Paypal link at http://www.pafoundation.com/, through my Firstgiving page at www.firstgiving.com/fundraiser/brittany-smith-2/poundingthepavementforpa, or send a check payable to Propionic Acidemia Foundation at 1963 McCraren Rd., Highland Park, IL 60035.
You can follow the progress of my training on the Firstgiving link above.
Talli October 2010
Talli October 2001, her first "crisis"
Saturday, March 12, 2011
Low Protein Foods on Amazon.com
Talli gets into food jags. I few months ago she was eating a LOT of french fries, so much that we had to limit how much she was eating per meal. Then it was Energy Options Candy Bars. Now it is Ener-g Gourmet Crackers. The problem is that I never know what food she is going to take to and for how long. It is easy with fries, since everyone else will eat them and they are readily available.
I only ordered 1 box of the Ener-g crackers when I ordered some low protein/allergy-free foods last week. Well, yesterday she ate 5 of the crackers and would have eaten more if there were more. The box only has 18. I called and visited several local stores and even though Target, Meijer, Jewel, Whole Foods, Fruitful Yield and Dominicks all have a gluten-free sections, none have the crackers. So in looking on-line this morning, I found that Amazon has Ener-g products in their Substribe & Save section. They ended up being only $2.43/box + free shipping, while Ener-g.com has them for $4.18/box +shipping.
So she will have to wait until Tuesday afternoon to get more crackers- I how she will still want them by then.
I only ordered 1 box of the Ener-g crackers when I ordered some low protein/allergy-free foods last week. Well, yesterday she ate 5 of the crackers and would have eaten more if there were more. The box only has 18. I called and visited several local stores and even though Target, Meijer, Jewel, Whole Foods, Fruitful Yield and Dominicks all have a gluten-free sections, none have the crackers. So in looking on-line this morning, I found that Amazon has Ener-g products in their Substribe & Save section. They ended up being only $2.43/box + free shipping, while Ener-g.com has them for $4.18/box +shipping.
So she will have to wait until Tuesday afternoon to get more crackers- I how she will still want them by then.
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