metabolic mama

Taking a break

2011-10-18T00:10:00.003-05:00

I am having to take a break from my blog. My family needs more of me right now and this is something that I like to do, but can easily step away from for a while.

The Birthday Party

2011-10-10T14:36:00.009-05:00

Prior to having kids, Rawlo and I decided that some events were worth celebrating and making a big deal about. Birthdays are definitely something that we celebrate big in our house. Family parties are great, but we get others involved. With PA, you don't know how many birthdays there will be, so make the most of the ones Talli has.

Talli wanted a Frankenstein cake, it seemed beyond me, so I asked a friend to make it for her.

She was dying for a Chuck E Cheese party, so we gave in on that one. I had previously provided games or crafts for the kids to do with goodie bags to boot and Chuck E Cheese ended up being cheaper than last year's crafting party.

There was one girl who did not come because she is afraid of Chuck E. That isn't a problem with my kids who think that Chuck E is real, sleeps in the back room, and sneaks cheese from the kitchen. My kids are character groupies! The staff at our restaurant know Talli well and when there is no one there, Chuck E will play games with Talli and give her tokens as well. I know some are grossed out by places like Chuck E Cheese, but ours is very clean. We tend to go first thing in the morning when no one else is there and the staff is disinfecting the games and play equipment.

Wasteful Wednesday- bills and bills

2011-10-05T17:40:00.006-05:00

I received another billing statement from the genetics labs for amino acids. They listed our insurance and Talli's Medicaid on the statement AND we were just in clinic, so I know they have the information. So I called. This was a brief call only lasting 5 minutes. It could have been longer as they have a voice prompt system and I rarely can get my kids to be quiet during business hours to not be picked up, but they were quiet.

The billing person took a while to find the claim I was calling about. She said it was billed to Medicaid the same day the statement was sent out. So, I guess this is why I get a bill every month-- they are billing me at the same time they are billing Medicaid. It seems as though their time would be saved as well as mine if they waited even 10 days to send these out. However, I am guessing some percentage of people will pay the claim because they got a bill with statements implying that action would be taken if you do not pay within 30 days of the claim.

Happy Birthday Talli

2011-10-04T09:02:00.003-05:00

Happy Birthday to Talli!!

10 years ago Talli was born. Happy Birthday to you!

We finally meet.

Applied Nutrition has a birthday club. Talli got a $5 off her next order of $25 or more coupon with her birthday card from Maddy’s. We have already used it, since she has been eating 1-1.5 Energy Option Candy bars per day.

Applied Nutrition also has a new low protein cookbook available. Homestyle Cooking: Recipes the Whole Family Will Enjoy is available for FREE thru 12/31/2011 with promotional code COOKBOOK11. I have not tried the cookbook, but will be soon.

Wasteful Wednesday- she is not smelly

2011-09-29T17:06:00.003-05:00

This post is on another DME shipping mistake, which happened a few years ago. Propimex-2 is the formula that Talli uses to provide her with essential protein without the offending amino acids (the ones she can't break down). We get 9 cans each month and they take up a bit of space in the shipping boxes.

I opened a large box, although not large enough to contain the formula and other loose supplies, and there was no Propimex-2, just 9 sticks of deodorant. The DME provider asked that we ship those back to them, they must have been costly generic deodorant.

I do wonder what insurance plan is covering deodorant for their subscribers.

Talli may smell like a fish (a common side-effect of taking non-IV Carnitine), occasionally ketones, and sometimes the unique smell of PA, but at age 5, she definitely didn't need deodorant.

School staffing meetings

2011-09-22T11:10:00.000-05:00

The staff at Talli's school has a meeting each week to discuss how things are going with her, any problems, and any coordination that needs to happen. The meeting lasts 30-60 minutes and is lead by the Resource teacher. Here are those typically in attendance:

Resource Teacher

Classroom Teacher

School Nurse

1:1 Nurse

Speech Therapist

Occupational Therapist

School Social Worker

Sometimes the principal or district staff will attend as well.

If there is a major concern they ask me to come and meet with them, although I am welcome to come anytime. This afternoon is the meeting and I have been asked to come. There is no issues on their end. This does give me a chance to ask any questions that I have.

There are only 3 things that are pressing on me to discuss.

1. On a geography test on the continents and oceans, Talli got all of the continents correct, but didn't put anything down for the oceans. Did she run out of time? Did she get frustrated and give up?

2. Talli has been coming home with flashcards with her spelling words for the week, which is really helpful. This week she came home with ones she made herself. The problem is that her handwriting is so poor (hence, the reason she sees the OT) that in looking at them she couldn't tell whether a letter was a 'c' or an 'l'.

3. I feel like Talli is being asked to be more independent before she has the skills to do something herself. Currently, she has a fairly nasty yeast infection and having a wet bottom is contributing (she hasn't been on any antibiotics for a while). She usually is in a rush to goto the bathroom because she doesn't want to miss whatever is going on and she will either forget to wipe or she will get her pants wet in the process.

Wasteful Wednesday- another DME delivery mistake

2011-09-21T20:39:00.005-05:00

The title of the post isn't very good because our DME provider very rarely gets Talli's order accurate.

We get 2 cases of Polycose each month, which is 12 cans. Polycose is pure glucose-- we go straight for the blood sugar rise! It contains no protein whatsoever and is a main component of Talli's formula. In the past, when she has been sick we can use more than a can a day.

So not too long ago, Steve, dropped off our supplies and the boxes looked a little odd (again, not unusual). Instead of polycose, we received 2 cases of Ketocal. Ketocal is a high fat, high protein formula for the use in those with uncontrolled seizures.

IF we were to mistakenly use Ketocal for Polycose Talli would be getting 22.5g of protein, 108g of fat, and 1080 Kcals instead of 0g of protein, 0g of fat, and 465Kcals. I am sure that Talli would have been vomiting long before we could have given her that much fat and protein.

The DME provider had the formula picked up and shipped out the polycose after I called them. Mistakes like this makes me nervous for those who aren't hypervigilant and those who do not question a problem. It also makes we ponder the literacy rate in this country and liability issues.

But Talli is safe from the inappropriate formula.

The next DME mix up to report on-- "No, she doesn't smell like that!"

Steve, making my life easier

2011-09-16T14:01:00.006-05:00

There are some things that I do to make my life easier in handling the chaos that is my life. I try to have items delivered to my home instead of going out and purchasing them at a brick and mortar store. It is very painful for me to take all three of my kids with me shopping. Talli will start straightening products on the shelves at the store, there will be a lot of negotiating at the grocery store on purchasing foods not on the list, and I am just far out numbered. O is in the midst of the terrible 2's and instead of screaming he will show off his verbal skills by calling me names and if that doesn't get to me sufficiently he will just start pinching my hands that are being used to push the cart.

So if there is a free shipping offer somewhere or I can use Amazon Prime, then my life is just so much easier.

My kids think that if they want a toy that Steve, the guy in the brown truck, will bring it to them. They say it like he is Santa.

Talli thinks that all things can be acquired on amazon.com or ebay; she did hit the nail on the head on that one.

Here is a picture of what Steve brought us today with the exception of my husband's birthday present that I have already hidden away.

There is-
- Talli's monthly enteral supplies (I have not yet checked it for accuracy, but the volume is not quite right, so I am guessing that at least one case of formula is missing)
- hand soap (we go through it like water, especially when O tries to drink it)
-the expansion pack for The Settlers of Catan (for an adult game party tomorrow).

This week I have also had brought to my door:
- a pair of discontinued Saucony running shoes from Shoes.com
- socks for M, just to use a discount at Shoes.com
- a 1987 dinosaur costume sewing pattern on ebay (there was some competitive bidding on this!)
- a case of latex-free Coban from 3M for wrapping Talli's extension with
- a case of pop-up books I got off Totsy.com (they are elaborate and NOT for little kids)
- Dracula: A Classic Pop-Up Tale from Amazon.com, as it was cheaper than Totsy
-LeapPad Leap book the Lost Dinosaur from Amazon.com

Wasteful Wednesday- FINAL DEMAND

2011-09-14T18:44:00.006-05:00

I was planning on writing today about the 3 appointments scheduled back to back on Monday (the doctor's office scheduled testing and then to see the doctor right afterwards) that lasted almost 4 hours instead of the planned 90 minutes. However, when I got home today from two more back to back appointments for Talli I saw a letter in the mail from the hospital. A couple of weeks ago I wrote about the ongoing saga of the hospital billing department.

Today, the letter stated it was a "FINAL DEMAND" (caps and bold are theirs) on a bill for 3/11/2011. "We have been unsuccessful in our attempts to reach you and discuss your balance." Hmmm, the letter is dated 9/6/2011 and the only time I have gone without a working cell phone (my home phone rings to my cell phone) is the past 2 hours when I somehow lost the back of the phone and the battery and September 7th when I my cell phone fell out of my pocket and into the toilet, however, my voicemail is working just fine.

It goes on to say how they are sending me to collection if the balance of $3,806.25 is not paid within 10 days. Wow! Isn't that two days from now!

So much for the head of billing who is actually a hospital employee rather than a contractor fixing everything for me.

I will be calling the patient advocate office again.

I sometimes wonder when I get to parent vs. running around in circles.

Wasteful Wednesday- Food (a day late)

2011-09-08T16:28:00.004-05:00

Sorry, I am a day late on this one.

One of the big parts of PA is the lack of interest in food and for us food jags.

Talli will go for weeks with only eating a few bites of food a day. She does always have a lunch packed for school and there is at least one dish she can have at dinner with the family. A couple of times a month, she will also choose what we are eating as a family. However, she will have food jags that are more like binges and want to eat a particular food.

It could be a whole box of Betty Crocker Fruit Snacks in one day (.8g protein and 800 kcals). That is easy to accommodate, since I can just run to the store and if she loses interest I can give them to the boys as a treat. When it is specialty low-protein foods; it can get expensive and a lot of food can be tossed if I overestimate the length of the food jag.

She has had food jags with Ener-g pretzels (~ $2.00 for a 2.65oz bag or about 8 times the cost of Rold Gold pretzels) and I overbought, several bags went bad. Also, with Energy Options candy bars where she was eating more than a bar per day ($2.94 for a 50g bar, the size of a Hershey bar) I ordered enough for 2 weeks and reorganized the pantry and misplaced them, although, it didn’t matter because she stopped eating them. I don’t think the Energy Options bars will be tossed in the future as my boys think they are great treats when they snatch some (blehhhhh!!).

It would be nice to have a local network of families to buy or swap with. OR IF food was covered we could go "shopping" at clinic and take what we need instead of trying to plan ahead and wait for it to ship. I guess insurance would need to recognize that medical foods are just as needed as formulas-- oh, wait! some don't even see the need for formula.

Wasteful Wednesday- AAAAAAHHHH! My credit report

2011-08-31T16:36:00.000-05:00

Talli goes to the hospital every 4 weeks for IVIG. IVIG is extremely expensive, around $3,500 for one dose for a 71lb child. That price is not for the room, other medications she takes, nor labs. She has been getting it since 2005 and the number of hospitalizations for illness has significantly dropped.

Over a year ago, the hospital she goes to outsourced their billing. Now, at least once a month we get a statement saying we owe between $4,000 and $24,000. We call them and they usually say that they do not have her Medicaid information. This is pretty annoying because I verify when she registers each month that they have the information and they do.

Well, last month, we got another statement. This one indicated that we need to pay approximately $24,000. Rawlo called them with the Medicaid information on July 26^th. While we were on vacation July 30-August 14 I kept getting calls from an 800 number, but it would hang up prior leaving a message. While we were sitting in the car August 4th, I called the number, and it was the hospital billing department. Remember, this is the outsourced company. I spent about 15 minutes on the phone with Allysa. She said we needed to pay the entire amount or be sent to collections. She said that the immunologist’s office had an internal form called “IVIG” that needed to be filled out each month in order for the hospital to bill the insurance company. She said she would put the account on hold for 14 days and then it would be sent to collections.

I mentioned this to Rawlo and he freaked out a little bit about our credit rating and the problem going to collections causes. He didn’t realize that “being sent to collections” threat is told to me about every other month from billing departments (If you have Medicaid and they are a Medicaid provider they cannot bill you nor send you to collections.) So I called again and got Warren. Warren indicated that Talli had 9 different billing accounts and that the Medicaid information was not listed on all of them, he said he would take care of it.

The day after we got home, I stopped into the doctor’s office and verified that they did not need a form filled out. Ya, there is no form.

After we were home, we got 2 letters from the hospital indicating that we needed to pay $4,000+ and $12,000+. There was no person listed on the letter, date of service, nor services received on the letter. It was dated August 18^th. I also received a letter from Blue Cross to send them information on our other health insurance policy, so that they can coordinate benefits. This is usually sent out when a provider sends in billing information and indicates that the patient has another insurance plan. This is needed when a person has two insurance plans, typically when both parents have policies that cover their children, so the insurance companies can decide who pays for what. Care coordination is not needed when the second insurance is Medicaid. Medicaid is a payer of last resort, meaning they pay out benefits after insurance and any other funds are applied to the bill. As a result of this, insurance companies do not consider Medicaid another insurance policy.

I called and spoke to Warren again. He indicated that Talli’s account was under review, so no letters should have been sent out to us. He also said that the $4,000+ bill was for me, but the balance was only $356.26. I told him that I had sent in a payment for $356.26. He checked and they had received my check, but applied it to Talli’s account. I told him to correct that part and he said he would. He said that the rest of the balance was waiting on me filling out the Care Coordination form. I got the dates of service for the $12,000+ bill and he gave me a list. I looked through our EOBs and our insurance had paid on all but 1 of the dates of service. I spent 45 minutes on the phone with Warren.

Then I called Blue Cross and straightened things out about the care coordination. The rep also said that they would not be paying for IVIG until Talli went off of it for 12 months and it was reviewed again. That is not going to happen. She indicated she would send a letter to the hospital listing the payments they had sent and copies of the checks that the hospital had electronically deposited. I spent 35 minutes on the phone with her.

I was pretty miffed after all of these calls because it was a pain. I was planning on running and missed my run because I was on the phone.

So….. I called the hospital patient advocate and gave her a 5 minute rendition of what was going on. She said that she was hearing this a lot since the billing was outsourced and would talk to the head of the department. The next morning, I got a call from the Billing Department head, she said that the insurance was waiting on medical information from Talli’s doctor before they would pay out on the IVIG. I told her that it was the first I was hearing about that and that I had spoken with Blue Cross the day before and they indicated they were not going to pay until Talli took a break from IVIG. She said she would take care of the calls and bills.

It has been a week now and no one has called or sent me any nasty grams in the mail. I spent at least 2 hours on the phone trying to straighten this all out and more time shifting through EOBs. Like most other metabolic mamas we have inches of paper that makes up the EOB stack for this calendar year and finding anything is a pain. I did discover that the hospital billed Blue Cross twice for the same hospital stay in April and Blue Cross paid them twice, differing amounts each time. So of course the irony that is my life, the hospital sends me a bill when they have already been paid twice.

When I have a spare minute I will let Blue Cross know.

Wasteful Wednesday- pump bags or basins

2011-08-24T09:55:00.005-05:00

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.

IEPs

2011-08-23T18:37:00.004-05:00

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.

Our version of Home schooling

2011-06-18T23:02:00.004-05:00

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

Extended School Year

2011-06-09T15:22:00.004-05:00

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.

What is average and what does it mean?

2011-04-19T18:10:00.003-05:00

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.

Pounding the Pavement for PA

2011-03-16T16:46:00.008-05:00

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"

Low Protein Foods on Amazon.com

2011-03-12T11:56:00.003-06:00

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.

What Not to Say to a Mom with a Seriously or Terminally Ill Child

2011-02-15T16:38:00.004-06:00

I came across this article today by Rachel Carpenter http://www.associatedcontent.com/article/1645757/what_not_to_say_to_a_mom_with_a_seriously_pg3.html?cat=25 and it is so true. These are things you should not say to a mom of a seriously ill child.
#1 "No matters what happens. it's God's will. [sic]"
#2 "I just know he/she will get better."
#3 "Are you needing help?"
#4 "I know exactly how you feel. My baby was in the hospital with RSV last year."
#5 "I had a friend go through this too. It was really tough for them, and now the child has lifelong disabilities."
#6 "I just don't know how you do it."
#7 "You need to relax. You need to be strong for your other children."

I definately get #6 a lot. I don't know how I do it either. Many days I want to stay in bed and pull the covers over my head, but I can't. There are feedings to do, appointments to make and go to, and kids to feed. If I looked pulled together it is because I rely on Diet Dr. Pepper and try really hard not to cry in front of my kids.

Occasionally, I get #3, and as the article points out, it is difficult to say 'yes' to the phrasing of that particular question. YES! YES! I always need help. It is horrible dragging 3 kids to an appointment, especially to offices that aren't kid friendly (most), have small rooms (many), it is an appointment where I actually need to hear what the doctor is saying (typically), or they run a couple of hours behind schedule (much more than one). I could definately use someone to cook us a meal that is low lactose (O), kiwi-free (M), peanut, egg, nut-free, etc. (Talli), low protein & low fat (Talli), and high protein & low carb (me). Meal planning is enough to want to crawl under the covers as mentioned above. ;).

A reminder to always check...

2011-02-09T12:57:00.002-06:00

I know that everything should be checked with Talli: verify medicatins are correct, the right formula is given, packages of food are checked for allergens, IV fluids are correct, etc., etc.,

A couple of years ago, she was in the hospital and TPN had been ordered. It was a non-modified amino acid version, the kind anyone else would get. Some visitors were leaving when the IV bag was hung and as I walked them to the door, I checked the bag. The protein count on the bag wasn't what I had expected, so I alerted a nurse. The pharmacist had made a mistake and 24 hours worth of protein was in a bag to run for 4 hours. I am sure that no long term damage would have been done, but it likely would have prolonged her stay. Everyone was very nice and apologetic over the mistake and a new bag was sent up within the hour.

Yesterday, Talli got her delivery of some Energy Options candy bars. She has been eating a lot lately and we had run out of the mint and while chocolate versions. Energy Options candies are made to be completely protein free and are peanut and tree-nut free. To foster her indepenence, we usually have the bars in a designated place for her. Instread of having the imprint of "Energy Options" on the bar, it said "PhenylAde". Appled Nutrition makes both Energy Options candy and a bar called PhenylAde that is an amino acid modified food to replace formula for someone with PKU. The bar contains 10g protein equivalant, lacking only phenylalanine. So if Talli ate one, she would be getting 100% of her protein for the day.

The bars are getting sent back to the manufacturer, so they can verify where the problem lies. Is this actually a PhenylAde bare that got into an Energy Options package and box or an Energy Options bar with the wrong imprint. It was a reminder that everything does needs to be checked before it goes into Talli to keep her as well as she is.

I did check all of the mint ones by pressing through the wrapper to read the imprint on the bar.

Education Resources

2011-01-27T13:33:00.010-06:00

I came across this information and just needed to share!

Baxter makes a couple of formulations of IVIG. Talli was going to start on one of them, but we found out they contain glycine. Talli's glycine level is already very elevated, which is a complication of PA. Baxter provides the following at no charge at www.mygardian.com/gardian/living-with-pi/resources.html

The blue bear, named IGI V, is included in the Therapeutic Play Kit. It contains the bear, medical supplies to give the bear and IV and remove it. There is a notebook for the child to record how the infusion went, a guide to theraputic play for parents, and a story book for kids. Even if the child just goes into the hospital occasionally and doesn't receive IVIG, this would be an excellent tool kit in helping them to cope.

We used IGI V during Talli's last hospitalization. She put an IV into the bear, including talking about how it was important not to get it too close to thumb for video game playing.

IGI V's Medical Records is included in the Theraputic Play Kit or you can order it separately.

The ABC's of Kids Like Me is an ABC picture book and some of the pages are medical related. For example, 'D' is for Doctor. The second half of the book is blank so you can create your own personalized ABC book.

This is My IVIG Book is a children's story book about getting IVIG. It includes a blank book (you could easily customize the cover by covering up IVIG with hospital or doctor), paper and stickers.

The last thing is for parents. There are 2 Notebooks in the Wellness Kit with divider pocket folders and blank pages to keep track of medical information, bills, etc. You could also customize for your metabolic child with the Care Notebook that the Propionic Acidemia Foundation put together. It is available under 'sites of interest' at http://www.pafoundation.com/. It is available in English and Spanish.

PA Consensus Conference

2011-01-27T13:29:00.002-06:00

Tomorrow, I fly out to Washington, DC for a PA Concensus Conference sponsored by Children's National Medical Center. There will be a small group of metabolic doctors attending, as well as liver transplant experts, a neurologist, and representatives of parent groups. I will be representing the Propionic Acidemia Foundation, along with my dear friend, Jill Chertow Franks.

We hope to make great progress in creating documents with recommendations on screenings and monitoring. It is expected that the information gathered and discussed will be published.

Mucinex mini-melts for Kids! not compatible with feeding tube

2010-12-29T08:52:00.003-06:00

Talli has a pretty nasty cough. Her pallative care nurse suggested Robitussin DM, however, the pharmacy only had adult Robitussin DM, so the pharmacist suggested using Mucinex mini melts. She indicated that it is like Prevacid Solutabs, so would fit into her feeding tube.

We did try it last night. Unfortunately, Mucinex completely clogged up her tube AND her button. Changing a button is anxiety provoking to Talli, so I try to avoid it as much as possible. After cleaning out the extension set while not attached to her, I realized that her button was indeed clogged. I found a bamboo skewer and gently used the tip to unclog the button. The one way valve on the button was already shot, so I didn't have to worry about breaking it.

So Mucinex mini-melt for Kids! doesn't work with a feeding tube, so stick to the liquid version. Prevacid Solutabs and Tylenol meltaways DO work in a feeding tube.

Hospital Beds

2010-11-22T22:05:00.002-06:00

Hospital beds, what can be done to get a good night's sleep in one? I don't mean the electronic beds that raise and lower, fold, and weigh patients. I mean the ones that the parent or significant other sleeps in to be near the patient.

The hospital that Talli usually stays at has 3 different types of beds, the worse being a hide-a-bed type, that folds out from a chair with a thin, likely spring mattress. The better ones in my opinion are more like day-beds that a couches and may have removable pillows or pull out slightly from the wall. My dorm bed in college was this latter type.

Over the weekend, I spent the night with Talli in the hospital. For the past 3 years, my husband has taken the honors on almost every night (40+ nights), however, he was sick when Talli was admitted, so I stayed with her. Unfortunately, she was put in a small room that will only accommodate the worst of the parent beds. I tried a couple of things to help make my attempt at some sound sleep-
1. sleep with your head at the foot of the bed. While initially, it felt an though I was laying downhill, a couple of pillows remedied that. The mattress was less worn at the foot.

2. layer a couple of blankets. I folded 2 blankets in half under the sheet. This gave more support and evened out the feel of the springs, so one wasn't poking me in the knee or some other random place.

3. Sleep in the parent room or "quiet room". I didn't do it this time, but I have in the past. The beds seem to the newer and more comfortable in there. Even in our hospital with about 15 peds beds, there is a lounge-type room with an extra bed in it. At larger facilities, we have used their parent suite that had several beds and a full bath with sitting area.

4. Trade beds. Talli loves to sleep in the pull outs, so often she and my husband switch (with the nurse's ok). When O had surgery a few weeks ago, the nurse gave me the option of just having a hospital bed in the room to sleep together, instead of a crib for him. However, with that option, I would have needed to stay with him ALL of the time and I knew at some point I would need a crib to just use the bathroom.
When Talli was younger she also liked to sleep in the wagon they had in the unit, so that freed up her bed. When she had pneumonia once, she would only use the oxygen if she could sleep in the wagon.

Please post a comment if you have other ideas on how to get a good night's sleep in the hospital.

Soft Clothing

2010-11-13T23:20:00.003-06:00

A few months ago, I posted about SOFT Clothing. I got some this week that I had ordered for Talli. I got the demin pants and a khaki pair. I ended up ordering a little bit too big for her, so will have to get a smaller size. I think they are true to size. She is short and a bit pudgy with a spinal dimple, so she needs something with a high rise and short legs. I think the next smaller size will fit her perfectly.

They are incredibly soft!! She is able to get them on herself, since they do not have fasteners. She only wore them for a sort period of time, since they were too long, but in that time she didn't get any hives. They do have flat interlock seams, similar to Hanna Andersson's infant clothes.

Update

2010-11-13T23:10:00.003-06:00

I hope to be back to posting more regularly. We have been having a pretty busy couple of months. We did close on our new house in June and then I promptly left to spend a month at my parents' place with the kids. Once home, we had a protracted battle with our school and Talli ended up missing most of the first 6 weeks of school (so I was her teacher). O ended up having some surgery.

We have had weeks with 4-6 medical appointments. I try very hard not to have more than one in a week, but we lost 3 medical providers over the summer because of the physicians leaving their practices. It took several meet and greets and appointments until we could find the right fit for us. We are still looking for a pediatric GI specialist, but that is not something incredibly urgent for us.

In all of this our beloved babysitter moved away. We are on the search for other helpers.

Restocking the Emergency Box

2010-11-13T22:46:00.005-06:00

I like to be prepared for situations that may not come up a lot, but would be pretty darn inconvient or unsafe if I wasn't prepared. An important part of this for me is having supplies for Talli to get through an emergency. Say if we had to evacuate or we had a fire, flood, or tornado, all unlikely situations, but they could come up. So I keep a couple days worth of supplies with a friend who lives about am hour away.

Today, I met up with my friend Jill. Her son also has Propionic Acidemia, but is on a different brand of medication and he only uses 2 of the 4 formulas that Talli uses. So last night we were chatting and e-mailing about what was in the last box we left at each others houses. Everything had expired or was no longer usable (i.e. diapers that were too small).

In the couple of years that we have been doing this, Jill has not had to use her supplies that were at my place. However, we have had to use what she had stored for us. We are regularly near Jill's place for religious services. Three years ago, I was coming back from Michigan from visiting with some friends and was to meet up with my husband, Talli, and M, so Rawlo could attend a religious service near Jill's house. I arrived a little late and Rawlo had already left (some friends were watching our kids), Talli's feeding had been forgotten at home. I thought that she would be ok with some sugar water in her feeding tube.

Unfortunately, Talli was sick with something and when Talli gets sick, she get sick quickly. Within about an hour, she fell asleep (a sign things are pretty bad) and wouldn't wake up. As I packed up our things to head home, she started to vomit. I made a quick call to Jill who made up a batch of no-protein formula and a friend carried Talli to my car. She continued to throw up on the quick trip to the car. We made it to Jill's house in about 15 minutes and got her some formula and cleaned her up. Thankfully, by the time we arrived back to our house she had perked up and could be roused. NOTE TO SELF: put some extra clothes in the box at Jill's place.

So, while we have only used the supplies once, that one time did save Talli from a likely hospitalization.

For those with similar disorders or any chronic medical condition that requires medication, any kind of emergency like I previously mentioned could impact the health of the individual as emergency responders (i.e. Red Cross) are usually not set up to provide for chronic medical needs. It is best to be prepared, so that you are not dependent upon others in these types of situations. For us, it typically takes at least 3 days to get formula from our supplier.

Ready.gov has information in being prepared for those with disabilities and medical conditions. This page has the most information: http://www.ready.gov/america/getakit/disabled.html

Kids Clothes

2010-08-21T23:15:00.002-05:00

I am very much a clothes snob. I admit it. I like certain clothes and brands and I stick to the ones I really like. For my kids, they primarily wear Hanna Andersson. With Talli, I had lots of problems with her getting rashes from different fabrics or exposed elastic. When she potty-trained, I had problems finding underwear without exposed elastic. Then there is the body shape issues- she is short and puggy. I also dress my kids modestly, Talli doesn't wear short-shorts or tank tops. She can't fasten waistband snaps or buttons. For the most part, Hanna was the solution, I can get cropped or capri pants that then fit like regular-sized ones. The elastics are usually covered. Many of the girl clothes have elastic waists.

I rarely even goto a Hanna store anymore, since I can call up an outlet store tell the employee what size and sex clothes I am looking for and she will look through the store for me and ship, usually the same day. But Hannas can be pricey. I buy some on ebay, however, finding larger sizes (120cm+) can be difficult. Do get on their e-mail list as you will be alerted when sales are occuring, especially at the outlets. I recently purchased some new girl tops for $2.50-4/each.

I just same across the website for Soft clothing for all children. I am so excited! They have jeans with an elastic waistband and they are cute!! Their focus is clothing for sensory-affected kids, but since their clothes do not have buttons they are also good for those with fine motor delays.

They are have a back to school giveaway on their website here: www.softlanding.net/products/sale where you can enter to win some T's, socks, a LandsEnd backpakc, and a bunch of school supplies and sensory toys.

"Don't share food", said with a stern expression, while you are giddy inside

2010-05-13T16:26:00.005-05:00

Those with Propionic Acidemia often have anorexia. They have no desire or limited desire to eat, so often depend on feeding tubes. I don't know of any affected individuals who have swallowing issues, they just don't eat.

I had a sweet kind of peace when we stopped feeding therapy when she was about 5 years old. She had eaten as an infant and then as a toddler she ate quite a bit. She got her g-tube at 6 months old, which relieved a lot of stress about her getting the food that she needs, especially when she is sick.

Talli does have a good relationship with food, thanks to all of that therapy. She eats when she wants. She is developing table manners. We rely on how much she eats as a guide to how well she is feeling. She gets in food jags, much like toddlers do and wants to eat the same thing all of the time. A few months ago she wanted to eat plained buttered noodles, every day. Now she has moved on to Wavy Lay's potato chips.

Because of food allergies and germs food sharing is not a good idea. But with things like potato chips that have 2 grams of protein per serving (she only gets 14 grams/day) we need to make sure that we know what she is eating. So as I give the kids a snack I tell them that there is no sharing and they repeat the rule back to me.

This afternoon, I just got a chuckle after M had settled down because Talli had swiped all of his chips and eaten them. What a normal sibling thing to do! Since the bag of chips was empty, Talli agreed to buy M a small bag of chips and she apologized. It is also very ironic because M, who is 2, but looks almost 5 asks every day, "Can I have Talli's______?", after she has finished with a meal.

Cherrybrook Kitchen

2010-04-15T15:35:00.003-05:00

I am so excited! Today I received in the mail 3 coupons for free Cherrybrook Kitchen products. Cherrybrook Kitchen is an allergy friendly and also low protein food company. They sell cookies, brownies, baking mixes, frostings, and they have a gluten-free line as well. They are sold on-line, but also at health food stores, Target, and locally for us, Jewel-Osco/Albertson's.

They have a rewards program called "CBK Rewards" where you send in the bottoms of the boxes with the UPC code for cool stuff.

A Cup-a-cake cupcake holder is 4 box bottoms
A free coupon is 8 box bottoms
An iPod Nano (8GB) is 125 box bottoms
There are more, this is just a sampling.

We really love the mixes. When Talli couldn't have wheat we would use the wheat-free mixes and everyone in the family ate them.

Needless IV lines & Oral Med Syringes

2010-04-14T11:48:00.003-05:00

Multiple brands of needleless IV systems can accomidate oral med syringes into their hubs. With increasing use of needleless IV lines there is risk of mistakes in using oral med syringes in those lines. Here is an older article listing the problem: www.ismp.org/hazardalerts/inject.asp

Baxa Corp has several new oral med syringes that are incompatable with needleless IV lines. They also have syringes that are orange and purple to differentiate them from IV syringes.

Be aware in a hospital setting that oral med syringes (non-sterile) are not used in your child's IV line. You are their biggest advocate.

What my other child needs to see a specialist?!

2010-03-27T15:16:00.004-05:00

Baby O had his 12 month check-up this past week. It was a bit delayed because M had an appointment the day we were suppose to go. He has always been on the smaller side, but he has fallen off the growth chart in length, weight, and the very critical head size. His pediatrician wanted him to see an endocrinologist. Since Talli sees one, I scheduled an appointment with him.

The endocrinologist has already told me that work is his life-- he has office hours 6 days a week at various Chicagoland locations. We started seeing him when he was on staff at Loyola University. We were able to get in this morning.

We are changing up his diet a bit-- more fat and we will be adding extra calories to his bottle. He suggested 22 calories/oz and after discussion he said to go up to 30cals/oz if he tolerates it. Since we have polycose & prophree around and we can do the math in our heads, we will add that in to the formula. Since his growth was poor, the pediatrician said to not take him off formula. He had a bunch of labs drawn and we will see what comes up.

I think after Talli something like this comes up and we just shrug our shoulders and go on. Food is always an issue in the house, so my big hope is that celiac disease is not the problem, but that is so easily managed. If he needs ongoing follow-up, we can easily schedule Talli's & O's appointments for the same time. The doctor brought up finances at the appointment and I told him if it was a problem I would let him know, $50 co-pays stink, but we do plan for them.

Psychological & Neuropsychological Testing

2010-03-08T10:55:00.006-06:00

In November I attended PKU Illinois' annual meeting. During the meeting, Dr. Susan Waisbren made a presentation regarding psychological & neuropsychological testing in those with PKU. I did ask her if it applied to other disorders like Propionic Acidemia and she said it did.

My daughter has her first appoinement with a child psychiatrist to discuss learning issues and her anxiety around medical procedures. We also have a domain meeting in school next week as she is having her 3 year review.

The Genetics and Metabolism Psychology Network (GMPN) www.gmpsych.org lists reference articles and applicable testing in those with metabolic disorders. I found the information very helpful.

Allergy friendly foods & Peanut Free Planet

2010-03-02T13:18:00.003-06:00

While Talli does not eat much, having safe food around is always a concern. She is currently eating 100-200 calories a day, but since some she is sensitive enough to some allergens that being in the room with them or touching a contaminated surface and then biting her nail can cause a severe reaction we are always cautious.

Tree nuts are one of her most serve allergies, peanuts not so much, but peanut allergies tend to get worse with time. She is also on a very low protein diet, so that adds quite a bit of a complication. Cambrooke Foods is known in the metabolic community for good tasting low protein foods, however, and this is the big one for us, they make peanut and egg containing products, so we assume their whole product line is contaminated. Usually, when I call a low protein food vendor about allergies and cross contamination I hear in a quick raised voice, "Ma'am, we make foods for metabolic disorders not allergies." And my response is..., "My child has both." It has been far easier to get the protein counts on allergy friendly foods, some of which are very low protein than find safe low protein foods.

Here are a few companies that we enjoy:
Applied Nutrition- Low protein chocolate (only appealing to the low-protein crowd) that is allergy safe http://www.medicalfood.com/ They do have cute Easter shapes.
Ener-g- They do manufacturer with some nuts at some facilities, so a call to them is usually needed http://www.energ.com/ We all like their pretzels and Gourmet crackers.
CherryBrook Kitchen- Allergy friendly baking products- cake, cookie, pancake, and brownie mixes and ready made cookies. http://www.cherrybrookkitchen.com/ Save the box bottoms as you can redeem them for mixes, t-shirts, cupcake holders, and an ipod. Target carries some of these as does Jewel/Albertsons and Whole Foods.
Enjoy Life- cereal, cookies, granola bars, etc. Some items are too high in protein for us to use. http://www.enjoylifefoods.com/
Divvies- Cupcakes, popcorn, cookies and candy. http://www.divvies.com/ Amazon sometimes sells them as well. Our local peanut-free restaurant stocks them as does Disney World.

Ok, so the last one is Peanut Free Planet http://www.peanutfreeplanet.com/. We have ordered from them a few times. I am preparing for our annual Easter Egg Hunt that we host and was trying to come up with candies to put in the eggs. I also give out prizes as well. I was thrilled to find chocolate foil covered eggs to go into the plastic eggs as well as an inexpensive chocolate bunny to give out as a prize. So here is my order:
Amanda's Own Chocolate Baby Bunny $2.69/2oz (2, one for a prize and one for ODS's basket)
Comet MiniChick milk Chocolate Egg Bag $19.99/2.98lbs
Gimbal's Cherry Lovers 9 Cherry Favorites (for DH & DSs baskets)
Sunbutter $4.49/1lb Nearly the same taste as peanut butter and slightly better taste than Trader joe's brand

The chocolate is likely something Talli won't like the taste of because she is used to the low protein version, but at least it will be safe around her.

Happy Egg Hunting everyone!

Child Life Specialists & IVs

2010-01-24T00:58:00.002-06:00

On Friday, Talli was scheduled for her regular visit to our local hospital for IVIG. However, just a few minutes before we headed over, we got a call from one of the nurses that they were "bursting at the seems with cases of RSV". She asked if we wanted to come in on Saturday morning when the nursing staff would hopefully be able to see her right away. She thought if we came in as scheduled it would take a while to get a room on the floor, as they were into two over flow units, and probably 6-7 hours before her IV would get running.

When we scheduled it we had asked the unit's clinical leader if their new Child Life Specialist would be able to be with us while Talli got her IV. We had met her in December shortly before Talli was discharged. She had some ideas on how to make things go smoother in getting the IV established and some techniques to get Talli to relax. After the staff called me, they quickly called the Child Life Specialist and called me back to say that she would come in on Saturday to help with Talli.

IVs are a particular difficultly with Talli, which is putting it very lightly. With Propionic Acidemia the veins become very fragile and can break or "blow", an added problem is that when sick or fasting the fluids that are needed to put through the IV and the rate at which they need to run to be effective can irritate and damage the vessels such that they "blow" and a new one needs to be put in. Then there is the frequency problem- There are just a lot of IVs and blood draws needed. When she was an infant/toddler she was hospitalized every 4-6 weeks for 3-14 days. Occassionally, we would stay in the ER for 12 hours, but typically we would have to return again within the next 24 hours because it was not enough. For blood draws, they were daily, even several times a day, in her first month of life, over time it has tapered down to about once a month, unless there is some wrong. Then there is the problem that she just has shotty veins, they are tiny, they hide, and they are just scarred from getting poked a lot.

Because of these difficulties it takes on average 3 attempts to get an IV line in. On rare occasions, it is just one attemple, on others it is more than the number of fingers on one hand. So it is understandable why a small child would be upset by getting an IV. Once the nurses or doctor tries for an IV, she starts wiggling, screaming, spilling, and kicking. However, after the nurse counts "1 2 3" and pricks her skin she holds still. She will then give instructions to the nurses regarding how they should tape and put a house and board on her. Then comes the flush, the final test to make sure that IV is actually good. A flush is usually a small amount of saline (salt water), so they can see that fluid is going into the vein like it should, if the IV is not in the right place or the vein has "blown" they will either get resistance or a lump or bruise will show up under the skin. Often times, the nurses put self imposed limits on the number of attempts they will try for an IV. If they can not get it in those attempts, they call for someone else, which could be a 15min to 2 hour wait. So the process and trauma could get repeated and repeated. Again, she has gone through this enough to know that if it is not good, which chances are that it is not, she will get a nice bruise which does hurt.

So back to Child Life Specialists (CLS), they usually have a Bacheler's or Master's degree in Child Life. There are multiple programs throughout the country for training. They do play therapy with children on getting procedures, distract them while a procedure is occurring, train staff on ways to minimize trauma and anxiety in the child, they often coordinate and train volunteers, and organize and purchase supplies for the play room. Our local hospital had just hired a new CLS a few months ago to work part-time. She met with us in December when it was close to discharge time, but did get to observe Talli getting 1 dose of the H1N1 vaccination. Earlier in January, she spoke with the Art Therapist that has been coming to the house through Pallative Care to come up with some more ideas.

So Saturday morning, she came in and sat with us for a couple of hours. She talked with Talli about what would happen with the IV and blood draw (she needed 6 tubes of blood tested) and what Talli's role was- Hold still and not spit. We were incredibly blessed that it only took 1 attempt to get the IV in and they were able to get all of the blood that was needed.

Here are some things that were done to help minimize Talli's anxiety and keep her still voluntarily:
-CLS met with us previously (in December) and came with cool toys and a terrific stuff whale.
-CLS talked to Talli prior to the IV about what was going to happen and reminded her about her two responsibilities- holding still and not spitting.
-CLS brought new toys to distract Talli during the IV.
-Nurse counted "1 2 3" then stuck her with the needle, so she knew what was coming.
-Talli held onto some soft playing dough (NOT playdough brand as is has LATEX in it) with the hand not getting the IV.
-I sat in the bed with Talli on my lap.
-The arm getting the IV was propped on two pillows at her side.
-We muted the TV, so she could focus on me or the CLS talking to her.
-Continuous encouragement from tech, CLS, and me about sitting so well.
-Wrapped "prize" was given to Talli once the IV was all taped up.
-Arranged with the nurse prior to the IV placement to have fluids running after the IV was in to minimize flushes.
-Brought from home a bag of toys (plastic slinky, mini pinwheel, grow capsules, playing dough) that is only for use in the hospital and she doesn't have to share with her brothers.

One of the problems in general is that CLS time and services can not be billed to insurance companies, so their pay and their resources have to come out of a hospital or clinic's bottom line. Talli have been in numerous hospitals throughout the country in our travels and moves and we have found these facilities to have good Child Life Programs (CLP), things may have changed since we have been there last-
-Primary Children's Hospital in Salt Lake City, UT- the best CLP we have experienced
-Lutheran General Hosptital in Park Ridge, IL- they seem a bit stretched with the new pediatric unit that opened in 2009, but are also good
-Edward Hospital in Naperville, IL- this is our local hospital and the CLS seems to be doing good work thus far
-Oncology/Hematology clinics at Hope Children's Hospital and Central Dupage Hospital-we didn't see a CLS there, however, you can see their hand in how the clinic runs with volunteers in the lobby, snacks in the lobby, video game consoles in the lobby, a treasure box, staff walking patients to the blood lab and putting them in the front of the line for a draw.

Being part of a community

2010-01-15T14:38:00.003-06:00

I wanted to start this post about the earthquake in Haiti. It is a terrible tragedy. I think it hits home for special needs families like ours. We already see how fragile life is and if our family was in this situation it would be even more dire.

Moneysavingmom on her blog is listing some groups helping out in Haiti. She is also making personal contributions to relief efforts. Our family has donated to Doctors without Borders and will be finishing up Newborn Humanitarian Kits to be donated through our Church's Humaniarian arm. I have posted links to the blog, Doctor's Without Borders, and information on the Newborn Kits. The Newborn Kits are always needed as blankets, diapers, and soap are constantly in need through out the world.

Prior to the earthquake, I had been thinking a lot about communities and how we work together. We have been hit lately with some pretty nasty winter weather- ice storms, sleet, and lots of snow. When it is like that you see our community coming out. I particularly notice it about 2PM, the stay at home mom's are out shoveling and deicing before the Junior High down the block lets out. We have single women living on either side of our house. One with a young son frequently has her walk and drive blown by another family. This has been done for us as well; I remember one particular storm when Talli was very ill and I needed to get her to the hospital. I had my drive quickly blown, so we could leave.

Children's Face Masks

2009-12-30T13:56:00.002-06:00

Talli has been having to wear a mask when she goes out in public because of the risks of catching H1N1. We are almost out of the box of Kimberly-Clark Pediatric Masks and are having trouble locating more. I called a number of local pharmacies and they don't carry them at all. The vendors on Amazon.com have significantly increased their prices.

Another mom told me about It's My Heart, a non-profit for congenital heart defects. They have directions on their website to make a face mask. From reading that I have done, it is recommended that the weave of the fabric to be tight & layered and the masks are washed between uses and when they are soiled.

There is a link in my link list sewing directions.

Fabulous music for us special needs parents

2009-12-04T21:36:00.005-06:00

A friend linked to this music video on her facebook page, it just has a beautiful message expressing our needs. It is from Harmonizing with Humanity, song "The Life That's Chosen Me" by Karen Taylor-Good.

And there are always angels

2009-11-21T19:21:00.004-06:00

There is another little angel in heaven.

For the past week, I have been talking and texting with another mom whose daughter has Propionic Acidemia (PA). There was also a lot of talk with a mutual friend as one of us might have a new piece of news on the little girl. At times, she would be doing better, then take a turn for the worse. Yesterday things did look better, but this morning they decided that no more could be done for her and took her off life support.

There is always sadness, survivor guilt for those of us who still have their children, and some happiness and peace for the child who does not have to deal with tubes or pokes any longer. Most of us know these things are coming as the life expectancy of PA is still only 3 years. This angel was 3.

Talli looks at me curiously when I tell her I am sad that someone died. It could be my grandmother or another child with PA. She tells me how they are with Jesus and are so happy.

May our newest Angel's mother have peace and the rest of us love our angels while we have them.

There are always adjustments....

2009-11-15T23:34:00.004-06:00

I got a call from my dad this morning. No one made it to the phone before it stopped ringing as we don't usually get any calls on a Sunday morning. So I called him right back. My maternal grandma died this morning.

She was 84 years old. For the past 7 years she lived in OR with my parents or at a "memory care" facility. She had Alzheimer's for at least 10 years. She was also a survivor of breast and uterine cancer and MS. She could sew anything and her ability to sew was one of the last things that she lost. She had an incredible sense of humor. She loved her family deeply and would tease us that our weddings, graduations and births messed up her travel plans. She has 3 daughters, 19 grandkids, and a multitude of great-grandkids.

Prior to my grandfather passing in 2002, they traveled extensively. Pretty much wherever they could get free military flights or their camper could take them they would go.

Her father was an immigrant from Denmark and her mother from Germany. She met my grandfather at a dance in Salt Lake City and they were married soon afterwards. They honeymooned separately: he went hunting with his brothers and she got aquainted with her new in-laws. She never let him live that down.

When my paternal grandmother died in 1998 and my maternal grandfather in 2002 there wasn't a question that I would goto the funeral and see my family. Talli was just an infant in 2002 when we flew out to California. She was actually eating everything by mouth then, although I recollect her vomiting during the trip.

But now, she is pretty much housebound because of H1N1. We rarely travel without her getting sick or landing in the hospital and I can't imagine trying to make it across the country and her not getting sick. We have somewhat full coverage for home nursing during the day, however, I don't trust them fully (a nurse ate a peanut product in the house last week, among other things), so I can't leave her.

I know the funeral will be in Marin County, CA which is where my mom grew up, but I don't have a time yet. I am not hopeful that I could hop a direct flight out and back to make it, that is only an option if it is on a weekend.

My mom understands, but it would be nice to go.

Getting things paid for....

2009-10-21T00:57:00.006-05:00

I am by no means an expert, however, I have learned a few things over the last 8 years.

1. Read your insurance policy or at very least your insurance certificate to see what is covered.

2. Ask for itemized bills, especially for hospitalizations.

3. Read through the bills that come. I was just sent a bill for a $30 for an appointment with a specialist. I had paid the co-pay when we were in the office. With this office, if I had paid it again I would never see the money again.

4. Know your state laws regarding coverage.
IL recently passed a bill requiring amino acid based formulas to be covered by insurance. Our insurance was denying Talli's formula. I sent in an appeal with a copy of the law and Press Release by a sponsoring organization. Usually, once a year I have to send in the same information, but it is now covered.

5. Find out why something is not being covered.
I went round and round about getting some medication covered right after Talli turned 2 years old. I was told that since she is 2 she no longer could take the name brand liquid form of the medication, she had to take a pill. This was after hours of being on the phone with various people. I informed them that she had a feeding tube and they were paying for those supplies every month. I got a big, "Ohhhhh" and "we are a different department, so don't know about tubes". Every once in a while I get a denial and then make sure the pharmacists puts in the notes that she has a tube.

6. DON'T pay that bill if you have Medicaid.
In most locals it is not legal for a medical provider to collect from a Medicaid recipient.

7. Talk to your provider if you are having trouble paying
We have negociated not paying co-pays and several thousand off a surgeon's bill by asking. Many hospitals and medical providers will work with you if you are having trouble paying. Not all doctors are like Dr. Pedro Jose Greer or Dr. Holmes Morton, but there are some out there.

8. Talk to the provider if they are having trouble getting paid
Keep the communication open with the provider, so they are getting paid in a timely manner. Bring your insurance card with you, call the insurance company to get denied claims paid. Your provider will be happy to get paid and in a timely manner.
I noted to our pediatrician when we changed insurance companies that his negociated in-network rate was a lot higher. He commented on how much he liked the plan that we had, that it paid the second highest amount, but the company paid him 30-45 days sooner than the other plan that paid him more.
Did he open up on New Year's Eve or stay open later a different day to see my sick child because he loves us oh so much or because he knows we respect him and his time? I don't know, but I like to make sure he is well paid and in a timely manner.

9. Talk to other parents
Yes, most of us meet with other special needs families and complain and compare notes. But do you ask: "How much was that x?" "What insurance do you have?" "How do you pay for all of the copays on meds and visits?"
Ask, talk, and help one another.
My husband was moved over to a contractor at his job 3 years ago and we went on COBRA. It was over 16% of his gross monthly income. I asked my good friend whose husband was unemployed. "Well, didn't you know there is this program that will pay for your family's premium if your costs are so high for a family member on Medicaid?" Ah, well no!! Our 2 case managers for other programs who had the application never told us about it. We applied and.... they paid our premiums back to the application date. I send in proof of payment and EOBs and we get reimbursed with a check sent via certified mail.

10. Search out organization there to help
Does your disease organization help with bills?
Ask your disease organization if they know of local or national resources specific to your disorder.
Is there a local support group meeting?
Find out if your child qualifies for mandated programs like Early Intervention.
Support and utilize groups like http://www.themorganproject.org/
Take advantage of conferences supported by disease organizations, EI and other groups. Here in IL, StarNet and the ARC will help to pay for travel expenses for conferences and often hold free meetings as well.

11. Contact the manufacturer
Whether it is a DME manufacturer or a drug company, many have programs to help those in need. For those with Propionic Acidemia, most are on specialized formula for life. Most of the manufacturers have programs to help those who can not afford treatment. The same goes for drug companies, whether it is an orphan drug like Carnitor, or a major drug company processing IVIG, they will help those needing treatment. When our feeding pump breaks (I have 9 pumps in Talli's room, one of which is working), I contact the DME provider, but also my local sales rep. Oh, Patrick, such a wonderful man, who will overnight me a pump that works; he sends a nice Christmas card as well.

12. Talk to the discharge planner & social worker at the hospital
Everytime you are at the hospital talk to them. Let them know your needs. Unfortunately, once you are discharged you are often forgotten, but they may have resources that you do not know of.

13. Just shop around
Yes, I have gotten supplies on both ebay & amazon. My first feeding pump purchase on ebay was fully reimbursed by our health insurance company. $161 vs $2500, someone actually did the math and realized the deal. This insurer highly suggested people shop around and negociate. Dh also happened to work for the company and I was on the phone with the claims rep almost daily, but I don't think that swayed the decision as they also denied plenty of claims. Even if they didn't reimburse me, 20% coinsurance on $2500 = $500, so super good deal for me either way. My last pump purchase was $37.50, including shipping.

Don't do things that are illegal. I have paid for compounded Rxs that would have been a lot cheaper if I got them from Canada.

14. Use the supplies at the hospital
Don't use your own stock, use what the hospital has. If they do not have a needed supply talk with them about getting it. I have had charge nurses send people out to get Pampers because Talli couldn't use Huggies.

15. Know your costs
Know what your co-pays are, your co-insurance, Max out-of-pocket, etc.
My insurer has a nice tool regarding Rxs on their website. I can find out the drug costs on all of our family's medications if I pick them up at Pharmacy X or get them mail order. It also states the limit on the number of doses for the Rx. So, I learned that it is cheaper for us to get 3+ medications a month from Dominicks' ($4/month) or Target's ($4/month or $10/3 months)discount drug programs than have them billed through my insurance.

16. Know your pharmacist
I love our pharmacy! I can bike to it when the weather is good. The pharmacy tech knows who I am and gathers all of the family's medications when he sees me coming. A few weeks ago he didn't grab one for one the boys, but he rarely gets an Rx. If insurance is denying something, they will usually give me the Rx or at least a week's worth to hold us over until things are straightened out. If something is not in stock they will ask me if 1. I can wait a day or two to get it in 2. if I want it transfered to a different pharmacy AND they will call to see if it is stock there 3. they will call the pharmacy down the street and if it is in, the pharmacy tech will go get a supply to then fill my Rx.
Really, I just love them!
This saves us how?? If we are not skipping meds because they are being denied for some reason or they are not in stock won't our overall health costs go down.

A friend's pharmacist calls her every month to come pick up her supply. I haven't been able to get it so that all of the medications are refillable on the same day.

A Night Out

2009-10-19T13:59:00.004-05:00

Dh and I occasionally get out together. Our hope is always to have a weekly date night, but often times we just watch a movie at home or walk through Lowe's together.

On Friday night, we were able to goto 2100 blue in Oakbrook, IL for dinner. We had a Marriott dinner certificate that was going to expire (thanks to his former employer's wellness program). If you have never used one of these they are fantastic! Ours included appetizers, salad, entree, dessert, tip, and taxes for 2. You really need to take advantage of one of the nicer Marriott's to get the full benefits of this. We ate and ate and enjoyed delicious food. The restaurant was quiet and we didn't feel rushed. We were able to actually talk to one and another whilst enjoying the view.

We have no family anywhere near us, so we depend on a very good babysitter. In the past, we have been able to have a nurse on the weekends. For a while a friend, who is a nurse, would watch our kids once a month so we could go out.

Links for Care Notebooks

2009-09-25T13:13:00.006-05:00

This has been a crazy week. We met with a nursing company on Monday afternoon, but thus far every nurse they have assigned to our case has been either a smoker or a cat owner.

I updated some links for places with how-to's for putting a Care Notebook together and also downloadable forms.

Being Organized #1- Care Notebook

2009-09-19T22:19:00.007-05:00

I typically function with organized piles on my desk, in my laundry room, on my dresser, etc. However, in the first half of 2007 Talli spent a lot of time in the hospital with various types of sepsis, septic arthritis, and port change outs that I decided to put the time sitting in her room every day to good use. I put together her "Care Notebook".

This has been a life saver, time saver, and very much worth the 15 or so pounds it weighs to take to each appointment and hospitalization. It helps to keep me focused at appointments, especially if I have all of my kids with me. I think it adds credibility to me as a parent because I can give specifics to a physician on her history, labs, and medications; when I can give them a list that they can copy for her chart.

A fellow board member at the Propionic Acidemia Foundation put together the basic structure for the one I use, however, I add and take away as seems appropriate.

I recently took out all discharge paperwork out of the notebook. They just took up too much space and didn't really convey any information that I didn't have somewhere else. Also, the specifics of what medications were given at what time the day of discharge doesn't add anything to her overall health plans 6 months later. I tossed what I didn't need, the rest got filed.

It is a 3" D-ring notebook. I have two sets of write-on divider tabs (we need that many!). A velcro pocket folder holds prescriptions given to us at appointments or small notes. A business card holder keeps the cards from her various specialists. I used to keep a small 3-ring hole punch in there, but I really needed the space, the same goes for a pencil/pen case. A CD holder keeps digital medical files, which are mainly x-rays and other radiological studies.

I have smaller versions of the Care Notebook for all of my kids and myself. My husband has excellent health and sees a doctor for an annual physical because I make him. Other than that, he usually has some sort of major accident every 7-10 years, but since he has no underlying conditions we don't need to tote any records to the hospital with us.

When we goto appointments I carry Talli's Care Notebook in a canvas bag. When she is going to the hospital it goes in our hospital bag, which I will write about at another time.

Sections of Care Notebook:
-About Me Emergency Contact information; Emergency Information Form for Children with Special Needs; general information about likes, pets, foods, bedtime, etc. (think along the lines of someone stepping into your role and needing to know that your child will throw up ANY mixed texture food); Birth & Early Development; Diagnosis history, Medic Alert Record Summary, Medications (I use Post-it flags for each current med);

-Labs & Tests I am phasing out this section. I put labs in chronological order by type, so all CBCs were together, etc. However, for the most part it is a specific physician ordering a specific test, so I am now putting them in the sections for each specialty. The medical records prints labs for 2 different specialties on the same page, I copy it, so each lab can be in the proper section.

-Hospitalizations (This section is never up to date) It lists the dates of admission, name of hospital, address, doctor's names, reason, and outcome. Talli has had over 100 hospitalizations if you count outpatient visits, which is why it is not up to date.

-Contacts Health Insurance information, including a copy of each card. I keep expired cards as well, as billing can sometimes be delayed more than 12 months. Hospitals we use; the business card holder with provider information AND device information. For each implanted device she has had we have had an ID card with information regarding placement and model/serial #s.

-Supplies A descriptions of each supply ordered; company ordered through; reason needed; comments; prescribing doctor; and contact person at insurance if prior approval is needed.

-Nursing/Home Health Contact information for all companies; services performed; frequency; notes; and a phone log.

-Specialist subsections This is the reason we need 2 sets of divider tabs. Genetics; Nutrition; Pediatrician; Cardiology/Electrophysiology; Gastroenterology; Hematology; Allergy/Immunology; Endocrine; Orthopedics; ENT.

For each subsection I have the following: Contact information for the office & nurse; Phone log; Clinic Visit notes (these are my notes for each appointment); letters written by doctor to school, for ER visits, for travel, etc.; labs specific to that specialty.

-Medical Assistance/Case Management Programs We have case management through a state program for her metabolic disorder, so I have contact info and a phone log for that. I also have a section for the Case Management at our Primary Insurance company.

-Infusion Log A record of all Intravenous Immune Globulin infusions that she has received.

-Glossary/Reference Information This is VERY useful. It lists medical terms specific to her metabolic disorder, how to calculate things like Anion Gap, which may not be calculated on a lab sheet, Blood pressure reference chart by age & height; growth charts (If she didn't have growth concerns because of other medical conditions, I would have this in my pediatrician section, but since GI, allergy, endrocine, and genetics all care I keep it here).

-Forms extra forms for the Notebook, like phone logs and clinic visit sheets. I also keep school medication forms in case she is prescribed a medication that her nurse will have to give her at school.

I keep all of the Care Notebooks in a cabinet in my family room. The person who would take care of my kids in the short term if something ever happened to us knows where the Notebooks are kept.

I hope to post links to Care Notebooks and photos this next week.

Bedding

2009-09-14T12:18:00.004-05:00

My daughter is g-tube fed overnight. She wears S/M Goodnights when she sleeps, which do not hold enough most nights and she pees through them. We will be moving to some custom cloth pull-on pants as she had some bleeding sores from wearing them for a week at the hospital. We expect to continue night feedings as kids with Propionic Acidemia gave better labs if they do.

When she was a baby I consulted the book Baby Bargains and it suggested The Company Store for crib sheets. I got a couple of flannel crib sheets, which held up to twice a week laundering for almost 4 years. They no longer sell the flannel crib sheets, but their percale is almost as durable.

We use all cotton bedding for her as she is on L-carnitine. Carnitine causes a "fish" smell, which worsens with constipation and is concentrated in sweat, urine, and stool. The smell seems to hold onto synthetic fabrics, hence the reason for the all cotton.

mattress cover
Her mattress is encased in a high quality cotton dust mite cover. I highly recommend one that is zippered fully on three sides for easier removal. I purchased hers from National Allergy.

sheets
For sheets I mentioned above, we use Company Store. There is an outlet in Madison, WI that has great deals on bedding. We have 2 flannel set sets and 3 percale. One set I got on clearance for $6.99 and another I got used on ebay because it was a very cute ballerina print.

water proof barriers
For a while we used Carter's waterproof crib pads, which are two layers of flannel with a waterproof layer in the middle. They can be hard to find in the stores and after many washings the layers start to peel away from each other and the water proof protection goes away. Sometimes I see them at Babies R Us, Kohls, and Carter's Outlet.

What I prefer is a custom made mattress pad from a WAHM that I found through Diaperswappers.com. She used a layer of PUL (for the waterproofing) and a layer of white fleece. She can also add suedecloth, flannel and Zorb. She was pretty quick to get it to me and was comparable in price to the Carter's crib pads. I line dry mind so the PUL will last longer. By the time the rest of the load is dry in the dry this is dry as well. Her store is on hyena cart.

blankets
I love to quilt and for a while my daughter loved ballerinas. I pieced a cute all cotton quilt together and a friend used her quilting machine to do the actual quilting on it. Well, it is just not holding up. It probably gets washed 3-4 times a month and the binding is shot and there are a couple of small holes.

What has been far more durable are flannel Company Store duvet covers and all cotton blankets from JC Penny. I do not have a duvet in the cover mainly because of her dust mite allergy and since we are changing her bed almost everyday it would be an additional pain to move the duvet around.

Friends

2009-09-13T16:53:00.005-05:00

I have been thinking a lot about the importance of friends. Today, I was able to attend Church services while my husband stayed home with the kids. There was a case of H1N1 in our congregation, so we are being cautious. In our women's meeting, the lesson was on friendship and the importance of having and being a friend.

It is so important for those with special needs kids to have good friends. The ones that will sit with you while your child is critically ill, calls you to make sure you have eaten, brings you dinner (or Portillo's chocolate cake), gets away with you, and watches your other children when you have appointments.

A night out
Last night, I was able to get a much needed break. A girlfriend and I went out for a small bite to eat. We didn't like the atmosphere of the first place we chose, so with the top down on my husband's convertible (and car seats in the backseat) we headed to a different local that had some live music. She laughed at me ordering a Shirley Temple (they only had Diet Coke, which I hate) and we talked, people watched, and listened to the band play.

We had a few hours of peace. There were no crisis at either of our homes. Formula was made and medicine was given without any calls to check in with me. We laughed and joked and talked about death and sickness.

I also got a small dose of nostalgia when I tasted the chips that we had ordered, served with Ranch dressing. They tasted just like the "spuds" that my favorite pizza place served in my hometown in Oregon. Pizza and spuds were always served with Ranch, although, there was ketsup available, which I prefer. Many family dinners were held at Abby's Pizza, after football game gatherings in high school, and our traditional Christmas Eve dinner was often there.

Hand holding
I am grateful for the friends who would sit with me in a hospital room with my daughter, hold my hand while she was in a lengthy surgery, and watch at a bedside while I tried to comfort my daughter through the pain of one of many surgeries. The two friends who recently did this with me are not strangers to hospitals. One has a husband with Stage 4 kidney cancer, who is in his early 30's. The other has a son with Propionic Acidemia and has spent almost as much time in a hospital as we have, knowing that many hospitalizations could end up with one less child at home.

Another friend, whom I saw today is not a person I have known for very long. We first chatted at a New Year's Eve party that she threw to welcome in 2009. She is a nurse and knew my daughter had allergies, so she was pointing out how foods had been prepared and which items were definitely not safe for her that night. A few weeks later, her oldest child felt ill and within a few days had a heart transplant. Since I couldn't visit her, while her son was in the hospital, I wrote letters to her and we chatted once her son could be back out in public. Today, as she touched my arm and said "I am so sorry, I just found out." I felt loved, comforted, and understood. While a defibrillator (ICD) is much less serious than a heart transplant, we understand the others experience.

Dinner
What a relief it is after a stressful tiring day to have someone bring you a meal. Last week, we were blessed by two friends bringing our family dinner.

Other times, friends have driven through a snow storm to bring us food at the hospital after a lengthy stay and had pizza delivered because they couldn't quite get dinner on the table at their own home either.

Special Needs Mama

2009-09-10T13:05:00.001-05:00

I am a private person for the most part, but am willing to share if someone asks about me or my experiences.

After spending a weeking in a hospital PICU with my 7 year old and two frustrating days at home arranging for her care I thought that I should at least share some of my experience to help others. I have liked to think that I could be a regular stay at home mom and handle the care of all of my children myself. It has come to a point where that is not the case and I need someone here in my home to help me. This has been a more difficult change than having her feeding tube placed because I have to fight for it.

My seven year old has Propionic Acidemia (www.pafoundation.com), secondary immune deficiency (www.primaryimmune.org), Long QT Syndrome (www.sads.org), asthma, allergies, GERD, esophagitis, and hypothyroidism. She is primarily tube fed with her Zevex Entralite that we love! She is also a lover of almost everything: people, amusement park rides, Chuck E Cheese, everything electronic, her brothers, her classmates, her imperfect parents, fishing, playgrounds, etc. She seems to be able to balance in her mind the trauma of needle sticks and IVs with the video games she will play at the hospital and TV she can watch on the way to appointments.

We have two healthy boys. A 2 year old with some pending allergy tests, who had his tongue clipped at 4 weeks, and a 5 month old preemie who is delighted by his siblings as much as they delight in him.