Taking a break

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

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

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

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

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

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

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!"