Another Excellent Sale Tip

Since my previous cereal sale info was so appreciated, here's another good one:

South Beach Cereal Bars are FREE at CVS this week. Here's how:

They are on sale 2/$5. Go here to print two copies of this $2 off coupon. Then when you go to CVS, go to the pharmacy and grab the Diabetes Book-it's a free handout. In the back of the book is a $1 off coupon from CVS. You can use all three coupons in one transaction. Just make sure you have your Extra Care card-otherwise you don't get the sale price.

Enjoy!

I've gone twice :)

Winter Camp

So...Dovi had a blast at Winter Camp. He went tubing, and bowling, and to an indoor water park/arcade.

He also dialed 911 from the dining room one night.

Yes, you heard me correctly. The last night, at dinner, a Keshet counselor heard the pay phone ringing. He picked it up. It was the 911 call center calling back. It seems that someone had dialed 911 and hung up.

"No, everything is ok. Don't send the police". Then they went about figuring out who had called and if everything was ok. Someone said:

"Didn't Dovi stop at the pay phone on his way to the bathroom?"

Dovi was asked. Dummy that he is, he admitted it immediately. He was sent to bed 15 minutes early and he and Bobby composed a letter of apology.

So first, I was spazzing. He really doesn't get common safety, does he?" But then I remembered an...ahem...incident from when I was about 8 or 9. Granted, he is 11, and I was a few years younger, but I distinictly recall sitting with my friend Chaya in music class at school, which for some reason was being held in the auditorium on the stage.

Also, for some reason, there were a bunch of stick pins on the floor. There were also outlets on the floor. I guess this sticks out in my mind because I was such a goody goody as a child.

Unlike my darling hubby who forged his father's name, his father who was a teacher in the school that he attended, on his homework.

So for some reason unbeknownst to me, Chaya and I started dropping the stick pins into the outlet. Do you know what happens when you do that? Small little puffs of fire and smoke. Yes, we got in trouble.

So I guess everyone is allowed one stupid unsafe action as a kid. This was his. What was yours?



So on to the pictures.


Yes, my son with $100,000 of titanium in his back went tubing. Don't tell Dr. Feldman. He had lots of fun.



Isn't this a cool picture of Dovi and Heather? Heather is the a.w.e.s.o.m.e. head of recreation for Keshet. She's the master of all the rec programs. Thanks for taking Dovi away for four days! winter camp!

Snowball fight!!!
It's a good thing he goes to winter camp and gets to play in the snow there. I don't think I have ever played in the snow with my kids. I put them out. I should move to Miami. Luckily I'm going there in four weeks for the marathon that I am beyond not ready for

Dovi seems to be eating the snow in this picture. Lovely. His hat was so far down I'm not sure if he could see!

Yes, he looks insanely disabled here. Well, he is insanely disabled. But look at those cute little feet! I love his feet. And his little hands. They are so itty bitty and cute. I hope Bobby doesn't mind me putting this picture of him on my blog. Oh well.

Yes, he's very wet.

Hey! Hey! Remember Me?

So I know, I know, I've been kind of AWOL. But don't worry, I have good excuses.

• Kids are on vacation. What more do I need to say than that?
• I've been kinda stay-cation-ing it. What's a stay-cation you ask? Well we really couldn't go anywhere this year (big talker I am, we never go anywhere :) ) because of the way the holidays work out. But I do have quite a bit of time off of work. So a stay-cation is when you do all sorts of fun stuff in your city.
• So on Wednesday, the first day of vacation for Elisha, Shana, and Jakie, we went to Coco Key, an indoor water park nearby. I must say it's pretty darn fun to be swimming inside when there is a foot of snow outside. You ever have one of those days when not only are your kids AMAZINGLY BEHAVED, but they actually (prepare yorself) say thank you for the lovely outing? Wow. Give me more days like Wednesday, and I'll have 14 more children.
  
• Then on Thursday, Dovi came home from Winter Camp. From which I have an excellent story to tell you all later. All I can say is...little stinker.
  
• And on Friday, we went to the NCSY convention at another hotel. That also is a post unto itself. But suffice it to say that my children have swum 4 times in 5 days. Nice.
• And we finished up by yesterday going to the Jelly Belly factory warehouse tour. Yes, Michelle, it was rather lame. But my kids loved it. Yes, it was a little train driving around a warehouse showing us little videos. But we got free candy. And bought more. So it was worth it. I {heart} candy.
  
• And then my mom is coming in on Wednesday.
  

So all in all I think the kiddoes are having a rocking stay-cation.

But my house is literally t.r.a.s.h.e.d. We came home last night to a spotless house. I was so freaking tired that I could not deal with it. The kitchen? Every counter covered. The living room floor? Covered in suitcases that have been ransacked to find stuff-mostly by Elisha searching for the correct sport pants. But that, too, is a post for another day. Elisha and his wacko clothing needs. But my house is terrifying. We're having homemade pizza for dinner and spending all afternoon once we get home from the JCC (they're at vacation days today and tomorrow while I "work") unpacking and cleaning. It makes me shudder just to think about what it looks like.

In The OMG What Were They THINKING? Category

Look what I just got in the mail yesterday:





Yes. That is my son.

My dysautonomic son.

My dysautonimic son with $50,000 worth of titanium in his back.

My dysautonomic son with $50,000 worth of titanium in his back dangling from a zip line.

My dysautonomic son with $50,000 worth of titanium in his back dangling from a zip line looking very happy.

My dysautonomic son with $50,000 worth of titanium in his back dangling from a zip line looking very happy at Camp Simcha Special this past summer.

So it's all ok.

But still. OMG.

And hi Asher, I see you in the background. I blame you for this nonsense (just joking).

EDITED: Benjie just corrected me. $50,000 of titanium? I think not. The titanium was $75,000 just for the doctor bill. You could add another $30,000 or so for the hospital bill. So we're talking upwards of $100,000 of titanium. Nice.

Two ThreeThings I Have Learned This Morning Today

1. If your car dealer tells you on Sunday that you really need a new battery for your van, and your kids leave two interior lights on inside the van after the aforementioned menorah hunt, your van will be dead as a doornail in the morning. This will the necessitate you calling your lovely carpool buddy and beg her to drive, thus making her late for her son's dentist appointment (I know you were late, Rebecca. You were just being nice). Everyone, say a prayer that the van will start at my lunch hour when I attempt to go to Auto Zone to buy a new one so one of the guys here at the shop will change it for me.
   
2. There are still some nice companies in this world. Remember the Nok Hockey debacle? Well we just ordered it from Back to Basics Toys. For some reason unbeknownst to me, they shipped us two. I called them this morning. They told me that rather than ship back the second, I should just donate it to a worthy cause. How lovely! (But what does that say about the markup on stuff we buy?!)
3. When you drop off your rosewood challah board to get fixed it would be a good plan to find out how much the glass guy will charge to replace the glass that your children broke while clearing the table. Otherwise you will end up paying almost $100 to fix an item that can be bought brand new for $25. Lovely.
   

Menorah Hunt

So I wanted to share with you a cherished P Family tradition.

OK that sounds uber-cheesy, but it's the honest truth.

At least one night during Chanukah, we go on a Menorah Hunt.

What is a Menorah Hunt, you ask?

I load the kids into the car and we drive around the neighborhood, looking for menorahs. Now my kids are 6, and Dovi is a fake 11, so this might not hold the same appeal, for, say, a family of teenagers. But if your kids are six or so or younger, give it a try.

This year I upped the ante and made them all hot cocoa in travel mugs (thankfully we own three!) and they took the Chanukah Gelt they got in little goodie bags at school. We also took a few stuffed animals along for the ride.

I have to tell you, I felt so cheesy as we were rolling down the street, looking for menorahs and singing Al HaNisim on the top of our lungs (since the Miami Boys Choir concert we went to last night, Jacob has taken to singing in this really "professional" cheesy voice. Cracks me up).

See, I don't always hate my kids.

It's all back to that "change the attitude, change the kid" thing. I met my kids off the bus with a huge smile, hugs, and enthusiasm, and it really made a difference.

Give the Menorah Hunt a try, it's really a blast.

Not Me! Monday

This past week, I was not OVERJOYED to have my lovely children home with me on Friday. They were beautifully behaved little angels.


They were not little demons whom I felt the need to blog about in (ahem) ever so slightly derogatory terms.


(I am actually really embarrassed about this. but here we go....) On Saturday night, when my children were refusing to buckle their seatbelts when we were taking them to a children's party, one that we wanted them to have fun at, I did not kind of, sort of, tell them that (I can't believe I'm telling you all this) they were behaving like little idiots. OK I've admitted it. I feel better now.


I am not a tiny, itty bitty bit concerned that my readers might think that in reality I don't actually enjoy my children. I really, really do. They are lovely. They really are. But sometimes, ya know, it's just a little too much?!


I am not being highly entertained by watching the hubby do the Hula Hoop on the Wii Fit.

He has not broken a sweat by said activity.


I did not get up on Sunday morning, after less than 6 hours of sleep, and spring out of bed, so excited to go to CVS and get free product.


I was not sooooo ticked off that quite a few insane more devoted CVS bargain hunters went at midnight to clear out the darned store of all the "free after ECB" items.


But then I was not a wee bit too excited to realize that I could get rainchecks for said items!


I am not very embarrassed to be actually blogging about CVS.


I did not skip away from the bus when dropping Dovi off at the bus to Winter Camp.


I am not really needing this 4 day break from the work that is the D man.


I am not feeling a tad guilty for the need for the break.


I did not dump an entire coffee filter full of 10 cups-worth of coffee grounds into my garbage can that had no garbage bag in it.

And that did NOT happen because we are NOT out of garbage bags.

My house does not have 8 tubes of toothpaste yet no garbage bags.

I did not then scoop up as much as I could and then say to myself: "Only two days until the cleaning lady"

My check engine light did not go on this weekend.



I did not immediately wonder if the mechanic that we fought with might have purposely messed up something in my van.



The dealer did not tell me that it might have been "a bad tank of gas" that caused the light to go on.


I do not think that's a crock of you-know-what. What the heck does it mean "a bad tank of gas


But I am not just going to get my van and not ask any more questions.

Keepin' It Real

So here in Chicago, we have, what? 8 inches of snow? My friend Keren says no more than 3, but I say she's delusional.

So there was no school today.

MY KIDS ARE DRIVING ME CRAZY!!!!!

OK I feel better now.

OMG they are soooooo annoying. Can I say that about the fruit of my loins? I seriously think that they. are. the. most. annoying. children. in. the. entire. world. ever.

They are 11 and 6, 6, 6.

So please explain to me why my house looks like it's inhabited by a pack of 2 year old monkeys? WHY can they not put away the Zingo when it is done with? Why must they throw the pieces across the room? Literally. I didn't make that up.

Dovi has had 2 accidents in as many days. Don't be all like "oh, poor Dovi, it's so hard for him". He's being lazy, pure and simple.

Elisha is currently eating his pasta. with. his. hands. OMG.

Remember P-ville? How cute it is? They colored all over it. A plague has come to P-ville.

Shana is literally attached to my body, moaning. She is bored. She is tired. She is crabby. All these descriptives were given to me, by her.

They are fighting. They are screaming.

And when they are not fighting or screaming, they are following me around the house asking me annoying questions.

THEY ARE SO ANNOYING.

Make them go away.

Make this day end.

Make them stop.

I even took them across the street to my neighbor to play in the snow with the neighbor kids. I don't know about you, but growing up in Wisconsin, we got lots of snow. I remember me and my sister playing for hours in the backyard. They played for less than 20 minutes. Then they were cold. Snow was in their boots.

Wimps I tell you, wimps.

Rebecca, remember that enormous snow fort you and I made? There are even pictures of it. There is enough snow for such a fort. They do not care.

They are annoying.

We are eating lunch, showering, and then I am sticking them in front of the TV and praying they do not bother me they are getting cozy and watching a movie.


How is it only 12:53 pm?

So Remember the Nok Hockey?

Sara the idiot? Screwed.

No one has it. Must order online. Hoping to get before Chanukah over. Knew wanted it for a month.

Why am I so stupid?

And btw why was I so stupid to go to Target on Dec 18th? I've never seen anything like it.

Dovi's AFO/SMO update...and some other randomness

Nadine (PT) is still waiting to hear back from the orthopedist about Dovi's AFO vs SMO quandary...

The Toyota dealership must be wondering why three or four people called them yesterday for seat belt extenders...

I'm sooo clever-the HHA needs to deliver Dovi's oxygen concentrator for Winter Camp


He uses liquid at home but it weighs like 200 pounds. I'm not joking. It takes Benjie and a friend to get that puppy up the stairs after it gets filled. One step at a time. Yet the delivery guy does it himself. Scary.

Either way, I digress. He needs the concentrator for camp. It needs to get delivered today. After 12. But before 4. Due to the expected impending madness of a snowstorm that we are going to get tomorrow. But I will be at work. And they will not leave it in the side porch. Because...ummmm....it costs like $4,000. Can't really say I blame them.

So what's a girl to do? I'm so clever...it's getting delivered to my mother in law's office. It's only like 6 blocks from my house. She's there all day. I'm one smart chick...


Am I the only one in a panic about the impending snow? I am not working tomorrow-it's that whole 20 hour thing again. I have a list about ten feet long of presents to buy errands to run tomorrow. When they are projecting 12 (yes, you read that correctly, Steph) inches of snow.

So I am assuming that said errands will not occur. So on the way to work this morning I dashed in and out of the fruit store-in nine minutes! Got to work on time, and shall take a slightly longer lunch hour than I should. But I will hopefully hit Target, JoAnns, and Sports Authority. Please G-d, make them have the stinking Nok Hokey.

Or I am, to put it politely, screwed.

Wish me luck.

In Which Sara Morphs into Two People

So I have a scheduling "difficulty" (a term I am using lightly here) that I need to talk out to figure out a solution.

Dovi leaves for Winter Camp at 1 pm on Sunday.

The Chai Lifeline Chanukah Party is 12-2 on Sunday.

Benjie is working on Sunday.

The Winter Camp drop off and Chanukah Party are approximately 30 minutes apart.

Last time I checked, I am one person.

I am talented, but how the heck am I going to pull this off?

Here's my tentative plan.

1. Go to party with car loaded up.
2. Shove lunch down Dovi's throat.
   
3. Stay 15 minutes.
   
4. Hopefully leave ESJ at Chanukah Party with lovely volunteers (note to self: Call Chai L ifeline office and ask if this is ok)
5. speed north drive to Winter Camp drop off with Dovi's 800 pieces of luggage. This year we get to add in an oxygen concentrator and BiPap machine just to keep 'em busy.
6. Arrive at drop off.
   
7. Kiss Dovi goodbye 400 times.
8. Instruct Bobby, Dovi's A.W.E.S.O.M.E. counselor about menorah lighting and gift distribution.
9. Make sure A.W.E.S.O.M.E. nurse Chana has no more questions. This is her third year dealing with him at Winter Camp so I suspect she'll do just fine. But she comes home very tired. Shocking.
   
10. Kiss Dovi 400 more times
11. speed south get back to Chanukah party by about 1:40 pm
    
12. Go home with sugared up, presented up ESJ
13. Collapse.

Sounds like a plan to me.


An on a different note, another totally awesome tidbit for minivan drivers. You know how, when the van is full of boosters for carpool, it's impossible. for. the. kids. to buckle. their. carseats? So my friend Rebecca did this in her old van, and I just remembered to call my car dealer this morning.

Did you know that you can call your dealer and order seatbelt extenders? As in little six inch doohickeys (omg doohickey is actually a word-my spell check didn't light up!) that can bring the buckle up six inches? And here is the kicker. Listen very carefully:

the seatbelt extenders are free.

Life changing, my dears, life changing.

I hope I've made your day just a teeny bit better.

So I lifted pictures off of Facebook

To share the happy Dovi with happy Aharon at Aharon and Chaya's engagement party.


The entire darned room was crying at the epic 2 minute long Dovi-Aharon embrace. It's so special for Dovi-Aharon's been his counselor for five years now and their bond is just amazing.

The Awesome Cereal Deal

I want to share the wealth with you guys.

Here's the deal:

If you live near a Dominicks/Safeway store, there is a great deal on cereal though the 17th-I've already bought like 15 boxes and will probably go back again and buy more.

Here's the story:

Buy 5 participating boxes, get $5 instant rebate. There are quite a few on sale for $2.29-$2.99.

The kicker comes when you use 5 $1 off coupons. If you clip coupons from the paper, there were 4 in Sunday's circular- or go to www.coupons.com or www.kelloggs.com and you can print a ton.

So I bought 5 boxes for... $1.60. Yes you heard me right. That was with buying the $2.29 cereals. Enjoy!

I'm trying to decide when it's going to become ridiculous. 25 boxes? 40? We go through a box in 1-2 days. So really, 25 boxes isn't too silly.

I did not come up with this deal.

Elisha, there are a few blogs I read with all this stuff. If you're intersted, I can give you the links.

Not Me! Monday

This past week...


It was certainly not me! who admonished my kiddies to stay far a way from the cookie sheets while baking Chanukah cookies and then proceeded to burn her finger on said cookie sheet.

It was certainly not me! who was using a kitchen towel (that slipped) instead of a potholder. I'm alway very safe in the kitchen.

It was also NOT ME! who was forced to iron about 16 dress shirts for the boys on Sunday because I have been procrastinating about doing my ironing.

It was also NOT me who decided to go to Homegoods and Old Navy instead of running 6 miles on Sunday.

I am not at all concerned about the impending marathon.

It was also not me who felt the need to call all her friends to inform them about the $0.29 cereal sale at Dominicks.

It was surely not me who went back to Dominicks twice and buy 5 boxes of cereal each time for a total of $1.60 for 5 boxes each time.

That would be ridiculous.

It is also NOT ME! who is so excited that Dovi's counselor from day camp for the past 5 years got engaged last week!

It was therefore definitely not me who kept her 11 year old up until after 10 pm on Saturday night to attend Aharon's engagement party.

And speaking of Dovi, it was CERTAINLY not me who forgot to pick up Dovi's valium, the valium that we were completely out of, the valium that he needs every day, until 5:47 pm, when the pharmacy closes at 6 pm.

It was therefore NOT ME who got up from the dinner table in the middle of dinner and tossed on her coat and ran to the pharmacy, arriving at 5:51 pm.

It was not me who breathed a major sigh of relief.

What about you? What didn't you you do this week?

Do You Hear It? Do You Hear It?

It's the sound of me banging my head against the wall. Over and over.

Why, you ask?

If I have to call my home health company one more time to yell at them discuss problems with Dovi's supply order, I will lose my mind. I'm warning you, this is long, and detailed. It will be enjoyed tremendously by the other moms in my boat, but those of you who don't deal with this day in and day out will be bored senseless. Don't say I didn't warn you.

A little background:

How old is Dovi? Oh yes, he's 11 years old. He's had a feeding tube since he was what? Oh yes, two weeks old. So we've been getting medical supplies for what? Oh yes, 11 years. And from where? Oh yes, the same company for all 11 years. Which hasn't been a problem for what? Oh yes, the previous 10 years 8 months.

I've heard other special needs parents and caregivers talk about the problems they have with their medical supply orders. The mistakes, omissions, forgotten deliveries, insurance problems, and on and on. And let me tell you, I felt pretty darn cocky. I LOVE(D) my supply company. Notice the (D). They were timely. They didn't mess up my orders. All insurance got processed correctly. They basically did the job correctly, a rare occurrence in this day and age.

Well, my dears, all has changed.

Let's call my home health company, say, HHA ( Home Health Agency-not their name. I'd like to avoid libel suits). For the previous 10 years 8 months, I would call the main (800) number from HHA to place my order. They were the clearinghouse for all orders fulfilled by HHA, a national company. Then, my order would be fulfilled by the somewhat local warehouse. Let's call said warehouse SW (Skokie Warehouse. They're not in Skokie. Again, I'd like to avoid libel.)

Well, about 4 months ago, HHA decided that to streamline operations (ie cut costs), customers would no longer call the (800) number at HHA to place orders, but instead, call the SW directly.

Big mistake, my dears, big freaking mistake.

Since SW started taking my orders, I have had headache after headache after headache. To illustrate:

• they delivered the same INCORRECT type of Pedialyte to me, not once, not twice, but three times. As in the same box of incorrect item was redelivered to me three days in a row. Every day, I'd call and say "You sent us the 1 L bottles, not the 8 oz bottles. We do not use 1 L bottles. We've been getting the 8 oz bottles for 10 years 8 months. Please send us the 8 oz bottles" They'd apologize. Rinse, repeat.
• They took my order and did not record it. For the record, Dovi gets a nutty amount of supplies. G-tube supplies, formula, oxygen supplies, and basic nursing supplies. It takes about 15 minutes to place an order. After a few days passed and nothing arrived, I called. They had no record of the order placement. We had to wait almost another week for the order.
• They, for some reason, unbeknownst to me, have billed everything to my insurance (thousands of dollars per month), except two boxes of latex gloves from August. Which I keep receiving bills for. We get two boxes of gloves per month. Our nurse likes to wear gloves sometimes. HHA bills our insurance every month for said gloves. Our insurance pays every month for said gloves. So, why can they not, despite my 4 calls to clear it up, bill my insurance for the two boxes from August?
• As I said before, every month I get Dovi's delivery. Remember, every month? I also work. Which means that every month when they deliver my order, 9 times out of 10, I am not home. Cause I'm at work? I also have a screened in porch on the side of my house. The house I have lived in for 6 years. So the lovely delivery guys leave my order in the side porch. I Benjie brings it in that night. I was supposed to be getting my order on Wednesday. It wasn't there. I figured they were running late and it would be there on Thursday. So Thursday afternoon, I came home from work and found a message on my answering machine that they needed to schedule a time to redeliver the order because they can't leave it due to the weather. Now I get it. It is snowy and cold here in Chicago. But we've been getting our orders left in our screened in porch for the past 6 years, and the previous 5 years before that when we were apartment dwellers, on our front porch! What the heck? I called. I yelled. Nicely, of course. My order came by courier at 6:30 pm. I don't give a crap that they had to pay overtime.
  
• Umm the order that came last night? Wrong. Well it was 99% right. G-tube buddies, we get 2 g-tube kits per month, 5 blue tip 24 inch extension sets (for medicine and Pedialyte boluses and overnight feeds), and 5 y-tip 24 inch extension sets (for his feeding pump). What did they send us? 3 g-tube kits, 5 blue tips, and no y tips. Kinda right. But in g-tube feeding land, kinda is not good enough. It must be correct. It was not.

So I just called the main (800) number. Got transfered to a manager (who is in the SW!). Told him my tale of woe and that I wanted my orders taken through the main (800) number. He told me I can't anymore. I said I don't want to use the SW anymore. He told me that if I'd like I can use the LW (Lincolnshire Warehouse. No, it's not in Lincolnshire. That whole libel thing again). I told him that's what I'd like, no I don't freaking care that the LW is really far away and they'll need to ship the formula by UPS and incur tons of extra delivery cost. Soooooo not my problem. I told him that if that doesn't work I'm leaving HHA altogether. After 11 years. Oh and by the way, where are my darned 5 y-tip extension sets? But thank you for the extra $200 g-tube kit. We'll enjoy it.

He's calling me back. Lovely.


And on to other things, I won the passive aggressive light bulb contest in my house. I adore my hubby. He's amazing. He rocks the husbandry world. He helps me clean up the kitchen after cooking on Thursday nights without me asking! He's been known to (gasp) take out the garbage, again, without me asking! Shocking, I know.

But Benjie, bless his soul, does. not. change. lightbulbs. The man just does not notice them. I guess until we'd be living in darkness. I hate burned out bulbs. I think it looks like you're just not on top of your house and its appearance. So over a week ago, two bulbs burned out- a bulb in one of our kitchen chandeliers, and one in the front hall. Yesterday, one burned out in the dining room chandelier. So of the four chandeliers on the first floor, three had burned out bulbs. I've been waiting. Finally, I gave in. I changed them all this morning. Benjie said I wasn't being fair. Whatever.

I've got bigger fish to fry. As in the stupid HHA.

Killing a Fly with a Sledgehammer?

So remember last week how I took Dovi to the orthotist to discuss his SMO orthotics? And the orthotist took one look at his gait and said we need AFOs? So the orthotist talking to Dovi's physical therapist. And I spoke to Dovi's physical therapist. And now I talk to you guys.

His PT is really not convinced that Dovi needs the AFOs. She compared it to killing a fly with a sledgehammer. As is AFOs are hard core, major orthotics. They are what kids with severe CP who cannot walk wear. She said that "they are really extreme, Sara. I'm not convinced he needs them".

I asked her what she would do if it was her child. That's my rule of thumb when talking to any medical professional when we have a decision to make: "What would you do if it was your child?". So she was really undecided. She said that she wishes that the SMOs had worked but she understands why the orthotist said they wont and his reasoning for wanting the AFOs. But she repeated that they are just...sooo....extreme.

We discussed how FD is progressive, blah blah blah, and as Dovi grows and more demands are put on his itty bitty little feet, his orthopedic issues will increase. That's why he needs orthotics now, and didn't need them, say 3 years ago. In the past year he's grown (Thank You, G-d!) about 2 1/2 inches and gained almost 20 pounds. But his feet have not grown at all. They are a size 13 if I'm generous. More like a 12, 12 1/2. Yes, he's 11. Kids with FD have teeny tiny itty bitty hands and feet. It's that crappy circulation issue again.

So these teeny tiny itty bitty size 13 feet are carrying a 72 pound over 4 foot tall body. And these size 13 feet are not normal, strong size 13 feet. They are size 13 feet with poor circulation (his feet look diabetic to me) and weak muscles. And weak little ankles. And osteoporosis. So his feet need help to literally hold up his body. And it will only get worse.

EDITED: I just realized I haven't summed up Dovi's orthopedic issues: he pronates both feet insanely-he literally walks on the inner sides of his feet. He rotates out his left foot when walking, the PT thinks to give himself more stability. He's unsteady with a wobbly gait. And he keeps his foot in a funky position-see how it's kind of pointed forward? That's his general foot position. Oh and notice his hugely oversized left big toe-you can see it from the side-it's from a displaced fracture that did not heal correctly. Lovely. EDITED AGAIN: to correct. Benjie reminded me: it wasn't a displaced fracture, it was a commutated fracture of the big toe. As in his bone broke into several pieces. And he didn't feel it. It happened like 3 years ago and his toe still looks like that. Frankly, we've got bigger fish to fry.


And Nadine (PT) went on to say that Dovi will use whatever "crutch" you offer him. He's lazy (takes after me). So if we give him AFOs, he'll use them. If we give him SMOs, he'll use them. Are we giving him too much, too soon?

But the orthotist said that there really is nothing to do with the SMOs. We will consistently have issues with blistering and sores, because he has orthopedic needs that are not being addressed by the SMOs. THe AFOs would address those issues, and then some.

It's the and then some that is the issue. It's basically AFOs or nothing. The SMOs are out.

So Nadine is calling Dovi's orthopedist in New York, and I am going to poll the FD parents that I know. Do other FD kids wear AFOs? Have they helped?

Or are we killing a fly with a sledgehammer?

Wordless Wednesday

(Alternately Titled: I Got Nuttin', Folks)

Kinda in the cold snowy winter funk. Kinda bummed that my "open the sienna" trick I bragged about did not work this repulsive icy morning.

Wishing I was home in my flannel jammy pants like I was yesterday. Looking forward to my thrifty trip back to Walgreens today.

So you're getting this today.




Look at me! I'm, crossing the finish line! My time did not suck! OK, I'm not speedy like other people who shall remain nameless Rachel and Rachel but I finish!

And I'll be doing it again in 6 (YIKES!) weeks.

Bring it on, baby!

If My Camera Had Not Died Today...

You would be getting pictures of Shana's huge window in her mouth. She lost her top tooth on Sunday and she is seriously the most adorable lisping girl ever...


If my camera had not died today...you would have gotten a picture of all my loot I got at Walgreens and Target...there are some great offers and coupons out there now, and boy did I cash in! If you ask nice (and are interested at all) I can share what I got.


If my camera had not died today...I would be sharing a picture of my precarious DVD player set up next to my treadmill in the scary slasher basement. I've been watching Pirates of the Caribbean while running-I never saw it and for some reason we were given both movies (there's only 2, right?) while on Make a Wish last year. They've been sitting in the shrink wrap for over a year. I was close to losing my mind running staring at my furnace-hence the precariously propped DVD player. I must say that I am finding the movie surprisingly enjoyable. But I have not a clue how anyone lets their young kids watch it. It's seriously creepy at times!

If my camera had not died today....I might consider sharing pictures of me on my couch in my cozy clothes eating leftover banana french toast and coffee with all my paperwork spread around me....bliss.

If my camera had not died today...I would not be asking all my loyal readers for a recommendation for a good point and shoot camera with the following requirements:

• easy to use
• under $150

oh those are my only 2 requirements. What camera do you have? Do you like it?

Not Me! Monday

It is NOT ME!!!! Who cannot, for some idiotic reason, get the Not Me! Button to paste onto my blog. WTH? I've copied it from my old posts AND from MCK and CANNOT get it.

So it is NOT ME who has wasted about 15 minutes trying to get this to happen.

So it would never be me who would just leave the messed up html code there in all its glory.

It is NOT ME who suspects that it has something to do with her crappy laptop that just might be infected with many viruses.

And it is also not me who just tried one more time and got it to work.

But it is also not me who thinks what she wrote was kinda funny so is leaving it up there anyway.


It was not me this week who realized that I forgot an ingredient in my chocolate cake, the chocolate cake that was the cornerstone of my dessert spread for a lunch for 19 people.

This person (who was not me) did not just slather that sucker with lots of frosting and hope for the best.

And for the record, the cake was just fine. Or in Not ME! style, it was NOT just fine.


It was not me this week whose heart swelled with joy at her excellent parent teacher conferences.

It was also NOT ME! who dragged her boys to Dominicks, solely to take advantage of the Fresca buy 2-get 3 deal.

This mom would never have refused to allow her kids to get anything else.

That would have been mean.

But this mom also did NOT make chocolate chip muffins with her kids (What is with me recently? I hate baking!)

It is also NOT ME who has so much paperwork to do but is too freaking lazy to do it at home.

So this incredibly lazy mom is NOT going to put it all in a bag and deal with it at work.

Because I never spend all day at work surfing the 'net, lacking any real work to do.

Yes, I do NOT have the best job ever

I did not just run 5 miles for the marathon...I do not rock!

It is also NOT ME who is considering staying up until midnight to try and be in the top 10...let's see where I end up on MCK...

So what else is new?

Dovi went to the orthotist last night. Who ever makes a 7 pm appointment to get their 11 year old's orthotics looked at? Evidently me.

So the very lovely guy checked out Dovi's orthotics that have been giving him so many blister issues. After we had a whole discussion about Jewish Genetic Diseases and how he and his fiance really should get tested. Which they hopefully will do.

It turns out that Dovi's having orthotic issues NOT from the orthotics not fitting correctly (wow that was a double negative if I've ever heard one). Rather, the orthotic are giving him blisters because they are not the correct orthotics for him.

Dovi has multiple things wrong with his feet. He pronates, he has tightish heel cords, and he keeps his feet in this odd flexion position. Since he keeps his feet in this position, and he does not feel any pain, the orthotist who will get genetic tested explained to me that he will have ongoing blistering issues. What he really needs are not the SMOs he has, that my insurance company just paid over $1,000 for, but he actually needs AFOs. Which my insurance company will assumadly pay $1,500 for. Because I certainly aint. But I foresee a large fight in my future. The SMOs? Umm made 7/31/08. It's etched into the plastic. J. P 7/31/08.

This is what he has-SMOs. They go about 2 inches above his ankle.

This is that he's getting. Hinged AFOs. Up to his knees. Which is not a problem in the winter, but in the summer, I will cry. He will look even more freaking disabled than he does already. I mean, everyone at his camps knows him and loves him already. But boo hoo....they look so disabled. I guess it can go with my handicapped tag in my van and his wheelchair. Boo freaking hoo.

But on the upside he chose Bulls and Blackhawks designs. They're pretty snazzy, in a sad pathetic kind of way.

Oh and gals with a child who has had a cranial band? Want a hoot? This place does them too. And they are currently remodeling their office. And they made the casting room for bands all the way in the back, and added extra insulation so as to make it soundproof. You know why. heehee.

Tank You, Waffi!

I can't believe I forgot to post this!

Dovi's wonderful counselor from this past summer, Raphi, sent Dovi a birthday present. He loves it, of course.

So as Dovi would say...

Tank You, Waffi!

Hmmmm....what is this?

Ooh ooh! It's baseball cards!

Thank you, Raphi!

My you all felt strongly about that.

If I had known that you all would feel so strongly about my fashion choices, I would've posted my Ugg quandary earlier. My word! 14 comments! That's almost my world record-my highest comment count in the past was 20 for Dovi's Birthday and 29 for my Magnum Opus-and then 14 for the Uggs???

Hee hee. I love you guys!

Sooo....the end result of the Ugg question.
Happy Birthday Sara. Love, Mommy.

My ever enabling, ever generous mother allowed me to avoid my insane issue of spending on myself by reading my post and buying me an early birthday gift.

Yes, I am very spoiled. Yes, my mother still buys me birthday gifts and I am 31 years old. Deal with it. You know you wish you were me.

My tootsies are warm and cozy this freezing cold (It was 18 freaking degrees!) Chicago morning.


And in case you all were wondering, my "open the Sienna" trick worked like a charm this morning. And as I was zipping down the street with a van full of kids and saw one of my happy readers, who shall remain nameless trying to get her van open, I showed her the correct way to implement the "Sara P patented frozen Sienna opening procedure"

And I was warm like a snowman.

EDITED: My sister has pointed out that "warm like a snowman" is an oxymoron and frankly makes no sense.

I was warm like an Eskimo.

Better now?

No Ugg or Not to Ugg....Ugh!!

So you all will have to indulge my insanity...

I'm in a quandary. I need new boots. I live here in snowy Chicago, and it's cold. And wintry. And generally icky. I'd like to sit home in my pajamas lounge wear all day. But sometimes, you've gotta get dressed and leave. As in every day you need to do that. And I am cold. I'm sitting at my desk at work with my heater running full blast. I like being cozy. Benjie and I constantly need to turn the ceiling fan in our bedroom (yes,I'm a nice wife who gave in to the darn need for an ugly ceiling fan in our otherwise pretty bedroom) on and off.

So back to the boots.

I need new ones. I want ones that are

• warm
• cozy
• waterproof to some degree
• stylish
• warm
• warm
• warm
• warm

Because, remember? I'm cold.

So basically, I want a pair of Uggs. So I'm trying to justify the gasp-worthy price tag. Preface this by saying that my six year old daughter has a pair of Uggs. Real, chestnut Uggs from Nordy's. Not fake Target ones. But let me explain that I had a boatload of Nordstroms Notes that I saved up just for that occasion. Why must my daughter have Uggs? I was the child who had the Flower Patch Kid. Not the Cabbage Patch Kid. The Flower Patch Kid. And it scarred me, it really did. Mommy, I understand your disdain for all things material. I get that you refused, on principle, to stand in line for like 15 hours to get me a doll, a doll that was just like every other doll. But kids, they want to fit in. And every. single. girl. at. Shana's. school. has Uggs. I kid you not. I didn't buy her school shoes. I bought her Uggs. So that's that with her.

But I don't spend money on myself. Despite rumors amongst my siblings to the contrary, I do not. I get a few new Shabbos outfits per season thanks to a lovely shopping trip with my mom to Fox's, but that's it. I really don't feel the need to buy for myself. I'm not a fashionista.

A few years back I was shopping with a friend, and we were at Banana Republic, and I tried on a black wrap dress-simple, elegant, I can wear it for years. I agonized over the price tag. It was $120. I told her that I haven't spent that much on myself in I don't remember how long. She marched me up to that counter and FORCED me to buy the dress. That was about two years ago, and let me tell you, that dress has served me well. But it's so hard to spend on myself. The skirt I'm wearing right now? Bought it 8 years ago while I was still in college.

Lest you all think I walk around looking like a shmatta, I really do not. I'm groomed. I'm clean. I'm reasonably fashionable. Not amazingly so, but I think I'm passable.

The last pair of winter boots I bought, Benjie's sister was a sophomore in high school. She is now married with 4 kids. I think I'm due. I even went so far as to throw out said boots at the end of last winter because they were so dated and heinous.

So I went to Target a few days ago and picked up a pair of their tall black fake Uggs. Price tag? $27.99. But let's be honest, peeps. Those suckers are made out of fake suede and polyester pile. They will last me, tops, 1 year. Maybe if I baby them, 2. And, frankly, they are the Flower Patch Kid of Uggs. They don't have that sneaky little brag tag on the back. So they are sitting in my bedroom. I have not worn them yet.

Because I am undecided. Should I just bite the bullet, say, "I'm going to wear those darned boots for at least 5 or 6 years, knowing my history, and just invest in the real shearling (or whatever the heck they are) Uggs?" Or say, "Screw the fad! I'm being thrifty"?

Because, you know, I really like being thrifty. Heck, I've been back to the meanies at KMart twice in the past two days to take advantage of their double coupon days and buy multiple boxes of Rice Crispies for $.50 each. Yes. $.50 each. Yesterday I walked out of there having spent $1.60 on three boxes of cereal.

So I'm kind of torn, as you can tell by the ridiculous length of this post.

So...to Ugg or not to Ugg...that is the question.

Anyone have any answers?

Ooh Ooh! A Bonus Post!

So because that post was just so utterly pathetic I thought you all might enjoy a brief synopsis of the conversation I just had with a nurse.

You see, Dovi is seen every year in New York by the lovely folks at the Dysautonomia Treatment and Evaluation Center. They coordinate his care. You know, something about "world wide expert on FD" just kinda gets people like me all twitchy and excited.

His appointment this year is in February.

Remember how Dovi has Medicaid through that lovely waiver program that I had the insane fight with the insane doctor at the insane hearing? Well, it seems that they offer some level of transportation funding to travel to and from doctor appointments. The idea of it is more like a medicar picking us up and driving us to Children's here in Lincoln Park, but we were told to apply for them to pay for our tickets to New York. And if he doesn't get that, we might get funding from another program we get services from DSCC, but first we need to get denied by Medicaid for transport, then maybe DSCC will pay.

Frankly, I don't care who pays, as long as it's not me.

So I've been chatting on and off for a week or so with this lovely nurse, Judy, at the transport company. She has to collect all this random information, why Dr. Axelrod is the best doctor, etc etc etc. So I've told her repeatedly that, y'know, there are only like 350 living people with FD now (correct me if I'm wrong, my loyal FD readers, as in Michelle). Dovi is number 512 of the total people diagnosed at the Center since its inception some 40 years ago. And, y'know, Dr. Axelrod. has. treated. every. single. one. of. them. So, she's kinda the expert? More like, she, and her associates, are really the only show in town, or in North America (and don't get me going with the politics. She's the only MD out there) available to guide us in the treatment of our son's rare, fatal genetic disease?

So we're going. Now please pay.

Back to my conversation.

So she says to me: "Have you ever gone to see Dr. XXX at Children's?" Now in Dr. XXX's defense, I'm sure he's a lovely doctor. A lovely GENETICIST. Yes, Geneticists see kids with FD. They are the ones who diagnose them and then send them on their merry way to Dr. Axelrod (noticing a pattern here?) Geneticists don't manage the day to day care of a kids with a genetic disease.

"Hi, Dr. XXX. Dovi's retching, y'know, it's really bad now. He's in crisis really bad. His BP's nuts and the valium isn't working. How much can I give him before we need to go in?"

Do you think he'd know what to do about that?

Neither do I.

So when lovely Judy asked me that question, "Do I know Dr. XXX, he has seen kids with FD before?"

My response?

"No. I have not. And I will not"

But I said it nicely. Sort of.

Now pay, sillies.

Have no fear, my faithful followers

I would not leave you a day without a post. But it's kinda random.

• Does anyone else have problems with their Sienna's power door freezing shut? It's possibly the most annoying thing ever on a cold snowy winter morning, although I've finally figured out the secret to get it open.
• I believe that there should be a two hour limit on all dinners that one needs to go to. After two hours one tends to get a little punchy.
• thank you those of you who have so far sponsored me for the rapidly-approaching-marathon. Anyone else who'd like to contribute, click here!
• When I am cheery and happy to the kids, they are cheery and happy to me. This happened last night. Conversely, when I am grouchy and crabby to them, they are grouchy and crabby back to me. This happened this morning.
• Anyone want to come to my house and de-crappify? I need to get rid of some stuff. I'm drowning.
• Anyone else want to come and cook with me for my lunch of 20 this Shabbos?
• And I must congratulate myself for having 20 people for this Shabbos lunch, following a week of a dinner last night, parent teacher conferences on Wednesday night, Dovi having an orthotic appointment at 7 pm on Thursday night, and a orthodontist appointment on Friday morning. Ummm great planning.

And that's all I can come up with for now.

Not Me! Monday

Hi everyone...

It was certainly not me! who during a bout with the most wicked stomach bug I've ever had was thinking about how much weight I must have lost...

And who has NOT been checking out her decidedly flatter tummy in the mirror every time I walk by one...

I would never be laying on the couch on Sunday morning writing these Not Me!s while my 11 year old happily watches the Doodlebops. I only allow Dovi to watch age appropriate material.

Which the Doodlebops most certainly are NOT.

I did not just look at my hubby and say "Who are you and where did you take my husband?" when he informed me that he is taking Elisha and Jakie to the birthday party, and taking Shana with him so they can go out for some Abba-Shana chocolate milk/coffee, and btw, the dark load is in the washer and the rest of the weekend's laundry is sorted on the laundry room floor.

I am definitely NOT wondering what really bad thing he did that he is buttering me up for...(although in all honesty, I know that Benjie really is an awesome guy who is just trying to be nice to me since I get sick about once every two years)

While suffering from my stomach bug this weekend, I did not still manage to read three books, and am well through my 4th.

I am not about to cry from the ear splitting awful racket Doodlebops. Yikes.

It is NOT ME! who has a love/hate relationship with stuff.

I do not sometimes have the desire to throw away all the crap in my house and live a clutter free austere existence.

I am not continually cleaning up and throwing away.

I do not understand why it's never enough.

It was not me! who just got an email from Benjie entitled "Roofie at Starbucks" and thought it was some spam email about date rape drugs in Starbucks drinks, only to open it and realize it was a picture of our very adorable daughter who we often call Roofie who is at Starbucks with my darling husband now (note to self: maybe Roofie isn't the best nickname?)

It is not me who is looking at another Sunday spent in pajamas lounge clothes and feels pretty darn glad about that.

It was NOT ME! who whenever Dovi fell over (two times today-once down half the stairs and once across the den. He's talented that way) ran and examined all his extremities for breaks. He seems to be fine.

I most certainly DID NOT blow dry Shana's hair in preparation for school picture day. What kind of vain woman blows dry her 6 year old's hair???

I would NEVER have forgotten to buy my kids snow pants and new boots, thus necessitating them wearing last years too small boots and NO snowpants on today, the first snowfall, and also school picture day.

I am NOT hoping that the teachers DO NOT take the children outside to play.

I am NOT expecting a note home asking me to please dress my children appropriately (this is the midwest, after all, and they play outside all year round)

And that's all. Have a great week my dears!