Dovi's New Wheels!

Well, it hasn't arrived yet.

But in about weeks, Dovi should be the proud owner of this!


It's a Quickie 2 wheelchair...

I'm so excited! I must say it's a little sad what excites us special needs mommas.


Dovi currently has a Maclaren Major



and a Convaid Safari

Neither one is really meeting our needs-the Convaid is 6 years old and doesn't fit him so well (and frankly a royal PITB to fold) and the Macalaren is too small and...ahem....a little squeaky. You can hear Dovi coming from a block away in the Maclaren.

So.

Our great hope is that he will be able to wheel himself in this snazzy new chair. He chose copper color.

Hooray!

Insurance Stupidity Take 283,456

I swear. I could spend all day telling you all stories of the idiocy that I experience dealing with insurance companies. It seems that they try and find ways to make things difficult for us parents of medically involved children. Most parents would not expose their children to radiation just for kicks. Obviously, if a doctor ordered an x-ray, it was medically necessary. Must we submit a million pages of documentation to prove that?

But I digress. I have an actually amusing (well other special needs people will find it amusing. The rest of you will be perplexed) story to tell you all.

Correct me if I'm wrong, but if I'm not mistaken, the statute of limitations to bill someone for medical procedures is two years. Keep that in mind.

On October 17, 2007, Dovi broke his tibia (remember the six month stint of ongoing broken legs?). How do I know that very specific date, now, over two years later?

Well, my readers, that's because I received a bill from the orthopedist who saw Dovi in the emergency room. In September of 2009. For the date of service October 17, 2007. And I had never received any correspondence from the orthopedists' office before.

Hmmmm who do you think was auditing their accounts and realized that they didn't collect from the insurance company and decided to try and do something about it?

So I called the orthopedist practice in September and informed them that there was absolutely no chance of them seeing a penny of the $431 they were billing me. I don't even have that insurance anymore, but I knew that the policy covered emergency services at 100% coverage after a $50 co-pay. Which I paid. So heck if I was giving them $431. And had they contacted me, say, 18-24 months ago, I would have been happy to contact my then-insurance company to work it out, but this was soooooo not my problem anymore. I believe I might have ever so slightly slammed the phone down after informing them of said facts.

Well, they sent me another bill in October. I called them again. The "sweet" woman I spoke to informed me that I could say it wasn't my problem as much as I wanted, but if I didn't pay the bill they'd take me to collections. And they had been corresponding with my then-insurance company for the past two years but had been unsuccessful in collecting the account. I believe I hung up on her.

I then rethought the issue and decided that it was to my benefit to get it taken care of before the bill collectors came a-calling.

So I called them back and informed them that since I was a very reasonable person (I actually SAID that! I'm gutsy), I would call the insurance company ONE TIME and try and deal with it. And by the way, can I please have my ID number and group number because I haven't had this insurance in almost two years thankyouverymuch?

So I called. Got a very lovely guy on the phone.

Want to know why they denied the claim over and over? Well it seems that the orthopedists' office was billing the claim as an inpatient service when Dovi had never been admitted! And since there was no inpatient authorization on file, the claim was denied.

Ooh was I pleased to hear it was the orthopedists' fault.

So I asked the guy if we could conference the orthopedists' office on the line. He was happy to oblige.

We called the previously condescending snooty woman. She was all "we've been submitting, you keep denying, she needs to pay" etc

Then the insurance guy told her how they'd screwed up. Let me tell you, she was silent. But she never admitted she was wrong! She just got the fax information and said she'd fax over the claim and hung up sooooo fast.


But today, I had a message on my answering machine from the insurance guy telling me that he had not yet received the corrected claim from the orthopedists' office. Now I need to call them again. Drat.

Explosive!

So.

Yesterday (was it only yesterday???) I flew home at the lovely hour of 6:07am.

My brother drove me to the airport. I got there perfectly on time at 5:00am.

I got in line at security at 5:10am.

I RAN to my flight at 5:50am.

Why, you ask, did it take me 40 minutes in security?

Well.

As you all have read, we're having insurance headaches with Dovi's portable oxygen concentrator, the Sequal Eclipse.

So, instead of leaving the concentrator at camp with him for two weeks, we decided to bring it home, return it, and then get it back when I have to fly back and pick him up in ten days. Yes, a royal pain, but if insurance denies it, I will have saved two weeks of rental costs. It's no big deal at camp because they have lots of oxygen concentrators (don't all sleepaway camps stock oxygen concentrators??)

Back to my flight home.

I got in line at security, waited about ten minutes to get to the xray machine.

Put the Eclipse through.

They pulled it off (they always do) after it went through. Did that whole swab thing-they wipe it down and put the little wipey into a machine.

The machine lit up red and started alarming.

He opened the machine.

Cleaned it.

Swabbed again.

Red light, alarm.

Cleaned machine again.

Swabbed again.

Red light, alarm.

At this point, I'm assuming that the test machine itself is not working-it's erroring.

So I ask the TSA guy: "What's up?"

He says: "Ma'am? Is this machine yours?"

Me: "Yes, it is. It's a portable, airline approved oxygen concentrator. Is there a problem?"

TSA man: " Well, Ma'am, this device is alarming positive for the explosive TNT"

Me: "Excuse me? It's my son's oxygen concentrator! We used it on the way here!"

TSA man: "Let me get my supervisor"

We go back and forth. I show them the little airplane insignia on the device. They wipe it again. Take out the battery. Put it through over and over.

Keeps alarming.

At this point, I'm getting very alarmed myself! It's 5:35, and my flight boards at 5:30, leaves at 6:07.

I tell the supervisor again what it is.

He asks me: "Well if it's your son's, where is he?"

Me: "Ummm he's at sleepaway camp. You'll see us flying home the first week of August with this device again!! But I do have his prescription. Will that help?"

I show the prescription.

Back and forth.

He tells me that they might not even let me check it under the plane because it alarmed as an explosive.

I tell him that I AM NOT (nicely of course, I remained TOTALLY calm. I'm serious!) leaving a $5,000 oxygen concentrator that doesn't even belong to me (it belongs to my HH) at the Newark airport.

They swab more. Test more.

For whatever reason, at about 5:50 am, they decided to let me through.

I RAN for the airplane. I might have been the last one on.

Got on. Went to sleep.

Wondering, all the while, if my TNT positive oxygen concentrator was going to explode.

It didn't.

Wish us luck when we fly home!

Then: Now

This past Sunday, we traveled to the small town that I lived in until I was 3 years old.

It's a small, picturesque town about 45 minutes from Chicago.

While there, we went to the zoo. Benjie says it's a cross between Lincoln Park Zoo and Indian Boundary Park.

It was very cute. And very cheap. There were about 18 animals,

yes, there were peacocks roaming the grounds. I felt like I was at Neverland or something...


a fountain, and this:

the sign kind of makes you think it's going to be some awesome, incredible place, right?
Well here it is:


Now if this isn't a small town zoo "adventure land" I don't know what is.

After the zoo/park, we went to the beach.


Dovi loves the beach. He even had a little chair. Benjie didn't love having to carry him down this huge hill to the beach from the parking...


Then we had a picnic dinner in the park.

Thanks, Shosh for the snazzy little travel grill. We need to get one of these. Or just continue to steal yours whenever needed. Leave it on your back porch and we're all good to go. And we're all stocked up with turkey dogs, thankyouverymuch (hey my lurker reader-you know who you are-that's what I was stealing buying last Sunday morning)

The kids enjoyed.


Then we drove a few miles to my old house.

Many of you who know me in real life know that I am not a huge fan of my house. Don't get me wrong. I love my home. I love what I've done to it, I love the people who live in it. I love the feeling that you get in it. But the house itself? 1950's boxy architecture leaves something to be desired, at least for me.

So I give you a comparison.

My house:
My old house:


My front porch:


My old front porch:


And just to torture myself more, my old driveway:


My driveway now:







Oh yeah, I don't have a driveway.

I seriously didn't want to leave. Actually, I wanted to knock on the door but I wimped out.


On a side note, still no decision on the oxygen. It looks like I'm going to have to give them my credit card as a "deposit" to get the oxygen delivered on Monday so we can leave on Tuesday. Don't worry, they won't charge my card the $500 deposit and $150/week until the insurance denies it.

Thanks a lot.

Ahem.

Don't Fight Me. You will. not. win.

I've edited out personal stuff-like phone numbers, ID numbers, and dates. So some sentances might be odd.

To Whom It May Concern:

This letter is regarding Joseph P’s oxygen needs.

Joseph has Familial Dysautonomia (FD), a rare genetic disease. FD is caused by dysfunction of the autonomic nervous system. The autonomic nervous system controls all involuntary body activities such as swallowing, temperature regulation, blood pressure regulation, and breathing. Because Joseph has FD, all of these activities are impacted.

When Joseph flies on an airplane, he has increased oxygen needs. When the cabin is pressurized on a plane, the oxygen in the air decreases, and your body’s autonomic nervous system sends a signal to the lungs to breath deeper to maintain adequate oxygen levels. Because Joseph’s autonomic nervous system does not function correctly, when the plane is pressurized, Joseph’s lungs do not get the signal to breath deeper. Without supplemental oxygen on a plane, Joseph will not take in enough oxygen. Within minutes, his body will not receive enough oxygen and he will go into respiratory distress, ultimately leading to death if supplemental oxygen is not administered. He cannot be off of the supplemental oxygen even for a few minutes-this will lead to respiratory distress almost immediately.

Joseph will be traveling to New York. He will be traveling from Chicago to New York to see his orthopedic surgeon, Dr. David Feldman, for a follow up appointment from his leg lengthening osteotomy and foot reconstruction surgery that was done in New York by Dr. Feldman at NYU hospital on XXXXXXX. It is medically necessary for Joseph to travel to New York to follow up with Dr. Feldman.

Therefore, we are requesting that XXXXXXXXXextend coverage to Joseph for the Sequal Eclipse Portable Oxygen Concetrator.

The Sequal Eclipse is the only airline approved oxygen concentrator that offers continuous oxygen flow versus breath triggered oxygen flow. This is important because Joseph’s body will not automatically breathe in without constant oxygen flow. Additionally, the Sequal Eclipse is portable. This is important because the oxygen which is rented from the airline is often tethered to the overhead compartment, thus making it unable to be moved. If the oxygen cannot be moved, Joseph is unable to use the bathroom facilities on the airplane without being detached from the oxygen. If Joseph is detached from the oxygen, even for a short time to use the facilities, he will turn blue and pass out.

Additionally, the Sequal Eclipse can be used at our destination overnight. Joseph is dependent on oxygen over night at a rate of one liter attached to his BiPap machine. Without the Sequal Eclipse, it would be necessary for Blue Cross to arrange oxygen rental in New York at additional cost to the company.

We are also requesting that Blue Cross extend coverage for the Sequal Eclipse to be used as our back up oxygen concentrator in the home instead of a large, non portable oxygen concentrator. Joseph currently utilizes liquid oxygen for home use, but requires a back up device to ensure ongoing oxygen services in case of liquid failure or leak.

The Sequal is an efficient, cost effective method of portable oxygen for Joseph. It is medically necessary for Joseph to receive coverage for the Sequal Eclipse.

Attached is additional information about Familial Dysautonomia and the Sequal Eclipse, as well as a prescription from Joseph’s primary care physician for the device.

If you have any questions, please feel free to contact me, Sara P, Joseph’s mother, at XXXXXXXXXX, Joseph’s PCP, XXXXXXXXX, at XXXXXXXXXX, or Joseph’s Familial Dysautonomia specialist, Dr. XXXXXXXX, at XXXXXXXXX.

Thank you very much for your prompt approval of this medically necessary device.

Sincerely,

Sara P

Shabbos, Dovi Style

Most of you know that I am an Orthodox Jew. That means that our Shabbos, or Sabbath, can look a little interesting to someone who has not experienced it. The main thing you'd notice is that we don't use electricity. No, no, we don't sit in the dark. What we do not do, though, is turn things on or off. So if the light is on, it stays on from sundown on Friday until sundown on Saturday. We do use timers to turn lights on and off, but we do not do so directly.

The real only exception to this rule is when you have someone who is sick. Not "ooh, my head hurts a tad, I'd be happier with a dark room" but a real, sick person. There is a name for someone who qualifies for this specification, a Choleh SheYesh Bo Sacanah-a sick person who has a risk-as in if they didn't get _____, they'd be in danger of getting sicker, or, G-d forbid, dying.

So Mr. D is a such a person. Thus, we turn on and off his feeding pump, his BiPap, his oxygen, his pulse ox, and his nebulizer on Shabbos.

Not only are you allowed to do such activities, you are REQUIRED to do so.

So.

Let me introduce you to this past Friday night/Saturday morning, Dovi Style.

8pm: Dovi Nebulizer on and off

8:30pm: Dovi to bed-turn on BiPap and oxygen concentrator

12:45am: Dovi's concentrator starts beeping error...turn off concentrator. Turn concentrator back on. Turn off BiPap while working on it. Check liquid tank that's supposed to be backup....oops, it's empty. Spend 1/2 an hour turning concentrator back on and off, taking the battery in and out, until it starts working...go to sleep and hope for the best

2:00 am: Dovi's pulse ox starts alarming because I had to unplug it to plug in the concentrator straight into the wall and there is now nowhere to plug in the pulse ox so it's alarming low battery, loose connection, turn that off because otherwise it will alarm at 100 decibals all night and Dovi won't be able to sleep

7am: turn off concentrator and BiPap when Dovi gets up

8am: Nebulizer on and off

8:30am: plug in feeding pump to charge because it's on low battery and he can't eat otherwise.

8:45 am: hope it got enough juice and turn on the pump to make Dovi's feed

9:15 am: everyone else went to shul, call Home Health agency to come do an emergency refill on Dovi's empty liquid oxygen so he can safely go to sleep tonight. Speak to answering service

9:30am: answer call from Home Health answering service calling me back to CONFIRM that the concentrator is not working and the liquid is empty. Yes. It is erroring. Error 90 if you must know.

9:45 am: answer call from Home Health AGAIN telling me that the on call oxygen guy will call me to confirm that he's coming

10:15 am: answer call AGAIN, now talking to on call oxygen guy. Yes. I'm home. Please come and refill his tank. I got his concentrator to work last night but am not confident it will work again tonight. Yes, we still have the Sequal Eclipse. What? I was supposed to return it 9 months ago? Well no one told me that and no one from Home Health called me to get it so if the insurance denies it I am certainly not paying for it. Whatever. Come fill my liquid, take my erroring Sequal, and we'll work it out on Monday (currently waiting for a call back)

12pm: Oxygen guy comes. Refills tank. Takes Sequal. You don't sign on Saturday, right? Nope, I don't. Have a nice day.

Good Shabbos everyone.

Ask Sara! Answer 6

OK one more...


Anonymous asked...

what is involved in your day to day care for dovi?


You really want to know?



Maybe I should have Raphi do a guest post on this.

Ooh! Raphi, you're going to do a "what is involved in your day to day care for dovi? AT CAMP SIMCHA SPECIAL version...ooh! fun!



OK. Our day to day with Dovi, while busy, is nowhere near as busy as many other special needs families. I think the easiest way to do this is to cut and paste Dovi's daily schedule that we send with him.



So here you are.

6am Medication 4 mg valium and .075 mg catapres

8am Nebulizer 1 albuterol and 1 budesonide

8am Feeding 1 ¾ cans Peptamen with sprinkle Benefiber via pump

8am Eye Drops 2 drops per eye

8am Medication .75 mg robinol, .1mg florinef

10am Pedialyte 8 oz

10am Eye Drops 2 drops per eye

12pm Lunch 1 ¾ cans Peptamen with sprinkle Benefiber in addition to any food that he eats.

12pm Medication 1.25 mg midrodrine

2pm Pedialyte 8 oz

2pm Eye Drops 2 drops per eye

5pm Dinner Regular Table Food-whatever he wants.

5pm Pedialyte 8 oz

5pm Eye Drops 2 drops per eye

7pm Nebulizer 1 albuterol and 1 budesonide

7pm Medication .75 mg robinol, .075 mg catapres

7pm Eye Ointment small amount in inside corner of each eye

7pm Diapers 2 diapers at bedtime

7pm Oxygen 1 L hooked in to BiPap

7pm BiPap Settings pre-programmed into machine. Refill water reservoir weekly

7pm Pulse Ox Set to alarm at 88

10pm Feeding 2 cans Peptamen Jr via gravity bag

10pm Diapers check him-change diapers/sheets/pjs if necessary

Dovi has much of his medical care centered around meals. I try to not be too hung up on the exact times-you and I don't eat at the same time every day, so why should Dovi?



So that's kind of that. I guess it kind of is a lot? I don't know-I'm so used to it and have been doing it for so long that it's rather simple-I can do a feeding in a pitch black room if need be.

I guess the abnormal becomes normal after a period of time. I remember when Dovi went to Camp Simcha Special the first time. Remember, the triplets were 1 year old that summer-so in all truthfulness we should have been a little...ahem....busy? But holy cow! did I have free time that summer.

I could not get over (I know, this sounds bizarre) how little effort it took to care for three healthy little ones. When I didn't have to give meds, nebulize, dress a kid who is technically old enough to dress himself, and make a feed, all before 8 am, it amazed me how much time I had on my hands.

I'm not saying this to make you all feel like I'm minimizing what it takes to care for "healthy", non medically involved kids.

It's more that I didn't realize how much it takes to care for Dovi, and how that much can become normal.

Hang On...It's Going to Be a Wild Ride...

I'm back.

I cannot believe I took off two weeks from blogging! I must say that I tip my hat to all SAHMs who blog...I have no idea how you find the time!

Pesach was great. Hectic but great. I have a bunch of posts to write, but first I need to update you all on the upcoming few weeks.

As I've written previously, Dovi is having surgery on his left leg. And his big toe, as he makes sure to remind us every time-I'm not sure why it excites him so much that he's getting the growth plate in his big toe fixed but as long as he's happy, I'm happy.

Dr. Feldman felt pity on us and the madness that is our lives and is currently planning on combining both surgeries into one longer surgery on Monday, April 27.

Yes, that's one week from today.

I'm nowhere near ready.

Remember my panic this past summer trying to get Dovi ready for camp? And my lists and craziness?

Umm...yeah.

So today begins the great push to move to New York for two weeks.

Yes, you read that right. Dovi's surgery is Monday. We're going on Sunday, April 26. My return ticket? Monday, May 11.

No, I'm not panicking. At all. OK, only a little.

Dovi is not going to be in the hospital for two whole weeks. We think. We think (notice my generous use of italics) that he will be in the hospital for three-four days. But this is Dovi. This is the kid that ended up spending three weeks inpatient post scoliosis surgery in 2007. And needed a second surgery six months later. And contracted MRSA in his wound. And had his wound open up. And cannot use dissolving stitches anymore because they don't seem to hold his wounds closed, and then, y'know, he contracts MRSA. And needs IV antibiotics for four weeks. In New Jersey. Over Pesach 2005. Yes, we spent Pesach four years ago in Teaneck in my brother's house (They weren't there. They went to my mom in Philadelphia. Speaking of which, family members that read this, why didn't you all just move the family Pesach to Teaneck that year? Remind me what the story was).

So.

I plan on being in the Tri State area for about two weeks.

And I have

1. three other kids
2. a job
3. a home
4. three other kids
5. a job
6. a home
7. no nanny this time around

Should be interesting.

What I also have is

1. three kids who are in school 8 hours per day
2. a job that recently cut me to ten hours per week (darned economy. darned recession. once this whole surgery inconvenience is over I need a new job.)
3. a helpful husband to deal with said home
4. A mom who is coming in from Sunday night until Thursday morning to care for said three other kids
5. A mother in law and sister in law who are very generous with their time to help care for said three other kids after my mom leaves
   
6. Many friends and family, both in Chicago and in New York/New Jersey, that have offered to help.
   

So here's to hoping that it will all work out.

Many lists need to be written and phone calls have to be made.

Much planning.

Much organization.

You all know I'm good at that.

It's not the actual doing, it's the lack of lists that do me in.

I'll be busy in Excel this afternoon. Just for entertainment, I might share my list once I'm done. Don't run away screaming.

Liars.

So yesterday I read an article online by a mother of a child with special needs.

She was talking about the blessings of her child. How she had met people she would have never met, had experiences she would never have had, etc., by having her child with disabilities.

She went on by saying that she would not have it any other way.

I have one thing to say to her.


You are a liar.


You cannot, in any way, shape, or form, convince me, as a special needs mom, that I would not make Dovi "normal", given the chance.

Given the chance, why on earth would I NOT want my son to suffer? To struggle?

Given the chance, why on earth would I NOT want my life, the life of my husband, and my other children, turned upside down and inside out?

Yes, I've met people I would never have. But darn it, my wonderful friend Peta who I met at the therapy clinic ten years ago! when her daughter Elaina and my Dovi had PT and OT at alternating times...I would be very happy to not know you, and I'm sure you feel the same way, if Dovi and Elaina were healthy.

So, mom who would not want it any other way...

Really?

You enjoy having a child who needs ten medications to survive?
You think a g-tube is a preferred way to eat?
You think your child enjoys struggling to communicate?
You enjoy financial struggles due to extreme expenses for your child?
You enjoy IEPs where you need to fight for every.little.thing.?
and on. and on. and on.

Really?

C'mon.

I don't believe you.

Intrusive?

So since Benjie and I went to Florida last weekend, we rearranged Dovi's night nurse's schedule to work the entire time we were gone. She works five nights per week, usually Monday through Friday.

Well what we had her do instead was work Thursday-Tuesday nights to give my in laws coverage and a full night's sleep while we were gone.

So that means that she did not work Wednesday and Thursday nights this week.

So while we are tired (correction:Benjie is tired. Dovi wants nothing to do with me at night. Or frankly during the day either. I am a poor, poor substitute for the All Powerful Oz Abba), I said something to Benjie last night:

"You know, it's kind of nice being just us in the house"

He agreed.

Now I must say that our nurse is MAGNIFICENT. We adore adore adore her. She adores Dovi. Dovi adores her. She has worked for us for almost two years. I have heard the nightmarish stories people have to tell about their nurses-no call no shows, drunk on the job (I kid you not. The child was total care. The mother is literally suffering from post traumatic stress disorder now from coming home and finding her nurse passed out on the floor next to her ventilated son. I'm not making that up), stealing, lying, etc etc etc. So I have a hearty appreciation for her nurse, her caring and respect for Dovi and our family.

But the bottom line? Have you been in my house? It is not big. It's actually rather small. I love it. It's cozy. Aside for the need for another bedroom (how much longer can Shana share with Elisha and Jacob? They are six. It's not good), I could not ask for more in my lovely home.

But five nights a week, we share our home with our nurse.

She is unobtrusive. Quiet. Kind. But she is also about ten feet away from my and Benjie's room. So we have lost a level of privacy.

So while we Benjie appreciate(s) the sleep that having our nurse gives us, it was nice, really a treat, to be just us overnight.

Although I'm not sure if Benjie still felt the same way while giving Dovi his meds and changing him and his linens at 4 am.

Sara's Spectacular Shopping Days

OK everyone, I'm so darned proud of my recent shopping endeavors that you all need to read about them.

This will be HIGHLY boring for all my trusty camp counselor readers. But all you married women, enjoy. Mostly Shosh, who is my trusty partner in crime.

Ready? Set? OK here we go...


JEWEL

Jewel is running a promo-buy $30 in P&G products, get $15 in catalina coupons for a future purpose, plus if you spend $25 in baby products you get another $5-for a total of $20 in catalinas.

Yesterday, I bought like 8 boxes of Gushers (pushover mom that I am), 2 packs of wipes, a bottle of Pantene, and a bottle of Dawn. Paid $26 (after coupons), got $15.

Today, bought 6 packs of wipes, got it down to $29 with coupons (wipes have bad coupons), used my $15 from yesterday, so I paid $16 out of pocket (tax was $3!!) and got back $20 in catalinas. In other words, today, Jewel paid me $4 to buy 6 packages of wipes. Which I would have bought anyway.

TARGET

Remember my $10 gift card that I got for my antibiotic purchase (which btw cost me $4)so I used it tonight.

I bought:

4 bottles of Suave shampoo (2 on sale for $.89, 2 for $1.77)
2 Johnsons Buddies Soaps ($.97 each)
1 20 ct Electrosol tabs ($3.25)
1 Eye Drop for Dovi ($10.49-ouch!-hidden cost of Dovi again...)

Coupons:
2 $.75/2 Suave shampoos
2 $1/1 Johnsons coupons
1 $2.50/1 Electrosol coupon
1 $1.50 Genteal coupon
$10 gift card

I paid $4 out of pocket!
Not bad considering that Dovi needs eye drops...

WALGREENS (now this is the awesome part...)

OK I transferred a prescription there because I wanted to take advantage of the $25 gift card offer with a transferred prescription. Do this. Often. I got $25 at CVS last month.

So I paid $10 for my prescription that I needed anyway and got $25 to spend. Yay.

First I bought:

2 Maalox tabs, on sale $2/10 and get a $5 catalina coupon toward your next purchase.
I had a $4/2 coupon. The lovely cashier was like "Ooh ooh I have a $3 coupon here! Let's see if it works". It did. I paid $3.23 on my gift card and got back $5.

Then I bought:

6 Quaker instant oatmeals (Shana's favorite breakfast) @ $1.99 each
6 Hunts tomato sauces @ $1/3
4 boxes of tissues @ $.89 each
1 Revlon eye shadow @4.99
1 Garnier shampoo @ $.99
2 Garnier gels (for Benjie's luscious locks) @ $.99 each
2 boxes of Splenda @ $2.99 each
4 Reeses's Whipps bars @ $1/2
1 Electrosol @ $3.49

I used the following coupons:

6 $1 Quaker
2 $1/3 Hunts
1 $1 Revlon
3 $1 Garnier
2 $3 Splenda
2 $1/2 Reeses Whipps
1 $2.50 Electrosol

Total paid on my gift card? $11.98. Of which I will get back $8.50 from Walgreens mail in rebates for the eye shadow and the Electrosol. So let's say I spent $3.50.

Then I went back again and bought

6 more Hunts
4 more Garnier shampoos
2 more Splendas

used same coupons, paid $1.32 on the gift card. That was less than tax!

So yes, Amy, mock me. But Shana is set for her oatmeal for the next few months. And it was free.

Speaking of which I need to find another Walgreens with the oatmeal in stock so I can get 3 boxes for $1 (I have 3 more $1 off coupons, and I got a catalina for another $2/3 boxes...)

And I still have $8 left on my gift card!

I'm a little pleased.

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.

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.

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.

Another Hidden Cost of Dovi

Tonight, my hubby is going to a dinner from the school he went to.

My sister in law's father is being honored at said dinner.

I am not going to said dinner.

Why? You may ask. It would make sense for you to go- (a) it was Benjie's school (high school and college) and (b) Rochie's father is being honored.

But I am not going because I have no one to take care of Dovi. It's one thing when I get a babysitter and have my mother in law run over for a few minutes to put Dovi to bed. You can't really ask a 16 year old high school girl to diaper an 11 year old, give him his meds and Pedialyte through his g-tube, ointment up his eyes, and hook him up to his oxygen and BiPap. Not gonna happen.

And since my in laws are going to the above mentioned dinner, I'm out of luck.

I feel terrible. How can I not be going?

The D strikes again. I'll be home foraging eating something nice and nutritious while Benjie is at the dinner.

I really need to find someone, anyone, to train to take care of Dovi, besides for me, Benjie, the nurse, and my mom and Benjie's parents. We used to have Katy our nanny, but she's retired from child care as far as I know. So we're back on our own.

But it's SO hard to find someone who might like to do this. It's not particularly fun or enjoyable. It's not glamorous. If I lived in New York I could snag any one of the Camp Simcha Special guys (or girls!) and beg and grovel ask one of them to help us out.

But here in Chicago there's not a large amount of CSS guys or girls. As in: there are none.

So we're on our own. What else is new?

On a side note, all my extremely furry boys are getting their hair cut at 4:45 this afternoon, and the barber is literally around the corner from the pizza store. Benjie is not home for dinner. In my mind that equals only option:

Who wants pizza for dinner?