Friday, July 31, 2009

I just hung up with Dovi

And let me say that he is seriously the cutest child in the entire universe.

Not that I'm prejudiced AT ALL.

But seriously. He is delicious!

I cannot wait to see him on Monday. This year, I feel like camp went by SO quickly. And half the mail I've sent him hasn't gotten there. Including the meds that I mailed ON MONDAY. So they need to rustle up some Pulmicort in the infirmary.

I learned today that:

  • Dovi's team lost in color war. He says they cheated.
  • I believe that this is the first year that he's actually lost
  • Dovi really, really, REALLY does not like rectal temperatures. I'm sure you wanted to hear that.
  • He did not have said fever. Phew.
  • Dovi and friends did the Bunk 13 dance in the talent show.
  • I've been told that I have to wait to see what that is.
  • Raphi and co. are hard at work on the guest post. Hopefully we'll get it up over the weekend.
  • I miss him SO much and cannot wait to see him on Monday!!!!

Today I ran 3.5 miles! I'm rather proud.

Because this year I need to train for TEAM LIFELINE hardcore.

Ask me why.

OK I'll tell you.

Because Benjie's running too.

And I need to beat him.

I must finish that half marathon AT LEAST 10 minutes before Benjie.

It doesn't help me that Benjie's 6 inches taller than me and thus has a 6 inch longer stride than me...




Just sayin'.

Wednesday, July 29, 2009

Benjie just reminded me

that I forgot to post the pics from Dovi's arrival at camp.

So here they are.

And to answer the inevitable questions:

  • yes. there is a grown man wearing a Superman costume.
  • yes. Dovi and Ezra look alike.
  • yes. Dovi, Ben, and Ezra were THRILLED to see each other.
  • no. Dovi did not successfully do arrivals this year. He screamed and yelled and jumped into Raphi's arms.
  • yes. Raphi is wearing odd orange jeans.
  • yes. Dovi looks very, very happy. Because he is.
  • yes. I Jewel paid me $80 to remove 81 six packs of Dr. Pepper from the store today purchased 81 six packs of Dr. Pepper products today.
  • no. you cannot do it too. The deal was today only and involved much coupon usage.
  • yes. I am shameless and had to discuss my couponing in a post about Camp Simcha and Dovi. It's my blog. I can do whatever I want.

Tuesday, July 28, 2009

Every Year it Amazes Me

How much LESS I have to do when Dovi's at camp.

When Dovi's at camp:

"Kids! Go upstairs and get dressed for camp!"

"Go pack your bags!"

"Go upstairs and take a shower!"

"Brush your teeth and we'll be up in 5 minutes for bedtime"

When Dovi's at home:

"Dovi, come here sweetie so we can do your nebbie. Then can you please take off your pj shirt and try and get on your tzitzis and tshirt and I'll help you with your shorts, socks,and shoes after I've made your tubie"

"Shan, can you please pack up Dovi's camp bag for him-all his stuff is on the floor next to his bag-while I hook up his breakfast? Thanks!"

"Elisha-can you please run upstairs and get me a new 10 cc syringe? Thanks honey!" (yes. they know what 10 cc syringes are)

"Jakie-please leave the shower on when you're done so I can take Dovi up and shower him"

"All six year olds go up and get ready for bed. Dovi, stay down here for your nebbies-meds-diapers-eye stuff please"


I was chatting with someone on Sunday, and I was saying that I really don't have that much to do this week. Well yes, I do have to feed my family and keep my house somewhat in order, but there really isn't all that much that I need to DO.

Well, I do want to paint my dining room chairs and I need to make my next grocery shopping plan of attack (it's going to be epic, I promise), but must get done or my child will not be alive? Not so much.

And it's mighty relaxing, I must say.

And for that I must give an enormous, gigantic thank you to Chai Lifeline and Camp Simcha Special for this little break.

But he is rather delicious and I can't wait till he comes home!

(hey Raphi-one quick question-who is D's rotator? This is my easiest way to talk to you :) And don't forget that you and Yoeli need to finish your GUEST POST!)

Monday, July 27, 2009

I got a bill.

For Dovi's Chicago Orthopedist.

You haven't heard me mention him recently, right?

That's because we saw him last in 2007.

Yes, 2007.

I got a bill on Friday for $516.

Dates of service?




Wait! That was almost 2008.

So it's ok.

Ummm no it most certainly is not ok.

If they THINK for any moment that they are getting a blessed penny out of me, they are sorely mistaken.

This should be entertaining.

Oh and on a side note?

Dovi's having lots of fun at camp thankyouverymuch.

Hmmm. I wonder what concert this was.

Nice hat, Nachman. I'll save it for your shidduch profile.

Don't you feel good knowing that the boys are in the front seat and Dovi and Ezra are driving the gem car? Good times.

Shocking! Dovi's eating french fries!

A big thanks to our trusty Raphi for hooking us up with pictures.

And no, I didn't put the bathroom picture up. We have some pride here, y'know?

Friday, July 24, 2009



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?


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!

OK I never share stuff like this...

But seriously.

If you're having a bad day, watch this.

You'll be happy.

I saw part of it on the Today Show this morning and found the rest of it on YouTube.


Working on my explosive post, I promise.

Thursday, July 23, 2009

I am totally disfunctionally tired.

but wanted to tell you all that Dovi successfully arrived at camp.

I successfully arrived home.

I've been up since 3:30 am Chicago time.

I'm too tired to due justice to my AWESOME story from my trip home.

Suffice it to say that it includes dynamite.

Will tell more tomorrow.

Wednesday, July 22, 2009

Say a Little Prayer...

So today we're leaving for Camp Simcha Special.

Please, everyone, say a prayer for us.

Swine Flu, while the epidemic is waning, is still very present, especially in the camps in New York.

Swine Flu, or H1N1, is a very, very bad thing for the FD population. It has not been a good summer in the FD community due to H1N1. It's been a very sad summer.

We're very nervous, but taking a leap and sending Dovi to camp.

We've decided that much of Dovi's physical health hinges on his emotional well being, and his emotional well being would take a huge hit by missing camp.

So Dovi's going to camp.

To quote a very wise friend of mine, we're doing the right thing for Dovi but the wrong thing for us as his parents.

He'll be there for 12 days.

Please, please, keep him in mind that he should stay healthy while at camp.

If you're Jewish, his Hebrew name is Chaim Dov ben Sorah Yehudis.
If you're not Jewish, please pray that Dovi P remains healthy at Camp.

Oy. It's going to be a long 12 days.

Tuesday, July 21, 2009

On Our Way!

I'm setting this post to autopublish...

We're on our way to Camp Simcha Special!

Well we're on our way to New York to see Dr. Feldman.

Wednesday we're on our way to Camp Simcha Special!

Woo hoo!

Monday, July 20, 2009


I'm probably going to bang on the keyboard while I'm writing this.

I saw something yesterday that made me sick to my stomach.

I saw a perfectly able bodied man with his wife and child in the car park his car in a handicapped space at Target. Then he left his wife and child in the car as he ran in to the store to make a purchase.


The car did not have handicapped plates, or a handicapped tag. It wasn't like he had the tags for someone else and just used those tags to park when he really shouldn't have. I've seen that-I know someone who has the tags for a family member but often parks in handicapped even without that family member present.

Oh no. This was a perfectly able bodied man with a perfectly able bodied family.

He simply didn't want to bother to look for parking.

Not only did he block off one space, but he slanted halfway into the yellow painted space for the adjacent handicapped space that was for wheelchair lifts.

So he blocked two spaces.

Two handicapped spaces on a busy Sunday afternoon at Target were now blocked because this man was too darned lazy to go find a parking space.

I called a friend, all enraged.

"How could this man do this? I want to call the police! How could he be so insensitive to people who NEED the handicapped space? What if I'd had Dovi with me and his wheelchair?"

She responded:

"This man wasn't even thinking that way. He didn't think one moment about the handicapped person who would not be able to park there. What he was actually thinking was that he would not get a ticket because if a police man came, his wife, who was waiting in the car with their child, could move the car"

I realized that she was right.

I seriously have no COMPREHENSION how people can do that.

How on earth can you be so insensitive, so self centered, so ENTITLED that you will do such a thing?

What do you think? That the person who drives that handicapped van whose space you are blocking will be able to put down their lift, get out of their van in their wheelchair, and be able to ASK YOU to please move your car?

There is a reason there are handicapped spaces. And SO WHAT that there are 5 empty handicapped spaces in front of Target and the lot is pretty full and you'd have to walk from the back of the lot?

I'm pretty darned sure that that handicapped driver whose space you took would be thrilled to be able to park in the back of the lot and walk to the store.

Friday, July 17, 2009

Have a Good Shabbos, Everyone....

The sun is going down, its shining through the trees,

Another week's gone by, become a memory,

So throw away your hammer, there's nothing left to do,

Go on home and find the gift that's waiting there for you.

Oh, it's time to say Good Shabbos, 'cause all your work is done,

Gonna spend the day together with the Holy One,

Say a special blessing on a cup that's filled with wine,

Man and his creator it's a very special sign.

Your candles will be burning, they'll fill your home with light,

Singing sings of Shabbos, well into the night,

So throw away your hammer, there's nothing left to do,

Go on home and find the gift that's waiting there for you.

Oh, its time to say Good Shabbos, 'cause all your work is done,

Gonna spend the day together with the Holy One,

Say a special blessing on a cup that's filled with wine,

Man and his creator it's a very special sign.

You can spend time with your family, You'll study and you'll pray,

Why not wait till after Shabbos, all those nails wont run away,

So throw away your hammer, there's nothing left to do,

Go on home and find the gift that's waiting there for you.

Oh, its time to say Good Shabbos, 'cause all your work is done,

Gonna spend the day together with the Holy One,

Say a special blessing on a cup that's filled with wine,

Man and his creator its a very, very, very, very, very, very, very, very, very, very special sign.

Song Credit: It's Time to Say Good Shabbos, Abie Rotenberg/Journeys

Thursday, July 16, 2009

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.

Wednesday, July 15, 2009


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.


Sara P

Tuesday, July 14, 2009

Idiocy in Insurance

I seriously couldn't even make this up.

So you know that Dovi's Eclipse

(only the coolest oxygen concentrator ever) errored on Friday night and we had to get an emergency liquid

fill on Saturday morning, and they took the Sequal to figure out the problem.

So I called the Home Health (furthermore HH-it's too long to write otherwise) place yesterday ot arrange to get a new one delivered before we leave for Camp Simcha Special and Dr. Feldman next week.

Ummm sorry. No.

You will never believe this.

It seems that, according to HH:

  • Insurance companies don't cover travel oxygen services (the Sequal)
  • Up until January 2009, HH offered travel oxygen as a service to its oxygen dependent clients
  • This service was discontinued in January 2009 as a cost cutting measure
  • We got our Sequal prior to January 2009 and were supposed to return it when we returned from our trip
  • We didn't know that
  • We've had the Sequal at no cost for the past 8 or 9 months
  • We could've kept it forever for free
  • But once we returned it, we no longer get it for free
  • We now need to get prior authorization from our insurance to cover it. But GET THIS
  • Since Dovi is oxygen dependent, (this is according to HH guy) our insurance WILL cover back up oxygen a concentrator, you know, so my son won't die overnight if the liquid fails for some reason
  • But they WILL NOT cover a Sequal Eclipse concentrator, a concentrator that costs the same as the big momma pictured above.
  • Why is this? Because they will not cover TRAVEL oxygen. And the Sequal is a travel concentrator.
  • Even though we used it as our primary concentrator for 9 months.
Try that on for size.

And the idiocy? Insurance has always covered travel oxygen for me. Four different insurance policies over the past 11 1/2 years have always covered travel oxygen.

Gloves are off...let the fight begin.

Oh yeah, we leave NEXT TUESDAY for a doctor appointment TUESDAY AFTERNOON before Camp Simcha Special. It's too late to order airline oxygen

So. Let the fun begin.

You know I'll win. I always do.

But seriously? Does this make ANY SENSE whatsoever?

Monday, July 13, 2009

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.


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.

Friday, July 10, 2009

A Bonus Post/Plea for Help

When Amythephotographer was here a few weeks back (speaking of which, Amykins, the natives are restless and harassing me for their pictures. Get right on that) she watched Dovi's Day in the Life video from last summer at Camp Simcha Special.

In it is a 30 second spot of Dovi dancing in the kitchen which, to quote Amy, is the cutest thing she's ever seen.

It is absolutely HYSTERICAL.

I want to share it all with you.

But I have not a clue how to cut it? splice it? whatever the heck to do with it (it's a DVD) so I can share those 30 seconds with all of you. I can't put the whole 45 minute video up because I'm sure there are some non-photo released kids in the background, and that's just not right.

So anyone who knows how to do such a thing and can tell me how, please, please, please leave a comment.

I promise you, it's SO worth it.

Don't Mess With Me.

I will call your boss on you.

This morning, I was driving to work. Correction. I was crawling along the Kennedy to work, trying to avoid the maniac in the gladiola farm delivery truck that was terrorizing everyone on the road.

I'm not joking. This guy was literally drifting his large delivery truck from lane to lane across traffic. He was not looking. He was not signaling. I was chatty chatting with my mom (don't worry, I was using hands free), and suddenly I noticed that this truck was reallllly close to the yellow line. So I gently braked. He drifted into my lane without a signal.

Then he did it again-to another minivan a lane over (hey! It was a Sienna just like mine. Maybe he didn't like carpool moms).

Then he did it AGAIN to me-twice-drifted over.

So what did I do?

I hung up with my mom and called the number of the gladiola farm on the back of the truck.


I reported that sucker for bad driving.

Next thing you know, I'll have a flashing light on the top of my van and will be making citizen's arrests.

Have a great weekend everyone. And don't forget to signal before you switch lanes...especially if you're driving in Chicago and you see a grey Sienna that is missing a hubcap behind you on the road. On a side note, do you want to know how much my dealer wanted for one freaking hubcap? $75!!!! Ummm no. I'll drive my white trash van with a missing hubcap and keep my $75, thankyouverymuch.

Thursday, July 9, 2009

In which Jakie, Elisha, and Shana wish just a tiny bit that they have FD...

First of all, I apologize for not posting yesterday. I was busy going to Kmart to get more free stuff twice in one day .

As you all know, every summer, Dovi goes to Camp Simcha Special, only the most fun place in the entire world, where every kid is the king of the castle and the coolest kid on earth. He swims, he dances, he pushes Raphi in the pool, and has pajama parties with Ben and Ezra.

It's only the biggest party ever.

He's going in 2 1/2 weeks and cannot wait.

But this summer, another opportunity has come our way. And the way I see it, Dovi's got a really hard life, and the more fun things he can do, the better.

Another group has opened-Kids of Courage-and they were planning on a 1 week camp at the end of August. However, the medical director is concerned about Swine Flu. Quite a few medical camps had swine flu issues this summer and they don't want to have to disappoint.

So, instead of a traditional camp, this year, KOC has decided on a trip.


Yup, Dovi's going to Disney!

Many of you know that we did an amazing, once in a lifetime trip to Disney with Make a Wish in 2006.

Dovi adored it.

As did Elisha, Shana, and Jakie. They are just a teeny, tiny bit jealous. I offered the staff of KOC that they should be counselors-heck, they know about as much about nebulizers, feeding pumps, and oxygen as the best of them.

The staff didn't seem to go for it.

So, just this once, I think that Elisha, Shana, and Jakie think that having FD wouldn't be too bad of an idea.


I don't think so!

Tuesday, July 7, 2009

My Blog Totally Has a Split Personality.

Monday? Dovi's scary daily schedule-and I didn't even include all his therapies.

Tuesday? My crazy couponing at Kmart.

It's double coupon days at KMart, folks!

And for $4.91+tax, I got all that you see below:

4 4 packs toilet paper
4 3 packs paper towels
1 hair gel
2 (ahem, sorry guys) feminine things
2 boxes pasta
2 Pantene shampoos
2 Dove deodorants
3 St. Ives Apricot Wash
1 Pert Plus for Men
3 Renuzit air fresheners
3 packages floss

And I have a "try me free" mail in rebate for the Pert which cost 3.89, so I will end up, once I get my rebate, at $1.02 + tax (which was about $3.50)

Not bad.

Just so you know, many, many of these items were bought with internet printable coupons, so if KMart is doubling by you, and you are interested, leave me a comment and I'd be happy to give you links.

I'm going back tomorrow. I was going to go today after my dentist appointment, but he filled two cavities and my entire mouth is numb and swollen and I look like a lunatic.

Monday, July 6, 2009

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.