A Year in a Post

Hey everyone!!

So....let's do a year in a post, shall we?

Since I posted last...in no specific order...

Dovi went to Camp Simcha Special with a new counselor (hi Dovid!)
Dovi went on Kids of Courage (hi Mickey, we missed you Raphi!)
Dovi started 8th grade (such a big boy...sniff sniff sniff)
Dovi had an impaction of food in his esophagus which resulted in a three day stay in the Children's Hospital PICU (that was fun, nothing like watching your son who is not supposed to be able to throw up, puke up french toast. Sorry, a little overshare here)
Dovi had fun at his friend Ben's Bar Mitzvah (another Camp/KOC friend)
Dovi's counselor Raphi got engaged (hi Adina, sorry we were so insane when we met you the first time, the kids can't wait for the big bash!)
Dovi's counselor Joe got engaged (Hi Rina, so lovely to meet you, sorry I will miss the wedding but Dovi and Benjie can't wait for their "man's weekend" as Dovi is calling it)
Dovi got even more cute. It's truly ridiculous how adorable he is. I will attach new videos of him. Some of his new lines include "BUSTED" and "What's upppppppp"

and in the non-Dovi related world...

I just finished my first semester of nursing school (who got an A? Mmhmmm)
My house has imploded due to said nursing school
No crafts have been made
Much laundry has been ignored
Much organization needs to be done
Many children need to be re-whipped (not literally of course) into shape
Benjie's car got hit twice, including this past week in the parking lot of work, when a woman hit the gas instead of the brake and hit not 1, not 2, not 3, not 4, not 5, but 6 parked cars, including Benjie's innocent little truck
Elisha, Shana, and Jakie started fourth grade. I give up. They are too old. I want to cry.
I went over a month this summer not seeing King Dovi :) while he was at Camp Simcha and KOC. It was insanely long. Too long. Cannot ever happen again.
My cell phone got stolen out of the library by a smelly enormous smoking harley riding biker dude. Benjie paid him $1 (yes, $1) to get it back.
Shana learned how to bake. I never will again. We had chocolate peanut butter cup amazingness this Shabbos that all I had to do for was turn on the stove. Divine.

My, I just reread this. Quite a stream of consciousness.

So....I have 5 weeks off before semester two. I will try to say hi to y'all more often then, hey, once every 10 months. Let me know which of the above events need further clarification.

Missed you guys!

An open letter to "the counselors"

Hi guys. How are you all doing? I know. It's been a terrible three weeks for you guys. It's madness-four campers lost in under three weeks? If I, as a parent, who didn't even know them, is reeling, I cannot imagine what you guys are going through.

I know that there was another letter like this written to you guys, but I think the more you hear it, the better.

Do you have any idea? Any at all? How you have changed not only Dovi's life, but our entire family's? FD is a terrible, fatal, insidious disease. FD takes over not only the body of the affected child, but the heart and soul of the parents. I would literally do anything, anything at all in the entire world to take a small amount of Dovi's daily suffering. But Dovi always has a smile on his face. He has joy and simchas hachaim. And I truly, in my heart of hearts, believe that a large amount of that joy comes directly from you.

You have given Dovi back his childhood and us back our lives. We have amazing help and support from our family and friends, but this is just different. When Dovi goes away with you, whether to camp or on a trip, we know that not only is Dovi safe, he will have an amazing time and most probably not want to come home. You've taught him to scream "FD Drools" and to respond "I have F......D!" like it's the best thing in the world. You've given him pride in who he is and helped him cultivate his most meaningful relationships.

You come and visit us in far away Chicago and are infinitely patient with our other kids. You make them feel like a million bucks and like they are special-look at all these guys who love them! Who play with them! They are special because of Dovi's FD.

I said at Dovi's Bar Mitzvah that because of Dovi having FD we have met people that we would have never met. I was talking mostly about you guys and the life and joy that you have brought into our lives.

You have changed our lives. You have brought joy and brightness where there is darkness. You cannot imagine the impact that each and every one of you have on us.

I know it's hard. I cannot wait to hand Dovi off tomorrow and get a break from the endless meds, treatments, and feedings. I do it with love because Dovi is my son. You do it with love by choice. This is how you choose to spend your vacations, your free time, and your days. It truly boggles my mind. When I was you age, well when I was all your age Dovi was 3, so let's backtrack to when I was in high school, I was spending my days at the mall and chatting on the phone. What you do by choice has changed our lives.

I know that sometimes it becomes unbearable, when a child is lost. And you guys have been hit four times now in three weeks. It's hard, so hard. I cannot imagine dealing with this at your age. It must be tempting sometimes to walk away, to protect yourselves from the pain. I would. It's unfathomable. But know, please, in your heart of hearts know, that what you have done for Dovi, for our family, for all the kids and their families is the most wonderful gift you can give a suffering family.

Our appreciation and respect for all of you is boundless. Thank you from the bottom of our hearts.

I couldn't pass this up.

I know I haven't blogged in a while, but I had to share this.



There's an article here.

Dovi leaves on Wednesday.

Now where do I get one of those snazzy Camp Simcha car window flags?

Off to New York!

Tomorrow night, Dovi and I are off to New York...

he's going to a Camp Simcha Special Reunion-up at camp! He's so excited.

So am I. For him. But frankly I could do without an unnecessary trip to New York. Don't get me wrong, I'm very excited to be seeing my brothers/sisters in law/nieces/nephew. (sister? brother in law? nephews? Rebecca, will I be seeing you guys? Not sure how we'd pull that off)

But I really have zero, zip, zilch, NADA interest in the whole packing/shelpping/unpacking/repacking/more shlepping rigmarole that is entailed to transport Dovi anywhere.

Slight panic yesterday when we thought there might be an issue getting Dovi's portable oxygen concentrator, the Sequal Eclipse, the love of my life. I wish beyond belief that I had the $4,000 laying around to buy one of those suckers just to have. It's so difficult every time we travel to order it from home health. It's never simple and always a headache. At least it arrived today!

Basically, I'm flying Dovi to New York tomorrow night, we're sleeping at my brother's in New Jersey, and then I'm driving him to the bus up to camp on Friday morning. Chai Lifeline will bring him to the airport to me on Sunday.

Which means that I am my-child-free from Friday morning until Sunday night! Don't worry, it's not going to be so exciting. I'm planning on using that time to write my Anatomy/Physiology paper. Yes, I have to write a paper for A/P. Let's not even go there. I printed all my sources (guess what my topic is...) and will bring my laptop and hopefully pound out 8 pages on Sunday. It shouldn't be too hard. I...ahem...know the topic pretty well.

I'm sure I'll squeeeeeze a little trip to Daffy's in there (how's about Saturday night, Tams?), but all in all it will be a rather bizarre weekend for me.

But an awesome one for Dovi!

So it's all worth it.

Friday...Counselors in the Trunk...Shabbos...It's a Party!

Friday morning, we got up bright and early to swim some more.

Yup, in the pool again at about 8:30 am!

We swam for a bit and then checked out of hotel #1 in preparation for checking in to hotel #2 for Shabbos with Team Lifeline.

When we got to the hotel, it was time for an epic hug-a-thon as Dovi reunited with his BFF Ezra. I've blogged about Ezra in the past. Ezra is Dovi's best friend from Camp Simcha Special. They are 5 weeks apart in age and both have FD. And they seem to be soul mates.

Ezra's dad ran on Team Lifeline as well, except that he ran the full marathon. Fast. In two different shoes. Not on purpose. Yikes.

It was a little insane as we pulled up at the hotel to a crowd of about 10 counselors singing and banging on our van. The only small issue with that is that Dovi has a tiny bit of PTSD from the first year he came to camp...he is terrified of "arrivals"-when you arrive at Camp Simcha Special, you are surrounded by throngs of singing, cheering counselors. Dovi is not a fan. So the guys were banging on the van and screaming...and Dovi was cowering in fear in the van. No worries, once he saw Ezra, all was well.



We dumped our stuff in our room and headed out for lunch with about 10 counselors, 2 of whom rode in the trunk of our van to the pizza store...great example for the kids, huh?

We waited in line at the pizza store for a lovely 40 minutes...gotta love Miami Beach in January!

We finally ate lunch. My kids are like puppies all over the counselors, who were all lovely sports about it. Shana seems to have an itty bitty crush on Joe (see her putting bunny ears on him? She's obsessed with bunny ears. Puts them on everyone in every picture. Drives me batty)

Then we went back to the hotel and (I know this will shock you) swam again, this time with the guys. Sorry, no pictures.

Oh yes, my awesome parking deal. Parking at the hotel was $35 A DAY. Yikes. Well, next door to the hotel (literally) was a public parking lot, which would be difficult/impossible on Shabbos because we wouldn't be able to pay the meters. Until we (and Moishe Deutsch, a clever counselor) remembered that we have a handicapped tag for Dovi (which miracle of miracles, we remembered to bring), so we didn't have to pay the meters. Yay! Free parking! Would you expect any less from me??

Then it was time for Shabbos. Of course, no pictures. Would have been nice if I took a family picture before Shabbos, but being as we were in the pool until about 25 minutes before candle lighting and had to shower 6 people in one shower...there was no time for that.

Long and short: Shabbos meals with the marathon people, Shalos Seudos by the pool with the guys. We fed them. They called me mom and sang songs of appreciation. I'm not sure what more could be said.

Saturday night was the pre-race pasta party.
Sorry, this is the only picture I have. Not very exciting.

A parent spoke really beautifully about Chai Lifeline and how the organization has impacted her family. I also met a couple (hi Shani and Chaim!) who read my blog. I felt all giddy and pseudo-celebrity-ish :)

Then Dovi tried out his jogging wheelchair (thanks Galiah!), got the tires all pumped up,
and went for a jog around the pool deck at about 11 pm. Yes, all my kids were up until after 11 pm for 4 out of the 6 nights we were on vacation.

We all went to bed (not saying anyone slept very much) by about 11:30, while the counselors, decided that, in preparation for a half marathon at 6am, a pizza run at midnight was necessary. Ahh to be young and stupid fun.

Marathon day coming up!

Airplane Etiquette

Yesterday I had a 7 am flight to catch to fly to Newark, sit for 3 hours, tearfully reunite with Dovi, and then turn around and fly home. I actually put out some ground meat to defrost in the morning and was home to make tacos for dinner.

Pretty cool.

But I digress. My flight was very early. I am not a morning person. I wish that I was a morning person, like my good friend Rebecca, who is up and in her kitchen at like 6 am. It's all I can do to drab myself out of bed and not bark at my kids in the morning. Because Elisha, well that little stinker evidently needs feeding and watering on a fairly regular basis and is often eating cereal at 6:!5 am while watching SportsCenter to see what WebGems he missed the day before. Yes, boys, I know all about SportsCenter. A hip, Emmy Award winning snapshot of the day in sports. (free 6 pack of Dr. Pepper who knows that I'm quoting) I'm married to a sports freak. Evenings generally find Benjie watching ESPN and me surfing the net or reading.

But I really digress.

My flight was really early. I was looking forward to getting on the flight and going to sleep for the next hour and a half.

What I ended up doing instead was contorting myself in my seat to avoid the man who was adjacent to me.

No fears. He wasn't some sicko who was trying to molest me. He was merely sound asleep and his legs kept relaxing. Onto mine.

At one point, his legs were taking up his leg space and over half of mine. I kept scooting. And fuming.

I actually shoved my purse over to push his feet. When that didn't work, I used my purse to shove his legs. Nothing worked. This man was so passed out that my space = his space.

I was so not happy. I considered calling a flight attendent to help me. But then I felt bad. He wasn't doing this on purpose. He probably would've been horrified if he woke up and saw what he was doing.

So I suffered. Finally, by some miracle, he shifted positions and I was able to sleep for the last half hour of the flight.

But ooh boy, was I irritated. But I kept thinking. At least I wasn't attacked by a large dog like Shosh.

But seriously, folks. There must be some guidebook for proper airline sleeping etiquette. Perhaps the airlines should hand out little leg protectors? Some way to make a little divider between seats? I wanted to CRY.

But I survived and got my boy. Who is possibly the cutest boy ever. Whose tummy got a little bigger and more rotund by a steady diet of french fries, Raphi. Hee hee. He's happy to be home. He's delicious.

My house is trashed. Must get organized. Cannot handle mess. If you walk in my house, it doesn't look so bad. But then you look closer. It's the perimeter. Around the entire perimeter of the interior of my house is a thick layer of crap. Stuff that must be put away. That I am too tired to deal with. I must throw out half my possessions.

And one more cool thing? As we landed home in Chicago, I noticed that we were landing from over Lake Michigan-a flight pattern that my kids often comment on because the landing planes go directly over our neighborhood. So I looked down and was able to identify our neighborhood! I saw so many landmarks that I was able to point out to Dovi. It was super cool.

So we're home.

Only 18 days until Dovi goes to Disney. Oy.

An Average Day in Camp Simcha Special

By: Raphi Bollag, Yoeli Zlotnick and Nachman Kalko (all single)

5:45 Dovi wakes Raphi up 15 minutes before the alarm

6:06 Fell back asleep

7:15 Dovi wakes up Raphi to tell him that bunkmate Eli has woken up, Raphi grunts at Dovi and they go back to sleep

8:25 Dovi wakes up (Raphi is Zzzzz...)

8:52 Dovi, Ezra and Ben play war, Dovi is a hustler and seems to enjoy leafing through his cards looking for those precious aces

9:11 Dovi and Ezra hug#1

9:25 Raphi decides to get out of bed

9:30 Raphi davens (prays) with minyan on porch while Dovi changes/does nebbies

10:00 Breakfast: counselors eat an assortment of pancakes, french toast, eggs, cereal, fruit, vegetables, hash browns, bread (with various spreads), orange juice, hot cocoa, coffee, muffins, and a variety of cheeses....Campers eat formula (G-tubes yeah!!!)

10:20 Raffle at breakfast, grand prize is an Apple Nano

10:29 Dovi and Ezra hug#16

10:45 Learning groups with Rabbi Wiggles (kids love it)!!! (Raphi showers, in bunkhouse)

11:30 First activity: Usually a surprise show such as the Jebali Acrobats (they were wearing umm interesting costumes), trampoline guys, improv show, drum guys, talent show, carnival, game show, helicopter etc.

1:00 Lunch: Dovi has bread and orders a special order of...guess it...yep your'e right...FRENCH FRIES!!! oh and he might nibble on the food of the day that's on the table and/or buffet :-)

1:03 Benji the photographer takes some action photos of Dovi, Ben and Ezra (Benji wanted to be mentioned in the blog...)

1:33 Dovi runs to Asher to give elbows

1:40 Camp Simcha Special mayham begins in the middle of the dining room, Dovi and Ezra pull moves from the Disco era on stage while holding on to a broken microphone

1:53 Dovi and Ezra hug #28

2:00 Swimming in pool [aka: push counselors in the pool and start a water fight with ice cold Dasani water (yes in Camp Simcha Special we need to find bottled water in order to have a water fight in a pool filled with water...)] OR boating at the lake

3:15 - 4:30 Workshops: Candle making, woodworking, mosaics, pottery, arts and crafts, leather, darkroom/photgraphy, fishing and rocketry

3:59 Dovi and Ezra hug #43

4:30-5:45 Workshops or possibly another surprise show

5:45-6:00 Dovi ponders the deep philosophies of life while playing with his num num

6:00 Supper: Once again Dovi eats bread and.....yep...FRENCH FRIES, and some table/buffet food

6:07 Dovi and Ezra hug #61

6:19 Dovi runs to Moses (his rotator) to give elbows

7:15 - 8:45 Night activity: usually a special activity

7:33 Check out DJ in his Superman costume, yep ladies he's still single!!! (DJ we call this revenge, oh and we are sorry you're no longer in our bunk...)



8:45 go back to bunk to do nebbies, set up feeding and pajamas

9:20 Bunk 13 pajama party to numa numa, crazy frog and other such camp songs

9:26 Dovi and Ezra hug #104

9:35 Sleep time (campers)

12:00 Sleep time (counselors)

All times are extremely flexible :-)

Bunk 13 Bargain Tips:

Sara is not the only one who is a bargain hunter, we at Camp Simcha Special also enjoy clipping coupons and organizing them in baseball albums while dreaming of the next big sale! Just check out our latest soda haul that we stored in our very own scary slasher basement.


Yes, that is 1,243 bottles of water, 482 bottles of vitamin water, and 2,082 cans of soda all for.........FREE. No, sorry ladies you can't have this, it was a limited time offer and involved many coupons, and Camp Simcha Special is no longer accepting online coupons. Beat that Sara!!

OK boys, I must admit that I am feeling very jealous of those large pallets of beverages. Have no fear...I have about 450 bottles of Dr. Pepper of my own to keep me warm at night :) Oh and about 400 million bottles of shampoo. No worries. When the bomb hits, we at Casa P will be clean and well hydrated.

One more note everyone...this post will have to be for today and tomorrow-I have a 7 am flight to go get Mr D from camp! I'll take lots of pics of my little love tomorrow. Let's all pray for on time flights and non explosive oxygen tanks.

And btw Raphi, I know CSS no longer takes online coupons-but will they take catalinas? (that's for you, Shosh!)

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...

I

MUST

WIN.

Just sayin'.

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.
  

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?

12/7/07

11/29/07

11/1/07

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?

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!

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.

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!

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.

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.

To....


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.

Ahem.

I don't think so!

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.

So. It took a while, and some harassment...

But I have finally gotten pictures from Dovi's big party weekend, AKA the Chai Lifeline Inaugural Friends N Family Weekend here in Chicago.

A very generous family that happened to be out of town opened their lovely home for 6 Camp Simcha insane lunatics counselors, they were hosted for meals, and went swimming on Saturday night.

It was slightly madness but a great time was had by all.

First, the insane lunatics guys arrived on Thursday night. For whatever reason, it took them over an hour at

the rental car place and they didn't get to me until 1am.

That's when the 1 am hot dog event occurred. Unfortunately I didn't get any pictures because they inhaled the food too quickly

Friday was spent carrying mattresses down the street and buying stuff stealing stuff from my basement stockpile that they needed, and then the fun weekend began



Saturday night, another very generous family opened their home and swimming pool to the guys.


They ate barbecue at 11pm (yes, Dovi ate a hamburger and 1/2 a hotdog at 11:00 at night)

Sunday, was the annual Chai Lifeline Family Day at Great America.

When you go to Great America with Camp Simcha Counselors, be prepared for the unexpected.

Water fights will occur


Crazy pictures will be taken.


Awww...quiet moments might occur


Roller coasters will be ridden


Karaoke stages will be found...

Dovi's opinion of THAT




We all had a blast!


Sorry about the off lighting-it was really sunny!

And then, after from what I've been told was a mad dash to the airport, the insane lunatics counselors headed back to New York.


Dovi can't wait to see you all at camp in 3 weeks!