Monday, January 28, 2008

Sara runs Miami

In 2:37:15!!!
Yay for me-1 minute slower than last year-had I realized THAT I would've pushed a little bit through the end. Such is life. But considering that I hardly trained compared to last year, not bad at all. Once the pics come up I'll post one.

Tuesday, January 22, 2008

Good News

Dovi's leg is healing nicely-not displaced
So now we don't need to "pop it in place"-thank you Dr. Feldman :)
BTW I think you all will appreciate this afternoon of extreme errands:
3pm-leave work
3:25 pm-exit highway
3:25-4:05 pm-bank, Kol Touhy, drop off a check, come home, change laundry, make dinner (ground beef stew)
4:05-Get Dovi off the bus
4:06-head off to x-ray
4:50-return home
5:15-kids dinner
6:45-All 4 chilling with Blues Clues while Dovi is nebbing-Benjie needs to bathe Dovi b/c I can't carry him up the stairs-he weighs 65 pounds and I simply cannot do it!
So that's that.
Let's hear it for non-displaced fractures!

Why is my life so complicated?

THIS is the nonsense I type up for the babysitter:

How to work things


Well there are 3 options-1 “the perfect world” and 2 “reality”

Option 1:

Use only the Comcast remote. Press “All Power” and both the cable box (top component box) and tv should turn on. The tv takes 15-20 seconds to warm itself up-give it a second-you’ll hear a beep sound.

Option 2:

Use the tv remote (Samsung) to turn on the tv and the Comcast remote to turn on the cable box. It will still take 15-20 seconds for the tv to turn on.

Option 3:

Press the tv’s power button and the cable box’s power button. Then just use the cable remote to change channels etc.

Preferred kid channels:

56 Playhouse Disney (changes to preteen shows at 5pm)

120 Noggin-Preschool on TV 24/7 (yee-ha)

127 Sprout-PBS 24/7


Jan 25
Scattered Showers
68°/61° 30%
Jan 26
Partly Cloudy
74°/63° 10%
Jan 27
Partly Cloudy
76°/66° 10%

Jan 25
25°/24° 20%
Jan 26
Mostly Sunny
36°/30° 20%
Jan 27
Partly Cloudy
36°/30° 20%

Well even with the cold front hitting Miami on Friday, I think we all know which is the preferable forecast...Miami Marathon, here I come!

Thursday, January 17, 2008

A little preview of my speech for the Team Lifeline Marathon

Hi everyone. My name is Sara P, and I’m proud to say that this is my second year running the half marathon with Team Lifeline. We all have our own reasons for taking on the challenge of running a full or half marathon. For me, the reason was very near and dear to my heart. 10 years ago my husband Benjie and I had our first son named Dovi. He was diagnosed at 2 months of age with Familial Dysautonomia, one of the Jewish genetic diseases. I have very hazy memories of the first year of Dovi’s life. I remember a mountain of medical papers and bills on our coffee table. I remember eating Cranberry Almond Crunch cereal for dinner almost every night. I remember yelling at my husband at inopportune times. And I remember Chai Lifeline. I remember Rivka Ginsparg, then the social worker for Chai Lifeline, sitting in my living room, asking me “What can we do for you? How can we help?” And help Chai Lifeline did. I remember the first Chai Lifeline Chanukah party we went to-we literally needed a trash bag to haul home the 8 gifts for Dovi. We had respite workers every week, one to take Dovi to therapy and give me a break from our grueling 13 session per week therapy schedule, and someone to play with Dovi one afternoon per week so I could run an errand or two or just read a book for an hour.

One of the biggest gifts that Chai Lifeline gave me was when Dovi was about two years old. I was invited to join a Chai Line-a monthly conference call for mothers struggling with a child with a chronic illness. What came from that call was both a feeling of “I’m not alone” and our desire not to lose touch. From that phone group of about 10 moms 8 years ago we formed an online list group that now has over 150 members from all walks of life and all types of childhood illness. I’m proud to say that all those original moms are still close today.

When Dovi was 6, Moshe Turk, then the director of CL Midwest, said to me “How about sending Dovi to Camp Simcha Special in the summer?” I said “He’s my baby! He’s only six years old! He hardly talks at all-and he’s so medically involved-How can I do that?” And Moshe said “He’s not the youngest at camp, we’ll find a counselor who is good with non verbal children, and I promise you the camp staff can handle him. You need a break.” I still recall sitting for five hours on the phone with another mother (that I’d met on the Chai Line) as we were both packing our boys the night before their first year at camp. We were beside ourselves with worry-how could we be doing this? But we trusted in CL and sent the boys to camp.

Now you’ve all heard that Camp Simcha is “a little slice of heaven on earth” Now that sounds very sweet and lovely. But here’s the reality-I’ve been to camp every year for the past 4 years Dovi’s gone. CSS literally is. Heaven. On. Earth. When Dovi goes to camp he is no longer that kid with the disease-wait it’s a Jewish one? Are you Sure? I’ve never heard of it? That no one can pronounce. He is just one of the boys. Only at CSS could a skit in the talent show be Dovi and his buddy Ezra, drinking “beer”-water from an empty beer bottle-through their gastrostomy tubes. Dovi’s camp counselors can’t understand that at home, no, he does not stay up until 11 pm and get up ready to go at 7am.

We’ve all heard of the “big” camp events-they ride in a helicopter, in motorcycles, and enjoy concerts with Jewish music stars. Those events are amazing-but the real magic at camp is the little things. The love of the counselors. The dedication of the staff. The camaraderie with the kids who are “just like them”-they say the irony of camp is that they have the best food of all camps and most of the kids don’t even eat it! And most of all, the knowledge on the part of the parents who have entrusted our most precious, fragile possessions, that our children are loved, safe, and most probably don’t want to come home.

What is amazing to me as a parent as well is the desire of the counselors to keep in touch with Dovi. We constantly get calls from random guys “Hi, I was a counselor at CSS. Can I talk to Dovi?” We get visitors “Hi, I was a counselor at camp, and I’m in town for a wedding. Can I come and visit Dovi?” When we went to NY last week to see Dovi’s doctors, who picked us up from the airport when we got diverted to LGA from Newark? None other than Rabbi Wiggles, also known as Simcha Willig, Dovi’s unit head at camp this past summer.

So all these little anecdotes about our life with Dovi are cute, and touching , but how does that get us here in Miami the night before the Marathon? Two years ago, I was at the Chai Lifeline Midwest Young Leadership Board annual family carnival fundraiser. They had set up a table of all the CL literature for people to pick up. I picked up all the different brochures-not to learn more about CL-obviously I knew already the wonderful things CL does-but to look for pictures of Dovi. He’s shown up in other CL publications before and I wanted to look for him. Well as we were walking to the car with our 4 kids, I glanced at the different flyers, among them the Team Lifeline one. I looked at Benjie and said “I should run on Team Lifeline!” To be honest, Benjie burst out laughing. I am more apt to paint a wall than exercise. And at that time, Dovi was 8, and our triplets were 3. When on earth was I going to have time to train? Well as those of you who know me personally know, telling me I cannot do something is all the impetus I need. And I started thinking. CL has been such a part of our lives for the last 8 years. They have helped us overcome immeasurable obstacles. What better of a way to give back in some small way to CL than to raise money and awareness, by running on Team Lifeline? That is all true. But like I said, I was not an exerciser-I’ll leave that to Benjie with his softball and ice hockey. But I kept thinking-I have to do this! I need to give back. And as an added bonus, I’ll get into shape!

And so it began. I laced up my old sneakers, and tried a mile. I thought I would pass out, but I finished. Slowly, one mile turned into two, two into three, and so on, until last year I ran the ½ marathon on Team Lifeline in 2:36:17. And the satisfaction and fulfillment that I got carried over…I ran another ½ marathon this past summer-in my Team Lifeline shirt-actually with Moshe! And this year, even though we have not had an easy six months with Dovi-3 broken legs, one corneal abrasion over 100% of his cornea, I am here to run with Team Lifeline. I won’t be as fast-I’m hoping to finish in under 3 hours. Anyone who’d like to be a slacker runner with me, let me know! But when I finish, I will know that I have overcome the odds, persevered, and done something amazing, both for myself, and for Dovi and all the children of Chai Lifeline as well.

I thank you all from the bottom of my heart for giving of your time, energy, and fundraising skills to help both my family and all the families of Chai Lifeline. Good luck tomorrow, and thank you again.

Wednesday, January 16, 2008

Creepy, but good to know

Did you know that if you park in a huge hurry and forget where you parked your car in the short term parking lot at OHare Airport then you can call the lost car assistance? I wonder who this happened to...
You give them your license plate number and they look it up in the computer. Evidentially they scan all the plates into their computer system and they can tell you exactly where you are parked. We were parked exactly one floor above where we were standing
Good to know.
Creepy, but good to know.
And now we are home and happy.

Tuesday with Dr. Feldman

As usual it took FOREVER to get to Dr. Feldman's office on Tuesday for our 9 am appointment, although by some miracle we were only 10 minutes late. Also by some miracle there was tons of street parking. We spent 2 hours there, at which point he confirmed-yes Dovi has brittle bones. But his 3rd break was caused by the stress put on his bones by the cast on the 2nd break-b/c the 3rd break i right above where the 2nd break occurred. Confusing, but I'll believe him! So he took off Dovi's cast and wrapped it nicely in an ace wrap, with instructions to x ray next week to make sure it doesn't displace. "If it does, we'll just pop it back in place"
Right, Dr. Feldman, we'll just POP THE BONE IN PLACE"
So Dr. Axlerod, Dr. Feldman, and the newest doctor, Dr. Pat Potivien, the bone density specialist, are all going to have a pow-wow about the D and figure out how to strengthen the bones-what treatment regimen to follow. We shall see. But Dr. Feldman promised me it won't happen again. Or if it does, please call him before midnight which is the normal time the ER calls him b/c he goes to bed early!
Appointments done, it was time to get down to business...Shabbos clothes shopping in Boro Park. We went to Spoons for lunch (quite yummy if I might say so myself-it was a MADHOUSE!) and then did 13th Ave. The little boys for 3 vests, a sweater, and 1 pair of pants (for next year). I'm already forseeing it "But Mommy, I don't like vestas! I want to wear a white shirt and black pants like Abba"
Dovi got 1 sweater and 1 vest-having a fused spine makes the back grow a little slower!
Shana got 2 outfits for next year. All in all a successful shopping trip.
Then we were off to Newark to fly home (after grabbing Dovi some pizza from Amnon's for dinner). A few wrong turns later-FYI you don't take 278E to Newark. You take that to La Guardia. You follow the itty bitty sign to the Verrazano Bridge to get to Newark airport. Good to know.
Well we got there, and the flight was amazingly on time! I will tell our next adventure in a separate post :)

Monday with Dr. Axelrod

Monday went smoothly-we saw Dr. Axelrod in her temporary office at 10 am. We were done by 12:30. No, I don't have any info-she does tons of tests, and then we get the results in 2-3 weeks. Dovi was not thrilled, but he was a trooper.
Then we walked and met David and Debby for lunch (happy birthday, David) at Olympic Pita. Umm it was a little unclear how far it was from where we were, but we toughed it out! Lunch was yummy -although stinker David only had a seltzer, having eaten in advance-oh well, more for us! We walked back and had a very disappointing stop at Daffy's on the way, and were on our way back to NJ by 3pm. Then we hung out at Aaron and Tamar's and went to visit at David and Debby's after dinner. At which point we explained to Debby that no, Noam isn't insane. He's just a boy. Yes, they run in circles continuously. No, they don't really sit still. Yes, they throw balls all the time. Good luck! But he's quite cute.
Then we ordered Beef on Stick Beef on Bone from the Chinese place in Fairlawn and had a tasty dinner. My friend Aliza came out to visit and we had a lovely time.

Anthony, You're Our Hero

"Sara, our flight was canceled!" Never words you want to hear your slightly hysterical husband scream up the stairs 4 hours before your flight to NY with your oxygen dependent son for his yearly doctor appointments with Dr. Axelrod and Dr. Feldman (excellent run on sentence there). But alas, that IS what Benjie yelled up to me at 11:45 am on Sunday morning. But he continued "All the other flights are full except for the 1:05pm one"
"Um it's 11:45!"
"They say they'll hold the flight for us" (which we have since learned is a load of hooey)
Off we went, extreme errand, airline edition. I threw all medical looking supplies into my carry on, repeating under my breath "Anything I forget, Eli in Passaic has, anything I forget, Eli in Passaic has", ran and picked up my mil from work, and we dashed off to the airport by 12 noon.
Got to the airport at 12:25 (impressive driving by Benjie), and the Snoop-Dog lookalike at curbside refused to check us in b/c it was within 45 minutes of the flight. By this point Benjie had driven away to park the van (in the $30 a day short term lot-lovely) and I was on my own, outside, with Dovi in his wheelchair, the carry on and two wheely suitcases. Now you'd think there are good people in this world who would help you. Nope. I had to push Dovi with my stomach and drag the two suitcases behind me (Not before yelling to Snoop "I have a disabled child and what you just did was terrible!"). I made my way to the check in line, stood there for 30 minutes (obviously thus missing the 1:05 flight that we killed ourselves to make). A "helpful" agent put us onto the 2pm on American-we were booked on United-sent us over to the AA terminal-stood in line THERE for 30 minutes (you got it, missing the 2 pm flight), waiting while the lovely woman worked for another 30 minutes trying to move our oxygen onto American and put us onto their 4pm flight. Nope, no luck-it's evidentially really hard to move oxygen. Blah blah blah.
Back to United. Stand in line. Then we spot-our hero! This random guy behind a different counter. Benjie goes running "Well, says Anthony, I don't really work in the front-I'm a supervisor"
"Perfect" says Benjie, waves us over. We tell the sob story, sick child, doctor appointment tomorrow, canceled flights, broken bones, oxygen, 3 different flights.....
There was only one flight going out for due to the faux snow storm. It was full. Anthony basically bumped three people off of the already overbooked flight and put us on.
There were seriously 200 more people trying to get on the flight than there were seats. It was oversold by 16 people (thanks to us, including the poor woman in seat 6a whose seat Dovi took!). Well we avoided the riot by boarding early, and then sat for 1 hour while they fixed the electrical.
Oh and we flew into La Guardia instead of Newark, and we'd rented our car at Newark. So Simcha Willig-also known as Rabbi Wiggles-one of Dovi's favorite Camp Simcha Special counselors, picked us up at the airport, drove us to the La Guardia Hertz center, and was going to continue on to the Newark one with us if they didn't let us pick up at La Guardia. Luckily we did, and box of Stella Dora Swiss Fudge Cookies in hand, we headed to Aaron and Tamar's in New Jersey. We got there at 10:30-so we'd be in transit for 9 1/2 hours! We could have almost driven there.
One of the flight attendants said, "We don't know why only this flight is going-every other one was canceled"
I said, "It's very simple-Dovi needs to get to his doctor appointment!"

Friday, January 11, 2008

We have a wheelchair!

First of all, happy birthday to Benjie. Unfortunately I was cheap and did not pay for air shipping on his present (which rocks btw) and it's somewhere between Arizona and Illinois on a UPS truck now.
I'm eating yummy artichoke spinach chummus at my desk and realized I could update on the life of the D...
Well...Dovi's wheelchair arrived yesterday-hooray! Of course they forgot to install the seatbelt so now they need to come back out to install it. But we have it and he can wheel around the house, scratching everything at leg rest level. I'll need to paint once this is all done!
I realized I haven't shared my latest "Dovi is having problems so I'm decorating" project. I recovered my kitchen and dining room chairs. The dining room was a little harder b/c the two armchairs have upholstered backs. Nothing a little hot glue gun and staple gun can't deal with! I'll post pictures tomorrow night. The kitchen was $5.95 worth of clearance fabric-and they look awesome! Yay for me.
That's all for now.

Thursday, January 10, 2008

OK So I hope you all are happy now

I have talked about a Dovi blog for a while and here it is!
Now everyone will know how/what/when/where of Dovi's life without me telling it over and over and over! most of you know:
Dovi broke his tibia AGAIN this past week
We're going to New York to see Dr Axelrod and Dr Feldman Sun-Tue of next week-Dr A on Monday and Dr F on Tuesday-and I told Dr F we're not leaving his office without a plan!
We're staying at Aaron and Tamar's so as to meet little Miss Tziporah
Anything else and I'll let you all know!