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About JEJYAA

Mom of 4 biological children and Foster Mom. Life for me is Just Your Average Adventure. We (E and J) are a loving couple married for 25 years... This is our story....

New Adventure

Bean has been sick…should I go back to December 2008. A co-worker mentioned that my kids don’t get sick…that I never seem to take a sick day because of my kids…talk about a kinahurra. First was Bean on December 30th – 102.5 fever and croup! By New Years Eve we had sick children…4 sick children!

So they recovered…in time for Bean’s birthday – she turned 5 on January 5th!

And MLK weekend happened…it was supposed to have her birthday party the morning of the 18th. We had spent a lovely Shabbat at the M&M R’s and a lovely lunch at L&M R’s – Sunday we got up to make a cake for the party. 30 minutes into it Bean started vomiting – she perched herself on the couch – and we had to postpone her party…we decided to wait two weeks, and re-schedule it for February 1st. Bob got the bug on the 19th – and was able to stay home at watch the inauguration on the 20th…Puppy got it on Tuesday the 20th – Bean was back to school that day…and on the 21st Belle got it!!

On the 22nd – Bean got 103.5 fever. She said everything hurts. We thought she got the flu! It was the first time in my children’s lives that I missed getting them their flu shot. We took her to the ped – wasn’t strep. In-laws were here – we tried to do the normal stuff – motrin made a trip to the Silver Diner and Air and Space museum doable.

January 28th we took Bean back to the ped – for more blood work. My best friend had her baby on the 31st and we planned to go to NJ for the bris. February 3rd we were back at ped for more bloodwork…she STILL had a fever!

On February 4th – Bob’s birthday I took Bean with me to get candles for Bob’s birthday at school – walking out of the store Bean fell to the ground, her legs fell out from underneath her…she couldn’t walk.

That afternoon we got the call to have her admitted to Children’s Hospital (during a terrible meeting at work – different story line). We chose to go to Silver Diner with the kids for Bob’s birthday, Bean was doing ok – and it seemed unfair to Bob’s to not celebrate after we went to have her admitted… Mom came down to help.

I spent the first night with Bean in the hospital. Early morning blood draw – beeping machine of the baby next to us. On February 5th Bean had a chest xray, and two separate parts of a bone scan. The bone scan without sedation…first kid in the hospital to do so!!

We were hoping it was “just pneumonia!”

I spent the second night with her at the hospital. I got no sleep that night, but she did. Grammy came to visit at the hospital, and I tried to get a shower…they were broken!!

J brought the kids down to see Bean before Shabbat. They got to spend some time together before mom took them home. I stayed for the optomatrist visit. And then went home to sleep while J stayed with her. We missed Baby B’s bris…sad and overwhelming on many levels.

It was Saturday, February 7th and Bean walked for the first time in days!! I stayed with her that night.

Grammy came down to be with her on Sunday. And slept over. It was the first time in a while J and I got to be with the other kids together.

Monday the 8th Bean had an MRI….and Grammy had to go back to NY.

Tuesday, February 9th Infectious Disease says they are done with her – on to Reumatology!

Wednesday, February 10th J brought all the kids for dinner at the hosptal. Bean was feeling a bit better. It was nice to be together!!

By Ferbruary 11th we were giving been 5 doses of oral liquid meds a day. She was hurling thing and going crazy. Not the easiest of patients.

And then we had to cancel our trip to California for cousin R’s bat mitzvah. I wrote that day: “overwhelmed by the irony missing last year’s pres weekend flight for snow- and this year for fever (thought it is 65)…this weekend doesn’t have good luck!”

That day Bean said she was done watching tv! Ever heard of such a thing?!?

Belle lost her first tooth….Bob was her tooth fairy! And I missed the kids Cubs Club performances.

On February 12th I took Bean for her last invasive test. The bone marrow test. We needed to rule out the worst. The kids all came straight from school and played with Bean in the playroom. And then the news came….it was NOT Leukemia!! We were all going home. No diagnosis…but a plan.

February 26th we took Bean for a follow up at Children’s with Dr. J. We were able to start tapering off her prednisone.

May 7th J took Bean back to Children’s with Dr. J. He reported back: “Best…Dr.Appt…EVER!! I posted on Facebook:

It looks like we might be ARTHRITIS FREE!! She is off meds and we don’t need to go back unless symptoms come back!! “Best Dr. Appt EVER is right!”

June 4th Bean complained of her knees “not working.”

June 16th Bean “graduated” from pre-school. I posted on facebook: “got teary eyed at Bean’s graduation…watching her move and shake while dancing…4 months ago I wasn’t sure she would move like this again…thank god for miracles!”

August 4th Bean had 104 fever – I took her into Dr. C – he said we were looking for

“good news like a UTI or ear infection!”

Neither were true, no other symptoms – looked like a repeat fever with unknown origin. It left as fast as it came.

September 21st 1:30am – we returned from a trip to NY, Bean could not climb into her bed. She had a 102 fever, couldn’t walk so well. She stayed home the next day with a swollen left knee, & fever. We took her in for blood work on the 22nd, we put her on Naproxen.

September 24th Bean returned to school. The school agreed to take her back even with her fever, knowing that she wasn’t contagious. But not only did she have a fever, and a swollen knee – her fingers hurt and 6 of them were swollen. They didn’t even look like they belonged on her hands.

October 5th Bean continued to have a fever of 100.2 she was down 4lbs, fingers & knees are hurting…sed rate is up to 80… we were STILL praying the naproxen to starts to work & we could avoid steroids.

October 6th Bean dressed herself and skipped out the door on her own, for the first time in 3 weeks. I posted on facebook:

“There may be a light towards the end of this tunnel…hope the next tunnel is FAR FAR AWAY!”

October 8th I took Bean back to Children’s for more blood work and to be seen by the new rheumatologist, Dr. H.

October 9th Dr. H called to report back on the findings, give us a diagnosis and outline for me the next steps. I posted on facebook:

We got a diagnosis. Systemic juvenile idiopathic arthritis. We pray that Bean is one of the 1/3 of children who will outgrow this debilitating disease….and for the strength to make the best decisions as far as medicine to treat her condition…and for the strength to tolerate her behavior on steroids!!

Change needs to be realized!

Time has passed and lots has happened. But I need to mark the change, MAJOR CHANGES in Belle. It is amazing I am so proud of her.

We have left the last psychiatrist and moved onto the next one. She has started a new medicine…and I’m seeing a sweet respectful girl…one that I had always hoped was behind the other mask…hoping it was a mask!

We must keep her to a schedule, and be respectful to the amount of sleep she NEEDS 0 6:30 bedtimes are a rule, not an exception. Which means, in bed at 6:15, not starting to go up at 6:30…but it is working.

She is communicating and not doing “no, no, no…” And I can count on her to not hit her siblings… MOST of the time.

Change is good – this change is good – I’m happy for HER and all of us!

Was it me? Just a coincidence…

6 years ago – I told my Father-in-law to “be good” — as I said goodbye to him for what would be, the last time…

2.5 years ago – I told my Grandma to “be good” — as I said goodbye to her for what would be, the last time…

4 months ago – I told my Grandpa to “be good” — as I said goodbye to him for what would be, the last time…

Just now I watched the Today show — Merideth Viera said “be good” to a trucker that she had spent a time with…that trucker died this week.

Time to catch my breath…

Friday was another terrible day at camp for Belle — she hit a child, they punished her, they didn’t follow the certificate regimen that we had given them to help her…and then to top it off a pisher of a kid tried to psychoanalyze my daughter – god damn it… she roll played with her and thought that I would be so excited by this…and gave her all this attention — why couldn’t she just listen and follow through on what I asked them to do?

They were so mean to her, I watched during their show… the conselors didn’t respond to her – like they did to the others, the kids shied away from her…I was so sad for my beautiful girl who has been driving everyone crazy…driving me crazy — I love her, I love her, I love her — I may need to repeat it over and over and over — or even climb to the highest rooftop — I LOVE HER! I want everyone else to also…

I called R – our ped — crying – I’m was afraid they were either going to break her, or kick her out! He is just amazing, just amazing — after droppng Bob off after another accident – I took her to his office and he put her on clonidine – a quarter of a .1mg pill 2x per day ….

I hate drugging my little girl – I hate drugging my little girl — but I need to be able to love my little girl on my outside — not just my insides, I need to show her that I love her, we all do — she deserves it…she does.

Perspective….

The dreaded question: Did he smoke?
Inquiry serves as a painful reminder of a father’s death from throat cancer
By Elisabeth Egan
Self
updated 9:39 a.m. ET, Wed., July. 23, 2008

I’m sitting between two of my friends on a bench at the neighborhood playground when one mentions her aunt recently died of lung cancer. I know what’s coming next, as surely as I know my kids will boomerang back toward me from the monkey bars, begging for money, when they hear the jingle of the ice cream truck.

As if on cue, the other friend asks, “Did your aunt smoke?”

I don’t stick around for the answer. The ice cream truck has arrived, and I’ve never been so eager to hook up my kids with an Astro Pop. Blue-lipped and sticky, they can’t believe their luck. What happened to their real mother — the one who’s always pushing baby carrots?

I simply can’t stomach yet another conversation about smoking and cancer. I’ve been a reluctant witness to the tobacco inquisition ever since my father was diagnosed with throat cancer in 1999. He died four years ago, a month shy of his 60th birthday and a week after he and my mother celebrated their 35th wedding anniversary.

He smoked a pipe every day for more than half his life; he also regularly enjoyed a stiff gin and tonic (or three) and a cannoli (or two), and he never exercised a day in his life until he found out that he had a heart condition at 55.

When somebody asks if my dad smoked, I say yes. (Nobody ever asks about his other bad habits, although excessive alcohol consumption is a prime culprit in the development of throat cancer.) Once I’ve answered, it’s as if the questioner has ticked off a box in her head. As in, “Oh. He got what was coming to him.” Or, perhaps more understandably, “I don’t smoke, so I’m safe.”

Smoker or nonsmoker?
These people aren’t malicious; in fact, before my dad died, I remember asking the same question under similar circumstances. Now that I’ve been on the receiving end of it, though, I think responding this way to news of a cancer death is misguided — and slightly rude. When someone dies of a heart attack, do we ask if she was overweight? Do we ask if a victim of a car accident was a good driver?

I don’t understand why it is that people who have tobacco-related cancers must be summarily classified as either smokers or not. Are we to believe that death by cancer would be less tragic — would be, in fact, deserved — if the dearly departed inhaled a pack a day?

Of course, it’s human to crave an explanation when awful things happen, to grasp for a sense of control when in reality we have none. I still agonize over the absence of a man who clearly meant to be here for a good long time. After all, he left behind crates of unplanted tulip bulbs and enough frequent-flier miles for a trip around the world.

I’d like to tell people who ask the dreaded question exactly how painful it is to be reminded, over and over, of how my father’s bad decision — to take up pipe smoking — robbed my family of one of its poles. I wish they knew exactly how much my dad suffered and what it was like to watch. He was a lawyer who retired early without fanfare because he’d had his vocal cords removed with only two days’ notice and, really, what good is a lawyer who can’t talk? Stop and think for a minute about what it would be like to live without your voice: You can’t make a sound when you laugh or cry. You can’t whisper or yell. For three years, my dad also couldn’t swallow solid food, and for the last six months of his life, he was fed through a tube in his stomach because he couldn’t swallow at all. He had his teeth pulled (a casualty of radiation) and his toe amputated (a casualty of chemotherapy and diabetes). There were countless smaller indignities, including the time we took my daughter to see Santa Claus and the other kids in line cried when they caught a glimpse of the hole in my father’s neck.

Cheated out of a dad
Was my dad’s five-year struggle with cancer penance enough for his choice to smoke? Absolutely. Do I still resent him for that choice? I do, and never so much as when I’m placing a birthday cake in front of one of his grandchildren and he’s not there to take his signature out-of-focus photos. When my third baby was born last spring, one of my first thoughts in those early exhilarating minutes of her life was, Look what you missed — which surprised me. Hadn’t I already cycled through the stages of grief? How did such a joyous moment land me smack-dab in the middle of mourning him once again?

There are other times when my feelings of being cheated out of a dad border on rage: when I coax a fire into burning without the help of a Duraflame log; both times the Red Sox won the World Series; and whenever Sue Grafton publishes a new book and I have nobody to give it to. Sure, I’m angry with my father. If he hadn’t smoked, he’d still be here. When a friend is diagnosed with cancer, I tell this father of three about my dad’s positive experience at the same hospital where he’s starting treatment.

Of course, he asks how my dad is doing. “Actually, he died,” I say, wishing I hadn’t gone down this road. “But he smoked,” I add. “What did he expect?”

My father was the least judgmental person I’ve ever met — truly, ever — so when I think someone is judging him (especially when that person is me), I feel both ashamed and bereft. When my own children ask me why their grandfather died — always at some inopportune moment, such as when I’m placing a large order at Starbucks — I don’t sugarcoat the answer: “Because he smoked.” But then, impatient barista be damned, I remind my daughter, Louisa — at 7, the oldest of my brood and the family’s inaugural grandchild — how she used to love following her grandfather around his garden, drenching the plants with her own little watering can until they were flat on the ground. I want all my children to understand that smoking is not the sum total of anyone’s life, especially my dad’s.

I recently moved to a new town, where I’m slowly making friends. When one of them comments on the riot of impatiens on my patio, I mention that all my flowers are planted in my dad’s old potting soil. These bags of dirt, lugged from their semifinal resting place behind my old tricycle into the trunk of my new minivan, are an unlikely legacy from what we called the Garden of Egan.

“So your dad died?” my friend asks. I say he died of throat cancer. Then I launch into my spiel — anything to forestall the Question. “He was sick for a long time; he died at home in his favorite chair a few hours after the series finale of “Sex and the City”; my mom is doing well; she’s the belle of her church choir, thanks for asking.”

But smoking never comes up, which is how I know this friend is a keeper. Instead, she asks, “What was your dad like?” Why can’t everyone ask this question? Answering it is a joy; it’s the next best thing to having him back again.

Copyright © 2007 CondéNet. All rights reserved.
URL: http://www.msnbc.msn.com/id/24844538/page/2/

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Professionals are held to a higher standard…

I believe this – with all my heart and sole – professionals are only human – but because they are professionals they MUST be held to a higher standard….it is the nature of the position.

A director should not send out an e-mail to their staff insinuating, implying or announcing preferential treatment of their staff over another person’s during a collaborative project.

A consultant – who tauts theme selves as a professional, should not forward another person’s e-mail to anyone, without permission.

A director should not withhold information from staff because it will be tough conversation – and think they will inform them when they return from a vacation even if it means the staff person would find out from an outside party.

A clergyman should not use a congregant as a pawn in a political decision.

All in one week — I’m disappointed! Disappointment To error is human – but professionalism comes with expectations and responsibility!

Call from pre-school…

I got a call Wed afternoon form Puppy’s teacher, saying he has a boo boo on his side – it was warm and hard and I needed to take him to the Dr. Now my favorite ped is on vacation – so I go see the one of the other two. He tells me it is an abscess and that he needs two different antibiotics twice a day. I remind him about Puppy’s allergy to penicillin and he asked what happened when he had it. I told the Dr. that Puppy had had a full body rash – and we pulled him off. Dr. J said that wasn’t an allergic reaction and he wanted to give it again because it would be the best for the abscess…He sent me home to get him the meds and put him in warm bath to loosen the yuck inside.

Fast forward two doses – and it is 1:30am on Thursday – our boy walks into our room with a red face that is VERY warm – I take his temp thinking it is the infection….his body is absolutely cool, but his face red and hot. I called the Ped – the third Dr. – Dr. N in the practice called back – she – not one of my favorite people, but that is a story for another time…. she said stop the meds, bring him in first thing – and we’ll change what he is getting, but also give him some benadryl.

Fast forward to 7am – his face is BRIGHT RED – HOT – and now SWOLLEN — he was breathing fine – but looked like Unc did when he was mango boy…. No one answered at the Dr. office, unlike when Dr. R is there —

I took Bean and dropped her of – J took Bob and Belle to camp and then took Puppy right in — Dr. J got pissy with J for not calling first — I was pissed…here he was having this reaction – it was either the office or the ER….

So home again, home again – now my poor boy is on 1 medicine – 4 times a day — 2.5 tsp of YUCKY stuff… we are not above bribes!! Take your meds and he gets some choc chips!!

But it for sure put things in perspective — other things were happening…but my boy was going to be ok — quite emotional….