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Here is my speech



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chana613




 
 
    
 

Post Sun, Dec 26 2004, 11:11 am
Standing next to me is my beautiful daughter Eliana. She is truly a living, breathing miracle.
When Ellie was six months old, I wrote in my diary…
“Dearest Ellie, I have cried today more than I have ever cried in my life. I love you so much. I wish I could kiss you all better like I do with Tovah.We don’t know what life is going to hold for you, or for us. Will you ever call me “mommy?” or take your first step?”
“I’m sacred for you.”

Who could have imagined that 11 ½ years later my daughter would be standing next to me as healthy bat mitzvah girl. A girl who defied all the predictions of the doctors and the grim prognosis she was handed.

Another excerpt from my diary to show that this journey was never taken alone and the people surrounding Eliana tonight made this miracle possible…

“The phone hasn’t stopped ringing. Rabbi Rivkin sent a letter to the Rebbe, so he can say a bracah for you. People are saying tehillim for you. A misheberach was said for you in every shul in town. In Florida, you aunt and uncle had prayers said for you at their shul.”

“I keep thinking about your Daddy. He never cries. I have never seen him cry. For you he cried.” Hope was frail for us then….

Eliana’s long story began at about 4mo. She started to cry inconsolably. She stopped smiling and she didn’t develop. It’s nothing we thought. She will roll over soon. She will smile at us. She has smiled before. She will get over this colic. Things got worse. We noticed strange little movements.
At six months old the denial stage was over and we took her to the doctor, no longer convinced we were looking at colic or normal baby movements or that ‘tomorrow she will roll over.”

Frank took the day off work to come with me. In the doctor’s office, the doctor laid Ellie on the examining table picked her up by her hands and her head flopped back. “Her head control is terrible” the pediatrician said. I didn’t hear anything after that. I left the room in a flood of tears and stood in the hallway with my head against the wall sobbing, not caring who saw me.

Eliana was admitted to the hospital and soon diagnosed with a rare disorder called Infantile Spasms or West Syndrome. The strange little movements we had been seeing were seizures. Her brain waves were a mess. It was like static imposed over her brain 24 hours a day. The seizures slowed her development, stole her brain functions and were turning her into a crying mess.
The prognosis was grim- severe mental retardation, many physical problems, maybe a lifetime of seizures, “They are hard to control, Mrs. Silbermann. Said the doctors we want o try her on a drug that is as bad as the disease. It’s called ACTH, it’s a steroid. She’s going to have steroid rages. She will cry even harder. She will be non-resistant to everyday germs, any cold she gets; you have to bring her into the ER. Even a cold could be dangerous for her. You will have to inject a huge needle into her little baby leg. And we still do not know what the outcome for her will be, but expect the worst. Some of these babies die young. “

After a couple of weeks on ACTH, I made this entry into my diary…
“Ellie, we are so scared. You do not sleep any more. Your cry is high-pitched and persistent. You cry all day. The seizures have still not stopped. You hate the shot of ACTH. Ellie, you woke me up six times last night. How can I help you if I am exhausted? Ellie, get better. We cannot see you suffer. We love you too much.”

ACTH was a nightmare. The seizures continued. The side-effects were awful and her developmental skills dropped to nothing. She was like a newborn again.

Bluma then told me of a friend of hers whose child had had IS and had seen a great doctor in Los Angeles. In desperation, I packed Ellie and I up and got on a plane to Los Angeles.
The Jewish community there was incredible, helping us with accommodations, meals, shuttling the hospital and moral support.

The first thing the new doctor did was put Eliana on a DOUBLE dose of ACTH.
She didn't sleep; she didn't respond to anyone, she developed the extreme cushingoid appearance associated with the drug. She had thrush so bad from the lowered immunity, that the entire inside of her mouth, her neck and face was white with fungus. She cried so badly that I was accused of child abuse by a fellow shopper in the grocery store. Double dosing did not work either. We considered brain surgery, but the PET scans were inconclusive (I can't believe we actually contemplated removing half of my daughter's brain).

Another bracha was sent to the Rebbe as Eliana was about to start a drug called Tegretol, which had not been used very much in the treatment of IS, even though it is used for other types of seizures. The Rebbe told us everything would be fine. Fine? How could I believe that? Miracles were hard to believe at that time- alone in a strange city, far from my oldest daughter with a baby that was so, so sick.

Tegretol worked! Eliana stopped seizing. She was seizure-free and developing fro the first time since the diagnosis. The Rebbe had been right. The doctor himself said he never saw Tegretol work so quickly. We came home hopeful.

Eliana learned to sit-up and smile and even laugh. Oh that baby laugh. Who would have ever thought she would laugh. This continued for a while and when she was 12mo, on the morning of Tovah’s third birthday she suddenly had another seizures. Tegretol never worked again, despite the increasingly higher doses.

Now what do we do? We were running out of options; there was a new drug called Felbatol coming on the market. The neurologist was extremely reluctant to put Eliana on it since it had never been tested in children, let alone a 12mo old baby. Felbatol was later taken off the market for causing some deaths.

I was reading all I could get my hands on about epilepsy and infantile spasms. I read a book with a reference to a diet that had been used eighty years ago to control seizures. It was not a very palatable diet, consisting of low-carb, low protein and high-fat meals. (We would be low-carb before it was fashionable). Could we really put a growing child on such a diet? The more I read, however, the more I became convince that the diet was our answer.

From my diary again hen Eliana was 18mo…

“It’s been over a year since you were diagnosed. You are walking, but you fall over a lot and are still having seizures. We decided to put you on a diet called the ketogenic diet. We spent three days in the hospital starting the diet and for Mommy to learn how to do it. The meals are horrible. Mostly fat: whipping cream, butter, cheese, mayonnaise. You drink the whipping cream in your bottle like milk. You can have no sugar, even toothpaste could be a problem. You don’t like to eat the food, but you are already doing better. You lost a lot of weight and are now tiny (20lbs at 19mo). You actually started babbling and are much more alert. You started dancing to music, sleeping through the night and today you even opened a closet and took something out of it. You even climbed out of the bath because you didn’t want me to wash your hair If this diet works, it will be worth the difficulty (believe me it’s difficult, every meal takes 1.5 hours to prepare. We have cut your Tegretol level in half. I am encouraged that you will have a good life.”


IN 1995, when you were three. I wrote in my diary, “Eliana, you are now making four and five word sentences. Today you said “I need my mommy.” You have been on your magic diet for 20 months and you are a wonderful, beautiful little 3yo. We love you so much.”

You have now been OFF the diet for 9 years. You are smart, intelligent, you want to be a vet, and you have a huge vocabulary and read all the time. You do well in school in the right grade level. You run, play cabbage ball and are standing next to me as a bat mitzvah fully aware of what that means.

There are no other words, except thank you Hashem for your manifold miracles.

We are pleased to announce that I am trying to start a foundation for Infantile Spasms to disseminate information to other parents. Our first goal is a comprehensive website, then a newsletter and a support system. Tzedaka tonight will be going to help these efforts.
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Motek




 
 
    
 

Post Sun, Dec 26 2004, 11:19 am
wow, truly a miracle!
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Tefila




 
 
    
 

Post Sun, Dec 26 2004, 12:33 pm
Thirteen years ago a 20yr old girl became pregnant second time around. She used the same Dr she did for her first, the Dr wanted her to have an ultrasound, routine she said, well the women wasn't going to go against the Lubavitcher Rebbe or even ask a shailoh for an ultrasound b/4 the 5th month.
Well on her next visit she complained of an infection, maybe? The Dr did an examination and said the baby is very low you are going now for an ultrasound. She was by now 5 months pregnant so she went. To be informed she was having TWINS the shock and the Joy her and her husband felt knew no bounds. So now she stopped working and took it easy. One week later she caught the flu and thats when things started going hey wire....
You see being pregnant with twins and not telling anyone like mommy etc when there was fluid escaping little by little over a week she naturually thought it was b/c of pressure and it was normal. She went after a week to check it out to find not only had she lost weight but.......her waters had broken at 6mnths shock
She went straight to the hospital called mother and husband had someone watch 1yr old. It was too late no medicine could've stopped labour from progressing. An emergency c-section was done to atleast not have the babies who were not yet fully developed have the truama of a natural delivery. Both babys imerged and were in Critical condition . :(weighing 2lbs 5oz and 2lbs 3oz the larger one passed away the following day due to respiratory problems they thought, or rather were told shock Crying
The smaller one was transfered asap hooked up to machines and transfered by ambulance to the N I C U in Mount Sinai Hospital. The head Dr there told them If he survives the outcome would not be good at all
The rest Ladies is History not only is he a smart boy, Lains the Torah Reading every week , nice height etc but also has a heart of gold ba"h.... when he was 5yrs old he saw a lady in a wheelchair ran over to this stranger and said I will daven to hashem for a Refuah Shlaimah for you Crying
This is our, my living miracle! And yes, miracles happen today Exclamation


Last edited by Tefila on Mon, Dec 27 2004, 2:09 pm; edited 1 time in total
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gryp




 
 
    
 

Post Sun, Dec 26 2004, 1:19 pm
you guys put me to shame...
thank you for sharing your nightmarish horrible wonderful miracles.
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Pickle Lady




 
 
    
 

Post Sun, Dec 26 2004, 2:25 pm
You guys are making me cry. These are amazing miracles.
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613




 
 
    
 

Post Mon, Dec 27 2004, 3:30 pm
ShaynaRochel wrote:
You guys are making me cry. These are amazing miracles.

ditto
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ForeverYoung

Guest


 
 
    
 

Post Mon, Dec 27 2004, 5:03 pm
thank you so much for sharing!!

((((((((((((((freilich))))))))))))))
((((((((((((((chana613))))))))))))))
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Rivka




 
 
    
 

Post Tue, Dec 28 2004, 8:22 am
Wow, I am touched by your stories.
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hardwrknmom




 
 
    
 

Post Tue, Jan 11 2005, 2:13 am
Beautiful Crying Crying Crying
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AweSumThenSum




 
 
    
 

Post Wed, Jan 12 2005, 9:02 am
there are miracles every single day and we take them for granted as "routine", but when something huge happens, that's when it hits us full force that Hashem is the one in charge, the ONLY ONE in charge,and even though we do our hishtadlus, He is the one who knows what's best for us.
the story of how I miscarried my first pregnancy is one for the books. I wont go into details here, if u wanna know pm me. but my point is that if x for my mis, I would never have gotten involved in the field of infertility and I would never have had the opportunities to interview top docs inthe field, and to meet so many wonderful and truly unique people.
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avigayil




 
 
    
 

Post Wed, Jan 12 2005, 11:58 pm
Chana,

That speech was just so beautiful. Hearing stories like yours and other women makes me so grateful for eveyrthing I have, that G-d has blessed me with.
Mazel tov to you and your family!
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Pearl




 
 
    
 

Post Thu, Jan 13 2005, 7:03 am
Thank you Chana, Freilich and all the other mothers who share your beautiful touching stories with us!
Mazzal Tov of course to Chana, and chapeau to all!
You are such strong and couragious mothers, your trust in Hashem is a great inspiration!
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BasHashem




 
 
    
 

Post Mon, Jan 31 2005, 4:13 pm
well thanks a bunch for the after cry, no I mean balling attack.


wow what specails stories................hashem works in mysetrios ways.

there should be a thread
Miracles

be well
Bashahem
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IBR




 
 
    
 

Post Tue, Jun 21 2005, 9:40 pm
wow truely inspired and yes I do appriciate my daughter more every day
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IndyMom




 
 
    
 

Post Tue, Jun 21 2005, 10:24 pm
Chana, do you have a tzedaka fund for your foundation? PM me where I can send.
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