Monday, September 28, 2009

A Sweet Year to Everyone!

I hope everyone had a meaningful and easy fast. I'm looking forward to the upcoming year! May it only be filled with brachos and good things for all!

As soon as I turned on my computer tonight, I was greeted with the following email:
Dear Ms. Lubman,

The results of the ophthalmology decrease the likelihood of Cohen. We will try to put together a panel for testing if the micro array is normal.

Sincerely,

John G. Pappas, MD

So now we wait for the chromosomal test results and see what our next step will be

Little Miss is happy that it's (possibly) not Cohen Syndrome!






Kisses for everyone! Adi's making her kissy face. :)

Sunday, September 27, 2009

Puppies, Credit Cards and Six Year Old Babysitters

http://www.pet-net.net/dogs-puppies/articles/Beagle.jpg
We were walking along on Friday a couple of weeks ago... on our way home from shopping when a dog runs up to us. I looked around for an owner but there were none in sight. He kept jumping up to us and trying to lick the kids' hands. He didn't look like a stray. I looked around for his owner, but no one was around. I figured I'd take him home and then look for the owner. I couldn't leave him - he kept running in the street! I took a piece of meat from our shopping bag and offered it to him so he'd want to follow us. And he did. When we almost got him into the house, a lady came around looking for him. She said, "You want to keep him? I have no time to care for him." I would have loved to keep him, especially since I don't think she can be such a good owner if she's ready to dump her dog off at any stranger's house who agrees to take him.
I asked her why no leash, and she said he was at home without a leash and just ran out the front door.
It was an eight month old beagle. His name is Zus. Only later did I realize that maybe the reason he chose to follow us was because he heard me saying "Zusha" and thought I was calling him. Funny, no?


I used my credit card in a grocery store. When I went into the next store and wanted to use it to pay, it wasn't there. I checked all over my wallet and bag. Nope. Went back to the store and they basically ignored me.
Uh, HELLO? I used my card here and the cashier didn't return it.
Sorry, can't help. So I called Hillel to cancel it. B"H it wasn't used it that short window of time it was missing, and we already got new cards in the mail.


We were walking along one day, and walking near us was a tiny little girl pushing a baby in a stroller. Okay, no big deal. I assumed the mother was a few steps behind her and I paid no attention. Until she asked me to help her cross the street. :? I don't like it when kids ask me to help them cross in general. I mean, if your child can't cross a street alone, he shouldn't be walking outside alone. But this... just wow. The stroller was a Bugaboo Bee, and the two year old sitting in it was facing the girl. Who was smaller than Zusha.
I asked, "Your mother lets you take the baby outside alone?"
The girl replied (proudly), "Yes."
"How old are you?"
"Six!" (Again proudly.)

Erm.
So I guess next year this time I can be letting Zusha take Adel outside, alone, across streets and all. I'll, uh, keep it in mind.

Friday, September 25, 2009

The Lawyer, the Polite Gentelman and Little Miss Trouble

My boys...

A never ending experience of fun, joy, FRUSTRATION, smiles, and surprises.

This little darling...

is great lawyer material. He has become SO stubborn, SO set in his ways, SO adept at making sure he gets what he wants and that he gets the last word.

Me: Gedalya, put on your pajamas.
Gedalya, put on your pajamas.
Gedalya, PLEASE put on your pajamas.
Gedalya, put that toy away and put on your pajamas.
Me: [takes toys away] Did you hear what I said, put on your pajamas. I'll hold this for you since you seem to be too distracted by it.
Gedalya: [I'll cut to the chase because I'm not sure that anyone is interested in reading exactly how he shrieks and shouts] FIRST GIVE ME BACK THE TOY AND THEN I'LL PUT ON PAJAMAS!!!!

And he will not relent. He will NOT put on his pajamas until I give that thing back. Or until he falls asleep on the floor pajamaless.

Another scenario:
Me: Gedalya, will you please throw Adel's diaper in the garbage.
Gedalya: [ignores]
Me: Zusha, can you please throw away Adel's diaper? [or I would get up to do it myself...]
Gedalya: NOOOOOOOOOOOO [jumps up and down flapping his arms]
NoNoNoNoNooooo!!!

And he gets up to do it himself. He can't handle the fact that someone is doing what he was asked to do. That's the competitive soul inside him. Usually it's an easy way to get him to do something. If he doesn't listen the first time, I say that it's okay, I'll do it and he'll screech and jump to do it first. But sometimes... I ask him to take his negel vasser to the bathroom and he refuses. Eventually I take it myself and he gets his tantrum on. In cases like this, I just can't let him have his way. He is agitated and wound up and going nuts- he'll spill the entire bowl on his carpeted room floor if I give it to him. So I quickly take it to the bathroom, spill it and lock the door. Otherwise this wildo childo will refill the bowl, take it back to his room... etc. FUN TIMES!

This sweet boy...

is growing up! He's becoming so mature and surprising me with his lovely behavior more and more often.
He gives in to his brother a lot. Once we were at the library and Zusha was sitting next to me. I was reading him a book. Gedalya was looking at some other books on the shelf. Then Gedalya came to join us. He wedged himself between me and Zusha and slowly, inch by inch, overtook Zusha's chair! What do you think Zusha did? It surprised me too- he went to the other side of the table and brought another chair for himself! I was stunned speechless. And this is just one example. There are way more stories of Zusha quietly letting Gedalya have his way than I am able to remember.

Whenever we have one of those Gedalya's episodes I wrote about above, Zusha understands when I wink at him and say, "Zusha, please do ____" and doesn't put up a fuss.

There are so many scenarios. He helps Gedalya pour a drink, always shares his food, and generally looks out for Gedalya. In a store, he'll keep checking to make sure Gedalya isn't left behind or didn't wander away.

That's not to say he never fights or takes away toys or hurts Gedalya, but the pleasant episodes are becoming more and more frequent and I'm so happy.

This little Miss:

~is~


She's knocking packages of food off the shelves in grocery stores! She reaches her pudgy little hand with dimples on the knuckles out of the stroller and bonks the items until they fall.
And I couldn't be any happier!

Thursday, September 24, 2009

Ophthalmologist

Eyes are perfect, B''H. The first doctor to say only good news.

Okay, I'm Fine

I'm okay now. :)
Got up, dusted myself off... ready to continue life as if it was never interrupted. And truly, it wasn't. Nothing changed, besides my perception. And I, for one, have finished mourning for that which never was but could have been.

I've accepted whatever will be.


Cohen syndrome is a very rare disorder. It is more common among the Ashkenazi Jewish and Finnish populations. Males and females are affected equally. The symptoms of Cohen syndrome usually start in infancy.

Cohen syndrome is a genetic condition that affects various parts of the body and is characterized by developmental delay, mental retardation, small head size (microcephaly), and weak muscle tone (hypotonia). Additional features include progressive nearsightedness (myopia), degeneration of the light-sensitive tissue at the back of the eye (retinal dystrophy), an unusually large range of joint movement (hypermobility), and distinctive facial features. Characteristic facial features include thick hair and eyebrows, long eyelashes, unusually-shaped eyes (down-slanting and wave-shaped), a bulbous nasal tip, a smooth or shortened area between the nose and the upper lip (philtrum), and prominent upper central teeth. The combination of the last two facial features results in an open-mouth appearance.

The features of Cohen syndrome vary widely among affected people. Additional signs and symptoms may include low levels of white blood cells (neutropenia), overly friendly behavior, and obesity that develops in late childhood or adolescence. When obesity is present, it typically develops around the abdomen, with the arms and legs remaining slender. Affected people may also have narrow hands and feet as well as slender fingers.

And some more info... (This article was last updated five years ago and states that there are fewer than 100 cases diagnosed worldwide and that there is no genetic test for Cohen Syndrome. In this short time, so much has changed. Now there are close to 1,000 diagnosed cases and there IS a test for it! How grateful I feel to live in this age.)

Upon second glance, it's not all that bad. Obesity? It scared me senseless at first, until I saw their definition of obesity- I'd be considered obese in their terms!
Degenerative nearsightedness? Whatever. I've come to accept it. With today's (and the future's!) options, even people who are almost blind can see.
20% chance she will never talk? Meanwhile I'm focusing on the 80% chance that she will.
Overly friendly personality? Hmmm... I think I can handle that. ;) I mean, I've handled it so far! :D

So I'm fine.
Today we are going to the ophthalmologist (in Boro Park, mercifully!!) to see what's going on in Adel's eyes. From what I understand, the ophthalmologist would be able to see something in the eyes if Cohen Syndrome was present. That would help with finalizing the diagnosis.

If you have a minute, I'd really appreciate if you can say one kappitel Tehillim for accurate results of the eye exam. (Of course, daven for positive as well, but only as long as that's accurate. :))


In other news, Adel's evaluation report came.




I'm not surprised by the results, but I still winced while reading each score.
The best part of the whole report was when the occupational therapist started her report with, "Adel is a sweet 10 month old baby girl..."
That totally made my day.

Wednesday, September 23, 2009

11 Months Old- the Last of the Monthly Posts!

Here is the very last "month" post! Next one up will be the BIRTHDAY celebration :D :D Is that normal? No it's not. One year. One year. I'll get into my head eventually.
Meanwhile, here's my birdie, enjoying being 11 months...

Little sweetie. :) She's smiling at her brothers who are enjoying a ride. Although she finally learned to cry after a ride ends, she has yet to learn to cry to request a ride. Meanwhile she just laughs and enjoys watching. Depending on the type of ride (whether she can sit in it on her own) I will also put her on.
And then it will end.
And she'll squeal at me.


And if that won't work, she'll burst into tears.

Classic. Perfect. :D

Some more of Adel's 11 month day...

We played in the park. Adel guarded this entrance...


...until she was hauled away.



She enjoyed the slide...


...and then played with her hentelech before she took her nap.



When she woke up,


we went for pizza.
And Adel happily munched!


She actually ingested around the same amount that is plastered all over her face, but it's the actual holding and munching that counts!

Birdie in action!


And that was our wonderful day!

Family Photos

Getting a photo of three kids. To be more specific, getting a good photo of three kids.



It's not an easy task!



But it sure is fun to try



and see how many goofy ones I get!



But at least I've captured the kids in the real.



Funny Poozils!