Grey world...

Hi Friends,

We just came back from NY.Praying makes sense.
Shortly after we came back Grandpa turned 75! We had Family over,but after they left .........
Lets just say we got another case of staph infection this time my husband Alex.Its not clear weather he got it from 3 weeks ago during Sammy's hospitalization or .....It does not matter now. Alex is in isolation in the hospital on I.V.s .
It feels like we have been seating on the box of explosives and never know when it will go off.
There is many mysteries to why all of this challenges came to our plate same time.like Eva said,
Mom we only get stronger , I remember at her age 13,everything was black and white for me too, later in life you realize that we leave in a grey world .
Ones again , I just feel numb .There is very little that surprises me this days .
Tomorrow Eva is leaving on her spring break she is leaving with her grandparents,Marina is back at collage ,Misha went back to NY today ,Alex is in he hospital. Its supper quite in the house ,I kind of enjoy being with Sammy alone ,he understands me and we are celebrating upcoming Passover alone.
There is many challenging days ahead I just ask Almighty to give us strength to overcome this time in our life's ,just like Passover story-difficult ,but is possible to survive.......



XOXO Sammy and Mom

250

Hi Friends,
This is our 250Th post. Wow
Just an update on Sammy's condition. It has been 3 weeks since hospital.Most of us got rid of the caught with in 2 weeks ,not Sammy. He is straggling to clear his lungs every day.
We do massages and move him from side to side,in the evening he gets on his wheelchair and stays in the Family room being part of the evening with us. This up right position helps him
to caught too ,even know its sun out we are not permitted to take him outside yet.
I started to feel claustrophobic .Its like a circle around me is getting tighter ,if feels creepy and uncomfortable . I try to snap out of it ,but its to real . Even Alex has been very quit ,imagine that! My loud husband !? There is silent conversation between us, no one says anything ,but every one knows what its about.Its interesting how different we are almost complete apposite of each other and how with time we think alike?!
Lets keep positive after all -that's what kept us a float so, far....

Sincerely ,Sammy and Mom

sences

Hi Friends.
Sammy is good ,no changes since yesterday.

This is rather a personal experience that I debated to share with you all since last week.
Every ones in a while every one has to deal with home predators .This is our story.
Last week sitting on my computer after hours I saw shadow and realized that something was moving quickly . After few hours we knew it was a field mice that got in to the house from garage ? The chaise was on! We had to wait quietly 'sitting like a mouse' .Running from us to master bedroom into other rooms until Sammy's bedroom-that is when I said that is it!
I took out a cheese stick /just like the one we get for kids school lunches/ and put it on the floor between the bedrooms. What do you think happened next? Well this smart animal jumped over a cheese stick and went in to the next room! I said -Oh my , even mouse does not like this cheese -than what are we eating?
After we finally caught it and unharmed let it outside back to its home, I thought about how smallest animals relay on their senses and we failed over and over to trust ours .
Is in this ironic ? Have you ever thought about how much unused potential we hold with in our self's ? Have you ever try to listen to your inside world before? Not because others do it or its required by some one else ? You will be surprised .....
Trust your instincts .
Sincerely Sammy and Mom

Untill next morning.....

Hi All,
I know I have not updated my blog in the while.
There is not much happening.
Sammy has been trying very hard to overcome pneumonia , still. He got weaker just like all of us after illness ,but for him its much harder to recover at least back to his' base line'.
We take turns giving him massages -he loves it, its not easy to stay in bed and not able to move.
Just recently,I came across of a saying -'Success -is believing when others give up.....'
I thought about this saying for a while and I would re-do it to- Faith -is believing in a miracle when others give up........'-this is more like us.
I have been trying to compare other peoples life and situations to ours life now-with Sammy terminally ill -I realize that we are lucky that we got to this moment ALL together without losses. Its not easy to keep marriage together and your Family happy any way ,but under this kind of pressure its even harder.All of us have good days and great days . Understanding one another is my focus now , I like to always keep in mind one thing-'what ever happens -don't judge another person or situation until next morning..'
Have you try that before? You will see that next day sun is shining brighter and sky are more blue than the day before.
XOXO Sammy and Mom

Believing is -living,Living is fighting....

Hi All,
Sammy is doing much better.Still coughing and tired he is one strong kid! Bravo Sammy!
Since my believe is that Almighty does not help people that don't help themselves -I started my usual routine -try to restore services and that little help we had with Sammy before hospital.
You would think it should be simple?! Guess again. It take army of dedicated doctors,case workers,specialists to get Sammy's safe release,also million phone calls .
We are going home tomorrow.
The only challenge is house contamination. I strongly feel in order to insure Sammy's well being we must clean and sterilize everything in the house. Of course there will be 'Caution' and hand wash before anyone enters his room,but for the rest of family we don't want to pass this bug around.
This past week only makes us stronger.I'm certain that person is it's own future maker,there is no such thing is a Chance -if you don't put your sweat to it nothing makes nothing possible.
Taking da at the time I have contacted many people for help -we must make it ,hopefully making possitive diferance and easyer path for another sick child in need of home care.
As I said to one State Official if Sammy can't take advantage of this bennefit in his life time -we hope another child will !
Every time you are frustrated ,mad -think of us ,believe in your self!
Believing is-living!Living is fighting!
What do you think?
As usual Sammy and Mom
from Children's Memorial

Superpower

Hello Friends,
We are OK !
I'm talking about all of us . Keeping best interest of my family in mind - I used my SuperMoms powers /according to our younger daughter Eva Chava/
She was the last one to get sick , keep text massaging me she was amazed how 'I do this'
I ask :Do what?-she said I can't imagine how you keep it together .
Honestly ,I don't know it my self.I believe that strength come from above this has been very difficult 10 days its true. We were looking forward to see our older daughter last week when she turn 21 years old ,worried I canceled her trip home from collage. We will see her in few weeks
during Spring break ,but for now we all need to get better.
Sammy is recovering slowly.He enjoyed his bath and attention .
He is in much better place now almost out of dangerous zone. I caught my self thinking of our old Sammy ,things that he use to say or would say come to my mind.

XOXO Sammy and Mom

One and only...

Hi All.
Today was a battle day for the whole family.
Mom had to advocate for Sammy's best interest while he is moved to another floor.Main concern is not to expose Sammy to any more harm during hospitalization .For a year we had taking care of him by the book we like to keep it that way. I understand that there are different kind of families out there that feel comfortable leaving their kids by them self in the hospital,but we are not one of them.After Bone Marrow Transplant Sammy was not immunized for many reasons ones exposed to bacteria he becomes a target . My job is remind staff about his transplant -
this is Sammy we are talking about!!-there is no other one ,there will be on other one -he is one and only !!!
Today our whole family is officially sick with pneumonia. First thing in the morning Mom is going for X-rays and another visit to our family doctor. Grandma is very sick now at the critical point .Eva was the only one holding up -up until this morning.
Tough ,but we will get over it,there is no other choice.
We want to Thank ALL of you who reading this blog and for continues help and support!

We also like to Thank 'Chai Life Line' for helping us extend our stay at small hotel room near by Children's Memorial hospital ,so Mom can stay near and visit Sammy during her illness! Thank You it means allot.


Sincerely ,Sammy and Family

Pneumonia

Hi Friends,
It looks like we all sick. Pneumonia is Sammy's prime diagnosis ,so is Moms.
Sammy is up and down several times a day.I'm not able to stay with him for the first time ever. Grandma and Alex are doing great gob ,but now Grandma is sick too.After pneumonia spot was found in Grandpas XRays it became clear that we all sick with something.
Sammy still in Intensive care Unit at Children's with Isolation warning .
His fever has been up and down , so is Moms.He responds to voices sometimes he will make a sound trying to cough .His breathing mask is mostly on sometimes he gets a break from it.
I could just see Sammy taking it off if he could.
Will keep praying .
Sincerely,Sammy and Mom

Faith

Hi Friends.
I was thinking how to describe word 'faith'?
In my mind its -when you trust G-d and will not give up ,when others did.
What do you think ? How can you describe it best?
This days I have done allot of soul searching to better understand who I was ,who I've became and what kind of person I will be in the future. Learning allot in the past 2 years ,all of my values are not that important now ,in fact I feel fullish waisting my life for material things that mean nothing to me now. I thing G-d wanted me to change and is working hard guiding me in the right direction. I've always thought that physical force is stronger than spiritual or verbal -now I
know is the opposite-you can destroy some one with one word or help them survive biggest challenge of their life.
Sammy is the same. He is still not out of danger .I'm just waiting for his stubborn side to kick in ,when he recovers as quickly as he got sick. Fever and blood pressure have been in issue .
I feel very sick,congested chest and strong medication make me drowsy.
I was looking forward going to work yesterday ,changing my 'care taker role' to another productive role at work ,but I have to get better first.
XOXO Sammy and Mom

Rock

Hi friends,
Last night Sammy had OK night .Still in very low blood pressure he had to go back on medication that was just dropped.Something else was developing over night ,I got sick.
Even know we have to wear respiratory insulation gown and mask every time you in or out from Sammy's room the fact that we when to 2 emergency rooms yesterday played its role G-d knows what you can catch there.Since Alex was sick and just recovered from 10 days coughing -this nasty bug got me now.Its just what I needed! Now I will ask for my family help .Grandma was here all day today while I went to see my doctor , tomorrow Alex will stay here with Sammy.
Getting my balance in order is my goal,my spirit and physical strength are important not only for Sammy ,but for the rest of the Family too.
Sammy is up all day and not very comfortable with his oxygen mask.
Its empty in the house without Sammy.We go to his room ,so many times a day to talk ,kiss him .He is our Rookie! He is our 'Rock'
XOXO Sammy and Mom