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

105.0

Hi All,
I'm writing from Children's Memorial Intensive Care unit.
Unfortunately Sammy was admitted today after getting stable in Highland Park Hospital.
At 4 am this morning he had 105.0 fever. Now we know that he is being treated for ammonia.
Scary. Sammy can get worst in few hours from perfectly normal condition.You just never know.
We have seen few doctors from Stem Cell team and will see many more.
Isolated room in respiratory section of intensive care is the safest way to treat Sammy.
Oxygen mask is helping Sammy breath better.I'm watching every move people make in his room,making sure that we all take extra care .Just like old times.I realize that I'm not the easiest parent ,but I'm his only advocate .
Keeping my head high I'm optimistic that we will be home in just few days all recovered.
The day is still young,so we will see how Sammy is progressing .
I'm scheduled to work tomorrow ,so most likely Dad and Grandma will take my place until after work night shift.
Sincerely Sammy and Mom

2 years since Transplant

Hi Friends,
2 years ago ,we thought only miracle can get Sammy to this point.That is right, today Sammy's 2 years anniversary since bone marrow transplant.
It is a miracle. Even know ,that Sammy lost all cognitive functions ,but hearing -he has fairly stable life and with us at home.
We are ,so very proud that,today makes him one of few survivors after complicated and destroying transplant with ALD.Keeping us on our toes,like old times we have to keep up with his needs and enjoy his company at home.
Thanks to Rogena our dedicated nurse that is still help us with Sammy ,just 2 days a week-Sammy became a fan and has been following football whole season,listening to every game and comments. Also ,few days a week just for half hour Joanna /Sammy's aid/has been visiting .She has a son exact same age and got attached to our Sammy from the first visit.
Sammy ,knows Joanna's voice and responds a little if she ask for his help changing .Wow .
Stimulating him is our focus,as long as we challenge him with TV,Books,Music he is forced to process this information ,as long as he is able to do it -we are ahead of this ugly disorder.
With our prayers and only positive thinking in mind ,G-d will help us keep Sammy safe and comfortable.Day at the time ,we can prolong Sammy's joy here ,not suffering.
XOXO Sammy and Mom

Happy 50th Anniversary!

Hi ALL,
WE had all kids home over weekend.It was loud.No matter how old ,they still need parent eye and little bit of supervision.
This weekend we celebrated 50TH anniversary of grandma and grandpa. Honestly ,this two people was made for each other.The actual evening of celebration was magical ,only special people was there to witness this special emotional occasion.
Oldest son ,put together a movie of our family starting from grandparents meeting.We where taken back in time when each of our kids was born and big events .Its like our life was going before our very eyes and we could not help it to tear seeing Sammy on pictures holding a dog or swimming it was sad and happy moment .
Sammy is having his ups and downs again.All last week he had low grade fever.
Otherwise he responds a little and had very overwhelming weekend too.
Interesting enough we are ,so use to house full of kids in the same time ,since Sammy's illness we don't have any energy at the end of the day.
Every day is new battle ,we continue fighting for Sammy and his comfort and strangely still fall through the cracks.
Have a good night,
Sammy and Mom