Wheezy comes,wheezy go....

Hi friends,
In the past few days Sammy is trying to clear his lungs.Same old wheezing in his lungs.
We thought it went away,but last night we had pretty difficult breathing pattern.
I realize that some of his functions are not working anymore and if you think that simple clearing your cough is easy.... It actually take allot of stomach muscles and deep breath to cough.
The only question is if this is in fact another decline what is next.....
Sammy seem very tired ,after antibiotics he is worn out .
All is on my mind is how we can brighten his day? what gives him the most positive emotion?
Laura his teacher from school reads book after book with Harry Potter -we know he loves it,
his bath and massage ,time with family in the evening,sibling cuddling next to him occasionally he will find me next to him snoring.....
This is our regular routine ,life is going and till our hearts stop beating we will be forced to move alone and try to make the best of it.
No questions we love our kids and want to be well for them ,they will always need their parents.

XOXO Sammy and Mom

Balance

Hi All,
Little by little we are finnaly bug free. Sammy is doing well almost done with his antibiotics.
His spirits are down now days.He has been very quite lately.Very little movement or sounds.
It looks like he is ,so tired of all of this . Bath make it worth a while ,water gets best reaction and happiness from Sammy. We try to bath his as much as we can ,mind you that he is just about 100 IB now,so I need major assistance with it.
Family is in OK shape -balance our lives around Sammy is our main concern. Every one has to help out ,only united we can give Sammy best care and support its obvious that hearing all family members voices make a difference for our boy.
We realize that lock of sleep and intense schedules throwing us of scale ,so we take turns to relax
giving each other break, few days a week we rotate it for each other.It can be night out with friend or movies ,the basic idea is snap out of depressing environment just for a moment.
It helps me ,gather my thoughts ,plan our week and get tremendous amount of medical papers ,requests assorted out . If I tell you that in 2 years we received 52 denial letters because Sammy's condition is ,so rare . We hope that new health care plan is in our favor ,but it sure does not look promising,who wants to pay bills for a child in vegetative state........
What ever happens ,happen ,but it must be in most humane acceptable way .
XOXO Sammy and Mom

Symptoms

Hi Friends,
My apologies for not updating my blog lately.
We suspect that Sammy have MRSA . We will find out tomorrow.Its about right time to develop any symptoms by now-its about 2 weeks since Alex came home from the hospital after getting treatment for it.
Sammy have been shouting out sounds ,but we don't know if this is a happy or cry from pain .
Its is very frustrating indeed ,not knowing how to tell. Last week overnight few problems areas appeared and he has been treated for it immediately.Thank G-d for our dedicated doctor , home care nurse, our pharmacists and our medical office that is always there to help us .Thank you.
You better believe it that we have to get familiar with near by hospital staff,pharmacist, etc.
Sammy's teacher and aid from school has been visiting with reading lessons for whole year now.Sammy loves listening to book she reads to him,he can hear and this is one of highlights of his day during week days,Thank you Laura Jacobson for your dedication .
Otherwise , everything is running on my energy,so I better make sure ,I have it enough for every one. One of our kids said that 'our energy bunny needs re-charge'.
Its true ,I like to sleep late for few days ./During this 10 days I must give Sammy his meds every 6 hrs ,so my sleep time is slashed to 6 hr now./
Hopefully ,we can take off for a long weekend soon .We will see how Sammy does....
Happy Spring every one and healthy one!
Sincerely Sammy and Mom

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