Count your Blessings......

Hi Friends, Happy Hanukkah!
I know I have not updated you all for a while.
There really have been no changes in Sammy's condition. We Thank G-d for that!
Accept he is growing facial hair .......
Counting our Blessings...

Tomorrow ,we are saying Good Buy to some one very special ,only 32 years of age.
We remember her as a younger child of two beautiful girls of Friends Family.
She always smiled. Leaving 2 very young girls behind ,she will be missed by many.
To the last minute she fought with decease.
Cancer does not care about age or race ,it does not know love or dignity-its just takes away people we cherish and love......She will be greatly missed ,her smile will always stay with us.....
Sammy and Mom

Allergy

Hi All,
Sammy had weird sleeping pattern in the past few weeks.Napping on and off sometimes not sleeping for 24 hrs ,finally he is back to night sleeping schedule.It has been a while when I remember sleeping through the night .His meds are going up to help him with small issues and our Nurse had discover that Sammy had major allergy issues,after simple over the counter Benadril ,his lungs are clear now . We are counting our blessings every day.I try to get through the day as positive as possible ,you would think that most people will have some understanding or compassion for our daily battle?! Well,not really . It does not surprise me any more.
All I know that somehow I was chosen to deal with such a devastating disorder ,child illness.
I know in my heart that I was chosen for my strength.To unfold , learn and deal with deadly disorder that ran in our family for several generations ?! To protect future of our Family
making sure that no other child born to our family will have ALD...
Work is busy , Thank G-d for it,not only financially ,but it helps me stay a float.
Many of my customers knows my kids and Family .When kids were smaller one year I had 3 children in 3 different schools ,many of Moms become friends for years.Every now and then I get a question how are the kids?I don't know what to say .On one hand my 'brutally honest' personality does not let me lie,on the other hand I don't want to burden other people with my troubles specially at work,were professionalism comes first.
Thanks Giving is coming soon ,I really don't like this time of the year anymore ,3 years ago 1 day after this holiday we found out about Sammy's diagnosis.....
xoxo Sammy and Mom

103

Hi Friends,
Today I finally got Sammy weight. He is 103 IB.
No wonder why I felt he gained more weight. It funny how 3 pounds can make a difference.
Sammy's growth jumped few times in the last month.
Even know his face still look like young boys ,he has shown signs of teenager .His scale has officially tipped over to young man.
His facial hair and acne have been part of Sammy's appearance ,more and more we hear this deep voice when he caught .At first I did not know were it was coming from ,than I realized that it was Sammy .
Life is taking its course claiming every normal growing development of our son ,but if it was same inside ...
We manage to take him to our lap at evening in Family Room.He feels my heart beat and knows that I'm holding him .He also knows when Alex is holding him and will talk non-sense to him,he is ready to listen to Daddy's jokes and funny songs.
Eva has been sick lately and was not allowed to come near Sammy ,she has been watching him from distance .
Over all ,we are very lucky to have Sammy with us as long as we have -he is our ANGEL
XOXO Sammy and Family

Stem Cell

Hi Friends,
Some of you wanted to find out how Sammy really doing this days.
He is stable ,healthy heart and organs ,but lost connection from brain to the rest of his body.
That is what determines Sammy's vegetative state.
He was examined by Hospice Doctor .He was impressed on Sammy's condition and how well cared he is. Just recently we learned about first stem cell spinal cord operation the results are not available now,but it give us hope.I cant understand people striking stem cell,for those like us with terminally ill children its only hope for the future -Those people must not experience nearly what we do and other families with Alzheimer's and other disorders that stem cell can help to cure condition of loved ones.
Everything is in compering !
So our focus is on keeping Sammy germ free. Any Cold or Flu can affect his immune compromised system.
Sincerely ,Sammy and Mom

Sammy is 10!!!!

Hi All ,
September and October is very busy ,not only at work,but at home too. Allergy season and flu all around make us take extra care around Sammy.
Alex turn 50 ,Eva's-14 Th B-Day was on Oct 3rd and Sammy's follows the next day.
Let me tell you if any one told us that Sammy will survive not only 6 month ,but so far 3 years?!
Go Sammy -
He could not make it without your support and prayers ,something magical happened yesterday-
Sammy turn 10 years old !

Sincerely ,Sammy and Family

New link

Hi All,
You can find us on face book now too.
It has been a while since last massage.
We are deep in our 'life surprises'. Utility bills killing us.I dread every phone call,if its not Comed notifying us of disconnection of service its a water company or gas company.This are life important factors that must present in our home where we care for terminally ill child.
Honestly I'm ,so tired of fighting .
Unfortunately , this bills had piled up to hundreds of dollars each .I just cant put my thoughts together anymore.
Work has been hectic and that is the way I like it, we completely depend on my paycheck now .Its impossible to explain ,how important this job to me not only mentally ,but physically too.Its my shelter and keeping it together place.At least for few days a week ,I feel needed and enjoy meeting new and old customers.Just like a color pallet people come in different shapes and sizes. How much do you like your job?
XOXO Sammy and Mom

Away

Hi ALL
We are on vacation in Miami.For short 5 days will not see Sammy.
He knows every time when we leave .How ? That same unique feeling of intuition.
He was ,so sad the day we were leaving .
We promise each other not too feel bad about leaving Sammy home and make best of our days away. The water is like warm milk -its magnificent !
Mikail and Salvatore /Mikes childhood friend/ just arrived yesterday. There is 7 of us !
Mom stays Mom every time,no matter what.I cook and shop for kids and its not hard for me ,I guess ,I use to spent my time caring for my Family .
One day ,I will get a break were I would not have to do anything,just relax,but not this time.
Sammy is doing well at home ,his nurse is there and grandparents -always!
We hope to get some rest here ,but feeling of guilt is not leaving us ,even know we are not allowed to talk about it..............
XOXO Mom /Sammy is at home../

Flash back

Hi All.
Its 2:31 am.Why cant I sleep?
Few days ago we had a visitor.Some one who new Sammy for those 2 short years in kindergarten and 1st grade ,who saw us struggle trying to find answer to what is happening .It was a flash back and reminder that Sammy was walking and talking once before.She was puzzled about Sammy's condition too,trying to help alone with concern school staff.She brought a video,10 minute flash back from the past showing Sammy in the 1st grade interacting with school mates and his aid Laura. Watching this video for the first time left me and Alex devastated and ,so very sad.After I thought about it ,I realized how important it is to have this memory -this only video of our son.
Since than we keep watching it ,all of us .Sammy's nurse have been with us for 2years now . Knowing Sammy only ,so very sick all this time -she was ,so upset after viewing this tape it give her completely different angle of our life's than and now-She said she wished she didn't see it.
Who would of known that simple 10 minute clip can bring ,so many emotions?!
Yet ,this was another test and my conclusion is that we are so very Thankful for the opportunity to own this treasure .Thank you
Sammy and Mom

Close call

Hi Fans,
Last night was very scary.Late at night we lost power .It happened way too many times in the past month. We was very lucky that I was still awake and was able to act quickly.
Sammy's hospital bed has air mattress that is depends on electricity.
In a minute mattress was deflated like popped balloon.Sammy end up at the metal frame grasping for air folded up like a soft toy. I woke up Alex ,I was frighten to transfer Sammy on my own in the dark.Alex transfer Sammy in to our bed .I found my self covered in cold sweat.
It was close call,if I had fallen to sleep it would be tragic .All day today at work I could not shake it how could I pass beyond this kind of situation?! ,that on one hand is out of my reach on the other I would always blame my self that I should have been awake.
Its very hard to come up with better ideal than installing generator in our house.I know it is costly but I'm afraid that we have no other choice with family friends and G-d help.Sammy's bed,feeding pump,suction and many other life supporting equipment depends on electricity.
No we just have to figure out how to do it?!
This would be yet another challenge,but we will think of something it would not be first or last time to get creative.
Sammy and Mom

Bye Bye Birds

Hi Friends,
As we mentioned before that at our door steps on the column we have a nest with Birds. Two baby's just flew away the other day.They stood on the edge of the nest and Eva was ,so scared that they will hurt them self's. Ready to come to their rescue she watched carefully. I ask her why did mama-bird made 2 nests one across of each other on the other column? Why was it empty?
Eva said -Mom ,Hello?! Its their summer home,don't you get it?!
Every time ,I leave our home I look at empty nest and wonder how similar our life is to birds,just like them we feed our kids and care for them till they are ready to spread their wings on there own.
Will they come back next year? We hope ,so .Even know that we had to clean messy floors below the nest ,it was beautiful .
Sammy have completely changed from day to night.Day time he gets more medications and that is why he sleeps during the day. We are the ones who must work around his schedule .I get to sleep ones in the few nights uninterrupted. But who is talking about us?
Sammy is definitely had declined again it barely noticeable ,but I know .
He love spending time in the Family room in the evening .His bath time I try to increase as much as I can,he is truly enjoying water.
Eva is leaving on short vacation with grandma tomorrow. It will be very quite ,I know we already missing her.
XOXO Sammy and Mom

See it,deal with it,move on....

Hi All,
Just came across of an expression ' emotionally not available' -Ha, that is exactly how I feel !
Numb.
Trying to get my physical strength back , I went back to physical therapy,so is several members of our family. Sammy is getting bigger he is very tall / 5 feet/ and 100 IB.
As he growing bigger ,I fear that I'm not able to handle his weight by my self .
Tonight Sammy was sleeping with us,thunder and loud noise is scary.He did not sleep most of the night ,I was able to see closely over night that he has increased seizures .We will have to adjust his medications right away, I just wanted to keep him comfortable.
I have pleasure to meet many ALD families that is going through same tragedy of loosing a child as we are.Place that you never want to visit.
Some had lost their boys ,some still have a hope to save their life.
I know all of this families are very strong-you have to be! Weakness is not permitted-
its the worst possible quality you can have any way. I am a fighter -always has been ,always will be that is why I think I like boxing for my exercise ! I swear ,some of my ancestors must have been pro fighters.... You can probably sense that something is cooking ,it never a damn moment.I had to come up with a certain mo do:
-See it, deal with it ,move on.....
XOXO Sammy and Mom

Chance

Hi Friends,
Yesterday we had a pleasure to hear Sammy's voice.For the first time in 3 years.
His voice got ,so much deeper .We heard him laughing not just smiling.
I don't know ,if we cry because we heard him ,or because it was so sad?!
Our angel is having more stiffness problems and seizures seems more random and frequent.
We take turns /literally / to dive in depression when I'm OK, Alex is down.
It takes every living cell to push my self and keep going.Other stress seem ,so pitiful .
Every days commotion and minor incidents is nothing next to this few past days.
Some how there is silent feeling of Sammy leaving us in one point,but no one will admit it of course we still believe in miracle.May be ,Sammy has better c chance for a miracle as long as we believe in it,so we do.
XOXO Sammy and Mom

Focus

Hi All.
Not much to say.
Just had difficult time to face reality,the fact that Sammy had another big decline is real.
It takes a long time to justify and assess the future . Its clear that Sammy's lungs are not 100%.
Will it ever be? His movement and responses are weak , it seems that he is in a cloud.
Last night I took him in to my bed,he slept most of the day I knew that he would be up all night and scared being alone in his room. Instead we stayed up late and he felt safe.
Early in the morning I give him long bath, face mask ,exfoliator ,nail buffs, hair -the spa !
He enjoyed every moment making happy sounds-it makes my day even know I have to work today.
I learned how to move on in many situations,overlooking small things-it helps me get things done and as long as I achieve desirable end result I'm happy.Focus on the big picture -end result is my task -leave everything else behind. Don't let anything or anyone to slow you down,
brush it off -let it go.
Interesting enough ,there are many heartless people that I have to deal with,who would lie,
try to make my life difficult the only thing they don't understand is that - Nothing can hurt me anymore - I am numb.
I wish every one of our friends and family have a great summer, even know this cotton trees driving me crazy-so much fuzz-Yak!

XOXO Sammy and Mom

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

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

Just Tuesday

Hi Friends,
Sammy had a visitor .Our Family's friend and Dentist Yulia came to visit.
We were concern about Sammy's teeth condition and as we expected he has few loose teeth.
It is something to be cautious about when we do his mouth care .Otherwise ,he is doing fairly well.
For few days now we have seen less activity and sadness.He still likes to listen to TV and Music.
Most enjoyable moments for Sammy is when we take him to our bedroom were the whole family ends up on our bed-watching TV.
He gets million kisses a day and many 'I love yous' from every one ,he is our angel our special boy.
Sammy and Mom

Hold me Mom

Hello Friends,
New Year started with a new Hope.
Sammy has been alert and more active than before.
Its nice to see the reaction to certain words or jokes.
Tonight, I had held Sammy just like I use to, when he was a baby and his tummy hurt. He smiled all day when Grandpa was talking .
We know that Sammy is definitely hears,reacts ,understand. I also realized today hat as long as he hears his Family voices -he is not scared.
His Bath time was pleasant as usual ,as soon as I said 'Who is going to take a shower?' Sammy made a loud sound responding to it.
Otherwise , we trying to survive without nursing help from hospice now.I would not apologize for Sammy surviving beyond prediction its kind of ridiculous to even have this conversation .

Good Night, Sammy and Mom

Happy ,Healthy-2010!

Hi Friends,
Wishing All of you Healthy.Happy New Year.
I was sitting and thinking what to wright positive?! On one hand things are getting more and more 'interesting' on the other ....Well, I just wanted to reiterate that its easy to wright negative its all around-you try to find good in darkness....
It's not important that we keep loosing home help ,for example last week we learned that now our hospice will only visit 1-2 times a week for short visit-why?! I guess we have been on the program for 1 year....The important in this picture is-that Sammy is fighting and biting ALL the odds ,so far.
Its mind blowing that according to his initial diagnosis 2 years ago he had only 6month!!!
Our champ is stable! We have to constantly think ways of making adjustments for a long term now. Few days ago I was asked how much is Sammy's weight? The truth is we can only guess.He gotten ,so heavy that I can't lift him alone. We hope that one day we will be able to visit Children's Memorial were we will be able to weight him for real.
Sammy is Ok. He will make sounds if he is alone.He knows when I'm home-always. How can he sense this? in the morning ,he will give me a smile and stretch and I will talk to him about everything. I would tell him what I have on my mind and he will listen .He waits for his kisses after morning wash routine and than he knows that its time for his meal and Moms coffee.
Its all good. Believe me we don't need allot -its the 'stuff' we want.....
Sincerely ,
Sammy and Mom