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