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