Past ,Present,Future...

Hello Friends,
Just a few words on Sammy's weekends. He is relaxing after busy week. With help of additional assistance on the school bus Sammy is able to continue going to school. He recognized his older sister Marinas voice yesterday-he was all smiles when she came to play. He is very sensitive and knows exactly who is near his bed. He is able to tell apart all the family members even know I ask every one to identify them self's.
Sammy like to listen to his favorite TV shows and music.He specially enjoys freshly washed bedding after bath. Sammy would smile when Dad would come in ,smell his hair after bath and Say who smells good? Who is such a beautiful ,clean boy?
Remembering past good days ,every minute of joy this boy is giving us in presen time and try to stay strong for the future....
XOXO Sammy and Family

Little Giant

Hello friends,
Our little Giant is close to hefty 75 pounds now, I would not even attempt to lift him . Man of the house comes to our rescue when bathing or transferring to wheelchair. Sammy's skin is flawless ,when sleeping you could never guess how sick this child is. We also think he grew taller too, after all that what kids do. It's amazing to see how much courage and strength this little boy has, day after day fighting for his life he moves on beyond all the commotion and worries that we deal with . For us meaning of 'for better or for worst' is real,you just simply don't ever give up on your loved ones,keep pushing,keep praying ,keep it together-you are it!
Have you ever ask your self a question how much care and love can you give or can get if put in similar situation? Are you ready to sacrifice everything ? Does person by your side shares same passion ?
XOXO Sammy and Mom

Shifted...

Hello friends,
Sammy is comfortable and we know can hear us ,but cant respond. He loves when mom crawls in and stay right next to him. Lately track of time became impossible. It seems that my time is not in anyway reflecting a clock. Many times I loose track of time and not realizing where I'm or what I was suppose to do. I never thought that I will fall in to such deep depression . But unfortunately it happened slowly . Many times I will crawl out off bed after getting up all night to help crying all cured up in seizure Sammy. I have been ,so confused and can't remember a thing,so writing down stuff helps. It's so weird how my pace changed and inability to concentrate or competed simple task took over my life.Not able to do anything in the house ,even laundry has become a burden ,my family had picked up my chores and responsibility for a huge amount of work I use to do at home.I can compare this to a motor that shifted and will brake any minute if doesn't get oil and repairs. Enough about me....
Sammy on another hand had some what stabilized,needless to say after a huge decline over holidays. He still attends school just few hours a day,but it's what keeps him connected to the rest of the world. He is acompanied by an adult at all time when is driven to and from school and it's Ok.Every day he brings such a happiness when we see him in the morning .He is our little angel .
Sincerely ,Sammy and Mom

Our 170 TH Blog...

Hello friends,
This is our 170Th blog-post. Its hard to believe it has been that long.
You probably know this that I have been blogging not as frequent as before. The truth is ,there is not much to wright anymore. Even know we are still optimistic many other feelings are on the way now. Foe example - mothers guilt not being there 24/7 to care for Sammy around the clock,constant worry about administrations of medications ,oxygen equipment for breathing and tube feeding requirements while at work, not being able to concentrate ,constant fear of something happening while mom is at work. Will the other person be able to make right decision ?! I know in my heart that Mom is the only person that can make child fell better just my touch or kiss. Sammy knows when I'm near him -his breathing gets deeper and lips move as if he is trying to say something to me. I hope that I can be near him as much as possible to ease his seizures that some days are ,so painful and frequent.
Soothing his pain and comfort Sammy is our challenge everyday now. Its not hard to recognize new symptoms and inability to move at all by him self or to hold his head while sitting in wheelchair. Looking through pictures/ even from few month ago /realization of Sammy's decline is getting to be too much to handle .Rapid change and exhausting all possibility's to stop this decease leaving us wondering what else can we do to help Sammy.
This is our update our Dear friends.
Have a great night, I know we will try ,Sammy and Mom

Diet for Sammy?!

Hello friends,
I have not been blogging much lately. There is not much to update our readers with.
Sammy has been having many frequent seizures .We cant see much change but its noticeable for some one else who visits rarely. His decline has been consistent in the past few weeks.
The situation that we are dealing with is not knowing what will accrue next.
We also recognized minor changes in Sammy's breathing pattern ,so we decided to have exigent unit available at home just in case Sammy would need it at any time .
Mom have had her share of problems in the past weeks,trying to stabilize in return to work is the ultimate goal for this week.
Otherwise , we have been enjoying evenings together by TV. We would take turns to hold Sammy ,so he is included in our family time sitting by fireplace snuggled in a warm blanket .
Yesterday we realized that Sammy had gained allot of extra weight.He was pretty hard to lift for bath time. So in near future we have to recalculate his calories intake or may even put him on short diet?!
XOXO Sammy and family

Doing our best...

Hello everyone,
You probably know this that I blog only few times a week lately. I guess feeling of helplessness is not leaving us. It feels that circle is tightening around us and everyday is harder and harder to catch a break.Even know we are staying positive ,it become obvious that Sammy's condition rapidly getting more complicated . Frequent seizures, medications around a clock ,regular hospice visits became a reality .
Today Sammy went back to school! Yep! our 2ND grader is back !
Its mind blowing ,how much care, learning,activities,therapy,'touch-feel' lessions Sammy receives at school. Its such a big deal ,Sammy loves school!
As per us parents,family is being very hard to deal with Sammy's decline, but we have to treated as' it is what it is'. Doing our best at any point of Sammy's illness his condition worsening only makes us love him that much more and making our family that much more precious and closer.
OX OX Sammy and Family

Continue fighting Sammy!

Hello Fans,Happy New Year!
Its amazing , we made it to 2009! The fight continues on! Sammy is here with us even know he had shown consistent decline in his condition in the past few month.
Our family is together again for holidays. Its the best feeling in the world -when all kids are home ! They bring such a special unique energy,something we have been missing in the past year. Its ,so nice to see how different and how similar they are. Now more than ever I feel that they need each other as brothers and sisters, it is so important to know that you can find a friend and help from a sibling,they are there for you no matter what happens.
I find ,so hard to get up in the morning. Wondering off to another places,forgetting tasks, not being able to concentrate and extremely low energy has been part of my daily living lately.
Sammy have been having troublesome days. Cramps,seizures like activity has been consistent .
He must be monitored closely with severe pain episodes.
He always know when I'm close. Hes breathing gets heavy and he is trying to say something but he is not able to.
As we continue to believe ,we know that it's never too late for a miracle!
Everything can be turned around if G-d is considering to grant us this wish.
We hope this Year will bring much Happiness to you and your families, best of luck and Health!
XOXO Sammy and Mom