MRI report.

Hello Friends,
We still in the hospital ,but in much better set up-we have our own room now and great bed.
Today we find out results of latest MRI .
We wish there was something else we can do .The results came back allot worst than was expected. He had a major changes in nearly all areas of his brain .
This time around we learned that it has been extensive white matter involvement compare to Last report from October. We appreciate painfully honest report from doctors -of Sammy's actual state. Its better to know what you are dealing with without masking the reality .
Sammy is pretty comfortable at this point. We will be going home this evening- its so much better home. Surrounded by friends and family we will have to figure out how to move from this point on.
Every day ,hour,minute,second spent together matters!
Sammy will feel our love ,warmth,devotion that will give him peace, comfort , positive energy and no one can save him from hugs and kisses.

Sincerely, Sammy and Family

Baby dont cry..

Hi ALL,
Sorry for such a slow updates. We are in Children's Memorial Hospital again as of last night.
Sammy was in severe pain yesterday-all evening .He could not get comfortable no matter what we did.
All of his doctors are here and will be able to determine what is going on.
We spent 5 hr in emergency room waiting for available room. Coffee sounds fantastic for me this morning after less than 2 hr of sleep.
I feel that if we hang on little longer ,we will have Sammy's medications adjusted to comfort level and should find out what really is going on. We got a wonderful nurse name Miranda! She is great,hope she is back tomorrow.
Sammy is resting comfortably and I'm right next to him on a rocking chair. We hope to catch few more ZZZ that's if the baby on the other side of the room will let us,so -Baby ,please don't cry.......
Sammy and Mom

Happy 20th Marina!

Hello Friends,
Its weekend again.
Sammy had more visitors friends and family members. Hes seizures have been more frequent this week. He responds on music ,touch ,my voice with his eyes . Moving around has become more challenging lately. While holding him last night ,I realize that he is unable to move his hands on his own anymore. Its ,so sad to see this beautiful young boy suffering that much. I wonder ,that beside his body how much he knows ? I hope that at this point he is at piece with his sole and takes day at the time like, we do.I'm thankful that/ as weired as it sounds /because of Transplant treatment Sammy by passed one of most difficult stages -realization of drastic change for worst .
Helpless ,we just love him and cherish every minute spent together.
On the brighter side our older daughter turned 20 years old on Feb-17. She is home for weekend for collage . When she walks in and starts to play with Sammy -he recognizes her voice.
Today I wake up with one question on my mind how did we get to this point? Sammy's decline is obvious and progressing,what else can we do to help?
XOXO Sammy and Family

Breath of a fresh air....

HELLO Friends,
Its weekend again. Sammy got to sleep a little longer. His feedings take up to 2,5 hours each time ,so what ever we can fit in in between the feedings is great. We took a long walk outside and even know it was not that warm -it was a treat .Mom has not been getting out much ,breath of fresh air felt great.Its amazing what a difference just a walk outside can make! Its that simple.
Today Sammy got an extra treat-mom got hold of Sammy's nails. He had his nails and toes manicured! He was trying to pull back resisting somewhat ,but since I said that girls don't like boys with untreated nails -Sammy give in. After wards cream on his feet must felt good he even made some sounds for more massage.
I took many things for granted before,I'm not talking about material things-I'm talking about being able to have everything I ever needed and not seeing it right under my nose!As a result ,I do understand it better now,I can appreciate simple things in life -like being able to watch a movie with my family, being part of a friends life,being able to fully enjoy a shower in the morning,great book or just a conversation with my girls. Trying to catch up with my self , I can see that my 'clock' does not match the traditional one. The days are very long and like in the slow motion -like old movies. Other than that trying to find balance I will continue focus on getting strong enough to return to work soon.
Have you ever thought about how much worst our situation is that anything person can possibly go through ,deal with? No matter how you look at it there is nothing worst than hopelessness ,desperation of a parents constantly fighting for dear child's life....
Every one has to go through difficult time in life and why G-d had chosen this one for us is a mystery . We will keep loving,praying and hopping for a miracle as long as we have Sammy -he is our Hero!
XOXO Sammy and MOM

1 year after Bone Marrow Transplant!

Happy Second Birthday Sammy!
Its hard to believe that year had passed by. Ever know treatment did not stop progression of Sammy's disorder there is no regrets. In my resent conversation with Transplant doctor -we discussed the importance of study on Sammy's Transplant case as the first ALD case in Children's Memorial. It was not only chance to save Sammy's life ,but an important study for future cases on ALD boys. Sammy did not get full benefit of this treatment -but he made a difference for the future,yet another good deed .
Today brings a certain definition to what this whole year meant to us and what this family has been through -every one of us.Trying to shad some lite on this life changing experience we realize that in the past year we recognize how much we mean to each other and how precious ,fragile days of our life are. Trying to express our feelings through this blog-we hope to help our readers to understand our feelings and thoughts bringing out questions that arise during this whole process.Getting though today -we celebrating life & Sammy-our Angel who keeps fighting!
Cheers!
XOXO Sammy and Family

Keep it real!

Hello friends,
Sammy is home from school. Every morning when Sammy wakes up,we tell him its time to get ready for school. Every day after bus comes home grandpa takes our angel for walk outside. He love being outside .
Our days are very different. Its just like a zigzag-up and down. We never know what tomorrow will bring that is why its ,so important to live our life's today.
Its hard to believe that we are approaching 1year anniversary from Bone Marrow Transplant!
Its is a reality for us to see Sammy declining more each week some times adults have very little strength left -what is important is to Keep it real! We are doing our best.
XOXO Sammy and Family.