Sammy- second grader!

Hello fans.
Sammy is back to school! The whole entire week , who was talking about school few month ago? We are ,so lucky to live and raise our family in United States of America!!!
I think what happens to a ill child here!!!-there is equal opportunity for going to school,having quality life and being part of Special Education and recreational programs in the area. In Russia there would be end of everything!No chance to save your child's life, no school ,no equipment,no therapy -if you are average citizen!
It took allot of work ,phone calls,letters,no questions,but look at all this medicine,opportunities,programs.
I don't know how to Thank everybody that take care of Sammy while in school!?
He is part of NSSED class in Northbrook,IL.This group of people is putting together a special plan that will meet Sammy's needs!Do you think this would be possible in any other Country?
I don't think ,so!
With all the things that we are unhappy with in this Country-don't sweat the small stuff!-this is the greatest Country to live in and raise your children! No matter what,look at Sammy! Being part of the school,new class ,kids his age is giving him opportunity for future. Being part of reading circle with other kids ,Sammy is getting different kind of stimulation and lifetime chance for recovery.After all,there is only ,so much time after transplant-and this is it!Make a connection Sammy! We are trying everything possible to stimulate and bring back favorite books, movies, toys,songs,places.
Go Sammy.Sincerely Sammy and Mom

First day of school!

Hello everybody,
Today was very exiting day. It was ,so crazy . Everything that could go crazy -did!
Sammy had his first day at school. It was loud! He is use to quite and this is a great change for him. Child should be part of high energy and busy schedule.Sammy always found something to do before ,so it's time to start slow transition back to his old life.
Every teacher and helper was extremely helpful,showing genuine interest in Sammy and his routine. They ask many questions and I was little bit overwhelmed. It was hard to be separated from Sammy but our hero is moving on and I have to let him . Making adjustments to make this transition easy is necessary,not only Sammy started school-he also started different type of rehab .This time it will be only 2 days a week after school. Our Neurologist recommended to look for aqua therapy. This is Mom's new challenge.Why? Because it's hard to find individual lesions for aqua therapy,but nothing is impossible! This is a great suggestion,water will make it easy for Sammy to move and use other muscles that have not being used as much.Have any ideas ? Do you know of such a place -swimming pool that will have one on one sessions in NW suburbs ?
Today I realized that we must look for better solution with transportation options. We have to make some kind of arrangements soon to accommodate Sammy's 'Special Needs' .Van with lift for wheelchair is something that we desperately need .We hope to get some sponsors to help us purchase this necessary piece of equipment. At this point this is allot to think about ,but it's not impossible-it looks like this is another challenge that will keep us busy for a while.
XOXO Sammy,Mom,Family

From strength to strength

Hello everyone,
Sammy spent whole Summer in rehab and now we are ready to move on to the next step-school.
On Tuesday and Wednesday ,mom will visit Sammy's school to help out for the first couple of days of course part of each school day will be spent for rehabilitation.
It has been very interesting few days. Sammy has been on his gym mat and moving around . If you reach out he will use your hands and pull to get up. Today when ask he took few active steps. He has to straighten his feet first and this task is new for him as well as learning how to use his legs .
We will continue to go from strength to strength until Sammy is 100% recovered.
When I think about Sammy's road to recovery I feel that he needs not only human strength.
It will take every visible ,invisible and natural force.Literally just like you would read in Greek mythology. G-d help,water,stars,sun,moon,positive energy,wind blowing to the right direction and many prayers.It fells like the whole universe has to help to create right atmosphere for Sammy's complete -miracle recovery.I believe in our success,I can see Sammy walking,running again.
I was in deep thoughts again thinking about my mothers paternal grandfather.Just recently my sister found more information about him. He was a great speaker and leader in forbidden circles back in 1900. He was Rebe that -had to run from Zhar and police who forbidden him to teach,study or have anything to do with Torah. His last name was Leibovich,but his nick name was-Skorohod witch means -'fast walker' in Russian. He was a fearless leader -very stubborn and man of his word.He managed to hide for many years from police for his religious believes and was never found until his natural death .I often wonder who have I inherited my stubborn strike from?! After my older sister was born , 6 years later my mother give birth to another girl-who only lived for few hours. After 9 month I was born. Was there a 'Special' meaning behind?
My mother did not plan to have any more children after my birth.
Did I have to be stronger than others ?- to be strong when learning and handling my family 'Secret' -that Mom's side was caring mutated gene and passing it along from generation to generation until Sammy was born? The buck stops here! No more bad gene for my family!As per Sammy and many other kids, lets hope Stem Cell research and testing is approved and allowed in the near future. What a ride. Do you have you seat belts on?
Good night ,Sammy and Mom.

Make a Wish

Hello Friends,
We getting ready to start new school year.Sammy will be part of small class in new school.He will be getting some therapy there as well as getting familiar with school program.
We are also going to 'Disney World'!!!!!!!!!!!!!!!!
When we packed our suit cases to go to the hospital-Sammy thought that we was going to Disney World.He was ,so exited! I could not tell him he was not. It is there -that moment I decided -when this medical treatment is over and Sammy can fly -we will go.There was one more moment that just stuck in my head on our last vacation I was seating with Sammy on the beach just before leaving,suddenly Sammy ask me 'Mommy will we ever come back here?I love sitting on the sand and see this ocean.I told him that we will comeback gazillion more times after he get better!
At the end of this month 'Make a Wish foundation' is granting this wish for Sammy-Thank you!
Our whole family 2 parents and 4 kids are going ! We decided to tag alone grandparents to make memories of a life time! We are absolutely sure that this is one in the lifetime opportunity where family will spent 1 week together-in the place where Sammy wants to be the most!We will be able to visit Daytona Beach that is near by -only 1 hr away!
Fantastic Organization-Great volunteers-Wish Come True !!
Thank you 'Make a Wish'! for this fantastic trip! Thank you for making a difference!
XOXO Sammy and Family

grasshopper-the hugger.

Hello everybody.
I have been calling Sammy a grasshopper. Not only he lost weight and got taller,he also has longest legs- it won't be long when he catches up with mom.Sammy has been very active as soon as he is put to sleep. He rolls over ,pulls him self up,stands on his knees , mumbles .
Since Marina/Sammy's older sister/ teach him how to hug again-he has been giving hugs to everybody.Tonight putting Sammy to bed I came out with a funny tail -story about Sammy - grasshopper . I had fun making up and telling the story and Sammy was listening. In the story there was allot of hugs for friends that was feeling down and funny incidents that made everyone feel better. At the end Sammy reached out and hugged me showing that he didn't want to unlock his arms. I thought that no matter how much he got out of this bedtime story -we boned and had a good time. Fun and laughter was always big part of our lives and we going to keep it that way. Good Night. Sammy and mom.

WEB

Hello friends, I hope every one's well.
I was analyzing what role each individual plays in Sammy's surrounding?! Is this person truly taking best interest in helping him,or it's a by stander? I came out with many whys and ifs actually making pro's and con's list . I realized that in few areas of his life he needs change.You would wonder what I mean by surroundings? It is anyone that is making impact or being part of Sammy's process to recovery.
I found some strong and very weak links in our team.Slowly with time we will replace move on to different options and people,but before it happens we must make sure we are on the right track.
I realize that our team -is what make us stronger. I want -to build a 'WEB' around Sammy -that is supportive,encouraging and optimistic! I don't ever want too look back and say there is something I could have done back when where.
We will be looking for dedicated people who understand importance of encouragement ,positive thinking, going extra mile to achieve desirable result.Believer's in Sammy's ability to recover and give him a chance to rebuild his self-esteem will watch 'Miracle' -I truly believe Sammy CAN and WILL recover with strong support surrounding him.
Can not even tell you-now much we appreciate- each of your prayers and get well soon wishes .
Almighty's Blessings,right balance in life,step at the time will helpto find map to recovery.
Like on every adventure you need to get a map ,you need useful links and right people -that you can trust on this difficult journey to full recovery for Hayem Shmuel ben Chana.
Have a great night,Sincerely Sammy and Mom.

Hugs and kisses

Hello fans,
In the past week,we have been struggling with feedings. I knew that something is bothering Sammy,but could not quite point out what. Since he is non-verbal /most of the time/ it becomes more difficult to determine the cause. So we started our guess game and finally with help of our Doctor and minor adjustments in his diet-we determine that it was Stomach flu.
Sammy was so sad and pale for several days that my heart was breaking just looking at him.
Every time we would run in to this issue we want to get some sign from him what it is ,but if we use pictures or other help will he feel no need to start talking again?Will we make it too easy for him?After all he has been saying short words ones in the while-like if I'm feeding him and saying he has to finish this meal- he would say-'No'.
Today was a whole new picture!Sammy feels much better.He was all smiles,reaching out to give hugs and kisses all day long. Just like before he has a decline for few days and than burst of positive emotions-I can't tell you how relived we are to see him happy again.Go Sammy!
Today I had new school placement conference.I'm ,so exited that Sammy will be joining school , new classroom and meet his new classmates soon. I have previously met NSSCD nurses and more staff that is working hard to insure Sammy's comfort in school. I was pleasantly surprised to see genuine interest in 'What can we do to make a difference?'. Very exiting!
Sammy's older sister will be going back to collage soon -she is the one that demanded her hugs and kisses from Sammy,so she persisted to re-teach him how and now Sammy mastered this skill ! It's is amazing how far we have come from beginning of this year!Thank G-d for this Chance -we will be OK.Mom's next step is to start re-building Sammy's self esteem ,so he can also help and want to get better. XOXO Sammy and family.

Fairies?

Hello friends,
Today I observed something very interesting.Waiting in the doctors office with my older daughter Marina and Sammy we observed that Sammy is looking in the air making a slow circle.It's as if someone is making him follow an object with his eyes ,but there is nothing for our eyes to see.We just looked at each other and I went with my usual first feeling that came to my mind. I thought that Sammy sees something we never could-that children after certain dramatic experience have different abilities to envision different world.It's as if he is following dancing Fairies that are making circles in the air.Weird? I don't think ,so.
Every one of our children that chose us to be their parents -are very unique in their special way. Why do I say that our children chose us? Would you say that we chose?
My perspective on this subject changed not too long ago.It's just a feeling I have that we make a decision to have a baby and they chose to be our children.Every one of our kids is giving us different perspective and appreciation for life .We grow with raising our kids and with difficult teenage years -we never forget to tell our kids -what our parents told us when we where teenagers and give hard time to them-'I hope when you grow up you will have a kid just like you'-for some reason this wish always reaches it's destination!
For me many thing in my life is mystery.I know for sure that we pay for our ancestors mistakes .
In many families ' secrets' will not reach immediately following generation it might come out on great grandchildren-just what I think happened in our Family. I always wondered why on my mom's side we have not had boys in 100 years before Sammy's Birth and Sammy's boy's -cousins that are same age or younger?
If we all have 50/50 chance to have boy or girl that odds would have to be fairly even?!
What do you think? Than why my mom's side family had to wait for Century?
Sincerely ,Sammy and Mom

Chosen?!

Hello friends,
Another deep thoughts how our life's changed overnight.I'm firm believer that G-d is with us every step out of the way.I also sense that this task is given to 'chosen'-weak -could not handle this life experience. It feels that we have been trusted with most difficult task any one can ever endure in their life time. This precious little people -are G-d's angels and we are helping our kids to go through and cope with this devastating illness. I do believe that as we move alone to Sammy's full recovery I have been getting come strength -when I feel tired, I have received guidance when I feel lost, I have my intuition when something about to happen.
Today was no different. I was going to sleep in Sammy's room later.
Even know I was not done with my chores ,all of a sudden I got the urge to go to Sammy's room immediately,as soon as I walked in Sammy got sick and needed immediate assistance he was vomiting . He was laying on his back and could not turn to the side by him self.
My intuition has never been wrong. As I yelled for help to hold Sammy ,my family member's could not believe 'the timing'.
Working through many new challenges with feedings and much more-we are still moving forward to our destiny living unimportant stuff behind -picking our battles. I do believe in destiny,but I'm a firm believer in our energy,prayers and positive impact on our life's.There always something you can do to improve situation.Rather that get my self sad,I know I can help another mom or family in the ALD blog-sharing our experience -providing our e-mail address to another family for help.Knowing that you can share resources with someone not as proactive gives me more reason to be strong and help others to fight this illness with passion.
Sincerely Sammy and Mom.

Hew study -new hope

Hello friends,
Just recently we came across some new study. Dr Steven Goldman ,PhD in neurology of Rochester University had completed a study that shows some promising results in curring ALD.
"For the first time ,researchers appear to have cured a similar disease in mice by the injection of human stem cells designed to rebuild the sheath of fatty tissue surrounding nerve cells that is lost in inherited deceases such a Adrenoleukodystrophy..."/www.independent.co.uk.com July 5-08/
First time in ages new hope in fight against 'Lorenzo's Oil' decease.
It's not clear what cells can be used!? Does it have to be genetically matched-like Bone Marrow Transplant? Where can we get it? Can it be donated ? Do we have to think about having another child though genetic clinic to save Sammy?How long will it take to introduce this study in to practise?At this point we will make room for another baby and welcome newborn to our family- if this is the only way to help Sammy.
Do you think it's a crazy idea? You will be surprised what parents will do to save a child.
I will be waiting to hear from Rochester University after sending e-mail to this researchers.

XOXO Sammy and Mom.

Planting a seed

Hello friends. We are getting closer to very important date for Sammy-his 6 month anniversary since transplant. We were told by Dr Marjo van der Knapp from Netherlands,Amsterdam on conference in DeCalb , Illinois that Bone Marrow Transplant is usually starts working by 6 month from transplant. We have been seeing very slow -but consistent improvement by Sammy in the past . We have great expectations and hope for 6 month mark.
Going back to our hero Sammy -I have been working on Sammy's potty training.Every morning same time we put Sammy on the toilet to get him on the schedule . I will eventually add 1 more evening toilet time. By doing this I feel that it could become routine in the future.
I call this process -planting a seed.
We insisted on Birthday celebration in our home for grandma past Sunday. We feel that all of our children was brought up with friends and family surrounding us.We always have people over,entertaining all the time and this was great reason to celebrate -LIFE!
We had ,so much fun that day and Sammy was very comfortable and also,celebrated grandma's BIG Birthday. Since we are talking about a lady number is not important and not up for discussion. Happy Birthday Grandma.
Getting ALL the positive dates and holidays from our lives, using this opportunity to unite and share good times with people close to us -has been wonderful outlet for us.
Preparing Sammy for new school year is my next project. Getting everyone in the family agreed that he will be OK!, in school by him self-is the challenge now.
This word challenge has found constant use in my vocabulary lately . Life -is good. Challenges -is part of it! Together we will overcome ALL the obstacles -one at the time!
XOXO Sammy and MOM.

Alternative

Hello friends,
First of all we like to thank each and every one of you for continues support and encouragement in you comments from this blog.
Answering some of your questions about my believe. Of course I believe that Sammy will fully recover. There is ,no doubt in my mind that he is aware of what is going on. He is a super sensitive fellow and will sense every bit of false in my act. I can't afford to show any weakness to him or my family. From time to time Sammy is doing very well,some other times he is not,so it only natural for me to question and analyze situation, try to find every possible way to help him take another step toward recovery. This situation is testing every minute of my life experience,every thought,takes every breath ,every cell of my body. I do think that every member of my family deals with this in their own way and I know that we have a mountain behind us -as strong,as solid as our family union.
Today Sammy went to see specialist.Doctor that have not seen Sammy for 6 weeks. He said that even know Sammy lost some weight and still has a way's to go he look like a different kid now. He looks and connects allot better than before. Sammy finally started his Acupuncture Thanks to fund raiser he is able to attend for 15 cessions. -today was 3rd session in the row and final day of assessment how he responds to the treatment after transplant. As a result he was able to stand on his feet ALL by him self -for few seconds- he was ,so exited ! He will do it again!
After million phone calls and pleating and bagging we finally got new Gate trainer-walker that can support Sammy while he try to take steps.
I'm always looking for new ways to get Sammy interested or challenged . I try to keep an open mind to alternative medicine and any other therapies that is known to help. I do think that more things we re-introduce to Sammy -he might recover more from his previous activities . I think if we target anything that might bring memories back it can help him recover quicker.