Life is Not ,so simple....

Hello Friends,
I was thinking what to wright about .What came to my mind is a story. When woman came to Almighty and ask him for help saying ' G-d ,-I did everything right in my life , why did you send me such a challenge,test ?'Why me,why my family?'
Almighty said: Life is not ,so simple.....' I will help you only on one condition,if you go visit 10 families of your choice just like yours and see what is going on there.' Woman did just what G-d told her . After a while woman realized that what she was upset about was 'Nothing!' compare to what others are going through.....
She never ask for help after ,instead she had to learned how to deal with her situation.
Sounds familiar? Is your challenges looking difficult lately or they just became 'a piece of cake?'

Sammy had some great days . We learned that while held he Loves getting back massages.
To help him with back we try to change his sides when he is sleeping,so Sammy is not always on his back,but this is the first time in many month when Sammy is looking weaker than before. He is not able to move ,but will cry if in pain.It is an adjustment . We feel that at this point all we can do is comfort and give him love and affection everyday. We are very lucky to have Sammy with us and thank G-d for this gift.
XOXO Sammy and Mom

December 21

Hello Friends ,
Today is 1 year since Sammy's initial diagnosis. It was bitter news,but we finally find out what was really wrong . We have searched to find an answer and there it was .
It's hard to describe that feeling when your blood freezes in your veins,when you can't hear your heart beat anymore,when you feel adrenalin rush to your temples-all in that moment -when you hear that your child has 'Life threatening condition'.
On the positive side with correct diagnosis -in the past year we could research,weigh our options and fight for Sammy's life ,something we could not do before. We are lucky in the way that ,we have had an opportunity ,options ,possibility's to help Sammy to survive. And now we give our trust and future to Almighty, creator of us all. Looking for a miracle and further instructions ,we praying for 'His' help to turn this illness around and help to balance and recover Sammy's body and sole.
Sammy have had an exceptional day today.Its first day of Hanukkah ! We had many visitors today and Sammy enjoyed all the attention.
Sammy's had attended local school for Kindergarten and 1st Grade. He has many friends that ask about him. Parents ,Teachers,Students all ask Eva how Sammy is doing. Few days ago we got a visitor with a Special 'Surprise' .About 2 weeks ago she visited us last time and could not stop thinking of us she shared her visit experience and send a letter with update on Sammys condition. When she came in this time she handed me envelope with many signatures - Get Well wishes and a gift . We could not believe how many people thinking of us. We are ,so fortunate to have such a special school staff and family's surrounding us!
Thank you! Happy ,Healthy Holiday's!!
Sincerely , Sammy and Mom

Salute,Grandparents!

Hello friends,
Can't believe it winter again. This whole year has been ,so long and ,so short in the same time.
We get regular visits from our hospice nurse . She is always ,so cool and knowledgeable ,but this visit was little different. Every declining step and realization of it has been like a snap shot. This moment when I heard her short report to Stem Cell Team on the phone while getting further instruction from them ,she said that Sammy has declined allot in his condition since 4 weeks ago.
There it was in my face 'reality check'-undeniable professional opinion about Sammys present health situation. Its is a fact ,but 'Miracles' usually happen in situation like this ! We are ready for one!
This whole year has been difficult not only for us as parents,but for grandparents even harder. I just wanted to Thank my Mother and Father-in-law ,who has been caretaker for Sammy everyday of the week when I work. This two people has dedicated their whole life and to help us caring for Sammy and other kids at home. I can say that without their tender love ,care and attention it would be impossible for us to survive. We wish them love,to be healthy and Celebrate their 50Th wedding anniversary in few years with all Children and Grandchildren present in good health!Salute !
XOXOSammy and Mom

Rock-A-My-Baby...

Hello fans,
Sammy had very busy week .Going to school getting A's is not easy you know. In any case he is pretty tired at the end of the week and enjoying just relaxing ,spending time with family .
Yesterday when I was driving from work ,I had a urge to pick him up . I though it would be very difficult ,because Sammy does not use his body ,hand or legs anymore like before.His body movements rare and more of reflex ,not directed. When I managed to pick him up and give him big hug ,we set down on the couch and Sammy was on my lap in the rocking baby position.
I felt that this was it! It was that one piece of puzzle that I was missing. We both enjoyed each other company up close and personal ,that evening I've decided to do this every evening.
Yesterday, Sammy got a care package with gifts , our friends from synagogue send beautiful Holiday items -Thank you friends!
I like to use this opportunity and Thank our countless friends from our Temple and personally
Rabbi Shmuel Notik ,Rabitsin Shternie Notik and whole Family for dedication , visits at home, hospital , attantion,help,prayers through out this long year -We could not do it without your help- during such difficult ,demanding time in our life's.Thank you.
Sincerely Sammy and Mom.

Helping hand

Hello fans,

Today my blog will be all about just few people that have been helping through this challenging times in our lives.

Organization 'Chai Lifeline' reaching out to family's in crisis with a mo do 'Fighting illness with love'.

Our caseworker Sylvia has been helping us from very beginning. From hospitals visits to providing meals ,from getting us out of the house for enjoyable game or dinner to arranging gifts for our kids on holidays. The list can go on and on .Dedicating her time ,piece of mind and knowledge she arranges many things to comfort family's in need. She had helped us arrange and connect to right people for our respite care aid and help to pay for it.

When I look back ,I think of her as a' Giant'. It would not be possible for us to reach this level of comfort and state of mind if she did not take weight off my shoulders by guiding us in the right direction .

We Thank you-'Chai Lifeline' and Rabbi Shlomo Crandall-Regional Director , and our special Sylvia Abramson our tired less Case Manager.

Sincerely Sammy and Family

Spark of hope

Hello friends,
Today Sammy had a very good day. He was in school and after took a long walk outside with grandfather.When he got back home he made many happy sounds and look like was trying to communicate . There it was a tiny spark of hope ,may be it will happen ,may be Sammy's illness finally will turn around and he will be OK? He is very strong and I hope that we are doing everything possible to help him fight this condition as long as he possibly can.
One day last week I found my self rundown . I realized that slowly over course of this long year I was falling in to deep depression . Its time to pay close attention to this condition -who needs unable mom? Today I was awakened by Sammy and new hope.
When Sammy was making sound again ,it brought back many memories .It was just like a movie clip from our life before Sammy's illness. He use to make funny faces and make comments that would amazed adults.This little boy understood math before he entered 1st grade.He started to read in 2 weeks before kindergarten. In school he would show amazing ability to study ,his very best teacher and aid Lori had helped him with more challenging advanced math and reading ,so Sammy would not be bored in school. We still have a chance and the only way Sammy will continue improving if we would continue our fight and blind believe in his miracle recovery -no matter what!
Are you with us?! We hope you still with us, everything else does not matter.
Sincerely Sammy and Mom.

Smell the roses.

Hello fans,
Today Sammy is going back to school-Finally! He is ,so very happy there around loud noises and other kids-that is were he belongs. Our school team is exited .Hope he can stay awake for those 3 hr to learn something.
Mom found a new 'Must' treat. I get dozen roses every 10 days to replace old ones. I found it very pleasant to see Flowers in our kitchen vase everyday. I chose them by color,size ,smell.
Our roses must have light pleasant smell,so every time I feel down I can come and smell them.

Sammy's recovery after surgery went very well,you can barely see small marks on his skin from it. Our surgeon Dr Chin is truly remarkable microsurgery doctor in Children's Memorial -Thank you.
We will not visit our Stem Cell Unit anymore ,unfortunately there is nothing else they can help us with at this point. Our pediatrician Dr Gerald Levin/I hope he is OK with me mentioning his name in my blog/ is very best doctor you ever want to care for your child. Our Family doctor is in the same office and we feel fortunate to have such an amazing reception and nursing team -and entire staff -in the same office. Thank you for your countless hours of hard work ,Thank you Jill -our best nurse for all those phone calls and arrangements you've made in the past long year.
We wish everybody Health and Happiness in upcoming Holidays,
P.S. Dec 2007 -Sammy was asked which Holiday he celebrates -he said 'Kwanzaa',so Happy upcoming Kwanzaa everyone.
Sincerely Sammy and Mom

Million kisses

Hello friends ,
We just got a new bed.It's not perfect yet ,but after minor changes it will be good.
All these changes lately have been pointing to Sammy's disorder's progressive state.My thoughts are racing and we have been praying for strength,peace for Sammy's body and soul .There is no questions that his condition is getting worse and lately I have been thinking that every one of us will go one day and only our creator Almighty knows how much time each of us has in this world. We continue praying for a miracle, there is nothing in this world that can change our blind faith in G-d. We believe and trust G-d with our lives,our children, future and our faith in a better tomorrow will be with us forever. We are only able to go on with positive thinking and gratitude for what we have . Belief is our strength.
Sammy is enjoying hugs and kisses.Whenever he feels sad or pain I would come give him a long hug and a million kisses ,he would close his eyes .Its only natural for a child to be comforted by his mom ,dad siblings voices that are ,so very soothing to his ears.
It must be ,so important for him to hear most familiar sounds it give him peace.
We just met our home nurse for the first time.She will be visiting often to monitor all the activities. Pain management is most important at this point-making sure that Sammy is comfortable -has became Mom's obsession.
XOXO Sammy and Mom

Boxing Match

Hello friends,
Hope everyone had a great Thanks Giving.
We started receiving hospice help for Sammy and considering to get hospital bed for better comfort. He has been moving less and needs to be turned from side to side often.
Some analogy came to my mind yesterday. This battle for Sammy's life can be compared to boxing match .Where there is three rounds and we had won one of them and this is the most important, hardest, and final one. Throwing punches and receiving them is part of this sport and it compares to our everyday life.
This was very special time of year when all of our children are home and the house is filled with loud noise and laughter-this does not happened very often.We have had many visitors in our home in the past week and are very happy to see our friends and family .Our home is always open for friends who bring positive energy to our life,who can be here in tough times.We Thank you ALL for your support and genuine interest in Sammy's and our family battle in the past long year.
XOXO Sammy and family

Fog

Hello Friends,
Finally Sammy is better. His feedings and formula is under control now.
He is sleeping more than before taking some naps during day time. He is holding up bravely our little angel and hero.
Not having TV in the house reminded us how much fun we had playing games and telling stories .In every day lives we forget about sharing that important family time without television involved. Even know it's great to watch your favorite program to get away from it all sometimes,still we don't have enough time for each other because you are always rushing to your TV set ,not too miss your favorite show.
We had open up new MONOPOLY game tonight. Let me tell you ,this was great ! We got to watch each other strategic moves and learn something new. Every time we would open up the rule we had missed something .
Before Sammy got sick ,we had at least 1 Family night where we would meet in the movie theater and spent time together-we miss that . Since Sammy's illness -nothing is the same and its ,so hard to figure out if we are the one choosing our future or we are chosen by someone and will be told what to do next.It's very foggy ,and we hope to find our life passage again sometime soon. I'm certain ,that we can only do it together as a family -you will not survive alone ever.
I found that Eva was enjoying the game with us ,but really wished that Sammy can join us too. She stop playing WI when Sammy got sick last year and now when I told her she should play again she said ' It's OK, I will wait for Sammy to get better ,so we can play together again.'
Have a great Thanks Giving -live some room for desert.
Sincerely Sammy and Mom./Next Blog I will share some new experimental recipe/

What a week

Hello friends,
In the past few days ,we had experienced 'technical difficulties". It took few days to figure out why Sammy was in such pain,when I realized that we had switched to different feeding formula with fiber to help regulate his tummy. Today was a first day when Sammy is comfortable again on his old feeding formula ,it was a Huge relieve to see him at peace again. Its very difficult to figure out what bothers him ,he can't say it or show it anymore-times its frustrating and I will turn to my usual friend -intuition.
We had a home visit from Hospice Care. At this point our Doctors had referred Sammy and Family for help with in home care.My only consern is to be able to keep Sammy at home in the same time providing best possible care-outside fasility is out of the question. We are looking forward to meet our care nurse that will be visiting us regularly to insure Sammy is comfortable and pain free.
Just happens that this week is the week that we had 3 broken appliances in the same time!
Our TV,Oven and bar cooler! Wow what a week! I guess there was a reason that we have a full stove too ,not just a cook top-Now I can say to my husband -'I told you ,so! You can't run household with one oven!'
Thanks Giving is a very meaningful Holiday for us .We Always Think and Thank this wonderful Country for the opportunity to find better life here,but association with a beginning of Sammy's illness at this time last year lives a 'bad taste in my mouth' .G-d knows we have allot to be Thankful for ,but why do I have a feeling ,that turkey will not be my favorite dish anymore?

We Hope That your Thanks Giving Holiday -bring family together ones again and bring only positive feeling for you and your families . Stay healthy,happy,thankful and reach out to others in need.
XOXO Sammy and Family

In the moment

Hello everyone,
Sammy have had two great days . He was alert,responded to things better . It was ,so refreshing to see . We all got exited. Sammy's school have been keeping us informed about his day, we are very lucky to have such a great teachers and NSSED staff helping us. Just recently I realized that I had spread out my self thin and had no energy. I started taking vitamins and minerals again .
I was interesting to realize how 'mirrored' I'm with Sammy its seems like we still have 'Umbilical Cord Connection'. I never had to say anything to Sammy he new what he needs to do ,just by me look at him. He seems in his own world ,but comfortable . This is something we can control-his comfort level is very important . Making sure that he knows he is loved, well nourished,cared for this are essential goal for us at this moment. Our life in the past year has been like one bad dream, I still wake up in the morning and think that Sammy will walk in to our bedroom -will sit on the edge of my bed and would kiss me on the cheek -I would ask 'And who is this? -he would reply to me- Your Love ,your Life,Your everything.
Living in the moment enjoying every good moment in your life -is something that comes with experience.
Are you living in the moment? Can you enjoy life to the fullest?
Do you like that person you see in the mirror every morning you are brushing your teeth?
XOXO Sammy and Mom

Holding his own.

Hello fans.
Sammy is finally back on track. I would say there has been some more minor changes ,but overall he looks good , well nourished and seems comfortable.
In his current condition things change fast. Even closest family can see less movement and less reaction to things. He is not reaching out with his hands like before and his other movements seems our of reflexes.
We have seen extra activity in the evenings. When he is put to bed. He moves his lips if he was talking to someone,he would have change of emotions and smiles. It like he is in different dimension sometimes and when spoken to he would zoom back in.
Sammy told me about 1 year ago ,that he can see G-d and talks to him,that he must follow G-d's instructions and he is doing just that.
I know many people ask me if I'm angry? I don't feel that anger will change anything . Instead I feel that this is time that we will trust G-d with his decision and let him do his job. There is a lesson to be learned ,there is a good reason behind this unfortunate circumstance.Every one of us has expiration date -I believe in it.
Holding his own ,he is bringing very special unity and much love among family and friends. People forget their own problems and stay united and strong with us. I said before that this child gives very special feeling when you meet him for the first time ,than you will never forget his face-what a special boy we have. We love doing special things with and for him -he is loved ,well cared for . Tuesday we might come back to school. That's right we are moving forward.
Sincerely Sammy and Family

back on the track....

Hello fans,
Sammy is on new feeding schedule. We are on 3 times a day feedings .Today Sammy went outside for a walk with grandfather . Sammy enjoyed warm bath and was already waiting for me to get in his ears ,nose and trim his nails after . He does not like brushing his teeth and I tell him that girls only like boys with good hygiene and fresh breath.He smiles
He loves wearing his Disney PJ's . For the first time after surgery -few spoons of cream of wheat was a great treat /through his mouth/ he knows the smell and even smiled when tasted few drops of juice.
If you think about what we can enhance for Sammy's enjoyment its - taste,hearing and touch.
Its ,so little and ,so much in the same time-the question is 'How you look at it?' which one is it for you?
XOXO Sammy and Mom

Good nutrition

Hello friends,
Sammy is gradually getting better. He had his feeding on the chair today. No more laying in bed and doing nothing. We are adopting a new way of feeding Sammy. Schedule is not set yet ,but we are getting there. Our goal is to gradually get Sammy to 3 times a day feedings. He is getting balanced nutrition and plenty of fluids now which will keeps him in good shape . We are amazed of his strength.He is a fighter - he is truly a gift ,so every day we struggle to prolong his existence with us -we pray and ask for one more day. Day at the time.
It seems this past year was like a bad dream -everything that happened to us seems in a cloud and we wait when sky's will clear out and sun come . We must believe in a brighter future,in our ability to learn from this experience and be usefull to others. We hope that G-d will give us strength and understandig how to move to the right direction , fulfill our mission in this lifetime .
Sincerely Sammy and mom

Plans for the future

Hello Friends.
As of yesterday Sammy is finally home! His surgery went well ,thanks to amazing doctor that took care of Sammy -thank you Dr Chin.
We are learning how to feed Sammy through G-tube. He is little frail and seems tired ,but we know he has a history of bouncing back quickly.
Planning Sammy's come back to his usual routine give us hope for healthier future and many good times with Sammy .Possibility's are endless. It doesn't matter how difficult ,demanding Sammy's care is we are happy to do it as long as we have the opportunity.We can always come up with more ways to get Sammy evolved and active in something else.
We are looking forward to school .Even few hours a day in school give him very positive emotion -he knows that his teachers ,kids, school staff is waiting for his return.
We will think of a better feeding schedule ,so it doesn't interfere with school activities even know that they can feed him there.
XOXO Sammy and family

What's next?

Hello everyone,
Today Sammy will be staying under Dads and older sisters supervision. Mom was send home sick.
This is the first time in almost whole year in and out hospitals mom got that sick . Besides feeling guilty not being by Sammy's side ,it feels good to know that my mother in law will come to my rescue and she raised a great son my husband and my best friend who can care for Sammy just as well .Possible discharge tomorrow its exiting and scary in the same time.We will have to learn how to take care of Sammy after surgery ,new g-tube feedings.
His first feeding went well it will take time to see if he is adapting well to new way of eating. One thing we know for sure this procedure will make eating safer for Sammy insuring proper diet , nutrients ,vitamins. It will also keep his acid reflux under control making him allot more comfortable.
What is next? I'm sure as a family we will be facing more difficult decisions in the future ,but for now we will make sure Sammy is home,well cared for,comfortable and of course 1000000 hugs and kisses.We are looking forward to get Sammy back to school -he loves it there.
Good night, XOXO Sammy and Mom

Monkey by my side.

Hello friends
Sammy had a good day .He got his sponge bath .We had quite few visitors - our old Chaperon Jim came to spent time with us,so is our Old friends from Stem Cell and other doctors.
Its seems to me that we have made some kind of positive impact on people that we meet along our journey.Any one that have known Sammy before or just met him cant believe how much they becoming attached to this little boy. Ones you get to know him you will never forget his face , silent kindness that touches every ones heart-he is our hero .
Our determination , strength and believe in Sammy is contagious .Thank you for giving us new wave of encouragement to fight to the last second of this devastating illness,no matter what.
Sammy on the other hand has a new friend-Monkey by his side. This plush toy is supper soft Sammy like it so much that it has been part of his left arm since he first got it this morning.
We expected to stay few more days until Sammy is stable enough to go home.
Sammy's older sister came from Collage to visit us in Children's today. I could not see much respond from Sammy ,may be it's just medications,I know he can hear her voice.
That is all for today,Sammy and Mom.

It's OK to Cry Sammy !

Hello friends,
Sammy is recovering after surgery. He was in pain and was crying /for the first time in several month we heard his voice/We were,so happy to hear him cry again- nurse thought that we must be 'nuts' -most parents are unhappy about that-I said 'you don't understand if he is crying he is alive!'
He is resting comfortably in his room now. We expected to stay for few days until he is stable to go home. We had an exceptional surgeon and great care ,so far. I'm back to my old routine next to Sammy's bed ,my ' bedside manners' may not be usual routine for most parents staying in the hospital. I was joking with nurse that I check medication administration and everything she will be doing ,so she should not take it personal -its just to be on the safe side.
Sammy had few visitors today including his Stem Cell doctor .I found my self saying 'Hi' left and right while walking through hallways of the hospital - realizing that sadly we are familiar with many staff members in Children's Memorial.
I hope tonight will go smoothly without 'surprises'-honestly I'm pretty exhausted from lock of sleep . We are not allowed to use cell phones on this floor of the hospital,so my only communication is through this blog,e-mail and text massages for the most part.

Have a good night ,Thank you for your countless phone calls and support.
XOXO Sammy and Mom

Red

Hello fans.
Getting ready for surgery. I found some things that might help me somewhat to stay on float. The other day intuitively I went looking for red lipstick and nail polish.I never use red . But I felt it gives me power.To me it represents strength and high energy. Its those little things that help put things in perspective on very stressful days of and after surgery .
Loading on carbs and getting good night sleep/something I have not had for a while/ is important -After all who needs fainting parent in surgery waiting room?
After visiting us few days ago our friends was so upset with Sammy's on going deterioration and swallowing difficulties. That is what triggered latest e-mail update letter.
You can say at this point we have done everything we knew we could. What's now?!
We have to pray for a miracle and hope for the best for Sammy. It's ALL about him .

XOXO Sammy and Mom.

G-tube

Hello fans.
We are back with more updates on feeding tube procedure that was canceled for today. We are Thankful to our Stem Cell Team for referring us to such a great operating Doctor who initially placed pick line and port for Sammy before transplant. Not only we don't feel rushed to make a decision,this Doctor is taking necessary steps to ensure the best possible chances for a successful G-tube placement for Sammy. We had decided to subject Sammy to our only option surgery with more complicated procedure do to acid reflex condition.In this case Sammy can still eat as much as he can solid foods, he likes tasting flavors this is one of not many functions he has left to enjoy.
Sammy has been receiving overnight fluids through IVs in the past 10 days.Prolong administration of IVs carry certain risks too ,so our only other option is to have a feeding tube there is no other way .
As we worry about his upcoming surgery and making necessary appointments ,Sammy has been eating less and less every day. Sometimes its more than 5 bites ,sometimes it's only 2.We have to be extremely careful with liquids.We are still trying,but its too hard to manage it -we are afraid of aspiration/ going in to wrong passage -lungs in that case ammonia is fatal/
This new developments leading us to understand that we are on the right track and today he is strong enough to go through operation and have best possible chance to heal faster.
Sammy enjoyed his bath time. He went back to school today for the rest of the week .He loves school-when I dressed him up I said-'You look,so handsome-please behave don't make girls crazy at school,because next thing teachers start calling me with your usual mischief -just like old times Sammy!' He just made a sound -letting me know he got it.
We have learned how to use precious moments with Sammy and every chance to make the best of it .In my eyes -life is made of moments-moments that you remember the most,that stay in your heart forever. Our challenge is to find strength to stay positive .Recognizing the fact that we have exausted all treatment options and very little depends on us at this point,we can - comfort him,tell him that he is loved,caring for him and praying for a miracle.

XOXO Sammy and Mom.

catch 22

Hello friends .
Sammy says Hello. He looks ,so good you would never guess how much he is going through.
We had recognized few more minor changes in Sammy's condition. He have been having difficulties to swallow liquids in the past week, although he is eating hard foods OK.
He has been more tired and tends to sleep more. Mom had to learned how to connect ,disconnect a TPN- IVs . Sammy has been getting fluids overnight through IVs,because he can't drink and we don't what to get to the point of dehydration we continue with solid foods even if it's just few bits-Sammy loves tasting flavors.Family has to make a decision on G-tube/feeding tube/.It's just too hard . Its catch 22. No mater which way you look at it -there is a risk its a surgery .
Our champ is still going to school. With help of teachers and Spacial Needs team he loves going to school. He is adapting to a new sensory program 'feel-touch'. Every time I tell Sammy ' get up ' you are going to school-he reacts to it.
That is all for today , Sammy and Mom.

In charge

Hello fans,
I finally got my self back on track.
We have few concerns and dealing with Sammy's changing needs. He has been drinking very little and eating much less than before. Occasional IV is needed to replenish his nutrition and hydration. He has been more tired than before.As last MRI reviled that more areas has been affected with deterioration than before. Day at the time. Deep breath.Stay come.
On the brighter side Sammy loves taking long walks with grandpa. He got very comfortable in his sport stroller today.He looked like mummy.Grandma put wool comforter under and worm blanket over him. He enjoyed crisp fresh air outside. When he came home his cheeks looked pink.
When I got home from work I ask Sammy if everything was running smoothly. Every time I leave to work I tell Sammy that he is in charge and if somebody is miss behaving at home he should call me at work. He smiles and some time I even get a giggle .He is probably thinking that I'm back to my silly jokes.We are still believe that miracle can happen.We will always believe that -no matter what! We only invite positive to our life's we have no place for anything else.
I know one day I will get my answer . Sammy is my HERO. He is some one I will always what to be like. He teaches us how to be strong how to fight .
Have you ever had some one you look up to? Some one you admire?Person who's example change the way you see ,experience things in life?
Sincerely Sammy and Mom

Eva-Havah

Hello everyone,
We like to send a shout out to Eva -Havah today she is celebrating her Hebrew B-Day.
We planed to come with Sammy to Temple,but last minute decided to let him relax and take it easy.
Eva-Havah had received a very special gift from Sammy-small medallion with her Birth stone -in the middle.
In the mean time Sammy fell a sleep while listening to child's book on CD . It works too. If you think about it if we have our TV on all you hear is Presidential fight and G-d knows we don't want to add any more stress .
Music has been a great relaxation for Sammy. I try to give him some soft music if he must get up in the morning and also take it away when its time to sleep. Last week Sammy had confused day and night. And I was able to fix it by, adding much more activities and sounds around during day and try to keep him awake and quiting down ,reducing all the noises toward night time.
This is all for today ,we wish all of you well,
XOXO Sammy and Family.

Another possibility

Hello everyone.
We are gathering some information about Sammy's latest developments. Will be sending a file to India. We have contacted and got a reply from a doctor in India that has been treating -untreatable conditions like- MS,spine cord injury,Alzheimer's,severe cases of Diabetes and much more with embryonic stem cell treatment .


This seems to be the only other alternative that might be available to help Sammy.It will depend on how far damage has spread out .Do to the fact that this is progressive genetic condition we must stop demolinating brain tissues - before any other treatment can be considered.
Many questions are still pending . Since our last MRI we will be looking for any opportunities for experimental treatment .We are little more desperate than before.
Getting a new wheelchair helped allot. We have a tilt in space option that is making Sammy comfortable if he is sliding down .
Sammy has been listening to music.We also got new CD player and book on tape from a friend .
Sincerely Sammy and mom.

Small World

Hello everybody.
Today we had another MRI. Spent the whole day in the hospital from 6:20am-5pm.
Besides small unimportant changes we have nothing to worry about right now.Our Doctor ask about Sammy how alert or aware of his surroundings he is?I said that he loves being hugged and kissed .Specially he likes when he gets continues kisses on one cheek.He makes giggling sound and reaches out . It is obvious that no matter what we do or experience-life goes on.

While waiting for Sammy to wake up from anesthesia after MRI-we have met another family that was waiting for their boy surgery to be over. At the end of conversation mom said that her daughter -6Th grader was very worried about her brothers surgery and told her about one brave girl that she met in summer camp that give her bone marrow to her brother . It was our Eva !. When they say 'it's a small world' -it's ,so true .We meet wonderful people along our journey -I'm glad we can appreciate it.
I have very little time for people that complaining . I hope that they can look around them and realize that there is bigger problems that broken nail or rain outside. The question is 'How can you handle your bad mood?'. I know that for me switching to another subject helps .Get busy,get your self useful to others or at least read a great book!

We are in good spirit-no mater what! This is only way we can go on and make our life's filled with joy and love and encouragement to the rest of the family. Life is beautiful-let's not waste precious days ,hours ,minutes . We are here in this world for a reason-let fulfill our program to maximum,let's be-honest ,helpful,loving. Also we like to be helpful to one another . You have to give .Just little something from you to another human being or community.

We enjoyed beautiful Yom-Kippur Holiday that was kindly offered to anyone and
Russian speaking community by Rebe Notik and his family-Thank you this was great ! Every one was welcome , anyone could join us for FREE!Even if you only come to pray on high holidays DO GIVE your Tzedaka /donation/-Do the Mitzvah of giving! Do support your community !

All the best ,healthy,happy-New Year - Shana Tova.
XOXO Sammy and Family.

After rain comes sun

Shana Tova,
We wish everyone health and happiness in the new year.
In the morning of Yom Kippur we were waiting for Sammy to wake up. He got up at 12 noon,so we went to service for evening payer. Shortly after we arrived Sammy started to make sounds. He finally was in the good mood . The whole service he was in the best behavior .It seems to me that he got his spirits up at that prayer.When we got home after 8pm -we were hungry after fasting and Sammy was giggling the all the way home in the car. Its' like that old saying 'after rain you should expect sun'.Just like I mentioned in my early blog life is it like zebra stripes-bad and good. Since we only have good and very good days -today was very good day.
There is also special ritual for getting love from your parents. Apparently each child should have no less than 8 hugs and kisses from each parent every day-well I would say Sammy gets at list 1000 each day. This little guy draws people and soles to him-he is truly very special boy.
Cherishing every minute spent together we moving along to our next page -new MRI on Monday. What it will bring us we don't know and will deal with that on Monday ,but for now we enjoying every moment ,praying for good,healthy , new year and miracle .
XOXO Sammy and family.

Understandidng attitude

Hello friends,
Today Sammy had very good day! He brought back small souvenirs from Disney for his classmates. With a great support from our wonderful school staff ,Sammy had great first day back. It has been great experience with NSSED class and highly trained teachers and specialists that had to adjust quickly to Sammy's vision loss in the past few weeks. Thank you for making a difference!
On vacation ,we had some free time and one though have not left me.Thoughts about attitude in life .Where does it come from? What makes the most impact the way we live our life's?
More I was thinking about it ,the more I realize that it comes from childhood.Our kids are very fortunate to live in United States.They are spoiled and we love spoiling them.
When ever I go back to my childhood -I realize that I had to work my tail off for everything.
Being a single mom -my mother was always working. All English I ever learned ,was listening to my mom tutoring in the other room.New clothing I only got when my old one is truly fallen apart,so at about 11 y.o I started to learned how to saw and later how to knit -this way I only needed money for fabric and knitting supply.After school if I was hungry -I started to cook little by little.By age 13 I could make many dishes from scratch,but was afraid of touching meat until about 16.Looking back I realized that if I had it all -I would not be able to survive though immigration and trough out my life . There was a great reason -why G-D is leading us though certain passes in life.That is why I feel that we can't question G-Ds way there is greater reason behind it.Maybe he is protecting us from something we would not able to handle in the future by making things happen this way now.I don't know if I'm making much sense ?!We are able to control the way we handle stress in life and our attitude is our guide . Instead of consentrating on negative and feeling sorry -Can you find positive in it?
Great attitude comes from great example and example come from environment you come from.
In my life I have to constantly tune my self to positive note,constantly reminding my self that life is beautiful and nothing can change that.I like to refer to the latest development with Sammy loosing his vision as a positive sign -we must keeping that door of opportunities open to welcome good news soon.
Any thoughts? What is your attitude in life?
XOXO Sammy and Mom.

No place like home

Eva is getting Birth Day greetings from 'Goofy' .

Look to the left Eva you have 'Goofy' with in your own family!

Hello everybody.

We are finally home. This has been some great trip. Sammy was at his best . Every one had enjoyed it. Since there was 8 of us ,we decided not to have a schedule.We spent first two days at the beach with Sammy and the rest Disney parks and Universal studios. There is plenty to do from slow pace to very active.Thanks to 'Make a wish foundation' and 'Give kids the world Village'/our place we stayed at/ we had VIP privileges for rest spot at parks-it helped allot.

Realizing that only few weeks ago Sammy had lost his vision and still adapting ,we decided to find ways to compensate it. We found toothbrush that will play songs every time he will brush.We tested if Sammy would like some music by using personal IPod .Now we can get him a CD player and many children books on CD. There is something you can do -no mater what kind of challenge you are facing this time.We are continue to search for ways to get it interesting for Sammy again-not dark .We all took turns to take care of Sammy not only adults but all siblings enjoyed it too. Sammy love all the attention -we identify ourselves ,so he knows who is near him and give him warnings when he is to be moved or switched positions.

It's must be ,so incredibly hard and scary to loose your eyesight -just try for your self! Close your eyes for just few minutes. What do you feel now?

Sammy has been charging us with his kindness,strength and much love.Trip of a lifetime,great times-memories .Stronger than ever we are back home.

Good night XOXO Sammy and Family.

Happy 8th B-Day Sammy!

Hello Friends,

Today  we are celebrating Sammy's 8Th B-Day,something we was tolled  will not happen.

We are perfect example of a life long commitment to our child  .With all the ups and downs that come with it , with getting though each day,with putting all of our liefs on hold -ALL for One reason and One reason only -help Sammy to fight his sudden illness ! 

Being just a simple women ,I'm not an ordinary mom, same  goes  for all of my older kids,  husband and grand parents . We have learn allot from Sammy -we realize that the real Hero is or 8years old boy. 

We made many pictures here in Disney World-this trip is truly amazing experience. Sammy know everyone voice and the way each of us would hold his hand. 

Meeting many other families with disable children make us realize and appreciate different things in life. Allot of this family's stick together and many fallen apart .It tests family ties and values for real. Hearing other children stories you realize that this parents are very strong and could not have been able to handle ill child if they where any other way. G-D Bless .

The weather here has been wonderful. No rain .85-95 everyday.

Sammy had many presents and Get Well Soon -Happy B-Day wishes today. He appreciates everyone of them and so are we.

Good Night just remember-Miracle do happen.

Sincerely Sammy and whole entire Family.

Happy 12th B-Day Eva!

Hello fans, We are in Disney World!
This was Sammy's Wish before transplant . Thanks to Make A Wish foundation and our sponsoring friends we are able to be here with the whole family. Parents , all 4 kids,grandparents.
We are staying in a great place called 'Give Kids the World'.You feel like a Royalty here.Every one smiles ,so nice and accommodating- is no other place like it! However, today is a special day for....
Eva is turning 12 years old! Happy B-Day Eva and many more ,Happy and Healthy Birthdays to come.
Just when clock turn 12 midnight- We decided to wake up B-Day Girl. We give her presents that very minute one by one .She graciously excepted them thank and kissed everyone of us.Eva also got few more 'Special' gifts from the friends and supporting organizations.'Chi Life' -wished Eva Havah great BatMitstvah and give her -Visa gift card. We will be going to the 'Epcot' park and will have B-Day dinner in the place of Eva's choice there.
Just few words about Sammy.He enjoyed ocean on the past 2 days.Sun ,water,sand is what he wanted also ,he ask me if he ever visit ocean again after hospital and I promised 'Gazillion more times !!' Here we where on the beach again . Little did I knew that he will only be able to hear it.
Have you ever had that feeling of hopelessness? Have you ever wanted to crawl under the bed and never come out? I think every one has. But how you deal with this ?
Just few days ago I received an e-mail from a friend about 'Great attitude'.
In the beginning of RoshHashanna -New Year we all have new resolutions and promises.
I hope that great attitude will become an every day 'Way' of living for all of us. If you think about choices ,like I mentioned before Sammy only have -Good days and Very good days!!
There is no other way around what our family is dealing with. We are the ones making our future ,making choices ,giving positive emotions to each other. We make 'Our own Sunshine'.
We all have difficult days and the only question should be -'What can I do about it? I make it better and how!? Do it now,today,this minute-don't delay -life is too short!
This is probably the happiest vacation for me -its very unique. Sammy got his whole family with him and we all take turns to tell him about what we see and whats going on.He gets many smooches and hugs from all of us.Some times he reaches out to mom to hide .Good times-lifetime memories! Watch out for tomorrows blog -it Sammy's B-Day.
We hope to bring sunshine back to Chicago from Orlando next week.
XOXO Sammy and Family

Ordinary Saturday.

Hello everyone,
Today I've met with a friend at my lunch break . I was really admiring her open to discussion personality.In our life it happen that we have friends of very different ages. For us it make no difference how old you are -what is important what we have to share and what quality they bring to the table. We are usually drawn to people with special unique vision or person with quality that we missing . I came to realize that without his girlfriend -My understanding and experience would not be complete. It's like a piece of ingredient in recipe if you miss something - final product will not be as good as it expected. My job is to absorb what is missing ,enjoy her company and hope that this experience is as good for her too. We all have different personalities and my point of perception is not always good for me. It's great that she was not afraid to see me and talk to me about everything and anything .
Now about our hero. Sammy has been all smiles in the evening. I think he missed me and we went out at evening-we visited old friends. Sammy had fun listening to talk at the table.
I reminded him that this is home of his old dog-friend -'Chuck'.This mini puddle did not like kids or next door dogs very much and one day last summer we came here for barbecue .
Somehow one dog from their next door neighbour rolled under the fence and end up in our back yard.
Sammy did not wait that long to make a decision -before we could say or do anything-he decided that there is no place for neighbours dog at this barbecue -he will only aggravate 'Chuck' and threw him over the fence back to his backyard. Thank G-d dog was OK,but he never -ever crossed that fence again.
Sammy always knew how to take care of things .He never needed guidance ,always easy going he find something to do or learn any were. His mind is always rasing -ahead of his time -you can tell his experience is far beyond his age.
Today was a great day-our evening was perfect .We enjoyed our company told stories ,laughed and relaxed . Every time Dad was trying to play with Sammy and covered his head in kisses,Sammy was reaching out to find shelter in moms hands.Have a good night.
Sincerely Sammy and Mom

Thoughts

Hello everyone,
Even know we did not make it in the top 2 finalists for Deerfield High school Grant to benefit United Leukodystrophy Foundation,presentation was a great experience and it was worth it. We need to spread the awareness of this often fatal -life threatening ,brain degenerative disorder that is misdiagnosed with ADHD nearly every time in X-linked child cerebral form.
We have had week of up and downs in Sammy's condition. Eventually toward the end of the week he bounced back ones again . But before that happened we went though this week with a hope for better ,doing all possible to better understand what plan should be developed for the future few weeks . Many friends ask what are prediction for the future? What are Doctors saying ?
We wish it was that easy. Many life threatening conditions are predictable and researched enough that Doctors can tell you what will happened next. In our situation ALD in rare and each case is unpredictable. All we know that Transplant can stop further spread of brain damage if it's done with in required time frame and its successful. Even than there are no guaranties it often takes 12-18 month for transplant to start working.
We are playing 'GUESS' game at this point. Since Sammy can't speak or see anymore we left wondering how much does he understand? Is he depressed ?
We know for sure that Sammy knows voices of every member of our family .He knows how much we love him ,he gets countless hugs ,kisses and positive energy. We comfort him and enjoying his company every day every hour every minute.I hope that he can connect and enjoy our vacation next week.
We are going to visit Mikey Mouse house-we are going to Disney World .!!!
The whole family will be reunited and going together . This is our time to make precious memories of being together,bond and ones again remind one another how important family is !How fragile our life is! How we can't afford to waste it on small stuff!
Can you forgive and forget? Can you help some one else to move on if you feel stronger? Can you think with your mind rather than your heart?
I struggle every day to find answers to this questions going trough our path one step at the time.
This is our test and we must complete this task to our best ability to safe our Sammy's life.
Coming closer to RoshHashanna -we know that miracle can happen-we will be waiting for it.

XOXO Sammy , Mom,Family.

Thank you friends and ULF

What a day!
Hello everyone.Today we really accomplished allot. Sammy skipped school and spend whole day with family running important appointments.
This morning we did a presentation in Deerfield High School about Sammy's illness and support to United Leukodystrophy Foundation.This is High school that Sammy's older sister Marina had graduated 2 years ago.This young adults raise money every year for a foundation of their choice.
Our friends from Foundation -DeKalb ,Illinois came to help. We had a beautiful Video-clip put together by our closest friends .This people truly dedicated to help us.From day of Sammy's diagnosis there was no asking or calling -they are always with us tuned to our daily challenges and ups and downs ,they celebrate and cry with us.This friends are the ones that you keep in your heart for ever .Thank you again for making a difference and not being by standers -watching what will happen next. We had a great presentation. After all watched video about Sammy and ULF Foundation we answered some questions and now hope that we will be one of 2 finalists .After we send Marina back to Collage and went to Children's Memorial for our monthly appointment at 11:00am. We consulted our Neurologist and Stem Cell Doctor.
We met Grandfather for lunch and finally at 4:30pm headed home.
Sammy was tired . He relaxed and rolled on his gym mat crawling over mom/ that was right next to him / few times and settled down for a short nap.
We picked up allot of positive energy from High School. This children really making a difference they are helping out important cause organizations that don't have much funding and in desperate need of help. We hope to help raise funds for this wonderful organization that helped us connect to other families with this disorder and most importantly doctors and scientists that are working hard to find prevention and cure for this deadly conditions all over the world.
Any one of us can make a difference in another persons life -have you looked around you lately!? I'm sure you know of a family struggle with an ill child or some person going through rough time ,just ask your self a question -what can I do to help?! Sometimes simple phone call is life saver or just letting them know that you care rather than finding excuses for your self.
XOXO Sammy and Mom

Happy B-Day Dad!

Hello friends,
Today we wish our Dad ,my husband Alex-Very Happy B-Day. He had a though week ,but bounced back fast-like that energizing bunny-'keep going and going.....'
It's hard to define his personality in just few words. Besides being an outstanding father and son he has been my inspiration in many ways for 14 years. Always positive,optimistic ,very loud he brings love,sense of old fashion family values to our family. From teaching our toddlers how to eat with knife and fork to getting tough on older daughter curfew time to the minute.He is very clear on his principals and hard on kids when they fight between each other. He always said -"You will have each other-when we are gone,no one is closer that your sisters and brothers -don't let anything change that!' On the other hand kids always knew daddy's soft spot. He will give his kids anything they ask for -but you have to prove it you need it! So from young age our kids have to learn how to negotiate and plead their cases.And than there is me-his wife. Well ,I guess he knows that no rules or restrictions applies to me.I have always been 'Free running horse'. Always independent -I 'm not exactly your usual 'home wife type'-Alex knows how to agree with me to keep things running smoothly in the house. So,here is to my husband and dad to 4 beautiful kids-
Happy B-Day Alex ,many more healthy, happy years to come,we hope that you continue to be strong ,fine example of a father,husband ,son and may be one day soon we will see our most desirable wish come true-Sammy will completely recover from this devastating illness for good.
Amen.
We believe in the miracle, we fight for Sammy's recovery ,no matter what it takes.Our latest news did not make us weaker-it made us stronger than ever before ! Are you a believer?!
Sincerely Gelena , Sammy,Mikhael,Marina,Eva and the rest of the family.

Pure,Beautiful Sole.

Hello everybody.
Busy week. We have been trying to estimate if Sammy has loss of vision. Just on August 1st we have seen a great eye Doctor .Today we repeated the test. Our suspicion was confirmed.
Unfortunately Sammy have lost most or all of his eyesight . It's just too had to tell exactly,but the difference in 6 weeks was significant. There are many other things that have changed. Sammy stooped sitting and supporting his back .He slides down little more than before while sitting. This are just the 'Facts' and we can't ignore them.
As per our believe -we think that 'Miracle is absolutely possible ' at any stage of Sammy's recovery. He is such a sweet boy with a beautiful sole .He is always smiling ,he brings sunlight in to our life's.
As a mother ,I can feel that ALL of my children have a very Special place in my heart. I'm grateful that we have chance to give love and warmth to our Sammy . Loved by everyone,we miss his jokes and remarks-his funny statements about things we not remember exist.


Sammy's beautiful sole


He can't SEE anymore-but he can SMELL my skin,

He can't DRAW anymore-but he can still SEE some dreams,

He can't READ anymore-but he can IMAGINE and FEEL,

He can't REMEMBER G-D -but he knows he is REAL

He can't SPEAK anymore -but he can HUG and REACH for more,

OUR BEAUTIFUL SON -WITH PURE,CRISTAL,YOUNG SOLE!!!

September 17-2008, Gelena Zeltser

He has many different ways to show his affection and now those senses that use to be less intense will be more vibrant.I will never stop kissing and hugging him and telling him goofy stories,just like before.He always recognized a kid in me-He use to say that 'Mommy is silly'.For me not much changed only some of Sammy's physical abilities. So ,we will deal with this day at the time.
He has an unbelievable love for life.He always heard birds singing,sun shining and love to watch snowfall .
We will never stop believing in Sammy and never give up to the last breath.

XOXO Sammy and Family.

Emotions

Hello fans,

I think of our daily routine is similar to weather channel. You can guess all you want,but nature will take it course. Every day I wake up and go through roller coaster like emotions. What today will bring us?! You would think that experiencing and dealing with Sammy's illness on daily bases in the past 7-9 month would give us certain stability?!

I was looking through our family pictures last night. From kids birth pictures to B-Day parties and family vacations.

Sammy looks so cute on this picture from Disney Park when he was-4 .Perfectly normal,happy,goofy kid.

I found my self in the deep thought about a choice.How some people get sick by making poor choice in their life. Well ,what comes to my mind -it's that in this genetic condition -Sammy had no choice to make and I as a mother who past on this X-chromosome mutation to him - now left wondering and praying for Sammy survival.

Sammy loves going to school. He has been working very hard on 5 days a week 9-2 school schedule and 2 days a week Rehab after school. He is exhausted by Thursday. Fridays have been most challenging .We thought about reducing his week to 4 days a week,but decided to wait.

Sammy has been using weekends for relaxation.Dad has been putting Sammy in the gait trainer -walker on better days. I would say fatigue , lock of energy has been biggest problem for Sammy.

G-D willing ,miracle will happen with a speedy recovery for our Sammy.

Have a nice Sunday,

Sincerely Sammy and Mom.

Hope for a future.

Hello everybody,
This week is almost over and toward the end of the week Sammy gets tired. So much to learn ,so much to see .Today Sammy had a first community trip to the park.After school he was going to Rehab and first time in several month fell to sleep in afternoon.
Mom had a interesting finding .Talking to United Leukodystrophy Foundation we find out that in only 41 cases of ALD was registered in 25 years in the State of Illinois!!! . At this moment we might be one of few families with ALD child in Illinois -known or registered. You know how I mention before published odds don't work in our case? Well if you think of the statistics of ALD its 1-17.000 . How come at present time we have just us and may be few more unknown families out there in the state of Illinois?!Population in our State was about 13.000.000 in 2006. So where are the odds now? It means that for our family is much more difficult to fight for Sammy's much needed Special Needs equipment,information,share coming challenges with other parents, meet in the support group ?!How about getting another approval for complicated necessary test ? Thank G-D for Internet. Connecting to right people,information,resources -is a must.
Recently I received another e-mail of a desperate mother from Spain. She found my e-mail and it was -'Life saver' for her to hear our story, communicate and connect to us as a parents.
In reality, where do you go? If you find your self in rare disorder square?!
This task is not easy with any ill child -we love our kids and will do anything to help them.
But today I realized that we are in much smaller shell than I ever imagine.That I can't afford to fall apart any time soon!
When we try to connect to Specialist in ALD -there is only handful of Doctors in the world and we had either contacted them by e-mail and Sammy's MRI was reviewed that way or we have met them in person. We are working with close friends of the family and in the middle of making presentation about Sammy- to one of the charitable organization.If we are picked -we will be able to get funds toward United Leukodystrophy Foundation -organization that connects together Doctors and Scientist for the future cure for ALD . Have you ever had a dream? Did it ever come true?
XOXO Sammy and Mom

Weekends

Hello friends.
In the past few days we watched Sammy going from a very good day to just a good day. You see we don't have any other days.Its a Very good day or good day. Over weekend he was connecting to people differently.I mean looking right in to their eyes something Sammy was not able to do before.He was constantly trying to get up. He is ready for the next step. When we reach out and let him stand on his feet he is scared.He grips tight and you can see he is afraid .
Today we learned how to adjust Sammy's walker. He is in desperate need of this equipment and after 4 month of fighting for it we finally got it. Next item is his wheelchair! It has been 5Th month from the initial order request,but I hope to G-D that by the time we get it -he will be walking on his own! I have such a urge to send it back saying-Thanks,but we don't needed anymore!!! G-D willing!!
First time on the gait trainer-walker-Go Sammy! At first he was trying to taste the straps and then we started to Cheer and this became allot more interesting. He was very exited to stand on his feet.He is tired of laying. We will continue to use it -it a great piece of equipment -it helps.
Another funny episode from this weekend. After having his lunch Sammy was seating next to Grandma . She started to sing a song they use to sing in the car before. All of a sudden ,Sammy started to make sounds. Not really to melody ,but using his voice as he would sing. This is great.
His sleeping pattern is very odd. He would roll around his bed at nighttime from 8pm till 11pm or even later not being able to fall to sleep.In the morning we all know it's impossible to get him up. But I figure out how I can wake him up sometimes from deep sleep. I take him straight to the warm bath. Great advantage to wash,brush his teeth,clip his nails. He does not mind it. Water feel good and he likes being clean and comments from his family -how good he smells after bath.
Good night, xoxo Sammy and Mom.

Cutie Pie

Hello everyone, How cute is Sammy? He just got his First real hair cut yesterday. He is one hansom dude!

School week ended today.Sammy is exhausted with all the new activities.He is working hard to adjust to his new busy schedule. I decided to share this newest pictures with our fans. Every day is a new day as we moving to Sammy's full and complete recovery. As a part of my commitment to do everything in my power to help other parents that just got 'The ALD news '.

I like to share everything I know to make their path easier than ours. I share any available information I got. In our unique situation you need a friend that walked a few miles in your shoe.

And that is exactly what I can do to help another mom that just got hold of my e-mail address and has a parent-to-parent 'Life Line'. We wish that Family all the best for the future treatment.

They will find a support in their need to talk to some one in the same situation.

Sincerely Sammy ,Mom

Brain Freeze....

Hello fans -
Getting a good news -before next concern?!
Just few days ago,we received a great new from a Specialist in ALD after reading Sammy's last MRI on the large screen- It's BETTER than it was expected!!! Just as we celebrated our Happy moment ,I got a phone call that got me worry. Sammy has been part of wonderful class and school .In the past 2 weeks,there has been specialist's and other professionals that observed Sammy's behaviour and try to learn his style and his needs.The concern is-is there seizures? We have been raising questions about seizures ,but Sammy's December EEG had not show anything. Seizures is very common condition in ALD cases.
I know that just before his hospitalization in January -2008 -one time I saw him sitting on the kitchen floor saying 'I had a Brain Freeze' - this happened only ones . At that point he had ,so many neurological problems with swallowing and gait ataxia that this was put aside until after Transplant. I think now is the time to revisit this possibility again. We trust judgment of our Pediatrician and Cell Stem Team and our Neurologist ,so the next word is after our Doctors. Let's hope for the best.
XOXO Sammy and Mom.

Live and learn...

Hello everyone.
Something that has been on my mind for a while. I heard this somewhere and keep thinking about it.
One day Almighty had given a task to two man. He told them to carry heavy cross on their back to the river. First man carried his heavy baggage with honor and understanding quietly- taking a day at the time even know it was very heavy. Second man was constantly complaining how heavy and unbearable this task was. G-D decided to help second man and reduced his baggage in size .After a short while second man complained again about how heavy it was -while the first one keep taking this task and dealing with it as a challenge with honor. G-D decided to help second man again and reduced the size and weight of his baggage again. As we all expected second man was not happy again it was still too have for him. G-D reduced his cross to size of the palm of the hand. Soon both man came to the river. They saw Haven on the other side and really wanted to go there. The first man took his large and heavy Cross from his back put it across and crossed to the other side. The second man drowned.
It seems that in our task we are taking every step with allot of meaning to it.There never a question why us!? There is a question how can I go though it faster and make it most positive experience .I know for certain you can't run , you can't hide,you can't cheat -you have to complete your program.Sometimes it feels its coincidental,sometime it feels it faith,but most of the time I feel we must to get to the other side to find Sammy's complete spiritual and physical recovery.
Learning experience along this whole ordeal -how to have patience ,how to reach out to others,how to listen and understand fine corners of our souls,believe.Most valuable lesion I've learned is how to forgive and forget. This helps me to move on to the next level of our task.
This story makes sense to me.What about you?

XOXO Sammy and Mom.

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