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