Recharge?

Hello everyone,
Everyday life is taking a toll on us. So much to do,so much to plan.
It all good this is what life is all about.
The way I see our lives -everything in the world have structure. Scale,plan,schedule,system.
I wonder what is the schematics of Sammy's recovery?
I have come to believe that in his case every ,so often Sammy has to take few steps back to leap forward .Does it make any sense? Not everything in life does. Every time it happens I get very upset. Naturally, that what happened in the beginning of the past week. Right after Sammy had 'slow-weak' day,he turn around and gained some progress toward end of that week.
Granted , we NEVER loose our hope and believe in Sammy's Full and Complete recovery!
Yesterday ,Sammy visited his Grandparents.He not only recognized their apartment,he also remembered pool area in their building.Every summer he spend many hot days there-swimming and having lunch with grandma and Eva under cherry tree.He new where he was!!
He stayed near pool and enjoyed dipping his feet in to water.He was ,so exited and happy!
Sammy came home tired and went to sleep early that day.
Most nights I stay in Sammy's room to insure his comfort,safety.There is something else that I sense intuitively.When we go to sleep Sammy will hold my hand-I feel that he is getting 'energy charge' from me.He will wake up few times at night looking for me ,as soon as he sees me -he takes my hand and goes right back to sleep. Umbilical cord connection? Battery charge?
Some mornings Sammy wakes up very early like 6am. He will try to wake me up by pulling my hair.If that does not work, he will reach out and catch my nose-That always works!
That is all for today,sorry for being late catching this blog.Life is beautiful!
Good night ,
XOXO Sammy ,mom,family.

What a DATE?

Hello everybody,
We had our bi-weekly appointment in the City. After we decided to meet at McDonald's with friend and surprise Sammy. At age 3 ,Sammy had nice group of friends that he saw occasionally at B-Day parties and sometimes in our home.This families are dear friends of ours and so is their kids. One day when they where about 4 years old -Sammy came to me saying that he like to call one girl by nick name he came up with-'Honey Cup Cake'
Fast forward to this week -we met with this little girl-Now 7,5 y.o. just like Sammy and her mom for ice cream.
I told Sammy that he will meet with 'Honey Cup Cake' today.It was great.
Becca's mom- my girlfriend has been by my side every day ,since we learned about Sammy's illness .Becca made a beautiful 'Get well card' for Sammy while he was still in the hospital.
This little girl -is brilliant. She was not nervous or afraid of Sammy on wheelchair,she made him very comfortable and talk to him just like before,like nothing ever happened. Sammy was ,so happy- it was a very special day.
Sincerely Sammy and Mom

BRAND NEW BIKE AND MORE....

Hello,Everyone!

This is Sammy w/ his new Red bike!After few more days of exercise and practice,Sammy can't wait to ride it outside .Thank you KIDDOS!

Lately Sammy has been trying to share everything.When eating he will try to turn every other spoon your way!Sharing -is back! Sammy always thinks of others ! Ever since very young age,if receiving gift, Sammy would ask 'How about Eva?I can't accept this gift without sharing it with my sister!

We are anxious to meet our new Home bounded tutor.Teacher will be provided by our school soon .We must continue Sammy's education, getting him ready for new upcoming 2nd grade is our next step -we can't wait .Hopefully, this week we can start.How much can Sammy remember from letters?numbers?reading? We will find out soon enough,but for now we are very happy and on the right track.

Great bike,Good times,Great plan for the future,let's be healthy!

XOXO Sammy and Family.

Thank you KIDDOS !

Today was a great day.
Our local neighbours kids and parents thank you ! Deerfield town has a wonderful organization calls Kiddos. 1 time a year they organize a talent show ,where kids raise money for local children that are ill . This year Sammy and one other boy that is fighting leukemia - each received a gift from this organization.
We had a pleasure to be part of this evening and experience support, positive wishes,prayers .
This was evening full of energy,laughter ,great lesion to local kids how to care and DO something for kid next door that is going through tough medical treatment or sickness.
Sammy got GORGEOUS special needs tricycle. It's adjustable all around and has body support.
Tomorrow morning we will introduce this generous gift to Sammy.
Thank you KIDDOS!
P.S.Next year we would like to participate too.I'm sure we can find talent with in our family and will be happy to be part of this wonderful cause for someone else.
Sincerely Sammy and Family.

Great job Sammy.

Hello everyone.
For the past few days Sammy has been busy. He has been choosing his own cereal in the morning ,when given choices he picks 1 of 4.Than I would take away one and switch places giving him another choose of 1 of 3,trying to confuse him. Almost always he knows exactly what he wants.
Today after long day at rehab ,Sammy was 'chilling' on the floor gym mat. We let him roll around .
To my surprise,he was able to take off his long socks.He attempted to pull first one and trying to stick his finger inside and than I encouraged him to do the same with the other.
This was first direct action coming from Sammy connecting his thinking and action. He was persistent and persistence payed off!
Sammy and his sisters had play time at which Marina ask Sammy to show her :Nose,mouth,eyes,ears and Sammy did it! Great job Sammy!
This has been very encouraging week,so far .Keep it up Sammy and you will be walking soon!
XOXO Sammy and Family.

Good Morning,Sammy!

First sunlight in your window
Good Morning sleepy head!
It's time to have your breakfast
You have whole day ahead

You searching room for someone
For who?I have no clue,
You looking for your mother?
I'm here right next to you.

Your big bright smile, quickly
Lights up whole room with light
I say-"Good Morning Sammy,
How was your night?All right?'

You looking at the window
You see our backyard ,where
Last year at this time ,Sammy
you cough cicadas there.

You love cicadas ,Sammy
You thought they are 'So cool'
You brought them to our house
Keep breaking all the rules.

Remember one day ,Sammy
You came home with a mole?!
'Mom meet my new pat ,now!
He's special,he is - Paul.

Get rid off weakness ,Sammy
You know how strong we stay!
Let's mark today -Our New Start!
And illness will vanish away.

Let's make few steps and maybe,
You'll return to your usual pace
I know you can hear me,Baby
We have ,No time to waste!

I miss your jokes and laughter
Your curious ,witty mind
Get up son! Make some progress!
Toward your future-Against all odds!

06/14/08 Gelena Zeltser.

At the glance

Hello fans.The other day another analysis of our ordeal was in my thoughts.What really stand out was that we are moving in the right direction. Every time life is giving us another challenge in the process something good comes out of it,everything falls in to right place after a while. And I'm not talking about just illness itself,things like -insurance ,bills,special needs equipment,
schedules,work,wheelchair access to and from house and much more all at ones.If you concentrate on whole bundle of issues we are dealing with -it's just impossible to find solution at first glance. I do much better when each individual issue I deal with is on one by one basis. Over all no matter what stage we at ,somehow ,someway it turns out to be OK.
I've mentioned before that a friend comes 2 times a week to give Sammy soft body massage.
When you believe in your child recovery there is no doubt in your mind that he will be fine.But when a professional that worked with Sammy before, said that he is doing better each week and he believes -Sammy will walk again someday! Hearing this from somebody else was priceless!
This morning I was rushing to work and ask for my daughters help. My older daughter just didn't know how to handle Sammy.Eva/his body in crime/-knew exactly what to do.
At her 11 years old ,he was able to dress him up,feed Sammy his cereal /he had spilled milk and made allot of mess/,she even cleaned up afterwards.Wow! She is just a natural,always ready to come to the rescue ,reach out to another person,take charge . Of course there are many gray areas we have work hard at like school, keeping her room clean,but over all she is my -Best helper! Bravo!
Every morning I wake up in a great mood. I'm a happy camper,nothing bothers me! I'm able to see Sammy ,smell his skin,see his smile,his beautiful eyes-it's a G-Ds gift -Thank you ! I have my daughters next to me,watching them bond and try to help me care for Sammy-is priceless.
Life is beautiful ,love -is most powerful feeling in the world and Sammy is loved by many.
With that in mind I wish you Good Night,best to you and your family's.
Sincerely Sammy and Mom

4 month since transplant.

Hello friends.
There are still many concerns and still long road to recovery ahead,but today I felt that it's a milestone.
Celebrating 4 month since transplant it's a very special day.It's happening on meaningful religious holiday when after much suffering -we receive Torah-from G-d .
'co-incident ?' ,can't say that anymore. I call it another G-D's sign that Sammy will be OK ,against All the odds!
Numbers 4 and 7 is very special numbers.I have never thought about numerology until the 'news' in December. I started to look at our B-Days,address and realize that number -4 &7 keeps popping all over the place every time. For example-Sammy's B-Day is
10-04-2000- if you ADD all numbers together until you get single number it adds to-7 ,note birth date is-4.
Moms birthday is 05-04-1969- ADD this numbers together its-7 ,note birth date is-4!Weird?
Our home address is -2689- add them together-7 ,if you count the rest of our address letters it totals to 13 letters ,if you add to single number is-4! Weird? Absurd? I don't think so.
I guess after such a traumatic experience with your child you are looking at your life differently and numbers play certain roll in it too.
Up until this moment I was questioning the fact that I carry certain massage my self.It happened soon after I took my Hebrew name-Chana.I can see clearly now,sometimes above persons appearance right in to their soul. I found that for me people assort to 2 category's .Positive and Negative-Good for me and bad for me. The other day I had a customer that I helped and after she left ,I had to find item to charge-ship to her.She give me her business card with address. I had this weird feeling on my mind that if I look at her business card I will have a sign.I was not wrong-zip code I had to ship to was-60606! Crazy?May be .Have you ever had a hand shake that felt like -electric power went though you?
Have you ever met people that after you talk to them ,they will take All energy from you ?
Afterwards you feel tired and they will walk away with extra strength.I got to experience this silent ,invisible world that makes huge impact on our life ,but we know very little about.Weird?
What do you think ? Am I going crazy?

What's next?

Hello fans.
There is one thought that is not living my mind.It's like that song that will be stock in your head.
What is next? Do to Sammy's rare condition very few study are available for after bone marrow transplant expectations for ALD children. The other day I received a brochure from United Leucodystrophy Foundation. We are registered there do to generous donation that Sammy's elementary school made in Sammy's name -Thank you again!There is a conference to be held in mid July ,that will discuss Sammy's disorder alone with other Leukodystrophys. We will meet Doctors from all over the world. All leading hospitals from US that Specializing in ALD will be there,what a chance!I will meet parents of children that have same disorder. Some will come to make a decision about Transplant or other possibilities,some will come to find answers for after Treatment-like me.Unfortunately carriers of this horrifying disorder/such as myself/ can experience some symptoms later in life. I like to find out more about it.Aquatic therapy is part of conference. This might be a good chance for us to find right Hospital for plan for the future.Diet,nutrition,alternative medicine,tips,warnings and much more to be discovered at the place that seen and treated the most cases of ALD.
Today Sammy spent a day with his grandma .She was passing Sammy's wheelchair and Sammy decided to play. He catch grandmas skirt and took a ride holding on tight as long as grandma was moving ,so was Sammy. -Why work hard to push wheels ?Sammy is thinking!
Another upcoming visit .Mikhail- older brother is coming to visit.All kids love when Mikhail comes.Today is his 23rd B-Day-Michail we wish you health,good luck,happiness and all dreams come true!You are fine example to your sibilings.
XOXO Sammy and Mom.

Sammy ,where is my cereal?

Hello everybody,
Today in the morning before Rehab pickup I selected a 'Pops' cereal for Sammy. Alone with Sammy's breakfast I grabbed a bowl of 'Kashi' for my self. Sammy was not too enthusiastic about his cereal and refused to eat it. He reached out and tasted 'Kashi' -he kept going until it was all done. I said 'Oh ,No where is my cereal Sammy?! I had no chose but finish 'Pops' .Sammy thought it was ,so funny that we traded.
Tonight bath time was allot of fun.Sammy liked his bath toys and played with colorful moving animals.
Mom came across sealed Wi games that Sammy got for holidays before hospital ,he use to love playing .I asked Eva why doesn't she play Wi anymore,she said' You know Mom ,it's not the same without Sammy-I will wait for him' !
There she was,my dearest daughter that has allot to do with Sammy's survival,giving him part of her body ,I though she grew up rather quickly in the past 4 month. Mature for her 11 years old,she was able to recuperate after surgery ,catch up and soon will graduate 5Th grade.I'm very proud of all of my children for the strength and help during those long winter month in the hospital.My older daughter Marina use to drive for 3hr from her collage to see Sammy over weekends.I use to say I don't know many 19 y.o girls that don't want to go out,instead he spent countless hours in the hospital with us until it was time to go back to collage.My step-son Mihail lives in NY,no matter what ,he comes to Chicago as often ,as possible to see Sammy.

Just before hospital ,we had long booked winter break vacation . We didn't know if we should take it ,or not,but after reviewing Sammy's MRI,doctors said that 'You have nothing to loose,just go and make memories'. Sammy already have had balance problems and had trouble balancing in the sand,he loved beach,sun and water. We even saw sting ray in the water near shore.
When we was packing to go home,Sammy ask me if we ever come back?
I said that we most definitely comeback and he will get to see the ocean 'Gazillion' more times. He believed me and I intend to keep my premise in the future year,as long as Sammy is OK to fly , we will be going to Disney and after parks we will go to see the ocean.
Beat all the odds -miracle will happen and this is our focus!
Good night ,Sammy and Mom.

Finding way around...

Hello everybody.
Sammy has been trying to get out of his wheelchair.He has been pulling his whole body and wiggling to slide through safety belts. The fact that he doesn't like sitting like that -tells me that he is aware of what is going on around him.It is indeed -great! The more he dislikes sitting in the wheelchair-the sooner he star trying to walk on his own.
I'm little worried about possibility of seizures that we might have missed and like to make sure that he does not suffer from it. Many time's a day just for a second he will space out in nowhere. I usually ask him to look at something interesting to destruct him from it.
I often analyze situation as a whole ,reviewing every piece of information from Sammy's files.Of course I can only relay on my intuition and studies that was done in similar cases. My understanding is that he is missing bits and pieces of brain tissues do to damaging demolition process and unwanted storage of fatty acids - that took place before bone marrow transplant. There are promising studies out there that child's brain might have abilities in some cases to find another way around to compensate for whats is missing . If we think logically, it can't happen overnight. So his recovery is appropriately slow and technically it will have to take longer to rebuild full body functions and restore what is missing. It is my grates wish that we all see Sammy walking to school bus stop , going to school and living his life at full potential .
As per family we are not in rush,we will be waiting patiently and watch Sammy go back to his old routines,jokes,mischiefs soon. xoxo Sammy and Mom.

P.S.We like to send shout out to our Dear Friend Vadim and wish him Healthy,Happy B-Day.
Vadim-you are one genuine friend .Best wishes-we love you.