Real challenge.......

Hi ALL,
It has been a while .Just getting use to new Sammy's schedule without much help.Family is it.
Many new questions came up during few month after our insurance plan changed. Sammy have not seeing his doctors for month since new insurance we are not able to use medicar to transport Sammy to his appointments. Unfortunately most of his specialists are in Children's or Children Memorial professional building in the city-which is nearly 30 mi away,even when we had extreme emergency we still was send to Children's-no one else will help .When I ask about our new plan coverage why we was denied home care-they pretty much told me to take him to hospice facility for good. This will never happen -not in our family .
Not too long ago our friends visited Sammy and concerned about Sammy's mobility and handicap access we finally recognized a real need of a car that will have wheelchair access and all the equipment to safely transport child that lost all cognitive and physical functions.
Facing possibility of urgent care or another extreme circumstances really got us thinking -how will we move or transport Sammy ? Anyway ,friends are thinking about a way to help.......
In the mean time ,Sammy is enjoying Family time. He have had many good days ,but some very tired days too when he sleeps all day long.Nights have been a challenge too. It seems he switched day with night,so we constantly visit him making sure he is comfortable.
Its hard to believe that Sammy have been with us almost 2 years after transplant and keep fighting with our prayers and his strength.
Stay warm,stay healthy,
Sincerely Sammy and Mom

New Poem

Hi ALL.We are OK.Sammy is doing well. I cant sleep,so had came up with another poem .
I hope you like it.

AFTER FEW DRINKS LAST NIGHT , AT THE BAR
I MET THIS 'HOT BLOND" LOOKING LIKE MOVIE STAR

NEXT MORNING "O' God !,SHE WAS GONE..WHAT A SHAME,
I'm TELLING YOU GUYS I'LL BE NEVER THE SAME

LEAVING BEHIND FEW THINGS ON SIDE TABLE
I HAD NO ONE TO BLAME THEY ALL HAD 'NEIMAN'S LABLE'

I FOUND:FAKE LASHES,SPAX TIGHTS,CARTIER
CLEAVAGE ENHANCEMENT, LABOUTIN'S ,BUSTIER
HER BLOND WIG,FAKE TEETH,I WAS YELLING 'NO WAY!'
IF ALL OF THIS LEFT HERE THAN WHAT WALKED AWAY??????

MY FRIENDS MY ADVISE TO YOU AFTER LAST NIGHT,
BE CAREFUL CHOOSING YOUR GIRL ON THE SIDE

JUST ASK HER BEFORE SHE IS FALLING APART
THIS ONE SIMPLE QUESTION -IF SHE OWNS NEIMAN'S CARD?

THEY MUST SELL ENHANCEMENTS BY DOZEN
it's JUST WRONG -I CAN'T TAKE ANYMORE!!!
AFTER FEW DRINKS I WAS ASKING MY COUSIN
WHAT ELSE CAN THEY SELL AT THAT STORE????

15 years

Hi All,
We just celebrated our 15 years anniversary. Both of made of honors was there. Of course at home ,we welcome our close friends and family.
It was magical. Ones again realizing that without our family and friends we would not be able to make it ,so far. Just looking around us we ones again said how lucky are we to have such an incredible people around us.
We really had fun , many of our friend we know for at least 15 years . Their weddings around same time and our kids born and raised together. It was like a balm on our bleeding soul.
Sammy enjoyed attention ,it seem he recognized people voices and was very alert . Great evening ,allot of love,precious memories,laughter ones again entered our home-this is what we love and could not have it any other way. Life is short,we must enjoy those rare moments of happiness.
Our daughters was ,so helpful.They helped out and made our party easy to handle -Thank you ..
Tomorrow we off to few days off,I must catch on my sleep between home,work,Sammy I feel tired.
Have a great Thanksgiving ,use this opportunity to gather your Family together and tell them how much they all mean to you..
Sincerely Sammy and Mom

No turkey for me.......

Hi all,Hope everyone is Good.
Sammy have had strong 2 weeks. He loves bath, rubs,hugs .I have few extra days home this week/no one else can take care of Sammy/ .We have all different activities during the day.I try to include him in everything I do.I can only imagine how tired he is of laying in bed all day long other than go for a walk with grandpa.We talk about everything ,I even get a smile when I tell him a joke or talk about news. Its just unbelievable how much love and understanding you can get from this boy-you would think if he cant talk he can't express him self? Wrong,he shows it in many other ways.Last night I just crawled in to his bed and fell to sleep,when I walk up someone said that we where both snoring.
Fight for Sammy's home care is on. It will not go away! I'm determined to make this right.Family like ours with terminally ill child should not fall through the cracks like this-we are at our most difficult stage at this point and need assistance taking care of Sammy-we will get it one way or another.All I want is be able to continue working -4 days a week to support my family.
Up coming Thanksgiving is not my favorite holiday anymore. 2 years ago just 1 day after Thanksgiving we got a bad news ,so this association will always be with me.

Sincerely Sammy and Mom

Lullaby

Hi All,
We continue with our persistent mission to have adequate help for Sammy while Mom works.
Although we had exhausted many channels there is always another one . We even got inquiry from local TV station to do a story on Sammy ,but I just think it would be our last resort- its only fare to give enough time to respond for those that we contacted in the last week .Nothing happens overnight ,so we will wait little longer . Oh,wait I'll take that back -what- does happens overnight is we lost our nurse just in one day-that happens very fast! Than we are on our own ,ones again fighting.
I can wright a whole column about insurance dropping us instead of being grandfathered and system failing ,but who will benefit ? Instead I decided to save my energy for positive and try to gather most sufficient and proactive people and information to work to our benefit.
Sammy is doing OK. Just last night ,we got a scare with his hard breathing pattern. He had just slight low grade fewer. I give him nice rub and hug and whispered some lullaby to his ear and in the morning no fewer -he recovered .I wish I can do same with his illness.G-d wheeling....
Sincerely Sammy and Mom

seeds of hope

Hi Friends,
What a week. One of the most challenging weeks .
There is so much going on .The good news is that Sammy is OK. Just when I thought we finally settled with our schedule and help wile I work ,we lost our coverage for nursing. Ones again like a bull on the red I had to make a plan. Contacting new and old sources I planted seeds of hope and in the next few weeks we should see what plant will start growing.
What amazes me the most is that' system' is failing time after time one of the most vulnerable group of patience -terminally ill kids. You would think it should be easy to get help for Sammy ? The main problem is that program pays nurses 33% less in Lake county VS Cook!After getting a denial for equal pay increase we are moving on to higher sources, nerveless I could not understand why if we live 3 mi south we would be covered with nursing assistance without a problem.
What's now? do we have to move? No one wants to take pay cut ,but we do live in Lake county and can't move do to the fact that it will be very bad for Sammy .
Ones again -there is NO situation without resolution.We'll continue fighting for Sammy for my ability to work . This are most natural rights that most of us had before and now have to fight for.
Just imagine one morning you wake up ,you are faced with real question who will take care of Sammy with all medical complications and countless drugs he must take during course of the day?Medical staff is the only qualify help Sammy can have.
Many questions not much answers,that is what parents are for to fight for their children well being no matter in what condition they are.
Sammy and MOM

Everything is 'Peachy'

Hi Friends,
Hope every one is well.
As a tradition we are facing obstacle after obstacle for the past 2 years. This past week is not exception. We just learned that Sammy will have no nurse coverage for most days mom works .
Was I upset-of Course ! Was it surprise to me that something about to surface ?-No not really.
Is it fare to Sammy or us? But life goes on-we must find a way to get ahead .
I could never say we complain,but it getting to be annoying .I always ask my self a question -whatever comes up -Can it be fix? Can we do something about it? If the answer is Yes-we are in good shape. We will have to figure out how to care for Sammy at home with 2 days a week nurse coverage/besides next week we have 0 coverage/
The main challenge is to keep my job.
Sammy is doing fine. Since you can't even tell that this boy is sick-if you would see him,our last hospice doctors visit was great.The fact that Sammy has fevers and vomiting problems is shifting to the second row-I guess if you can't see it -its not a problem?!
I learned from Sammy ,just move on and that is what we intend to do after we can figure out how we can keep Sammy happy and Mom at her job.
Otherwise everything is 'Peachy'.
Sincerely Mom and Sammy

ID

Hi All.
It has been tough few weeks. I was sick with a flu like symptoms-have not have it for 2 years .
The fact that it ,so contagious it tipped the 'careful' scale to frantic caution for me.
It blows my mind that just a simple cold can change everything for Sammy.
It happened that some wear in the same time my thoughts overwhelmed me.All of a sudden I started to look for my identity . One day I realized that things that I had a great handle on before has shifted.I recognized many changes in my life that have happened during this long 2 years.
Honestly ,I don't even know who I am anymore.Questions like -what would make me happy ?besides of course for Sammy get better . It sounds like its time for me to do some new soul searching .The fact that if I'm not happy with things now -makes me think of the ways to switch it back to where they were before. My bubble is my comfort zone- anything outside is not for now.
Sammy ,has been OK.Some days disconected ,some days very alert.
He is such important person in all of our life's and the fact that we love him more than our life is going without saying.Vomiting became frequent and consistent he is able to deal with it with nurces and my help ,although it takes energy away from him for hours after.
Sorry for not updating my blog as much as before.Hope everyone is well.
Sincerely Sammy and Mom.

Capitan-Sam

Yesterday -Sammy turned-9.
Something we thought could never happen.He has been fighting with this ugly illness for long 2 years-he is the inspiration and the teacher for all of us.
We picked this place for celebration for few reasons. There we celebrated Sammy's 1st years old and Eva's 5.We even got same waitress as we had 8 years ago-I could not believe it!
This room is very Nautical-upside down boats and many other items of fishing around.
I found an outfit that Sammy will look his best . He had nothing less than 'Navy Captain' suit on.
He has been always a handsome kid anyway,but this made me think of how much more we should see Sammy accomplish in the future.I believe that miracle comes to people who believe in it-and we do! If there is 1 in the Million chances to fully recover from this condition -it would be Sammy.
Sammy knew that it was his celebration -many new noises,many old voices -I could tell he remembers.His Cake was HUGE! It was a Pirate theme. In fact that Captains of the ship have to fight with Pirates to survive .All essentials present ,Friends and Family and many more who could not make it surround it us in our Celebration.
Sammy was exhausted after his party-he slept for 4 hours straight.
G-d Bless our Angel Sammy -what a Special Boy we have what a Blessing to be able to hug and kiss him every day.
Sincerely Sammy and Family

Magical

Hi Friends.Many of you know this lately I don't wright too often. Sometimes its just not much to share. But this weekend was -Magical.
On Friday we celebrated Eva's BatMiztva,when we welcomed her to a women hood.
The reception was truly Magical.Many guests came up and told me it was just like from fairytale.
It lasted 2 hours,but you felled like you where at very different place-like in the dream.
Not only Eva Chava was super confident,she also conducted that ceremony with an unbelievable strength for 12 years old that evening.With huge help of Notik Family this event turned out to be true celebration ,Chava Notik had kindly volunteer her time to prep Eva Chava for several weeks,and decorations of the celebration room was tastefully done by Rebazin Notik-Thank you!
The morning started early form me.I wanted to make something 'Special' for my dear Eva.
I picked up 180 roses and headed to Temple to make 2 flower arrangements as center pieces.What can I say -they turned out just beautiful,but first G-d had to test me.My arrangement fell on the floor 2 times before I was able to put it together.With a lock of much time,I continue with the task like nothing happened.
Sammy have had great few weeks.He looks great,stable thank's to meds and carifull skilled home care.
Sincerely Sammy and MOM

unbreakable

Hi Friends,
Today was very quite day.Sammy was sad. He did not respond to talk or touch.It looked like he was in such deep thought. I wonder if he can remember old days? If he remember our holidays or their meaning? All of this is a mystery and it looks like I can't get straight answer to it and its OK,life is full of unanswered puzzles. As we approaching Yom Kippur ,I often think of people that we met in the past year.I believe that G-d is bringing people together for reason and it would be our job to get positive/hopefully/or negative experience out of it either way you get to learn something or someone new. I have been working very hard to change my way of thinking about someone or situation. I try not to judge .Only if you are in that persons shoe and walk a mile -you will have a slightest idea what they have been dealing with.I don't talk about my home life at work if you see me there you will never guess what has been happening home.
The only thing that gives me up is.... One of my acquittance said 'I know this you have very sad eyes even when you smile... Well somethings I can't help-they are obvious.
Preparing for Eva's Bat Mitzvah and Sammy's Miracle B-Day we try very hard to celebrate life!
That is what we always believe in and always teach our kids to handle problems one at the time as they come and get help when needed if you part of the family we are here for you not to forget friends too.Together we are unbreakable-apart we are most vulnerable !
Stay strong Comrades,we still have a fight ahead its called -surviving .
Sincerely Sammy and Mom

Survival Mode

Hi everyone.I know ,I have not updated my blog for while.
Sometimes there is nothing to write.I guess I don't want to wright about negative stuff.
When you in' survival mode' you just running on your last strength trying to re-charge one day at the time. This feeling have been part of our life lately.That is when 'Helping hand' became most important.There has been many people who has been part of our life in the past 2 years .Some are new friends ,some are old.This organization and our Friend Sylvia who has been watching our family closely had reached out just on time before we could fall apart and break beyond repair. In the past few weeks 'Chai Lifeline' have been our savior and shelter giving us an opportunity to move ahead. Our Rosh Hashanna meal came from 'Chai Lifeline' too.Thank you.
Sammy is somewhat stable. He continues to have vomiting problems .He has some good days too.Loves being part of the family he enjoys listening conversation at the table feeling included.
He feels every wave and bump we go through ,he is very sensitive even in this stage.
Cherishing every day we can kiss and hug him ,we understand that this gift might be taken away from us one day. Sometimes a friend will visit and say -I had no idea how much time and work Sammy's care require , for us this is just a small part of a pot of duty and scope of work every day . We are happy to have it.
We wish every one very Happy and Healthy New Year.
Sincerely Sammy and Mom

Miztvah

Hi All,
Sometimes I can't get my self to write anything.It happen again . It not that I have no topic to wright about,it's just difficult to concentrate .
As we preparing for Eva Chava's Bat Mitzvah we must move fast.Normally it takes 1 year to plan,not in our case. It was decided on in July and it's happening in October.
Service is the main part where we will officially welcome Eva Chava to become a young lady.
Can't wait. We decided on special touches in this special service,like personalized kipah. Just like the color in her dress. We ordered it from'Kool Kipah.com' -they were the only ones that had that specific color we needed.After placing an order ,I was waiting for e-mail with invoice .
When I call to pay , they refuse to charge us for our order. I could not believe it,what a wonderful Mitzvah just in time for upcoming New Year. Thank you,we will always remember it. Sammy's B-day is coming up too.His Hebrew B-day is 25Th of September . His Birth Day is in the beginning of next month. It's very exiting and chaotic .
Just met another Mom on line,her 8 years old son that has same disorder as Sammy has few weeks to live. Only parent that is about to loose their child could understand the devastation and so very unnatural event they have to prep them self's for.If normal person would read content of this e-mails they would have their hair stand up on their head. Unfortunately ,I'm not alone in this. Why don't I feel relieve? Why this fact does not make me feel better ?
They are in the same 'Boat' . I can share my thoughts and may be,just maybe make some one else feel better .I hope I can find right words and strength to reach out to some one else ,it does make me fell that I have something left to offer to another person.
Sincerely Sammy and Gelena

house

Hi Friends,
It seems that we have been in this house for ever.Just moved 2 weeks ago,but the feeling of a 'Home' not leaving us. We can relax,sleep, do our chores in much better atmosphere than before.
You would think that its only place to live? Not really. Only now we can look back and see how much changed since we have been in our old house.The memories of the other place is not great.
Moving forward with old bills tagged alone to new ones we will be able to get through this too.
In the big picture well being of your loved ones is whats important .
Sammy have had rough week . He is very sad.
When our friends visit last weekend, I put Sammy in his wheelchair and whiled him out side .
He was ,so happy to be part of loud noises and some what familiar voices.
It became clear that he is in there and he needs as much interaction as we do.
His schedule remains the same. He have his walks outside every day and reading time with his best friend and teacher Laura ,who continues to read to him 5 days a week -no matter what.
Its just incredible how many wonderful people we have had pleasure to meet in the past 2 years.
If not for their support ,we would have allot harder time to go through our journey.
Sincerely Sammy and Mom

Hitting rock bottom...

Hi Friends,
Last week we hit rock bottom. Meaning , we need a plan. It happened that we give all the attention to our little Angel leaving everything else aside.It's clear that we have to figure out a way to get our life back on track . As far as I'm concern -its all will work out.
I guess I blind believe that we will prevail, that it takes time and ALL of our strength to get through every bump and moment of what ever it is we were destined to get through.
Main job we have now is to keep our family together from falling apart, sometimes realizing things that must change,pointing out things needed shifting and actually turning it around.
All this is important ,but not as important as Sammy's care. He will always be center of our concern,attention,affords -we can not have it any other way.Like my girls say 'Its family..' if anyone of us needs help ALL must rise and help with what ever it is possible.
Keep positive ,there is always a way or few out of difficult situation ,use your positive energy wisely.
Sammy and Mom

A Joke

Hi All,
Mom is finally speaking again. 'Too bad'-said my husband. He said you were a 'dream wife' during this few days. You cook,clean and never said a word.....
Our family always jokes.No matter what happens -humor is very important part of our life. You can make a point by joking without spelling it out. I just have to share this funny episode the other day:
At work ,this elderly women browse through our merchandise and finally said:
-There is NOTHING here that knocks my socks OFF!
-Well,/I said/ Ma'am, you don't have any socks ON?!.....

It made my day. It always makes it ease if you can switch your attention to something else -just try to make best out of it.
When people smile -there is a special energy around them-it opens peoples hearts .All of a sudden -you become friendly with person you just met 5 minutes ago...

Sammy . He is well. Sammy had few very good days! We needed that. He smiled,made more noise than usual. I have to give full credit to his nurse -that takes such a good care of Sammy while I work! She is really the best-we are lucky to have her .We also know this that he grew ,we were just trying to guess how much he weights?! This will be our task for this weekend.

I hope every one is well.
XOXO Sammy and Mom

Missing Sammy....

Hi Friends,
Today I was send home sick with laryngitis.I can't talk on the phone at all,so blog ,my e-mail
is only communication for now. I guess I can get a taste of Sammy's inability to speak anymore.Let me tell you-it is very difficult to hear everything and not being able to reply. G-d is working mysterious ways why laryngitis?
In the past few days I met another amazing women. We just talk.She had a very quite but sophisticated look,very intelligent and reserved. She was able to listen without interrupting ,something I never being able to do. I guess ,there is allot to learn .There is always room for learning,improving ,sharing.
Sammy . Sammy has been very tired lately. He is ,so beautiful. He lives for hugs and kisses,when I walk in he knows right away . What a special treasure Sammy is.
Small,beautiful ,crystal clear -this is the how many treasures come to our life.
I can't come close ,just afraid to pass this awful cold to him.
If any one only knew how much we missed our Sammy....His laugh,his smart jokes,voice,hugs...
Our new place is very peaceful. We feel great here. Very good energy,old oak trees in the back yard . I can relax here after every one is sleeping in the house.
Other wise ,no news is a good news .

something,somehow,someone......

Hi ALL,
SO glad last week is over. Its seems just we needed the most we were channelled to G-d 'path ' for help.Miracle did happen and Sammy will have home nurse to care for him while I'm working for 10 weeks for now. It was magical, something told me to call again,somehow I got to different extension ,someone call for us, the ball was rolling and the chain reaction put together right people to advocate for Sammy and Family. It was like my prayer was answered .
Sammy have had his share of though days .The vomiting is still a problem,seems that some function is not working as well as before.Is it fixable?
Sammy feels every emotion and understands what is going on .Last week was difficult for all of us .
Settling in our old-new place.Its is wheelchair accessible throughout. Sammy have used his new bathing chair and like his shower very much.The porch is on the same level,so when walk is a problem we can wheel him out for a fresh air. This home feels great ,our old house holds sad moments and bad vibes for some reason it's easy to breath here.
Our friends had visited all ready. Its is not what is home looks like or what size it is-its who you share it with. We love to cook and have people over and nothing can change that.
Sincerely Sammy and Mom

Falling through the cracks

Hi everyone,
Its second night in the row I can't sleep. Sammy's coverage for home nurse about to run out. I only have 2 more days coverage without any further schedule. I'm desperate .
Unfortunately cases like ours tend to fall through the cracks. Comes next week I will be waiting on final word from insurance company, I might have no choice but get media involved.
Making Sammy 'Priority case' will be my next out loud cry.
How do I go to work when no one qualified is there to care for Sammy?Our nurce have been with us for several month caring for Sammy while I work -we could not dream for better person to be with Sammy.
This will be something to prep for. No one can mess with my terminally ill son.
There is not a more important issue in the world that I will putting before his needs.
Trying to understand other side of the coin -people that are out there on the other side ?
Are they aware what desperate Mother can do?
I'm just about to find out if Almighty will be there to help?! We have enough taken away from us "NOW' is the time to start getting it back little by little,so Please 'G-d start from keeping me on my job -keeping Sammy safe with qualified care at home while I work.

Never ending Day

Hi All,
We are in new place -Wow.
That a move.It is our 7Th move in 15 years,we feel like we leaving Gypsy style-on constant move.
Our ranch is finally done to Sammy's needs and comfort. Its amazing how much we can handle in difficult and unusual circumstances. First day we moved Sammy was sleeping all day. I had to check often to insure that he is breathing. Few days we have had a low grade fever.It looks like Sammy is back to his usual cycle -once a month spiking something to keep us on our toes. However,he is OK.I don't expect any surprises. It just happened that our close friends who was able to visit after work brought dinner or lunch in the past week.It was ,so nice to switch my attention from unpacking to conversation and friendly meal.As a result of a move Mom's back recovering slowly .Marina is home .She was gone for 2 weeks and was missed very much.This whole ordeal have shaken and effected girls too including this move.They had to sacrifice space,comfort . I know one day,we will look it this period of our life and say: 'How could we survive it? How did we go through it?'
The only answer I can think of is - by sticking together! its easy to brake one person ,but family it's virtually impossible-support each other what ever your life is challenges are -remember
Your are not alone if your family and friends are by your side.
Sincerely Sammy and Mom

Getting through this week

Hi Everybody,
Getting through this week is our next challenge.We are moving in 4 days. Its not the emotional state of mind.It's the 'Stuff' that's going on around us.Serious 'Stuff',like change of medical coverage for Family including Sammy,its trying to hang on to my job ,moving to new location.
I try very hard to pin point what is more important,what should I pay that little bit of attention that I have left.Were do I get the strength to compete with other sales people at work that are not on very strong unti-depressants like I'm.Confusion,inability to make decision ,multi-tasking this is my main challenge at work.As I mentioned before on my blog,my intuition is never wrong,why do I have a feeling that I'm undesirable employee after 15 years of service? Is it because Sammy's medical bills driving insurance premiums up? Is it because I have a 4 day week schedule that was grandfathered in after many years of service? Or its because I had to take Family leave of absence? I know I'm being watched at work every minute ,every move I make,every breath I take,someone is waiting for me to make a mistake! I'm a target ...
The only thing I know ,no matter what happens,I will never leave Sammy unattended -if my life depended on it! I will never lose my self respect or dignity !
Sammy has been fine this week.He is very quite this days. Stable thank G-d and our privet duty nurse who is still approved until July 31. She is the only reason,why Sammy has not been hospitalized since she came on board and covered Sammy when I go to work.
G-d will be jugging people that may take away medical coverage from this beautiful terminally ill child comes Aug 1st! If they think it can never happen to them ?!
We are strong and further we fight for Sammy the stronger we get,so we will do what we have to do and I will not give up that easy!!!!
Sincerely Sammy and Comrade Mom

Loosing a Friend

Hi every one,
We just lost a very Dear friend and Doctor who try very hard to help others all his life.
When we had learned about Sammy's illness this family was by our side every step.
For several years fighting his own battle ,it bothered this Doctor that there is no cure for ALD -he always try to find a way to help Sammy. He will be missed by many,his academic achievements and work in genetic reproductive medicine ,stem cell research will be always remembered .He will be always remembered as a specialist ,doctor,dedicated family man and wonderful friend.
I'm speechless and very sad ,our heart go out to dear family members .
In such a difficult moment ,this family decided to ask everyone make a donation to www.sammyzeltserswish.org instead of bringing flowers and baskets to the funeral.
I could not believe how Special this people are to think of Sammy while loosing their beloved husband and father. It touched our hearts .
What an amazing people. I felt we was getting another massage to help others when we can .
Start from saying something kind to someone who hurt your feelings before...and watch what happens.....
Sincerely Sammy and Mom

Move

Hi All,
We are ,so use to getting 'the news' in the past 2 years that it's almost unusual to have stable month or us.As I suspected we yet have to overcome our next obstacle - big one 'A move'.
Yes,we finally moving to a -ranch style home that was design for wheelchair access.
Since we learned how sick Sammy was -it has been very hard to upkeep our 'dream home'.
We battled this decision for the past 1,5 year still hope to see Sammy walking on his own. Now in the process of moving -it feels right to give up this place,after all it was build for our family comfort. Since Sammy's illness I have had nothing ,but difficult time to get Sammy out for a walk everyday with stairs up/down from and to our house in his wheelchair.I have been afraid ,that in case of emergency I'm not able to get Sammy out by my self -wheelchair-120IB + Sammy 85IB.
Its too much weight for me to handle on steep incline /decline stair case.
Sammy is well. Te only concern is 'environment change' .Apparently change of room,air ,bacteria can effect people.
This is interesting time in our life,when in 2 years as a family we must go through many changes .I must say that more obstacles we have to overcome-the stronger we become!
Its easy to give up and not care or try-its hard to survive and come out of this situation with your head held high .
As far as I'm concern -we are doing OK.
But remembering this old saying 'G-d will only give you as much as you can handle....'-looking up in the sky I'd say -this is it-this is ALL we can handle !
Sincerely Sammy and Mom

Sammy Zeltsers Moms Blog: Day at the time

Sammy Zeltsers Moms Blog: Day at the time

Day at the time

Hello everybody.We hope your long weekend is full of relaxing time with your family.
Sammy ,however have had another tough week. He seems not being able to keep much in his tummy.We started very careful routine with tube feedings. Feeling of fear ,my mind tells me Sammy is at very high risk of aspiration every time he is vomiting ,my heat is telling me it does not depend on us that much -every one of us has an 'expiration day' and no matter what you do it will come when its written ... Constant battle ...
I often think of our body and soul,how important it is to keep those comfortable with each other.But body is only your physical state -for me - soul , has much different meaning now.It goes beyond our understanding , we can only see and feel as much as our personal growth ,intuition will allow us to.I do believe Sammy is uncomfortable in his body now. His only shelter is us -his family ,that's what is keeping him here.We can't let him go,we will never be comfortable with the thought that he can leave us any day now.
Getting through a day is a great news,so let's take day at the time.We can only over come our challenges as they come-Day at the time. How about you ?
Sincerely Sammy and Mom

No mater what

Hi all.
Thank you for your posts and support as always,we could not make it so fa without your prayers and support.
Alex doing OK. He is in New York today at Ohel,praying. Never religious before ,he found shelter and peace in religion. Many unanswered questions still remains and some may never be answered,but the process of thought and constant thinking helps personal,spiritual growth.
Sammy stayed home without walks for couple of days for few reasons. We felt it make sense not to expose him to heat ,high humidity .Also take it easy and watch his feedings carefully.
As I was seating and re-tracing my steps the day of the vomiting,I remember giving Sammy his usual one of 2 brands of feeding cans.The only difference was that the one I give him was last used 3 weeks ago. We stop that brand ,since we had no problems.He must have developed some intolerance during that grace period.
Today ,Sammy was rather playful and smile allot. We love when Sammy is comfortable in good mood -it make everything OK for a moment.
We live to see those moments,when our children are happy -no matter what.
How about you?
Sammy and Mom

Toght week...

Hello all.
Past week has been tough.
I received a phone call from Alex ,my husband.He was admitted to the hospital with chest pain. Of course I left work and race to the hospital to see him. I entered the hospital room a friendly nurse had introduce her self.Monica had taking notes on what Alex complaints are he said:
-Nurse I have a problem . She reply what is it ?
-I can't sleep alone......
Than he was wondering when entertainment is coming? Monica said : TV is it!
Alex said: I thought this was All inclusive!
Once I heard his jokes ,I was OK to go back to work. After many tests he was realised next morning -on fathers day. Still had some chest tightening ,we hope is a muscles.He is better now.
Sammy ,however have also had his share of problems today. About 5 am he started to vomit.
Than repeated at Noon. After evaluation ,our hospice nurse said we have to be very careful with his g-tube feedings for few days.
Even know ,today was extremely hot day ,Sammy and grandpa found 'little haven' .Its just a small corner in our back yard that has tree shade and nice air flow. They spent most of afternoon there.This spot is very special grandpa said.Every time they are there-Sammy is listening to birds singing and any other noise around him.This is a spot where Sammy opens his eyes wide and seems very comfortable.
Thank G-d for our family,friends- their sacrifice,support ,love and dedication -this is very powerful strength that is keeping us a float.
Sammy and Mom

Outlook....

Hello friends.
Just could not sleep last night. Something was bothering me . I was thinking about my conversation with young women who was able to escape cancer spreading by early prevention and regular check up. She was bitter about not being able to have more children and talked about being unhappy . I had very different outlook on her situation. I feel that you have to concentrate and be thankful on what you have rather than feel sorry for what you could have -in her case she has 2 healthy ,beautiful kids.
If you think about our daily routine and news we listen too, there is very little of positive.
Its easy to go with a flow and drag your existence ,but try to find positive in every day life.
You will see ,how much happier you will be. Just simple smile and thank you to a girl behind coffee shop counter will make her day.Whatever you do ,whenever you go -try to bring goodness . I try to reach out to people that hurt me ,that feels right to know that I'm better person.You don't have to go to extreme ,but reserved interest and participation in persons life when in trouble or lost -takes you to a different level.
Sammy is OK. We met new hospice doctor few days ago.He stated that Sammy looks good.
I said its the love he gets and all the hugs and kisses from family. That is why Sammy is still with us -I know that he feels the love and care every day at home. Would we ever give Sammy up to 'Special' care facility? Never. He is our angel and he belong with us.
Count your blessings .
Sammy and Mom

Bris

Hi ALL,
There has been ,no changes in Sammy's condition. Our hospice nurse visited after week break.She though that Sammy look little pale and had minor changes unfortunately not for better. We all have days like that-I said. Still believe in better ,we refuse to accept the fact that we loosing this beautiful boy little by little ,day by day.
This morning we was part of 'Bris' celebration. Our good Friends Muchnik family welcome their first son .This was truly a special occasion .We reunited with many friends and community members we have not seeing since Sammy's illness. I got a 'Flash' back from Sammy's 'Bris'. I remember being ,so nervous and upset that my baby was crying.
I had only one felling -Happiness for our friends that after 3 beautiful daughters -finally got a son. I could never feel or try to compare our situation to any one else .For us our situation is for us to handle ,it does not apply to anybody else. G-d has a special plan for us.One day we will discover exactly what it is. Through out this path and ,so much pain it feels that Almighty has been holding my hand ......

Growth

Hi All,
This days we realizing reconsidering a human power. Yes,that's right.
Before Sammy got ill ,I've always thought that we as a human beings can do and change everything.Than after the bad news -we felt helpless.We run after every possibility to save Sammy and still have not achieve desirable result. Than I felt little-lost. Just like a dot in the giant map.
Time went by and time is the best doctor . I started to recognize my strength and ability to make a difference. I feel it all your attitude in life,how much I changed from taking things for granted to appreciating waking up in the morning. I feel that my personal growth and relationship with my family had changed drastically for positive. I realize that beneath needless things I wanted,it something very special that makes me happy- my kids laughing and bonding ,hug from my hubby, a support and love from my in-law family and much more that is way more meaningful than new handbag or pair of new shoes.
Sammy is well .As well as we can wish for at this point -comfort ,pain free life is what matters now. I can see he is still declining ,but not as fast as before.I guess after all bone marrow transplant might play a role after 1,5 years after.
He is a beautiful child .His skin is flawless and he looks healthy .If you look at him while he is sleeping you could never tell how terminally ill this child is -he looks perfect just like Angels do.
XOXO Sammy and Mom

XOXO

Hi All,
We are in busy 'life twister' -not enough time for work,home. Since Mom went back to work, time spent with Sammy is a treat. Constant battle of emotions and guilt ,has been on Moms mind .Return to work was the best remedy even know there is fare amount of stress there too.
Sammy has shown great stability in the past week. He is happy and pain free.He loves commotion around his room,different voices,book readings and long hugs.
Sammy and family have a new friend now. Annie is his new massage therapist.She brings very warm presents and powerful positive energy to our home.Every one can't wait to see her.
Countless friends around the house always welcome .We have a great time in the comfort of our home next to Sammy-he must be part of our daily life -no matter what.
Sometime you feel disconnected .Don't give up,you can find good people on your way.
Keep your eyes open,stay positive-life is full of surprises and it's up to you to recognize positive and make it part of your life.
XOXO Sammy and Mom

Spring swing....

Hello everyone,
Sammy got new hair cut.Buzzzzzz! The most interesting thing is that after transplant his hair got very dark almost black color.It turns out that under it his own lighter color coming through.
It seem that Sammy is getting back to his own more comfortable body ,even know allot of functions have been lost . His condition is much more stable ,when he does not have to fight any bacteria. We are careful with anyone who is visiting him in his room-hand wash is a must.
Just recently,I spoke to few people that indicated more cases of this horrific disorder in boys.
The age of boys are in much wider range than ever before. We have heard of effected boys as young as 2 years of age to nearly 14. Most cases believe to be from 6-12 years old before.
Parents of this kids will need a tremendous amount of support , that is why our web page is existing -please pass it on ! We are here to help other parents to support and help to deal with it.
Our house is full of friends again. We are back in to full swing this spring! Life goes on, we are living through our pains with friends and family.Just recently,I found my self thinking about 'things,some people that aggravate me'. Why waisting time on it? I guess our upbringing and constant reminder of to be 'kind to another person' prevented me to do 'Spring cleaning'. Not anymore. Get rid of negative in your life! What ever or who ever it might be!
Of course that's if you can recognize it first. Life is too short ,to waist it on unnecessary commotion.
Sincerely,Sammy and Mom

Play in my sandbox Mom....

Hello everyone,
Another party for Mom! This Saturday, my husband ,all kids and family was working very hard to cook ,clean ,serve! Saturday is Moms working day,so I entered in to 'Mom party heaven' that day. Everyone work ,so hard .Alek's cooking a storm!My older son Mike grilling,Eva setting up tables,Marina cleaning up .Wow! Thank you ,so much -what a treat!What about next year....?
Now ,back to our Sammy. His schedule have been pretty full .Every day we try to keep tight schedule on his meals ,play time,reading,walks outside,family time.
Mom finally found a great hand message unit-new gadget. It works great on Sammy's back and the rest of the body . His mostly laying positions has increased weakness of muscles and this is one way of increasing a blood flow and relieve ache .
Just today ,spending sometime with older daughter ,we remember how funny ,Sammy was before.We reminded each other of ones great times with now ,so weak Sammy.
I remembered taking a jacuzzi for the first time in the house,how my kids learned how to pick a lock on my bathroom door and enter .They end up in my jacuzzi in split seconds from entering not bothering to remove any of their clothing.
What a mass this was!Not only water overflowed on the floor , after we finally stop laughing hysterically and exit the bath-we discovered that there was very little water left since every other drop was spilled on the floor.
This are the precious memories ,that we will cherish for the rest of our lives.
Do you have many memories with 'parents turning to kids for a moment'?
When you fell like playing in your kids sandbox? Does it means as a child you have not played enough with your dolls? Do you ever wonder if your kids will remember their childhood as fun times?
XOXO Sammy and Mom

Follow your heart..

Hello Fans,
Its weekend again.
Sammy had pretty quite week.No surprises -Thanks G-d.
Mom has came back to work last week and had a 'warm' welcome back. It has been great change . I guess I was just too consumed with my own health concerns in the past few month,that I have forgotten how much I really missed selling and just meeting new people.
Retail had also changed in the past few month. Ones I get my perspective on different kind of stress between work and home- were my other hardest job in the world waiting for me -being a Mom. Every day I wake up with a new eye opening discoverys and thoughts.....
Sometimes it feels like you standing behind closed door and too afraid to open it-sensing that some one might be standing there...Which way is that door opens? Can you hurt someone if you open it too fast? Or to your surprise there would be no one?
Life is a constant guessing game ,do I figure out the right part of this path? or will get further away from the ultimate goal?
Its for G-d to know and for us to find out.....All we can do is follow your heart .
For now good night..
Sammy and Mom

Challanges

Hello fans,
Happy Mothers Day.
Naturally I had to work that day.
Our home is filled with flowers from my B-day.Mothers day and just flowers from friends.
Sammy is doing as well as his condition permits . Lately he got another increase in meds,to ease his pain.Relaxed he have been having allot better days . He is continue to takes walks everyday with Grandpa and Dad sometimes. Otherwise he is mostly in bed or on Moms lap .
I often think of people that surround us. Every one of you that had reached out or pray for Sammy has been in my prayers too. Tremendous support from all of you give us strength .
I specially pray for G-d give us power to understand and except things that we can't change in our life's. Sammy's current condition has been difficult to understand or except. I believe in chance of the miracle-it had happened before to other people and can happen again to Sammy.
Sammy is our Blessing and our whole family's life is build around his needs no matter what.
He is home and getting love and care he needs-we can't have it any other way.
Its is challenging to get back to work and still be a care taker 24/7,but life is full of challenges and we take them one at the time.
XOXO Sammy and Mom

Who is in my bed?

Hello friends,Thank you for million B-Day wishes!
Mom is officially 'big girl ' now. Never care about my age ,probably never will. I just see the importance of living productive life,hope that I can make positive difference ,no matter how long we have in this world.Big deal few wrinkles more .I think what matters is how much you had accomplished in your life not how old you are.
What a week! I went back to;' work today. It' was great to see many old friends and co-workers.
I'm sure it will take me sometime to get back in to routine,but my return fell very natural.
It was like fish getting back to the water,after all this is my 15Th year with this company,this is all I know and love doing-Selling gorgeous shoes! If I can't buy them all-at least I can see them every day and try it on..
Our Sammy was very confused today. At first he could not figure out who was in his bed. His older sister Marina is back from collage. Exhausted ,she completed her year with good grades.Go Marina-We are very proud of her.She exided our expectations so far!
She was ,so exited to see Sammy and family ,so she fell to sleep in Sammy's bed .I was just checking on him and could not keep my self from busting in to laugh. Sammy look exited,but confused.On one hand he got emotional and enjoyed cuddling with his older sister on the other hand he was trying to figure out who was in his bed?!.Ever since he started to talk instead of saying Marina -he shortened her name to Nina.That is what he always called her .
XOXO Sammy and Mom

Bend don't break...

Hello friends,
We have a good news,no one else has been effected by salmonella in our family.
Still working on promoting caution with in the household and school not to spread bacteria further ,awareness of importance of hand wash and not sharing any food with any one has been our focus.
Sammy is doing well this week. It's hard to believe we can catch a break for now.
In few days ,Mom's B-day . Its a 'BIG' one. Knowing that celebrations is impossible ,we are going away for 3 days this weekend . I never thought I can think of relaxing or catch some sleep....
Looking back on the past 3 month,the only thing I was preying for is for Sammy to be with us for much longer and strength to handle all of this.After going through some difficult time in the past 3 month,mom is coming back to work on Thursday of next week.
I keep thinking about how fragile we are,how easy is to break down. What comes to my mind is old saying 'Bend don't break' or 'Scare me G-d but don't punish me'....
Keeping strong is my goal,getting back to work and do my best that is what is on my agenda.
How about you? What is in you future? What is your plans?
XOXO Sammy and Mom.

Salmonella

Hello friends,
That's right we are dealing with salmonella now. Sammy's sister came back from vacation and borough a 'present'. At first she was OK. Than after just few days ,she was in severe stomach pain. It took a week to get better. At the time we treated at as 'stomach flu'. When I got early morning 'wake up call' -I could not believe its -Salmonella.
I just had to laugh. It was probably a weird reaction,but how much one family can go through in such short time? Forget the rest of us- the scariest part it can effect Sammy. We are waiting for results.
Mom was on cleaning frenzy all day.Disinfecting all the corners ,specially Sammy's room .
Sammy end up in the long bath.He loves bath salts from dead sea,they are lightly fragrant and bubble. After socking ,massage,lotion and all 9 yards. He was tired,so is Mom.
Concentrating on constant hand wash, sterilizing for now. We will find out in few days if any other family member is effected.
Otherwise ,business as usual. How about you?
Sincerely Sammy and Mom

Soul

Hello everyone,
Ones again Sammy is better. He is able to respond and listen to many people visiting.
He enjoys a story teacher reading to him,some times making signals that he is following.
Now that is warmer outside ,Sammy can be outside even longer .
On the other hand Mom is distressed after awaken from a really vivid dream.
-One women had a difficult time in her life.She was fighting for a chance to save her child's life ,trying her hardest with her family by her side.
In one moment she hears a voice . It was her Soul talking to her saying -'Give your self a break,take it easy for a moment'. Familiar situation? I realize it was me looking at my self from different point of view. It is really a time to slow down?
Would it mean that I'm giving up on the fight for Sammy's life? Or it would just mean to give my self a break?Or it means that I had fulfill all possibilities and have to get use to that fact?
I was not able to find an answer, can you?
xoxo Sammy and Mom

Whats cooking,Good looking?

Hello everyone,
Finally Holiday week is over. Sammy was stable for weeks it was nice while it lasted.He has been running low grade fever for few days now.We never know what to expect .
Its like a gamble trying to figure out what is the cause of fever.It reminded me of an expression that Sammy use to love 'Whats cooking -Good looking?' It seems to me that Sammy is cooking something , hopefully its just a cold-nothing serious. G-d knows we want to have him with us as long as possible. Seeing him every day and being able to talk to him -brings us happiness.
Monitoring his vitals every hour helps keep truck . I try to think with my head ,not my heart .
Otherwise our daily routine stays the same with exception of outside walks. One one hand its good for Sammy ,on the other hand my instinct tels me - we should skip it until we can stabilize his temp.Tomorrow we will know more what is going on.
XOXO Sammy and Mom

Where are we?!....

Hi everyone.
This Holiday week is great and sad the same time. Before when preparing for Passover kids always made special trip to do Passover shopping. This year ,it was not the same.Last year ,I cant remember much of Passover,we where still in the hospital with Sammy.This year during Passover shopping we came across special items that Sammy use to love and waited whole year for . It makes Holiday full of memories back when Sammy use to run all over the store looking for chocolate covered Matzot packages.....
Something else surfaced in my mind ,this time last year ,I read an interesting book that I keep coming back to.
It comes to my mind one fragment of the book . There was a paragraph dedicated to stages of grief. In my mind ,I had check marked stage by stage that was described.
Anger-did that.Bargaining-possibly,Acceptance-that is the stage we have been stuck with for the past several month. It is against our nature to accept Sammy's decline without continues fighting,believe. It seems that after all this rules does not necessarily apply to every one at every time. So where are we in this stages? Its seems that we go back and forth up and down the stairs. Do we all made of the same material?How much fuel do we still have?
Stubborn believe in the bright future ,no matter what today bring us -is what we know best. There is always a sunny day after rain,there is always warm weather after cold winter.
Sammy on the other hand surrounded him self with many girls.He enjoys attention from every visitor . From reading , music therapy to regular nurse visits ,soon massage therapy and walks outside. As long as he is involve in activity and does anything but just laying in bed-Sammy is happy. That is our goal ,to keep Sammy's days happy. Give him as much attention ,love support we possibly can.
Do you know where you are in your life? Is there anything you wanted or regret not achieving?
Sincerely, Sammy and mom.

Tender Care

Hello Friend,
Sammy had a beauty appointment with Mom for bubble bath,manicure ,pedicure and massage .How many of us get pampered on everyday basic? Well ,Sammy does.
When he was done with all the trimmings,filling,cleaning,massage-he was exhausted . He looked like a million dollars and shined like a brand new coin.
Every one made a comment how good Sammy looks and smells. Occasionally we would see a smile on his face 'felling good'after those comments.
While Eva and grandparents was on vacation the house was so quite and clean.
There is something unnatural about quite house. We always had ,so much noise while our kinds was growing up. I never new that there is other sounds- other than kids laughter ,much noise from playing games,solving disputes between siblings.
There is a pattern of weird events that something is braking every days.
First there was a fridge ,than a pipe,today Sammy's feeding pump . I don't stress out about those small things anymore. I know that things will work its self out naturally. Of course its nice to have life running smoothly ,but there is no such luck-everyone has one of those days or weeks or years/in our case/
Have you ever been stranded in chain of unfortunate events? Were you able to deal with it without stressing out? Are you kind of person that thinks with its heart or head?
XOXO Sammy and Mom.

Walk

Hello friends,
Today was a great day.Sammy was awake the whole day.
Lately Sammy's cough gotten little more difficult to manage. Some days its more productive ,some times its just too hard for him to manage it.
As we walked outside ,I realize that his stroller has side to side movement and going through many bumps on the road - moving Sammy constantly in 'rocking' motion . This is great way for Sammy not only to get fresh air,but also get 'massage' benefits that's great for his lungs.
Getting back to his regular routine has been very difficult after last hospital visit 2 weeks ago.
We see definite changes ,less movement .
During our evening' family time' Sammy enjoys cuddling with mom and dad near fire place.
Constant reminder that his is very special boy and loved by everybody make him feel good.Sometimes Sammy would move his lips trying to make sounds . We understand him without any words .He is holding up and keep fighting.We should all learn from Sammy.
Sincerely Sammy and Mom

Episode

Hello All,
Just was thinking about episodes. It seems that our life is made of it. In extreme situations we get flashes back of our lives that left the most impression .The emotion involved is not just a memorable event or a major announcement it just an ordinary -episode ,from ordinary day of your life -its almost highlighted somewhere in your mind.
Yesterday Sammy had an episode .The images stock in my head and I know it will re-play over and over in my head . At the end of Sammy's feeding he started to grasp for the air .It was not only scary I was thankful that we had a nurse there at the moment. This kind of episodes is the most common for aspiration/when food or anything else get to the lung area causing ammonia /. When it was all over ,our part time nurse saved Sammy, I found my self in the corner of the closet sobbing. My hand was shaking, I could not speak,my thoughts and flashes of Sammy's life went before my eyes.Is if I was watching a slide show,since his birth till now.
We were able to move on .Getting him out for a walk was the best thing we did.Clearing your mind and know this birds was singing, finally got me back to my usual balance.
I know this devastating disorder have had claimed many boys life's ,but I hope that miracle can turn it around .

Experience

Hello fans,
Was just thinking about our life experiances. How in my opinion our brain stores this information ?In our life we store our feelings, experiances in a small package of information someware in the back of our mind with a lable-'Lession learned'. When ever you would come accross simular situation again -there it is -you remember it and re-leaving that experiance again and it does not matter if its good or bad. What trigers it? Its hard to say ,maybe situation you are in at the time,maybe a song or a smell -but for sure ,older you get more of this little packages you will collect on you way and -it becomes -heavy baggage called -experience.
Some were in the middle of your life your package gets so,heavy that you need to figure out how to handle this weight . Have you ever stop and think? Were I'm? What is my next step?
Have you ever felt like a tired horse pulling your baggy without a brake?
Just one of a million thoughts that runs through my mind.Sometimes at very high speed,sometimes like a turtle walk speed.
Sammy has his new schedule. Ever since my kids was babies ,since birth I found what they needed the most is love and schedule .Structured day works best for everybody.
Sammy gets his feeds the same time everyday,his walks outside,bath time,reading .
He have been having more difficulties with movement.He is doing well considering circumstances and looks great,but coughing has been our challenge.
Moving along with this life experience -we will never be the same. Nothing matters in life ,but your loved ones . Its that simple in my opinion of course.
XOXO Sammy and Mom.

Simply Amazing ....

Hello friends,
Our latest news-no more school -Sammy's pediatrician suggested not to continue.We agreed .
If you think about how much bacteria is in any school -you really don't want to expose Sammy to it. With no more school ,comes schedule change and activities to be planed.
Sadly ,Sammy will miss his 2ND grade classmates from Hickory Point elementary and great team of dedicated special needs teachers,aid,North Shore Special Education specialist ,school nurse and office-Thank you !-we could not have made it so far without your help!!
On the brighter side -Sammy's aid teacher /from K and 1st grade/-Laura will be tutoring Sammy every day.He recognized her voice and enjoying a great action series of 'Narnia'-which is very appropriate for Sammy's age.He listens to her and reacts with blinking his eyes.
This kid had fight off 'Staph' infection-what simply amazing boy! ,what and incredible strength.We realize that he is our teacher! Every step of the way for 2ND year straight - he have shown how to be kind ,respectful,funny,be courageous with a smile on his face. How can we not see all along that Sammy have been showing us a path ?! We have been following the 'written path' all alone with easy guidance.Is if we got lost in the dark forest and trying to find path home.
How can you not believe in destiny?Our lives written ahead?
Is there more we can do for Sammy ?! Absolutely! There is always something like music lessons,massage therapy, bath therapy/with special smelling bubbles/, long walks outside with grandpa and much more...
We are enjoying every moment with this incredible child and thank G-D for the opportunity .
Sincerely Sammy &Mom

Wild river

Hello friends,
Sammy is finally off antibiotics. Weak, he continues to fight. Its obvious that his dependency for medication increased over last few weeks . Pain management adjustment is necessary at this point. Today we will see our doctor to asses his ability to return to school.
In the mean time this wild river of emotions taking us from side to side ,we just hope to find -safe harbour one day. See Sammy every day ,being able to talk to him ,touch him -is a blessing.
There is something to be said about 'Counting our blessings'. You would say it insane ,that usual responds to our situation would be -anger,but we are not angry . It easy to turn around and hate the whole world . Its not easy - to understand situation ,make some sense of this test,learn something and keep going one step at the time .
With Sammy in mind -his example how to stay strong -we must find strength to keep going.
We are not alone -with help and continues support of family ,friends we are leaving day at the time .
Sincerely Sammy and Mom.

Come home,Sammy

Hello everyone.
It has been 9 days we are in the hospital. Its time to go home soon.As always ,Grandma came to our rescue staying with Sammy last night . Mom went home to catch up on sleep and....
It was very important to get bedroom ready for Sammy. Everything was striped out and re-placed. From bedding to toothbrush. I feel it was important to eliminate any chance of
'Staph' infection lingering any wear . After every inch of that room was disinfected and inspected -satisfied ,I return to the hospital .
We are finally taking Sammy home-where he is ,much more comfortable.
While in the hospital we had a conference on updating and bringing family up to date on Sammy's condition.
What can we say to summarize it in to one sentences its sounds like-'Hope for better ,prepare for worst.'
This massage was spelled with hope to bring ALL the family members to the same page.
Will this help us realize severity of Sammy's condition or it will push some of us further in to depression?
Each of us had interpreted this massage as their state of mind had allowed.
It was good to hear different presumption and point of view on Sammy's condition .Food for thought ....
The good news is -we are going home this afternoon!!
Sincerely Sammy and Mom

Why not?

Hello fans,
Purim is at our door. Every child enjoys this holiday. Naturally I remember few fragments from my childhood.Ever since young age I always wanted to step in to paddle of rain.Just like that -in my socks,shoes,pants . Yesterday -I finally did it!!!
Flash back to my childhood and constant reminder from my mom-'Don't get dirty,don't get in the paddle ,don't clime on the trees....
Why not?
We loved making mass !!! Its ,so much fun!! And Sammy and I use to hide behind close door ,so we can jump on the new bed!!! I can honestly say that letting my kids do fun ,messy stuff sometimes connected me to things I wanted to do as a child and was never able to.
There is one more thing .... Every B-Day I always wanted to stick my hands in the cake !!!
I just wanted to mush it and leak my figures after! Goofy ?may be -will I do it this year?-Absolutely!!!!!This is what I want for my 40Th B-Day!!!!Sammy is getting wonderful care in Children's. We have had many visitors ,chaplain,case worker,doctors,nurses.. Many people know Sammy and Family. Our constant search to help Sammy gets attention on his condition. Subsequently ,more doctors 'look up' this disorder -more doctors will keep ALD it in mind for another kids with similar symptoms.
Today news announced that Stem Cell treatment restrictions was lifted and it will take 4 month for guide lines -this is very good news for people like Sammy -who's only hope is new cells.
Its just ,so sad that it might be too late for us -4 month is a lifetime ....
XOXO Sammy and Mom

No whining...

Hello friends,
Its Sunday and we still in Children's.
Weather outside is a perfect reflection of my mood.Its rainy,foggy and depressing outside.
Sammy is doing fairly well.Slowly he starting to show more awareness and making sounds.
He is so brave and strong -he is our role model! We are learning from him how to be courageous and not give up. How is it possible that such a small child can have so much to offer? How is it possible that many people live their full life time unknown and really don't bring much to the table and on the other hand Sammy only 8 years old can effect ,so many people in such positive loving way?
This is experience that change peoples life's ,I know my family,friends are deeply effected by this fight.
That is why ,I cant tolerate whining! People that are annoyed by little unimportant thing.Like their coffee is not right,or their nail is broken....
There is no time for it -use your life wisely ! There is ,so much to do and every little positive thing you do matters!
When we got here ,I underestimated how long we will be here .Since I stay with Sammy in the hospital 24/7 ,I did not take some toiletries from home wishfully thinking that we will be home with in a day. I learned that no one had shampoo or conditioner here there was other things like toothpaste ,brush.
Next day we ordered packets with shampoo and conditioner. With other people in mind , for parents just like me - who get stock in the hospital and can't leave their kids .
This is another small token of positive deed that was done in Sammy's name.
When is the last time you have done something for someone without expecting a favor back?
Do you reach out to others or prefer to stand a side and watch?
XOXO Sammy and Comrade Mom

Hold on Sammy....

Hello friends. Sammy is fighting,but very weak. Staph infection is bad.Its worst in his case do to low immune system and tubes in his body.Staph loves plastic and Sammy's port/in chest tube to get immediate access to his vein/ is infected ,also there is more plastic -G-tube/feeding tube/ is also plastic. Lab is growing bacteria to determine witch one it is, but this is one of those Mega bacteria that can outsmart antibiotics.Many times healthy person can't fight it off do to constant change .
Feels like we are trying to hang on a 'straw' while drowning.
We are hopeful ,but just exhausted every possible options.There is nothing left in side-no feelings no emotions-it is what it is and its out of our hands . Just mind blowing how Sammy's body and organs are strong but brain has deteriorated so much .
Its unbearable to see his suffering for all this time . I just pray for whats is better for him -only miracle can turn this around.

Love Sammy and Family

Sammy is mad...

Hi All,
Last night the whole family came to visit. It was so said to hear older kids complains that they can't even hold Sammy .How much can you really feel through robber glows and all dressed in gown and mask?
Sammy scared us ,so much that we decided to tell Mike /his older brother/.He was planning to visit later on in the week ,but changed all of his plans and came right away from New York.
Ones again our family was together going to dinner with exception of Sammy .
When I came back to the hospital after 1,5 hr,our nurse told me that Sammy was mad that we left! I could not believe it! She said that he refused to cooperate and seem uncomfortable not hearing moms voice! Can you imagine?! So our strong connection is mutual-umbilical ,what can be stronger?
Today ,Sammy will stay with Grandma, I must see my own doctor .
Thinking ,analyzing the danger of spreading 'Staph' in our home ,it would not be a bad idea to change ALL bedding,towels and much more that came in contact with Sammy before we left to the hospital. Major 'Chlorine ' cleaning in Sammy's room would be my target before coming back home.I want every little bit of this nasty bacteria gone!
As we moving slowly day in and day out with this difficult situation, I realize that in the past 1,5 year we got to know each other ,so much better.I have seen and got to know very special corners of my husband and true colors of many people I thought I knew well before.
Ones marriage has been through this kind of life experience its very easy to grow apart.I fell that we got much closer and trust each other now with our eyes closed.Our senses and thought are very much the same.This makes it ,so much easier to keep believing ,praying,fighting for Sammy.
Last night when I was returning to the hospital and saying 'Good night to my husband ,my husband said:
-Thank you!
-I said for 'What'?
-For being such a great Mother and Wife.....

XOXO Sammy and Mom.

Staph infection

Hello friends.
We are still in the hospital. Out of Intensive care ,but still 'in sterile' have to wear gowns and mask when walk in and out.For now we are limited to family visits .
This afternoon we find out that Sammy has infected port and same infection is in his blood stream too. I remember fist hearing about danger of 'Staph infection ' back when I give birth to Marina .We hope that Sammy stays strong for upcoming surgical procedure -port removal.
In the mean time we suspecting to be here at least for the rest of the week to insure that infection is gone completely.
Today Sammy got flowers and beautiful picture book with voices of each person recorded on each page. What a way to say 'Hello'! As usual -our Classroom teacher Mandy and Speech therapist Jen came to visit bringing talking book & flowers from school office and principal -Thank you Hickory Point Elementary !
Mom is getting countless phone calls ,but unfortunately can't answer them all.The floor we are staying on in Children's does not permit usage of cell phones do to equipment used on that floor.
With a respect to other little patients I limit my phone calls by room phone .Please leave a massage ,I will try my best to call back .
We appreciate every prayer and positive thought -it means allot .
Sincerely Sammy and Mom

Luck of draw

Hello friends,
We had a long jorney yesterday .Sammy developed very high fever over 1 day.He end up in Children's again this time in Intencive Care Unit-insolation with croup .
From Glenbrook Hospital where he was admited with 105degree fever than transfered to Children's there after.
Last night was very scary .It was as close ,as we ever come to loose Sammy -he has been working very hard and deserves best possible chance for a miracle. Right then and there we pledged that we will do everything possible to continue helping Sammy to fight ,pray for his recovery.
I realized that even know it might sounds better and make more sense in Sammy's deteriorating condition to ' do not resuscitate' -we decided that pulling a 'plug' on your own child is not for us. Every one has there own expiration time and it must come naturally, after all no one knows how long each of us have in this world .
What comes to my mind is here we are fighting tooth and nail every minute ,second for the past 1,5 year for Sammy and there are other parents that destroy there healthy kids mentally and physically!
Luck of draw is mainly what I see happening here. There are many unanswered questions .Why G-d wants to take the "best ones'!? leaving others here in this world for us to deal with....
XOXO Sammy and Mom

Time bomb.

Hello every one.
WE are home -this was first thing I told Sammy. He seems more relaxed and knows he is in his bed ,all noises are familiar .
What's next?! With last MRI report we understand that we have less time with Sammy that we anticipated.Its like a 'time bomb' -ticking slowly and has very little chance to stop from exploding after time is up.
We keep our home open to any friends that would like to visit. With a strong support of our Temple,friends and family we can get through day at the time. We never feel bothered or annoyed if some one like to come ,instead interacting with positive caring people giving us reason ,strength to move forward step at the time.
This is a true test -I don't think it gets any more difficult than this.
The other day leaving my psych office ,I saw such sadness and sorrow in his eyes. I said
-Hey Doc -Do you think YOU will need Therapy after this session?! .......
XOXO Sammy and Family

MRI report.

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

Sincerely, Sammy and Family

Baby dont cry..

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

Happy 20th Marina!

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

Breath of a fresh air....

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

1 year after Bone Marrow Transplant!

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