Just Tuesday

Hi Friends,
Sammy had a visitor .Our Family's friend and Dentist Yulia came to visit.
We were concern about Sammy's teeth condition and as we expected he has few loose teeth.
It is something to be cautious about when we do his mouth care .Otherwise ,he is doing fairly well.
For few days now we have seen less activity and sadness.He still likes to listen to TV and Music.
Most enjoyable moments for Sammy is when we take him to our bedroom were the whole family ends up on our bed-watching TV.
He gets million kisses a day and many 'I love yous' from every one ,he is our angel our special boy.
Sammy and Mom

Hold me Mom

Hello Friends,
New Year started with a new Hope.
Sammy has been alert and more active than before.
Its nice to see the reaction to certain words or jokes.
Tonight, I had held Sammy just like I use to, when he was a baby and his tummy hurt. He smiled all day when Grandpa was talking .
We know that Sammy is definitely hears,reacts ,understand. I also realized today hat as long as he hears his Family voices -he is not scared.
His Bath time was pleasant as usual ,as soon as I said 'Who is going to take a shower?' Sammy made a loud sound responding to it.
Otherwise , we trying to survive without nursing help from hospice now.I would not apologize for Sammy surviving beyond prediction its kind of ridiculous to even have this conversation .

Good Night, Sammy and Mom

Happy ,Healthy-2010!

Hi Friends,
Wishing All of you Healthy.Happy New Year.
I was sitting and thinking what to wright positive?! On one hand things are getting more and more 'interesting' on the other ....Well, I just wanted to reiterate that its easy to wright negative its all around-you try to find good in darkness....
It's not important that we keep loosing home help ,for example last week we learned that now our hospice will only visit 1-2 times a week for short visit-why?! I guess we have been on the program for 1 year....The important in this picture is-that Sammy is fighting and biting ALL the odds ,so far.
Its mind blowing that according to his initial diagnosis 2 years ago he had only 6month!!!
Our champ is stable! We have to constantly think ways of making adjustments for a long term now. Few days ago I was asked how much is Sammy's weight? The truth is we can only guess.He gotten ,so heavy that I can't lift him alone. We hope that one day we will be able to visit Children's Memorial were we will be able to weight him for real.
Sammy is Ok. He will make sounds if he is alone.He knows when I'm home-always. How can he sense this? in the morning ,he will give me a smile and stretch and I will talk to him about everything. I would tell him what I have on my mind and he will listen .He waits for his kisses after morning wash routine and than he knows that its time for his meal and Moms coffee.
Its all good. Believe me we don't need allot -its the 'stuff' we want.....
Sincerely ,
Sammy and Mom

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