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