Finding outlet...

Hello fans. Today we discover, that Sammy started to roll over on his own. On the gym mat he was placed on his stomach and didn't like it and rolled over on his own.He had a long walk outside and got tired. After he fell to sleep,I went to visit. I monitored every hour to see if he was switching his sleeping position.To my surprise -every time I walk in I found him in different position.This was not possible before,even in the last few days he would cry asking to turn him , not able to adjust his arm or leg on his own.
Mom is really back to work. It is great to be able to switch my attention . You have to learn all over again how to use your energy at work and preserve some for later.You have to separate what is important and gear your focus toward your daily goal. That is why -nothing is bothering me!Shaking off small stuff-life is too short.I try to help co-workers hopping in the near future we can build healthier work place.If some one having a bad day/G-D knows we all have those days/ Ask your self a question -is there something I cad do? -You will be surprise what just one question 'How can I help?' can do for that person!You are using your positive energy to change that persons mood to you frequency! It's like you turn on a switch! It's a turning point,day starts changing to better for them.It all makes sense , your surroundings making impact on you every day.The only question is -what can you do to make it better? It doesn't take much-Smile helps. Find outlets to feed your soul .
My favorite things that relax me ,became super important to me now,like:
Occasional glass of wine, painting my toes,my blog, warm morning shower with a great smelling soap, great book and new dinner recipe. Little things?Not important? It is a small pieces of our life's puzzle.Have you found your outlets?
XOXO Sammy and Mom.

On float

Hello friends.Tonight I like to mention your feed backs on my blog.I like to thank each and every one of you for your encouragement and warm words -Thank you. I feel this blog helps me stay on float.Sharing my thought and feelings with people that care about Sammy and family has been a pleasure.Few days ago we received a phone call from a parent who's child is not well.
I thought that maybe I can help,in the near future if any more people like to meet for a simple discussion,suggestion or support just for Coffee in the Borders or something like that. I'm thankful to G-D for my strength ,but most people go though denial ,blame and sometimes will destroy their marriage and friendships along away.I might be a good source of 'outside' point of view and sometimes it helps ,because I don't know this people personally or their surroundings .It's just a thought.
In the mean time Sammy had not such a 'Hot' day today.He was extra-tired .I feel that Sammy have good and very good days- today was just a good day. What really gets me in this situation that there is no facility for outpatient therapy that are specializing in pediatric rehab!Our physical therapist refused to work with him today .She wanted to walk with him ,but he was not up to it! What about other exercises? I wish we had more trained pediatrics therapist that would not give up because of one day.
Most of this places have no equipment for kids of different sizes,nor they are prepared for it.
My question is why?Why do we have severe medical treatment that takes child's abilities to function for many month and no outpatient rehab facility that specializes in outpatient recovery
for kids? We might have to explore other possibilities in the near future.
Have a good night and G-D Bless you and your family.XOXO Sammy and Mom

Drop in the bucket...

I'm sitting in my family room.I don't need TV .I just enjoy piece and quite. I know this on my left hand some dark spots-it looks irritated my skin couldn't handle it,it's like splatter of burn spots.This was some of Sammy's medications accidentally spilled on my hand from this morning - that he still takes internally 2 times a day to suppress his immune system! It blows my mind what this Dearest Child has been through!
Sammy is all smiles.Every day he wake's up with smile on his face. He is very kind boy.He always have been gentle and considerate of others and now it's no different.I'm sure that his bones ache allot ,but he doesn't ever show it. Only when he is uncomfortable at night and would like to change sides I will hear his voice and even then it's not demanding -it's more like 'Can you please?'. I love coming to his 'rescue' and he knows my foot steps.Even know he does not speak yet Sammy needs to hear my encouragement ,that he is loved .He know his surroundings and reacts to situations appropriately every time. It is very interesting process .Sammy is recovering at slow speed .It's like a drop in the bucket you can't quite tell it's there,but after few days you see it more and more. I have always been not patient-all my life.It's like a joke,I had to learn complete opposite behavior that I was ,not use to.
I guess every one is faced with challenges in their life -the only question is -How do you deal with it! What kind of choices you make? Are you strong enough to handle it?!How do you impact your loved ones? Are you aware of other's or you are handling it alone? Do we interpret G-D test and signs the right way?! Can you go through difficult time's in your life with positive attitude or you are angry ? Are you able to feel pain of another human being like your own?
Its not easy to find answers to this questions ,but I must search.This is part of my experience.
I wish everybody a great,peaceful night . Sincerely Sammy and Mom.

Precious possessions.

Hello friends. It's finally weekend. It's beautiful sunny day outside. I'm going to work today. Everything at work seems to be ,so much faster. I have been at very slow pace in the past 4 month . I thought I never say this ,but it's good to be back at work. After this new experience with Sammy's illness - is very important to maintain stable and healthy emotional state and coming back to work helped me somewhat come back to everyday life. I 've changed ,so much.I have developed new plan and new approach to my co-workers and customers. I hope to make a positive change while adjusting back to my immediate working environment. You CAN be kind to each other and still make money-rude attitude distract people from positive thinking and ruins whole day,so my mission is not impossible.I will work hard to make our work environment a better place-where every one helps each other.
At home sometimes I come across some precious items. Things that my children made when they was little. Just recently I found plates that was made by Sammy and Eva in one painting place.This colorful pieces ,our kids paintings,our photo's are the most precious items we own. When I think about time that Sammy was able to walk in to painting place and choose this pieces and then paint it on his own-it makes me what to take him back to paint more.And that is our plan!
We was reunited with old friends Sammy's nanny came to visit. We didn't want her to know about his illness before,when she find out about it she didn't take it lightly. Being older now,she what's to spend sometime with Sammy on some weekends to help out .Sammy recognized her after staring at her for while.He smiled and made a sound touching her face and hair.
While back we got a phone call from local organization call Kiddo.They have a talent show every year raising money for few local kids that are fighting serious illness. They what to know what we would like for Sammy as his gift. We decided on special needs tricycle. Sammy will be very motivated to move more and work hard to be able to go on that bike one day. I'm planing to make this bike visible and every day Sammy will take one more step forward to reach his goal-start walking again. I know he will use this bike soon-I see it happening!
Have a nice long weekend, stay healthy enjoy every great moment of your life!
Values in life changed for me over night,I hope you can learn from it-nothing matters,but health and well being of you loved ones. XOXO Sammy and Mom.

My Hebrew B-Day , Lyar 16,5729

My Hebrew B-Day. Lyar 16,5729 -Wen May 21at-2008.
Another reason to celebrate life!

This day following happened,

1.Romans razed Jerusalem Wall/70/
2.'Nuremberg Law' passed in Hungary/1939/
3.Dachau Liberated /1945/

I found this events- history changing.All,so very important. This will be my first Hebrew B-Day ever.
It's also falling on last day before I go back to work. My first day back is Thursday-22ND.

It will take some time to adjust,no matter were I'm or what I do -I will always be -Mom.
Sammy is busy with his 3 hr a day rehab therapy.Further reduction of strong meds since resent visit to Children's helps Sammy gain more energy. Settling at home still very challenging.
We still struggle with many things , trying to figure out how to position Sammy for bath,meals
activity and training to walk.Insurance companies take forever ,it has been 12 weeks since our request.We hope to get all this equipment issue resolved soon.In the mean time I do my best
trying to score a bargain for countless items on Internet ,to make Sammy's recovery easy and safe. Many people had dedicated countless hours to help us- trying to contact responsible person ,but so far no answer.We would not be the first ones ,so we deal with it as it comes.

Have a great day,Sincerely Sammy and Mom.

Life long commitment...

Hello fans.
New experiences,new meanings,new understanding . Our visit was great.Every time we go to NY our ritual is always the same,but it never feels like it.This time it took me very long time to go though my note.Every time we both add more people and important events we like to see happening -never revealing to each other what we ask for.You would think that we have only one wish?! Of course Sammy's full and speedy recovery is our priority ,but there is much more to it. We care very deeply about other people and like to see them happy ,we like to see far beyond our family trouble and in the process of fighting for our Dear Sons life find ways to reach out to others .Everybody have challenges in their life's and other people troubles are not any less important to us.While praying I found new meaning and interpretation to previously unanswered questions in my life. We where happy to see and spent time with Mr and Mrs Chesky Rothman /Miri Notick with her husband/ and our other friends that we have not seeing since last fall . I have changed allot since Sammy's illness. More and more I find my self in deep thought and often questioning -Why was I blind and deaf before? Why couldn't I listen ? Is it just self centered me before?Or lock of knowledge ? Does this come with experience,midlife desperate search for answers or sudden turn in your own life?!
In my opinion -you change with time.Allot has to do with your surroundings ,but most of all -we make our own character! We are the builders of our own soles we are the only people that can change our self's!For me it was ,standing back and looking at my self from the side. As long as I remember my self I had to work hard to change my ways of thinking. And many years later I realized that I will never be done- improving my self is my life long commitment and leaving enough room to learn more will never be a problem. It all goes back to your childhood.If you have nurturing and loving parents who give you unconditional love, support every step out of the way -you are a very lucky person.In some cases , parents don't know how to love their kids and as a result that child has to wonder and try to figure things out on their own -though out their whole life.Leaving this questions open, I will move on to what was going on with our boy in the past few days.
Sammy has been little bit more alert.He was trying to figure out how to move his wheelchair wheels on his own. He has been tasting his wheelchair breaks lately by trying to use them while taking a stroll outside.His curiosity is coming back little by little.Sammy seems to recognize his name when written clearly.Today he said-Okay! to a question 'How are you Sammy?'.
That is all for now ,Goodnight. Sammy and Mom.

Hannah....

Hello friends,
It's almost 3:00 a.m. Our flight lives at 6. I'm very exited to go back for more preying and spiritual time in NY. I call this experience re-charge.We get allot of positive energy from this trips that will take us though next month.This month on May 21-is my Hebrew B-Day. When I first got my second name-Hannah/it spells many different ways/ on Jan 13th-2008.I could only think of unbelievable connection with my son -Samuel's name.I have mentioned early on in my blog that it was a random pick-we didn't know anything about Hanna.Let me tell you ,since that day everything changed.I started to see many G-d signs,started to change in every way. In one point in Hanna's life she ask G-d to give her a baby.Miracle happened and Hannah kept her premise,her son-Samuel had served G-d and people all his life.We all know that Hannah was mother of profit Samuel .The more I think about it ,strangest thoughts comes to my mind,I do believe that name can change persons destiny.May be one day our faith and religion will be big part of his life too?!It just seems to me that Sammy will make it and will fully recover if we have a good plan for his future and many prayers.Thank you for reading my blog.XOXO Sammy and Mom.

Comming out of dark..

Hello fans,

Getting back to our daily lives, getting to know our schedule is our focus for know.

Now at home you have 'moments',some flash backs , some bits and pieces of the past few month.It feels that we where in the dark back then.I felt that there was a battle for Sammy's life and their was no way I was giving up on him!Coming back to light has been challenging ,but very exiting.Even if you snick-pick at the sunny bright future you think of a shadow -of this past experience that will always be in your memory and part of sunny day,you think how beautiful life is ,how much Sammy enjoys being home and warm days -but my friend dot to forget about sun-block! My mind is always occupied with many new questions.Have we reviewed all available studies on ALD?Is it time to re-visit? Is there anything else we can do to protect Sammy? Are we missing anything that needs to be done now?Does he have to be immunized again?Can any new immune shots hurt him?When is it safe to go back to alternative medicine?As soon as Sammy will get better,this and many other questions needs to be answered
We will be looking to get consultation in the clinic that is most familiar with ALD. It will be helpful to find out more about Sammy's particular case. We would like to know more about this rare devastating disorder ,to be able to fight it!
Sammy is not wasting any time.He is getting back to his old self. Yesterday on the bus to Rehab we picked up another gentlemen-our new friend Bob. Sammy handled him self nicely ,but going back home decided to get to know Bob little better. He kept pulling on Bob's lunch box and after he moved it out of Sammy's reach Sammy decided to pull on Bob's jacket. We appreciate all the patiens of this older gentlemen,because after jacket was out of Sammy's reach he started to play with Bob's wheelchair. Any way Sammy pretty much is only kid at Rehab and everyone babies him. During lunch break some one brought crispy-creams donuts ,as a' good buy' treat. Sammy had one and was looking for more. I moved few last donuts from top box to the box bellow it,so there will be 'no more left'. Sure enough ,Sammy reached out for more.I opened top box to show him ,'No more'. He try to move it out of his way pointing to the box underneath!Go figure! This was my son!My Sammy ! Keep going Sammy,we will be waiting.
Sincerely Sammy and Mom.

Boy's- will always be boy's.

Hello everyone.
Mom finally finished cleaning since the day of our arrival.Although the house looked clean everything had to be re-done to meet "Mom's requirements"- after all Sammy is the one that is breathing this air and being part of this environment.Every one who walks in to the house-has to take off their shoes,take off their coat ,sweater,if family member change their clothing all together,wash their hands 'making allot of suds',if coming from school outside person most likely will be asked to wear a mask. It may seems little over the board,but it's better safe then sorry.
Sammy likes his new bed.It's not white- soft colors and stripes. Sammy played on his new gym mat all day.Sometime sitting for short time on his own,sometimes leaning on his giant bear ,when on his tummy he rolled over to both sides -by him self! I had reintroduced baby carrots and green pickles to him as a snack.He liked crunchy texture and little salt on the pickle.Today for the first time he helped me to pull on his pull up diaper with scudding a little-it was great!
Little baby steps ,as long as it's moving in the right direction- it's all good. I feel that ,as soon as he is strong enough to pull him self up in the sitting position on his own-it will be huge step toward walking.We need to strengthen his tummy muscle to keep his upper body together.
His new toys are toddler toys.We reintroducing colors,sounds,animals,numbers allover again.
In the same time it's just unclear to me that he remembers somethings from before transplant just as he left them like.... Well, he has been overly interested in picking inside ladies shirt and when told 'No' he just bursts out laughing- go figure out -boy's are always boy's ,no matter what.
In any case hopefully we find balance one day. Sincerely Sammy and Mom from home.

Fragile ...

Hello everyone .Happy Mother's Day.
This is very special Mother's Day for me.It turned out that we didn't forget how to celebrate happy occasions,we had many things to be thankful for this year.All of my children had called or give me a present.Sammy celebrated with us.He loved cookies and chocolate treats.
It was such a peaceful event having lunch with my Mother-in-law ,who has been a great supporter with grandfather.I hope you had a wonderful Mother's Day too.
Going back to adjusting with home life.I found to be very difficult to protect Sammy from unannounced visitors.People seems to be 'Blind' to Sammy's fragile state. Many have no idea what this child went though and continue fighting at present time.He can't be part of a larger crowd or public place or people that was exposed to any bacteria. I try to educate as many 'unannounced' visitors about difficulty to fight bacteria do to Sammy's suppressed immune system and how important it is to keep Sammy healthy. I'm placed in the position to turn people away from visiting Sammy even know that they might have the best possible intentions.After all if this is something that can prevent putting my child in jeopardy ,I will not be shy to follow necessary steps even if my actions can be interpreted as being rude.I really hope that people could be little more sensitive to our current situation ,that it might take many month of slow adjustments for Sammy to be able to resume his old activities in the future.We don't know how long ,but it might take up to 1 year after transplant or more.
On the other side Sammy has been adjusting much better than his mom .His has new floor place mat /just like gym-kind/ for playful-workout.Placed on his tummy Sammy has been trying to move little more.We are giving him much more freedom to move.The goal is to reduce wheelchair placement at home and promote more movement,fun activities with toys on the mat.Naturally we have seen some resent positive developments -reaching for the toys, pushing off his arms.Freedom of movement may be the key to successful recovery-certainly being constricted in the wheelchair is not natural and unnecessary to a child that is getting back to be active.
Thank you for your continues support ,Sincerely Sammy and Mom.

Home sweet home....

Hello everybody. We are finally home and settling down. Any new move is very stressful.We struggle in many areas from not much access to the house with wheel chair, too much more work at home.Sammy got very picky with food.It's nearly impossible to feed him.He will have 3-4 choices for a meal and still does not want it ,I guess his taste buds are changing.
We think that he might have recognized his fish 'Phin'-we can't believe he survived.Dad said he had a deal with fish while we went to the hospital-he feed her and she had to stay alive.
Sammy started his outpatient clinic.First step in the new location is to determine, at witch point of recovery we left off in the other hospital?! What our goal is for this coming week, were we see Sammy down the line.His schedule is busy .We get up 6:30am every morning. Our new physical therapist explained that -we do have to start all over -like newborn ,just like we thought at the beginning,we need to follow every single step just like a baby,first hold head,lay on the tummy and roll over,then pull away from floor with both hands,crawl,first step. She also mentioned that in the past some individuals had missed a step or two from this sequence and as a result their recovery was not complete. We will be patient,we will take every step to ensure Sammy's full recovery,even if it comes with time. Sammy's younger sister Eva has been catching up with school nicely.She had missed allot of days being bone marrow donor for her brother.This experience had affected her life very much. She is a great sister and daughter,I believe that she is very strong girl.I have never seen this much determination to help,effort,strength in the 11 years old girl.When asking doctors about procedure Eva wanted to know every detail .She was not scared she wanted to know when she has to be there! Fast forward couple of years , Eva will fully understand that this was our only chance to save her brothers life and was our key to success. Go Eva!
As far as mom goes,she will handle things just fine,as long as we are little bit closer to our ultimate goal -get Sammy back on his feet! It will be hard to find more important mission for this family in the near future-that's why we give it all for this cause-every breath,every ounce of energy ,every minute ,every thought . Sammy got beautiful 'Welcome home' sign with beautiful balloons .Thank you and G-D Bless . XOXO Sammy and Mom.

'Surprise'

Hello fans,
What a beautiful day.Spring is in full swing. Trees blossom,birds are singing,sun is pleasantly warm,it's a perfect day in May-It's mom's 39TH B-Day today.
Before I would not reveal my age, but today I'm proud to be 39.Every wrinkle I have ,every new grey hair that just turned up recently -I earned it and it's mine! This is in the way a reminder of this challenging time in our lives. And I say challenging ,because I know Sammy will fully recover in the near future and probably not be able to recall anything about his illness when he grows up,as per his parents we will never be the same ,we have been through allot and one and only lesson we learned-Never give up!Until you last breath !Soon this 'test' will be behind us,we will see Sammy on his bike again,making funny faces and asking difficult questions-just like before.....
Alex arrange 'SMALL' lunch outing with immediate family .We took Sammy for a nice walk to get to the restaurant. As I'm walking in -I tough the place was ,so busy . I looked closely this was our family and many good friends that we have not see for months.This was my 'Surprise party' I was pleasantly surprised,I appreciated great toasts ,warm wishes and a glass/or two/of red vine.
Alex call everyone ,who he could get hold of!? All by him self?Wow honey,you are the Best !Sammy enjoyed freshly prepared hummus with pita bread. He was overwhelmed seeing that many people in one room.It was obvious he recognized many guests and family members.
This is the 'Best' B-Day yet,having Sammy there with us,our family,our devoted parents and many good old friends.Memories of this B-Day will stay with me and the fact that we are going home in 2 days makes this occasion more special. Thank you Alex-we all enjoyed it ,you really put this special day together for me. Do you think you can start making your own appointments all by your self from now on?Just kidding ,may be next year.
I received many B-day phone calls from all over US,Canada and overseas.Thank you for your massages and thinking of me .
Good night , Sammy and Mom.

Our hospital journey ...

Hello friends,

We just got confirmation and a set date of our release from the hospital.Finally this part is coming to an end. In nearly 9 weeks here we have met some interesting people.Today at dinner time we joined new comers at' dinning room' and just realized that Sammy is here the longest.
The day is set for Tuesday May 6Th- it 's 14 weeks since we left home.
Mom and whole family is busy making arrangements to make this transition as smooth as possible.Very next day on Wednesday May 7 Th at 8:00am , Sammy is going to start outpatient therapy for 5 days a week-3 hours a day. I feel it's important to jump on any therapy opportunities and use it right now.
In the mean time mom went to run some overdue errands while grandma was in the hospital.It's seems that Sammy knows -when he sees grandparents coming to visit it means that mom will leave.They always have a great time ,grandmother is silly sometimes- she calls Sammy-'Curly head'.They sing songs and read books and grandpa takes him outside for a walk.
I finished running my errands fairly fast ,even got few hours leftover. Downtown I saw many people bagging for help. One of them was a young woman.She had sign next to her 'I'm not a bad person -I just made bad choice.'After leaving few bucks I was thinking-If she acknowledged making bad choice -she has a chance. I reached out to my pocket ones again and alone with more change pulled out my business card with my phone number and told her that she can coll me if she needs to talk to someone.My business card seems to be 'the ticket' every time I give it to someone- I know they will call. Naturally I thought about my new girlfriend -Palestinian girl,
mom to 3 kinds ,who's oldest son/6 y.o./and is undergoing the same treatment as Sammy,we met here in Rehab and staying in touch.I believe that people you meet was placed there for a reason- they play purposeful part in your life and Vice -Versa giving a chance to each of you to redeem yourself.
As I was walking away I thank G-d for my faith,strength, for support of our fiends and family, for giving Sammy second chance, for being able to offer my help regardless .
Have you ever met some one who's life challenges made you appreciate what you have?
Until next time, Truly yours Sammy and mom.