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