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