Allergy

Hi All,
Sammy had weird sleeping pattern in the past few weeks.Napping on and off sometimes not sleeping for 24 hrs ,finally he is back to night sleeping schedule.It has been a while when I remember sleeping through the night .His meds are going up to help him with small issues and our Nurse had discover that Sammy had major allergy issues,after simple over the counter Benadril ,his lungs are clear now . We are counting our blessings every day.I try to get through the day as positive as possible ,you would think that most people will have some understanding or compassion for our daily battle?! Well,not really . It does not surprise me any more.
All I know that somehow I was chosen to deal with such a devastating disorder ,child illness.
I know in my heart that I was chosen for my strength.To unfold , learn and deal with deadly disorder that ran in our family for several generations ?! To protect future of our Family
making sure that no other child born to our family will have ALD...
Work is busy , Thank G-d for it,not only financially ,but it helps me stay a float.
Many of my customers knows my kids and Family .When kids were smaller one year I had 3 children in 3 different schools ,many of Moms become friends for years.Every now and then I get a question how are the kids?I don't know what to say .On one hand my 'brutally honest' personality does not let me lie,on the other hand I don't want to burden other people with my troubles specially at work,were professionalism comes first.
Thanks Giving is coming soon ,I really don't like this time of the year anymore ,3 years ago 1 day after this holiday we found out about Sammy's diagnosis.....
xoxo Sammy and Mom

103

Hi Friends,
Today I finally got Sammy weight. He is 103 IB.
No wonder why I felt he gained more weight. It funny how 3 pounds can make a difference.
Sammy's growth jumped few times in the last month.
Even know his face still look like young boys ,he has shown signs of teenager .His scale has officially tipped over to young man.
His facial hair and acne have been part of Sammy's appearance ,more and more we hear this deep voice when he caught .At first I did not know were it was coming from ,than I realized that it was Sammy .
Life is taking its course claiming every normal growing development of our son ,but if it was same inside ...
We manage to take him to our lap at evening in Family Room.He feels my heart beat and knows that I'm holding him .He also knows when Alex is holding him and will talk non-sense to him,he is ready to listen to Daddy's jokes and funny songs.
Eva has been sick lately and was not allowed to come near Sammy ,she has been watching him from distance .
Over all ,we are very lucky to have Sammy with us as long as we have -he is our ANGEL
XOXO Sammy and Family

Stem Cell

Hi Friends,
Some of you wanted to find out how Sammy really doing this days.
He is stable ,healthy heart and organs ,but lost connection from brain to the rest of his body.
That is what determines Sammy's vegetative state.
He was examined by Hospice Doctor .He was impressed on Sammy's condition and how well cared he is. Just recently we learned about first stem cell spinal cord operation the results are not available now,but it give us hope.I cant understand people striking stem cell,for those like us with terminally ill children its only hope for the future -Those people must not experience nearly what we do and other families with Alzheimer's and other disorders that stem cell can help to cure condition of loved ones.
Everything is in compering !
So our focus is on keeping Sammy germ free. Any Cold or Flu can affect his immune compromised system.
Sincerely ,Sammy and Mom

Sammy is 10!!!!

Hi All ,
September and October is very busy ,not only at work,but at home too. Allergy season and flu all around make us take extra care around Sammy.
Alex turn 50 ,Eva's-14 Th B-Day was on Oct 3rd and Sammy's follows the next day.
Let me tell you if any one told us that Sammy will survive not only 6 month ,but so far 3 years?!
Go Sammy -
He could not make it without your support and prayers ,something magical happened yesterday-
Sammy turn 10 years old !

Sincerely ,Sammy and Family