Million kisses

Hello friends ,
We just got a new bed.It's not perfect yet ,but after minor changes it will be good.
All these changes lately have been pointing to Sammy's disorder's progressive state.My thoughts are racing and we have been praying for strength,peace for Sammy's body and soul .There is no questions that his condition is getting worse and lately I have been thinking that every one of us will go one day and only our creator Almighty knows how much time each of us has in this world. We continue praying for a miracle, there is nothing in this world that can change our blind faith in G-d. We believe and trust G-d with our lives,our children, future and our faith in a better tomorrow will be with us forever. We are only able to go on with positive thinking and gratitude for what we have . Belief is our strength.
Sammy is enjoying hugs and kisses.Whenever he feels sad or pain I would come give him a long hug and a million kisses ,he would close his eyes .Its only natural for a child to be comforted by his mom ,dad siblings voices that are ,so very soothing to his ears.
It must be ,so important for him to hear most familiar sounds it give him peace.
We just met our home nurse for the first time.She will be visiting often to monitor all the activities. Pain management is most important at this point-making sure that Sammy is comfortable -has became Mom's obsession.
XOXO Sammy and Mom

Boxing Match

Hello friends,
Hope everyone had a great Thanks Giving.
We started receiving hospice help for Sammy and considering to get hospital bed for better comfort. He has been moving less and needs to be turned from side to side often.
Some analogy came to my mind yesterday. This battle for Sammy's life can be compared to boxing match .Where there is three rounds and we had won one of them and this is the most important, hardest, and final one. Throwing punches and receiving them is part of this sport and it compares to our everyday life.
This was very special time of year when all of our children are home and the house is filled with loud noise and laughter-this does not happened very often.We have had many visitors in our home in the past week and are very happy to see our friends and family .Our home is always open for friends who bring positive energy to our life,who can be here in tough times.We Thank you ALL for your support and genuine interest in Sammy's and our family battle in the past long year.
XOXO Sammy and family

Fog

Hello Friends,
Finally Sammy is better. His feedings and formula is under control now.
He is sleeping more than before taking some naps during day time. He is holding up bravely our little angel and hero.
Not having TV in the house reminded us how much fun we had playing games and telling stories .In every day lives we forget about sharing that important family time without television involved. Even know it's great to watch your favorite program to get away from it all sometimes,still we don't have enough time for each other because you are always rushing to your TV set ,not too miss your favorite show.
We had open up new MONOPOLY game tonight. Let me tell you ,this was great ! We got to watch each other strategic moves and learn something new. Every time we would open up the rule we had missed something .
Before Sammy got sick ,we had at least 1 Family night where we would meet in the movie theater and spent time together-we miss that . Since Sammy's illness -nothing is the same and its ,so hard to figure out if we are the one choosing our future or we are chosen by someone and will be told what to do next.It's very foggy ,and we hope to find our life passage again sometime soon. I'm certain ,that we can only do it together as a family -you will not survive alone ever.
I found that Eva was enjoying the game with us ,but really wished that Sammy can join us too. She stop playing WI when Sammy got sick last year and now when I told her she should play again she said ' It's OK, I will wait for Sammy to get better ,so we can play together again.'
Have a great Thanks Giving -live some room for desert.
Sincerely Sammy and Mom./Next Blog I will share some new experimental recipe/

What a week

Hello friends,
In the past few days ,we had experienced 'technical difficulties". It took few days to figure out why Sammy was in such pain,when I realized that we had switched to different feeding formula with fiber to help regulate his tummy. Today was a first day when Sammy is comfortable again on his old feeding formula ,it was a Huge relieve to see him at peace again. Its very difficult to figure out what bothers him ,he can't say it or show it anymore-times its frustrating and I will turn to my usual friend -intuition.
We had a home visit from Hospice Care. At this point our Doctors had referred Sammy and Family for help with in home care.My only consern is to be able to keep Sammy at home in the same time providing best possible care-outside fasility is out of the question. We are looking forward to meet our care nurse that will be visiting us regularly to insure Sammy is comfortable and pain free.
Just happens that this week is the week that we had 3 broken appliances in the same time!
Our TV,Oven and bar cooler! Wow what a week! I guess there was a reason that we have a full stove too ,not just a cook top-Now I can say to my husband -'I told you ,so! You can't run household with one oven!'
Thanks Giving is a very meaningful Holiday for us .We Always Think and Thank this wonderful Country for the opportunity to find better life here,but association with a beginning of Sammy's illness at this time last year lives a 'bad taste in my mouth' .G-d knows we have allot to be Thankful for ,but why do I have a feeling ,that turkey will not be my favorite dish anymore?

We Hope That your Thanks Giving Holiday -bring family together ones again and bring only positive feeling for you and your families . Stay healthy,happy,thankful and reach out to others in need.
XOXO Sammy and Family

In the moment

Hello everyone,
Sammy have had two great days . He was alert,responded to things better . It was ,so refreshing to see . We all got exited. Sammy's school have been keeping us informed about his day, we are very lucky to have such a great teachers and NSSED staff helping us. Just recently I realized that I had spread out my self thin and had no energy. I started taking vitamins and minerals again .
I was interesting to realize how 'mirrored' I'm with Sammy its seems like we still have 'Umbilical Cord Connection'. I never had to say anything to Sammy he new what he needs to do ,just by me look at him. He seems in his own world ,but comfortable . This is something we can control-his comfort level is very important . Making sure that he knows he is loved, well nourished,cared for this are essential goal for us at this moment. Our life in the past year has been like one bad dream, I still wake up in the morning and think that Sammy will walk in to our bedroom -will sit on the edge of my bed and would kiss me on the cheek -I would ask 'And who is this? -he would reply to me- Your Love ,your Life,Your everything.
Living in the moment enjoying every good moment in your life -is something that comes with experience.
Are you living in the moment? Can you enjoy life to the fullest?
Do you like that person you see in the mirror every morning you are brushing your teeth?
XOXO Sammy and Mom

Holding his own.

Hello fans.
Sammy is finally back on track. I would say there has been some more minor changes ,but overall he looks good , well nourished and seems comfortable.
In his current condition things change fast. Even closest family can see less movement and less reaction to things. He is not reaching out with his hands like before and his other movements seems our of reflexes.
We have seen extra activity in the evenings. When he is put to bed. He moves his lips if he was talking to someone,he would have change of emotions and smiles. It like he is in different dimension sometimes and when spoken to he would zoom back in.
Sammy told me about 1 year ago ,that he can see G-d and talks to him,that he must follow G-d's instructions and he is doing just that.
I know many people ask me if I'm angry? I don't feel that anger will change anything . Instead I feel that this is time that we will trust G-d with his decision and let him do his job. There is a lesson to be learned ,there is a good reason behind this unfortunate circumstance.Every one of us has expiration date -I believe in it.
Holding his own ,he is bringing very special unity and much love among family and friends. People forget their own problems and stay united and strong with us. I said before that this child gives very special feeling when you meet him for the first time ,than you will never forget his face-what a special boy we have. We love doing special things with and for him -he is loved ,well cared for . Tuesday we might come back to school. That's right we are moving forward.
Sincerely Sammy and Family

back on the track....

Hello fans,
Sammy is on new feeding schedule. We are on 3 times a day feedings .Today Sammy went outside for a walk with grandfather . Sammy enjoyed warm bath and was already waiting for me to get in his ears ,nose and trim his nails after . He does not like brushing his teeth and I tell him that girls only like boys with good hygiene and fresh breath.He smiles
He loves wearing his Disney PJ's . For the first time after surgery -few spoons of cream of wheat was a great treat /through his mouth/ he knows the smell and even smiled when tasted few drops of juice.
If you think about what we can enhance for Sammy's enjoyment its - taste,hearing and touch.
Its ,so little and ,so much in the same time-the question is 'How you look at it?' which one is it for you?
XOXO Sammy and Mom

Good nutrition

Hello friends,
Sammy is gradually getting better. He had his feeding on the chair today. No more laying in bed and doing nothing. We are adopting a new way of feeding Sammy. Schedule is not set yet ,but we are getting there. Our goal is to gradually get Sammy to 3 times a day feedings. He is getting balanced nutrition and plenty of fluids now which will keeps him in good shape . We are amazed of his strength.He is a fighter - he is truly a gift ,so every day we struggle to prolong his existence with us -we pray and ask for one more day. Day at the time.
It seems this past year was like a bad dream -everything that happened to us seems in a cloud and we wait when sky's will clear out and sun come . We must believe in a brighter future,in our ability to learn from this experience and be usefull to others. We hope that G-d will give us strength and understandig how to move to the right direction , fulfill our mission in this lifetime .
Sincerely Sammy and mom

Plans for the future

Hello Friends.
As of yesterday Sammy is finally home! His surgery went well ,thanks to amazing doctor that took care of Sammy -thank you Dr Chin.
We are learning how to feed Sammy through G-tube. He is little frail and seems tired ,but we know he has a history of bouncing back quickly.
Planning Sammy's come back to his usual routine give us hope for healthier future and many good times with Sammy .Possibility's are endless. It doesn't matter how difficult ,demanding Sammy's care is we are happy to do it as long as we have the opportunity.We can always come up with more ways to get Sammy evolved and active in something else.
We are looking forward to school .Even few hours a day in school give him very positive emotion -he knows that his teachers ,kids, school staff is waiting for his return.
We will think of a better feeding schedule ,so it doesn't interfere with school activities even know that they can feed him there.
XOXO Sammy and family

What's next?

Hello everyone,
Today Sammy will be staying under Dads and older sisters supervision. Mom was send home sick.
This is the first time in almost whole year in and out hospitals mom got that sick . Besides feeling guilty not being by Sammy's side ,it feels good to know that my mother in law will come to my rescue and she raised a great son my husband and my best friend who can care for Sammy just as well .Possible discharge tomorrow its exiting and scary in the same time.We will have to learn how to take care of Sammy after surgery ,new g-tube feedings.
His first feeding went well it will take time to see if he is adapting well to new way of eating. One thing we know for sure this procedure will make eating safer for Sammy insuring proper diet , nutrients ,vitamins. It will also keep his acid reflux under control making him allot more comfortable.
What is next? I'm sure as a family we will be facing more difficult decisions in the future ,but for now we will make sure Sammy is home,well cared for,comfortable and of course 1000000 hugs and kisses.We are looking forward to get Sammy back to school -he loves it there.
Good night, XOXO Sammy and Mom

Monkey by my side.

Hello friends
Sammy had a good day .He got his sponge bath .We had quite few visitors - our old Chaperon Jim came to spent time with us,so is our Old friends from Stem Cell and other doctors.
Its seems to me that we have made some kind of positive impact on people that we meet along our journey.Any one that have known Sammy before or just met him cant believe how much they becoming attached to this little boy. Ones you get to know him you will never forget his face , silent kindness that touches every ones heart-he is our hero .
Our determination , strength and believe in Sammy is contagious .Thank you for giving us new wave of encouragement to fight to the last second of this devastating illness,no matter what.
Sammy on the other hand has a new friend-Monkey by his side. This plush toy is supper soft Sammy like it so much that it has been part of his left arm since he first got it this morning.
We expected to stay few more days until Sammy is stable enough to go home.
Sammy's older sister came from Collage to visit us in Children's today. I could not see much respond from Sammy ,may be it's just medications,I know he can hear her voice.
That is all for today,Sammy and Mom.

It's OK to Cry Sammy !

Hello friends,
Sammy is recovering after surgery. He was in pain and was crying /for the first time in several month we heard his voice/We were,so happy to hear him cry again- nurse thought that we must be 'nuts' -most parents are unhappy about that-I said 'you don't understand if he is crying he is alive!'
He is resting comfortably in his room now. We expected to stay for few days until he is stable to go home. We had an exceptional surgeon and great care ,so far. I'm back to my old routine next to Sammy's bed ,my ' bedside manners' may not be usual routine for most parents staying in the hospital. I was joking with nurse that I check medication administration and everything she will be doing ,so she should not take it personal -its just to be on the safe side.
Sammy had few visitors today including his Stem Cell doctor .I found my self saying 'Hi' left and right while walking through hallways of the hospital - realizing that sadly we are familiar with many staff members in Children's Memorial.
I hope tonight will go smoothly without 'surprises'-honestly I'm pretty exhausted from lock of sleep . We are not allowed to use cell phones on this floor of the hospital,so my only communication is through this blog,e-mail and text massages for the most part.

Have a good night ,Thank you for your countless phone calls and support.
XOXO Sammy and Mom

Red

Hello fans.
Getting ready for surgery. I found some things that might help me somewhat to stay on float. The other day intuitively I went looking for red lipstick and nail polish.I never use red . But I felt it gives me power.To me it represents strength and high energy. Its those little things that help put things in perspective on very stressful days of and after surgery .
Loading on carbs and getting good night sleep/something I have not had for a while/ is important -After all who needs fainting parent in surgery waiting room?
After visiting us few days ago our friends was so upset with Sammy's on going deterioration and swallowing difficulties. That is what triggered latest e-mail update letter.
You can say at this point we have done everything we knew we could. What's now?!
We have to pray for a miracle and hope for the best for Sammy. It's ALL about him .

XOXO Sammy and Mom.