15 years

Hi All,
We just celebrated our 15 years anniversary. Both of made of honors was there. Of course at home ,we welcome our close friends and family.
It was magical. Ones again realizing that without our family and friends we would not be able to make it ,so far. Just looking around us we ones again said how lucky are we to have such an incredible people around us.
We really had fun , many of our friend we know for at least 15 years . Their weddings around same time and our kids born and raised together. It was like a balm on our bleeding soul.
Sammy enjoyed attention ,it seem he recognized people voices and was very alert . Great evening ,allot of love,precious memories,laughter ones again entered our home-this is what we love and could not have it any other way. Life is short,we must enjoy those rare moments of happiness.
Our daughters was ,so helpful.They helped out and made our party easy to handle -Thank you ..
Tomorrow we off to few days off,I must catch on my sleep between home,work,Sammy I feel tired.
Have a great Thanksgiving ,use this opportunity to gather your Family together and tell them how much they all mean to you..
Sincerely Sammy and Mom

No turkey for me.......

Hi all,Hope everyone is Good.
Sammy have had strong 2 weeks. He loves bath, rubs,hugs .I have few extra days home this week/no one else can take care of Sammy/ .We have all different activities during the day.I try to include him in everything I do.I can only imagine how tired he is of laying in bed all day long other than go for a walk with grandpa.We talk about everything ,I even get a smile when I tell him a joke or talk about news. Its just unbelievable how much love and understanding you can get from this boy-you would think if he cant talk he can't express him self? Wrong,he shows it in many other ways.Last night I just crawled in to his bed and fell to sleep,when I walk up someone said that we where both snoring.
Fight for Sammy's home care is on. It will not go away! I'm determined to make this right.Family like ours with terminally ill child should not fall through the cracks like this-we are at our most difficult stage at this point and need assistance taking care of Sammy-we will get it one way or another.All I want is be able to continue working -4 days a week to support my family.
Up coming Thanksgiving is not my favorite holiday anymore. 2 years ago just 1 day after Thanksgiving we got a bad news ,so this association will always be with me.

Sincerely Sammy and Mom

Lullaby

Hi All,
We continue with our persistent mission to have adequate help for Sammy while Mom works.
Although we had exhausted many channels there is always another one . We even got inquiry from local TV station to do a story on Sammy ,but I just think it would be our last resort- its only fare to give enough time to respond for those that we contacted in the last week .Nothing happens overnight ,so we will wait little longer . Oh,wait I'll take that back -what- does happens overnight is we lost our nurse just in one day-that happens very fast! Than we are on our own ,ones again fighting.
I can wright a whole column about insurance dropping us instead of being grandfathered and system failing ,but who will benefit ? Instead I decided to save my energy for positive and try to gather most sufficient and proactive people and information to work to our benefit.
Sammy is doing OK. Just last night ,we got a scare with his hard breathing pattern. He had just slight low grade fewer. I give him nice rub and hug and whispered some lullaby to his ear and in the morning no fewer -he recovered .I wish I can do same with his illness.G-d wheeling....
Sincerely Sammy and Mom

seeds of hope

Hi Friends,
What a week. One of the most challenging weeks .
There is so much going on .The good news is that Sammy is OK. Just when I thought we finally settled with our schedule and help wile I work ,we lost our coverage for nursing. Ones again like a bull on the red I had to make a plan. Contacting new and old sources I planted seeds of hope and in the next few weeks we should see what plant will start growing.
What amazes me the most is that' system' is failing time after time one of the most vulnerable group of patience -terminally ill kids. You would think it should be easy to get help for Sammy ? The main problem is that program pays nurses 33% less in Lake county VS Cook!After getting a denial for equal pay increase we are moving on to higher sources, nerveless I could not understand why if we live 3 mi south we would be covered with nursing assistance without a problem.
What's now? do we have to move? No one wants to take pay cut ,but we do live in Lake county and can't move do to the fact that it will be very bad for Sammy .
Ones again -there is NO situation without resolution.We'll continue fighting for Sammy for my ability to work . This are most natural rights that most of us had before and now have to fight for.
Just imagine one morning you wake up ,you are faced with real question who will take care of Sammy with all medical complications and countless drugs he must take during course of the day?Medical staff is the only qualify help Sammy can have.
Many questions not much answers,that is what parents are for to fight for their children well being no matter in what condition they are.
Sammy and MOM