Firs time Out and about..

After long hard work and several hours of therapy ,Sammy was exhausted.But not too tired for fist time outside! Mom ,Dad older sister Marina and Sammy went outside /with a wheelchair of course/ We stopped at for some burritos and Sammy's mac n cheese and other good food we brought alone was unusually tasty.
It's very interesting,how new schedule have been effecting Sammy. When he dresses up in the morning after medications and breakfast ,he is expecting to go out of our room and do something!
We are looking in to different models of wheelchairs . We will need something with some extra gadgets for safety, because our hero Mr Sam slides down from the temporary one he has for now. His legs have allot of stiffness and many times he can't manage to bend his knees while sitting . On the bright side we are surviving this -what a ride this has been ! I'm grateful that we have our Fans to share all the emotions and experiences with .Thank you all for your continues support and comments.
I really like this quote that one of my friends just send my way -Winston Churchill ones said :
'If you going though h-ll ,keep going!' So ,we are taking that advise .
Sincerely Sammy and Mom.

No pain -no game...

Hello fans,
We decided to take a whole different approach to our daytime regiment. Instead of laying around and feeling bad for him self Sammy is in a 'Boot camp" awakening.No more P J's late in the day ,no more 2-3 naps during the day. We are taking back control of Sammy's schedule.
In the morning we are getting familiar with toothbrush again,even know Sammy doesn't brush it by him self yet ,but he knows how to hold it .He gets dressed in regular clothing now and sits in the wheelchair to eat his breakfast. After 3hours on and off therapy and lunch in between Sammy can take a nap. Than snack and play-book time. If our day is productive and Sammy worked very hard he gets rewarded with dinner in 'Big Red Dinning room' where some other kids and family's are gathered. If it's not too many people in the room and they are located at the far corner I will let him take off his mask.He is considered immune compromised kid and I have to take certain precautions with germs and other people around him that may be sick of carry some bacteria.Many other things are a concern and must be watched closely like food .No fast food, must be from allowed ingredients, must be on disposable plates with lids,freshly made and can't be sitting around open for a long time. If those things are not followed there is a higher risk of getting sick.Similar story with Sammy's room , everyone walking in must wash their hands ,put a mask on and have a very good reason for walking in...We have to keep protecting Sammy for many more month too come even after we get home . I have been a nervous wreck for the past 10 days to adapt ,as well as we can ,to a new environment.Otherwise we are trying to work hard and have fun too.How about you?? XOXO Sammy and still insane mother.

May positive Karma come your way....

Every day now I'm witnessing Sammy's awakening.Its like his body was a sleep for a while.
He moves his legs and arms more and stretching in the morning just like good old times.
Sounds becoming laud and last longer.I'm looking forward to hear a first word .
I have to thank our wonderful helpers-nurses that come to my rescue when it's time to give Sammy his oral medications. Most staff members are very accommodating and will go out of their way to help.
I got friendly with few family's here.You see what others go though and believe it or not our 'Big hard patch' becomes a very small one.I think, by engaging in conversation with other moms ,I get satisfaction of 'therapy session' with some one else having similar problems with their precious kids .I also learn to appreciate how much support I get from the rest of my family,when other's having hard time dealing with their spouses being away from home while in the hospital with kids ,as a result some couples tend to go grow apart.In such situation its very important what advise you receive from person next to you. By sharing my life experience, believes -I hope to change their point of view to a positive one,try to turn negative around and help them attract positive Karma. Enjoy gorgeous sunny day . So long ,Sammy and Mom

My diary now -book later?

Hello fans , did you change time on every watch and clock you own today? I forgot!
I feel like sharing somethings that was on my mind .Believe it or not this is the first time I see gray color walls every ware in Pediatric section of the hospital! It's very depressing . Usually you walk in and See bright cheerful,vibrant colors or Disney characters or some other drawings but not here. The only room that has color is large visitors-play-dinning room.I invite Sammy to 'Go out ' to eat his food there,he gets very exited.
I do most of the things to take care of Sammy . Sometimes day goes by and you will see that ONE nurse only 1 time-somewhere in the morning between giving you attitude ,delivering medications and disconnecting Sam's overnight IV -just like this morning.As a rule it usually that one person over and over again. I'm glad that everything is going well and Sammy doesn't need as much medical attention as before.
I keep diary of ALL that's going on every day.It helps me keep his medications ,dates,specifics in line .His diet,water intake and some other important facts. Also it helps me keep up with his progress .I can always look and see how much he improved from another day.Sammy is in desperate need of therapy and this is the best place for it -that's why we are here!
I don't ever want to be caught off guard or be dependent on someone other than myself or my family.It always worries me ,that I missed something and this little person cant advocate for himself -mom has to protect her child that's why I'm here!
Sammy is relaxing today .He had a Special guest-his teacher and friend Mrs Lori J. They had fun,read some books and talked .Sammy relaxed most of the day . We have many appointments planed for tomorrow .
Have a great Sunday stay well , enjoy your family. Sincerely ,Sammy Z and Mom.

We got views

Today we moved to a new room,again!/this is our 7 Th room with in 2 hospitals!/However this time our view is Lake Michigan!! It's not only gorgeous - it's outstanding! This view can compete with most luxurious hotels in Downtown Chicago.
Also today we are celebrating 1Month since Sammy's bone marrow transplant.And since our family has both a donor and receiver of bone marrow we celebrate it twice.
Today the whole family gathered around Sammy and prayed . All of our kids ,parents together in one room just like in old days , emotional and happy for us !
It's amazing how much kids change just in few month .I feel guilty not being there for my younger daughter -Eva. She is growing up way too fast. I want to return home soon and reclaim mom's post at my household.I know that Eva and my husband are missing us terribly and we miss them too.
It's a very touchy situation where I think not only our personality's ,family ties but also relationship is put to the test. I believe it's very easy to grow apart when we are separated for months and have different views on the subject.I think we just got even closer as a family while going through this together - both of us realize ones again ,that we must be sole mates.
That's all for today,my friends XOXO SAMMY & MOM

Go Sammy

Today we have seeing first good result of therapy. Sammy started to hold and eat with spoon now. He also ask me for more food after he ate by pointing finger in to his mouth and smacking his lips together. This is something ,I'll take that!
At first you watch therapy lesions and they are just very simple ,but when you start seeing difference from day before you realize that this is great !
Go Sammy!!
We will return tomorrow with more......... Sincerely Sammy Z and Mom

Music helps

Sammy always enjoyed music.His sister Eva also has very good voice and musical pitch.
Today Sammy was part of a music class.For the first time we got out of our room.He was,so exited ! His therapist said that he responds to music very well and she likes to arrange individual music lessons that will help Sammy hear music and start making sounds .He still does not talk,but smacks his lips when hungry.
Sammy got ,so tired today after physical therapy.He was standing/with help of a special equipment/ And I will take that it's a start.Most of the time I have to live his therapy room because he is looking at me for help .
We are seeing little improvement in occupational therapy too.When I feed Sammy I try to engage him in picking up pieces of chips and put it in his mouth all by him self/he is getting better every day/.
Overall therapy's are 3 hours a day! /with some brakes of course/, so by 3:00pm his is tired.
We will return to blog on Friday most likely. Thursday we have first follow up visit to outpatient clinic in Children's Memorial -we are very exited to see our old friends again!
This week all of our children will come home/expert Sammy of course /,they all will be visiting us here in the Rehab Hospital.
Thank you everyone for your comments keep it coming.We love it! Sincerely Sammy Z &Mom.

Setting our goal -high..

New hospital.We are trying to adjust.I have been a nervous rack trying to stay sterile and try to protect Sammy without realizing that this place is very clean.I guess my previous experience gets to me ,I have to loose that sting little bit,let him get back to normal life now.Moms known to be little overprotective and I will always wipe my kids faces,get in to there ears,make sure their nose is clean -that what moms do and I'm no difference.
Getting back to our new hospital settings .This is truly amazing how many different approaches there are to physical therapy .This is the best place for rehab!
Everyone has been very accommodating trying to make as easy as possible on our transition.
Sammy is getting his assessment and future plan with the next couple of days.I what him to have a full & complete life outside of the hospital.
I'm very exited about the start.It will be hard work ,but nothing is impossible.Sammy's siblings was brought up overachieving and he is no exception.
I'm looking forward to see him righting his bike again.He was a very strong reader and loved his math before and I will not give up until I see him read again and doing his math!And of course last but not list -I want him enjoy swimming and many wonderful things that life has to offer.
We are setting our bar high and the sky is the limit! XOXO Sammy and Mom.

From Winter to Spring..

It feels like Spring again.
I found similarities in how weather , season compares to the what we are going though .I always felt that it's winter and it was the best time to get though this treatment.We just watched snow coming down ,temperature dropping and people covering their faces outside - all though our hospital room window . It was OK! -because we were not going anywhere.
But today ,what a day ! It's significant to me that this first warm day a tease of spring- happened just a day before we are moving to Rehab hospital. It's almost like saying -we are done with the Winter - Sammy's chemo and transplant part and ready to move on.
Spring time warm days are coming!-Rehab ,learning to walk and talk again ,we will have to face some challenges ,but we will also be able to take a stroller outside for a fresh air.
If we look even further -when Summer comes- Sammy will be running ,righting his bike again then we can say-'Its ALL behind us now he is safe and everything will be OK'.
It was just a thought ,what do you think? Sincerely Sammy and Mom.

Farewell to -4 West

On Monday we are moving to another hospital. Sammy is starting new page in his life.We are cautiously exited. Aggressive speech ,occupational and physical therapy is our new target.

We are saying Goodbye to our good friends in Children's Memorial.
We thank All of our truly dedicated professionals: Our Doctors-Thank you for getting us though this serious and much needed treatment,our Nurses that always was there for us ,specially our highly energetic nurse -Margaret that always managed put Sammy in to the bathtub .Our friends nursing assistants specially-December -who's Sammy kept calling September, 4 West office staff, our wonderful cleaning lady-Loretta and hostess-Barbara from food service ,our social worker Justine ,our chaplain Jim .
Thank you 4 West and Stem Cell unit -Thank you !!! You Rock!!!
Sammy and Mom will be frequent visitors at Stem Cell clinic in the next several weeks for various treatments and check ups .
We are taking one friend alone with us -it's Sammy's Ducky pillow-toy-friend that's been though chemotherapy,transplant and intensive care unit and never left his side.
We are ready for one step closer to Sammy's full recovery and long healthy life.

We will Blog from new room next week.Please stay tuned. XOXO Sammy Z and Mom.