Finding balance.

Hello friends,
It has been 6 month of emotional roller coaster for parents ,grandparents and close friends of the family. For me as a mother this has been very challenging experience. On one hand I want to push Sammy to be tough and recover faster -on the other hand I don't want him to think or feel that we are disappointed in his performances. He has been working ,so hard to get back to his previous condition and making peace with the fact that Sammy might not regain some neurological and other functions while going through brain tissues damage- has been difficult for me.
Restoring personal balance-how do you get there?! What I had discovered -that every one has their own way to deal with crisis.There is no right way or one way for everyone. I discover ,that you can not get there right a way,it takes step at the time -it takes restructuring and getting rid off unimportant stuff that was clattering our life's before,re-arranging everything allover again. I have also learned that this process is inevitable and if you missed a step you will loose.

Naturally our hero Sammy has been keeping his eye's and ears open.Yesterday he kept putting his hands in every ones mouth and while playing with ...... he pulled dentures out of someones mouth! Talking about mischief! Sammy was laughing,so hard it was very funny! It's a new joke in our family now.
On that note I will wish everybody Good Night.
Sammy and Mom.

Above and beyond

Hello everybody,
It has been very busy around here. Sammy has allot of friends .Just yesterday in Sammy's name Kolchinsky family ,Sammy's aunt Irene ,cousin Sharon and many of their close friends helped to organize kids talent show. Mr &Mrs Kolchinky granddaughters Leah-11y.o. and Esther 5,5y.o ,Eva -Sammy's sister and her friend Alice -11y.o all took part in the concert. It was a great event celebrating life! It was all about going above and beyond to help friend in need . This event had raise enough money allowing Sammy to get much needed acupuncture sessions that are not covered by any insurance ./Acupuncture have helped him big time before Transplant/Thank you-Friends!
Sammy has been playing with light switch. Turning on/off light in the room . He is improving little by little and it's encouraging to see. In great spirit today. Sammy has been loosing weight and has been very picky with his food.
Day at the time -it seems to be our pace . Each day spent together with Sammy is a gift.
XOXO Mom and Sammy

Untitled

Hello everyone,
Usual weird stuff is no longer surprise in our life's. I had shared my concern about last MRI that took place on July 14. Many new concerns have been razed including Sammy's vision ,hearing and while we going crazy and huffing and puffing about scan ,Sammy is making further progress!
Have I gone mad? In the past few days he has been having difficulties falling to sleep at night,I have seen full smile on his face with appropriate mimic,have attempted to move his feet when asked to do it /when I hold him up/,have been saying MA , MAM-mostly when in bed and want my attention.It is very interesting how ,no matter what -this little guy is working hard to make improvement. He is my HERO! He is aware of the changes in his body and just takes day at the time. We are allot more careful when talking about his condition around him,he can hear us and might get sad. At this point we hope for a miracle to help Sammy find a way to get his condition reversed or stop on going progression from further damage. We are enjoying every day spent together making memories and trying to stay positive. He teaches us ,so much and we will never be the same. What ever it is future holds ,I'm trying to accept it and make a peace with it for my other kids sake. It's not easy to let your hopes and dreams go ,realizing that Sammy will never be the same again-of course we will love him the same or even more -in fact what was clear, that both Doctors mentioned on conference while reviewing Sammy's MRI, that we did everything possible-but why don't I have a feeling of satisfaction?
Another question that we all know answer too....
Sammy and Mom.

On the right track

3rd and Last day of ALD conference. Finally I learned something I did not know before about Sammy's condition. Child X-linked ALD comes in 2 forms. Only 15% of cases are neurologically challenged. Sammy also has kind that has inflammatory effect on the brain.
Remarkably his MRI was revived by 2 TOP specialist for ALD-Marjo van der Knaap ,MD,PhD from University Hospital Amsterdam,Netherlands and our remarkable Lawrence Charnas,MD,PhD from University of Minnesota who is specialist in ALD after Bone Marrow Transplant MRI. Both Doctors was impossible to meet otherwise,they are in extensive research for cure of child cerebral ALD/Sammy's' case/and AMN-adult form of ALD/no known cure or treatment yet/ We got pretty much the same answer,that we did everything possible and our program for recovery is on the right track. We also received a pleasant remark regarding Sammy's continues recovery even know that last MRI was not as we expected.That fact that this boy can show improvement in some areas now ,that was lost before transplant do to neurological deterioration,was great. Doctors have not seen many cases of improvement or regain of lost functions. We will continue aggressive Rehab and non-stop activities-the sky is the limit! Possible visit to Minnesota in 7 month?
We will make miracle recovery ! We will be happy with basic line recovery and anything extra will be a gravy! Sammy will only hear encouragement -No tears is allowed,no weakness zone!
With help of this unique Doctors and our own team- Pediatrician Dr G.Levin and our stem cell unit staff & Dr Duerst and very best Neurologist Dr Swisher and endocrinologist Dr Zimmerman,from Children's Memorial- will get this boy up and going in no time. We trust this professionals with our child life. Thank you , Sincerely Zeltser's

2 nd day of conference

Hello everyone.
At our second day of conference we was able to meet the rest of the Doctors one by one . We had 3 top accepts in this disorder reviewing Sammy's MRI results.
After initial picture of all 3 MRI we was told same thing over and over again. Even know that Sammy's last Brain MRI shown more damage than the first ones,he is assessed mostly by how he feels and doing physically. We learned that Sammy has not only rare disorder-he also has rarest form of rare disorder which appears and starts in 2 places instead of one.
We understand that there is very little we can do medically to get Sammy better,but make every day matter and enjoy every minute Sammy is with us.
We realize that even know Sammy cant speak -he understands everything and gets sad if we are sad. We have to learn how live today making sure that we have fun as a family and treat Sammy like any other kid.In the near future our goal will be to move on with our lives and dealing with changes as they come, enjoying little moments,making Sammy part of everything we do.
As I was thinking about today I try to make sense of Sammy's mission in this world. Does he have an old sole? Is he the chosen one ,as we come closer to redemption?
Sincerely Mom

Opportunity ..

First Day of Leukodystrophy Conference-Opportunity of a life time. We had an exhausting first day . We met families with same and different kind of leukodystrophy's here. Many of this conditions have no cure or medications.
I prepared for this week with every possible copy of Sammy's medical history. All 3 MRI scans copies was given for evaluation as soon as we arrived.At dinner time little did I know I was sitting next to 'Legendary' Marjo van der Knapp,MD.,PhD-expert in MRI Characteristics of Known Leukodystrophies. She promised to review all 3 MRI tomorrow.If you are not shy you can meet all the important doctors at dinner.It's pretty much 'you snooze-you looze'.I intended to meet several Doctors today ,but met only few from my list.Dont worry,I will find them tomorrow! We also find out that for after Bone Marrow transplant patients MRI has different characteristics and should be interpreted by Doctor that is familiar with after transplant MRI patients.
It's a wish come true ,we did not had to explain anything-instead we get to learn something about Sammy's rare condition , make connections and get connected to network.
One massage stand out loud and clear- in patients with X- linked child cerebral form of Adrenoleukodystrophy -Transplant is one and only hope to stop it. What are the chances?
What is cause onsetting disorder? Why One boy from same family is symptomatic and disorder takes his life and his brother with the same tests is OK and not showing any problems?
This and million other questions are not answered.This is a rare opportunity to meet leading Doctors and tell them your story-show them picture of our beautiful boy and reassure that their hard work is very much appreciated and this families desperately waiting for cure and to save their loved ones.
XOXO ,MOM

Mixed feelings

Hello friends,
We finally got our MRI results. It has been one of the most confusing situations.
On one hand we have learned that Sammy's latest MRI scan was not great. There is signs of more demolition in brain involved than before and also some signs of new areas getting affected at this time.On the other hand we visited our Stem cell team and Sammy looked great.Considering fact that our visit took place right after short recovery from sedation from MRI and when Sammy saw his Doctor he initiated a hand shake and show him how well he can move wheels on the wheelchair.
The whole picture is very contradicting.He looks allot better now and his MRI is worst?
The only question I have is what else can be done to improve Sammy's condition?
In reality I much rather to have him function better and have worst MRI that other way around.We will always explore new choices and try to find new resources to get Sammy better.
We feel that Bone Marrow Transplant was necessary and our Children's Hospital had done very good job of taking care of us.The are trying and constantly exploring possibilities to find more information and something new on ALD to improve Sammy's condition.-Thank you.
There is many other options out there and not single of them will be missed! There is nothing that can distract me or my family from this focus. Sammy will be with us,G-D wheeling he will be able to have quality life in near future.Disappointed?Maybe,Discouraged?Never!We did expect better results,but this is small piece of the puzzle allot more is involved in solving it.
Sammy deserves the best care and opportunity to get better- This is our main focus.Nothing can discourage us from doing our best.He will always be loved and cared for ,he will be always as comfortable as possible .
We are getting ready to attend ALD foundation conference in DeKalb -Illinois.
We will be reporting from there on thu-fri-sat -17,18,19 of July-2008.
Good night and Please say a Prayer for Hayem Shmuel ben Chana.
XOXO Sammy and MOM

PATIENCE

Hello Dear friends,
We are on the verge of another mile stone! Tomorrow Sammy is having his #3rd MRI . We are ready .I like to see my premonition come true. Just before MRI #1 I had my own my prediction, sequence and outcomes of Sammy's future MRI, that you will see great improvement of his condition with each MRI and on 3rd or 4Th we will see this disorder vanish .
I was told this will be near impossible,but of course knowing our believe and desire for Sammy's full recovery it has much stronger power than any other 'pessimistic predictions' from poor data base on ALD .
Like I mentioned before -patience !patience!patience! It has been very challenging for me as mom and very active kid in my childhood to find this much cool with in my self.Aways impatient - I like to see Sammy better and running -yesterday, but I was able to find hidden resources with in -to wait as long as we have to and NEVER give up on HOPE and BELIEVE in Sammy's bright future - no matter what!It's obvious ,that this recovery will take time and it's OK.

Patience, is something I was missing in my life .It helps me think first,before I say something.
I use to see other peoples flaws and was not able to accept it. Always , brutally honest I realize now that I use to hurt people feelings. But , now I realize that it's OK to have flaws,make mistakes and learn lesions we are ALL students in this world. Everything is not black and white it's mostly-grey color. Have you ever ask yourself why is this person acting this way?
Now ,if I see someones flaw, I try to show them what it looks like from my point of view. If you help another person see and experience things the way you see it- they, most likely try to fix it. Now,I accept people ,just the way they are and appreciate honesty toward myself.

Today at work, I met a new customer .This older lady was not well, she must suffered a stroke or has Parkinson's,but you should see her spirit! She was ,so exited to try on new shoes,danced in them and made happy sounds-she took time to learn my name and for ones I was not a furniture -I was her salesperson.-We laughed ,so loud -we had so much fun! Her daughter was there - gently assisting her with her balance . I thought happiness -is state of mind!You can be happy if you want to be happy! After a little time spent with Judy -in my eyes she appeared not much older than my self, young at heart,positive ,optimistic ,she made me think about life and how you present yourself-what a spirit!
Any thoughts? Good night ,I will be blogging tomorrow. Sincerely ,Sammy and Mom.

our 100 blog post!

Hello friends this blog is our Special 100 Th !
I like to start with our spiritual trip to NY. It was powerful! I have never seeing such a long line! As far as we know they expected 100.000 people to visit Rabbi's grave side at Long Island in NY.
There you feel as a part of huge energy,movement. You feel how powerful and important this day is. Many believes that on July 6Th -day that Rabbi past on ,he is present there. I was not sure what it was ,but felt that this visit was different and only today,two days later I was able to pin point why !Our youngest daughter Eva -Sammy's sister and donor came with us. We decided to take her with at the last minute. She brought fresh and unusual explanation to everything she was experiencing. Being 11 y.o -Eva Havah has very strong character and great intuition.She always has an answer to everything,her naive interpretation of events brought breath of fresh air in to this trip. G-d knows we needed that. Her energy and bubbly personality made this 3,5 hours line go faster. No one look at watch -that day it didn't matter what time it was-it was.
We met with Notik family that always come to our rescue.We re-charged.
Same time at home....
Sammy's grandmother agreed to care for Sammy while we where out..
We call to find out how our Sammy was.. Grandmother and Sammy's older sister Marina said that something happened ! They where amazed how energetic and AWAKE -Sammy was that day! Marina keep saying I have not seeing Sammy like this for a long time. He was ALL smiles and giggles all day,listen to books and try to participate ,made allot of sounds and in evening when trying to put him to bed and surround him with many comfort pillows -he decided to play and keep throwing them on the floor and giggling! Coincident?
Power of prayer!? Still having doubts ?! I became a believer in miracle and full recovery!
Sammy felt better right away.Something to think about..
XOXO Sammy and Mom.

New tutor

Hello every one.
Just a quick note before NY trip. This time Eva Havah is coming with us to pray for Sammy's quick recovery.She had give him little piece of her -Bone Marrow. She has been very helpful and very caring sister. She should bring strength and new meaning of this special preying experience. May,Sammy fully and completely recover soon.
We welcome our new tutor-teacher who's services , so generously was offered by our school while Sammy is recovering. First day Sammy responded somewhat,was distracted and did not pay too much attention. The second day of tutoring,he was interested in books and listen much more even helped to turn pages when asked. Third day ,he did very well. Sammy was able to extend his attention over 7-10 min at the time. At the end when teacher said that is it for today,its OK? Sammy reply, OK!
That is all for today,Thank you for your continues support!
XOXO Sammy and family.

Just another week

Hello everyone.
It has been busy week again. We are back to our usual busy lives,work.
Having all the usual load on your shoulders and special needs child -has been an adjustment for mom. We are looking forward to attend conference in mid July with leading hospitals about ALD. We are hopeful to find out more about this rare disorder. Also upcoming spiritual trip to NY again. I feel need to recharge and get Blessings for Sammy's speedy and complete recovery.
Sammy will have another MRI just before ALD conference.I want to be able to have All 3 MRI in sequence ,so Sammy's 'Picture' can be analyzed from the beginning. Our Doctors and staff from Children's are doing everything possible to assist us with this mission.I like to mention our caseworker Justine that has been working,so hard alone with Doctors and Stem Cell Team to assist us with any paperwork needed to make Sammy's after transplant recovery more comfortable.Thank you.
On the other side ,Sammy had his first Home Schooling lesson today. He like the books and pictures even helped to turn pages of books -when he felt like it.We will continue pick up tutoring lessons to get Sammy back on track by beginning of next school year.
Starting July 7Th ,Sammy's Rehab will be cut in half. We had exhausted our 5 days a week rehab hours,so we can only get 3 days a week -3 hr a day now.
I think every change that happened through out our journey has been a sign to move on and explore other possibilities. This chance of having 2 days a week free of rehab will give us an opportunity to do aqua therapy? or acupuncture?We will have better idea upon return from ALD conferences.We will report from there -I can't wait-finally rare chance to ask questions and get some answer on Sammy's medical condition. I'm thankful we know at least what we dealing with,some parents looking for their kids diagnosis and can't find what's wrong .
Sammy still getting his body massages 2 times a week,generously provided by friend from temple. His stiffness has improved on his upper body since massages started.We still have to work with his legs. We know he benefits from massages and may be it's time to get better.He is able to use his left hand much more and getting stronger every day.Today we finally received first pieces of much needed 'Special Needs' car seat and bath chair.
xoxoGood night,Sammy and Mom.