Tuesday, July 15, 2008

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

4 comments:

Anonymous said...

I am sorry to hear that the MRI results were disappointing. You are seeing positive signs in Sammy's progress and those are the signs to focus on. He looks sooo good in the pictures on his bike. I hope you find helpful information in DeKalb. You are all in my prayers.
Mary

Anonymous said...

i hope chaim shmuel ben chana gets better. perhaps a second MRI or second opinion will clarify the contradicting situation. Rebbe always encouraged second opinion when it came to major medical issues. Bracha V'Hatzlacha

Anonymous said...

My family is following this blog and believe he will be better.

Anonymous said...

we are praying for you!!! You are in our thoughts always, as part of our own family, we care so much about you and want the only the best for sammy! May G-d grant your family success beyond measure.