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.