Emotions

Hello fans,

I think of our daily routine is similar to weather channel. You can guess all you want,but nature will take it course. Every day I wake up and go through roller coaster like emotions. What today will bring us?! You would think that experiencing and dealing with Sammy's illness on daily bases in the past 7-9 month would give us certain stability?!

I was looking through our family pictures last night. From kids birth pictures to B-Day parties and family vacations.

Sammy looks so cute on this picture from Disney Park when he was-4 .Perfectly normal,happy,goofy kid.

I found my self in the deep thought about a choice.How some people get sick by making poor choice in their life. Well ,what comes to my mind -it's that in this genetic condition -Sammy had no choice to make and I as a mother who past on this X-chromosome mutation to him - now left wondering and praying for Sammy survival.

Sammy loves going to school. He has been working very hard on 5 days a week 9-2 school schedule and 2 days a week Rehab after school. He is exhausted by Thursday. Fridays have been most challenging .We thought about reducing his week to 4 days a week,but decided to wait.

Sammy has been using weekends for relaxation.Dad has been putting Sammy in the gait trainer -walker on better days. I would say fatigue , lock of energy has been biggest problem for Sammy.

G-D willing ,miracle will happen with a speedy recovery for our Sammy.

Have a nice Sunday,

Sincerely Sammy and Mom.