Well, this year has been a marked improvement over last. Benny still isn't holding his head up, but with the help of Joyce OT, we are making slow strides. We also started speech therapy, her name is Adrian & she's great!! Bennett has finally found his voice & is picking up sign language like you wouldn't believe.
He's been getting PAM treatments every 8 weeks & when we went to Omaha at the beginning of May, they said his bone density increased by almost 25%, that's great but his density was so low to begin with, I keep a positive outlook any improvement is good improvment.
He got his hernia repaired...finally. We can tell he feels better from that also.
We did just get some disturbing news today, Dr. Rose from Omaha is concerned about Bennett's head size & that he may have fluid on the brain. We're scheduling an MRI to get that tested. I swear in 40 years I've never spent more time around Dr's or in hospitals than in the last 2 years. I wish they would just come up with a bloody cure already.
Take care Mark Stamoulis.
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Hi Bennett
ReplyDeleteMy name is Jenna and I came across your site. U are a courageous, strong and determined, Fighter. You an Inspirational Hero, A Brave Warrior and a Smilen Champion!
I was born with a rare life threatening and very painful bone disease. On top of it I have Severe Osteoperosis.
www.miraclechamp.webs.com