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.
Sunday, March 20, 2011
This will be short. 2010 was a pretty boring year. Benny recieved his PAM treatments from Leann, his infusion nurse, every 8 weeks. He still had 5 or 6 breaks in his left Humerus, & 1 fracture in his left Femur.
We all went to California for Bennett's 1st birthday!! That was a blast, a week is definatley not long enough though. Summer was ok, very hot!! I took him to the lake, but with his light sensitivity he couldn't really enjoy it. I will take him again this year, but later in the afternoon, & where it's shaded more.
We made a visit to the Cox Springfield NICU & saw Dr. Eccher, he's the greatest person, truly. He held Bennett for a picture & you could see the recognition in Bennett's face, it was priceless.
We had a great Christmas, Benny got enough toys for about 25 kids, he's going to be the most popular kid on the block later.
He started talking a little bit, learned a few signs "more & please", the important ones. That's about it for tonite, talk again tomorrow or next day. Good night. Mark.
Saturday, March 12, 2011
Hi everybody, just a short note. It's was a very busy year last year, & the start of this year hsn't slowed down. I'm waiting for my gray hair to start revealing itself.
Bennett is doing great despite a few breaks, he heals so quickly it's shocking. We started him on speech therapy about a month ago & he's saying too many words to count, & using sign language!! He went to the Brittle Bone Clinic a couple of weeks ago & all the doctors were very impressed with his progress. I will update with substantially more detail tomorrow, it's bed time, bonne nuit.
Thursday, March 10, 2011
Hi, sorry to have been so lazy. This will be short, it's late. Bennett has been doing great!! Growing & getting stronger. He had several breaks last year, but that comes with the territory. He had Clinic in Omaha last week & they said he's doing better than expected!! I will fill in details tomorrow. Thanks to everyone who hung in for the last year or so. You can go to his Caring Bridge page, if you like. The address is www.caringbridge.org/visit/bennettstamoulis.