Wednesday, June 2, 2010


Last week Anthony was seen at the Augmentative Communication Clinic at Children's Hospital. We had the pleasure of meeting with Alycia Berg, Speech Pathologist.
I really wish that I had brought along our video camera to capture this amazing appointment, I am afraid my words here won't do it justice. Basically this clinic will help form a communication program for Anthony using a combination of picture boards, voice switches, adapted toys that he can easily activate, and computer programs, among other things.


Anthony did such an amazing job at this appointment that it brought tears to my eyes. He was engaged in activity and played with the therapist for an hour and twenty minutes. I watched as he made choices by reaching out to one of two pictures, touched a button to ask for something to be repeated, to play music on a tape player, and to activate songs on the computer, played peek-a-boo using vocalizations...I watched speechless with joy!!

We will now be visiting this clinic every three months, adding speech therapy weekly to our Early Intervention team, and using a number of communication tools.

At the end of the session Alysia said that sessions like these are why she loves what she does...

It doesn't get much better than that!!!! I love my little guy and I am so excited to start this new adventure with him!!!!

P.S...Speaking of communication, Anthony can now touch his nose when asked, give high fives, respond vocally to "hi", and just started to refer to his sister as gggggee...LIFE IS GOOD!!!

Doctor's Visits

I've been itching to post forever and just haven't made the time. Now I'm faced with where to begin!! I meant to write after Anthony's CRAZY week of appointments (count them...6! and that's not including EI and PT visits.) Here are the docs he saw and the results:

*Pediatrician: Anthony visited the doctor for the third time in 3 weeks! At the first visit he was diagnosed with double ear infections and was put on ammoxicillan...5 days later he broke out into the hives (though so did his sister?) so they took him off the ammox. Five days later the ear infections came back...they put him on a three day antibiotic. It seemed to work but Sunday morning he seemed fussy, had a low grade temp, so back to the pediatrician we went...double ear infection! They put him on a third antibiotic, checked him on Thursday, and (knock on wood) he's been infection free for two weeks. PHEW!

*Nutritionist and GI Doc: Anthony's weight is up and he's back on his curve! At 20 lbs 9 oz he is also on the charts for the first time (3rd percentile!!) GO ANTHONY! The nutritionist said we could now use Carnation Instant Breakfast interchangeably with Pediasure to save on cost. I've been jumping through hoops to try to get the Pediasure covered but no luck yet. The GI doc is keeping him on the Prevacid for now and is feeling pretty good about the course Anthony is on...Have I mentioned that both of these people are AMAZING and I always feel so at ease in their appointments? I always feel like I've been to therapy after I leave Jan the nutritionist and ALWAYS get a good laugh or three with Dr. Walker!

*Augmentative Communication Clinic: see next post...just TOO great to not get its on post!!

*Orthopedist: Doc was so pleased with how much looser Anthony's arms and hands have gotten since the last visit 6 months ago. He also found nothing concerning on the exam so he didn't need to do a hip x-ray as previously thought. Anthony's muscle issues and decreased mobility make him prone to hip dysplaysia, so they will be watching for that. Dr.Matheney also wants Anthony to get a Benik vest...picture tight vest made of wet suit material...this will give him extra trunk support. He will get it at the end of the summer (when the weather is hopefully cooler) and wear it about 50% of his awake time. I am excited about this and its potential to give Anthony more trunk support and stregthen his upper body...