Shriner's Visit #2
Yesterday, we trekked down to Portland with Darsie for her second visit with the fantastic staff at Shriners Hospital, Portland.
Our first stop was with George, the orthotist that Darsie picked during our last visit from a photo on the wall. He is simply awesome with her. He made many, many adjustments (including an entirely new strap system) to her new AFO to make sure that it was the proper fit and comfortable to her, too. Turns out, he wears DAFOs, so he is well-versed in anything orthotic related.
Her second appointment was in the Motion Analysis Lab with Rosemarie and Bob. They performed all sorts of walking exercises with videos, sensors, and electrodes. At one point, Darsie probably had 50 sensors and electrodes all over her body all wired into a backpack that was then hardwired to a computer. She was given a comprehensive strength and range of motion analysis. Also, a pressure analysis of her gait as well as photos of her standing from all sides and even from underneath!
After a short break, we went and saw a speech therapist for an eval. No speech therapy recommend! So, that was awesome.She gave us some things to work on, but she was very impressed with Darsie.
After that, we had a group meeting with two physical therapists and two occupational therapist. Lots of exercises and walking and climbing ensued. I was most impressed with Darsie figuring out how to bead with her right hand but more so, that she could pick up tiny plastic beads and drop them into a vanilla bottle with her right hand. She is awesome!
Now we wait for the professionals to look at the huge amounts of data and information that was collected and meet to form an action plan for D.
I continue to be so very impressed with Shriners Hospital, Portland. First and foremost is that their doctors, therapists, and staff TRULY care about helping children and are passionate and kind and loving. Also, the process is so fluid at Shriner's. Professionals meet with other professionals and together they formulate plans and theories and ideas. Normally care is so disjointed because different organizations are in charge of different aspects of care. I have the utmost confidence in Shriners.
10 comments:
As a parent with a CP child, I love reading updates on your little one and her progress! Keep up the great work...both of you!
That is so amazing!
I am writing from New Delhi, India. I often visit your blog to know how your beautiful daughter is progressing......more so because I think, my son, who jsut celebrated his 5th Birthday on 01Feb12, SEEMS TO HAVE EXACTLY SAME ISSUES as that of your daughter.
While India doesn't have the medical infrastructure or people sensitiveness towards a CP kid as that is States, we too keep on running from one doctor / therapist to other....
Ravi Roshan
Hello. I am also the parent of a child with CP. My Sarah is 8 years old and has right side, hemiplegia.
I'm looking forward to following your blog.
Hi! That is so awesome Darsie is in such good hands. I've heard wonderful things about Shriner's. It is HUGE to feel confident in the doctors who are caring for your kid. I'm glad you guys have that.
I love how Darsie had such an amazing appointment with the orthotist the she "picked from a photo on the wall". Was he cute?
We love Shriner's too! So glad you are able to get help for your little girl there. Thanks for writing - I have an 11 month old with CP, and I love to read about other families experiences.
We love Shriner's too. The team approach is better than anywhere else we've been. Bob in the motion lab is wonderful. My son's surgeon is Dr. Aiona and he is amazing. I have two kids with CP, one goes to Shriner's and one to Children's. They only reason they don't both go is one is a foster child and can't leave the state easily.
Hi, I am a mum of a 7 year old boy (light of my life). I thought I accepted and understood his condition, but recently attended an appointment and have never felt so confused and am hoping some one can help. My son has permanent brain damage and effected his lower body severely he can not walk or stand with equipment, his upper body strength isn't to good, his hands and arm are pretty weak but not to bad. My son is extremely stiff and has pretty bad diatonic movement out consultant from birth and the whole developmental team have said there is no treatment to help him improve with day to day life, and have given us just pain relief to help with the new pain that has just began. 2 days ago we were seen by a team in st Thomas hospital and was shocked to learn that the actual care plan that my son was given by his current consultant is the actual cause of his pain, the new team have suggested seeing a orthopaedic surgeon to have tissue removed from his hamstrings, to help with the muscle shortening that he has.
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