Friday, December 14, 2012

Neuro Optho Joins Team Colton

Wow - I can't believe how busy we have been!  I have been working almost full time on a contract for Comcast to build a briefing center in Chicago and Johnny's work has been extremely busy with some tough cases and long hours to stay on top of things.  But life doesn't stop, so we just keep trecking....

We decided to visit a neurological opthamologist, Dr. Avery from Children's National Medical Center.  He was very knowledgeable and we are very happy we took the time to see him.  He is very familiar with Dr. Jeffery and was glad to hear we are under her care.  He agrees with her current direction and clarified the difference for us between a neuro optho and a traditional optho.  His focus is on neurological reasons for vision issues, like a tumor constricting the optic nerves.  He does not prescribe glasses or do the surgeries that Dr. Jeffery said may be in our future.  He said he is interested in joining Team Colton but that we may choose to see him yearly, every other year or if we are considering surgery to get his second opinion.  He did recommend we start Cole in school in the Fall and start to research vision services such as the Virginia School for the Blind.  He also recommended a vision treatment center in Bethesda which I have called to see if they take patients as young as Cole for vision rehabilition.  He said he does not agree with vision therapy so we are trying to find the line between the two and determine if we want to start those services.



We also requested his Early Intervention Specialist bring a Vision Specialist with her for Cole's monthly appointment.  We met with them today and it was very a good appointment. She said there are a lot of new vision technologies that help kiddos like Cole.  For example, she said many schools have camera carts that can sit right next to Cole's seat with a monitor that he could zoom into content on the board or on the teacher and see it on his monitor.  So although it's discouraging that we have to worry about these services, we hope the more we learn the more we'll be able to advocate for Cole.  We have several new therapy tasks including beading, stacking and continued work on object identification.  Both therapists felt the delays that we see with Cole may be attributed to his inability to see versus a cognitive disability to learn. 


Reagan also had a busy couple weeks.  We have been talking about putting her in a restraint camp but haven't found one for her age.  Constraint Induced Movement Therapy (CIMT) is a therapy designed to specifically treat “learned non-use” of the affected arm as a result of stroke, cerebral palsy, or brachial plexus injuries. CIMT involves using a cast to constrain the dominant arm while providing simultaneous intensive practice of movements in the hemiplegic arm.  We had the cast made this week and the therapist will add a fleece liner and velcro closures.  We will be able to pick up the cast next week and are hoping we can convince Reagan she has not one but TWO super gloves ;)  It's all about the spin right?!

Our little rock star also graduated from Swim Tots 1 to Swim Tots 2 !  That means she will get her face wet and is able to blow bubbles.  After class she was told to stand on the stool, ring a bell and they wanted to take her picture.  The poor kid - she was deathly afraid she was going to fall off the stool and was really cold.  But she is very proud of her accomplishment and is looking forward to continuing to take swim lessons.

She also had her first experience with Build A Bear.  We went with my friend Lisa and her two children, Kaitlin and Evan and my nieces Emily and Allison.  Clarice is her new best friend and goes with her everywhere. She had a great time and is already talking about going back to get Rudolph! 


 


No comments:

Post a Comment