Thursday, November 22, 2012

Medical Update Post

I have been a terrible blogger..........I sincerely apologize!  Maybe that will be one of my New Year's Resolution....ha ha!

Our last major update was late September, so I will do my best to update on all that happened since then....So get ready, hang on tight, put your reading glasses on. and HERE WE GO!

  1. Emma's Medical Update:
    • Nephrology (Kidney): 
      • We got to the doctor's office and apparently her doctor was having some sort of pregnancy issues, and all of the other nephrologists were "too busy" to help.  Needless to say, we got nothing accomplished at that appointment.  The good news is that her last Kidney Sonogram showed that she passed a stone and only has one left.
      • Waiting on the Nephrologist

    • Opthalmology
      • We got Emma into a new Ophthalmologist.  He is wonderful, and to top it off, he is friend's with Emma's surgeon.  Emma's strabismus (eye pulling in) is still bad, but her nyastagmus (shaking) is almost resolved.  Emma also has some mild near sightedness but nothing to address at his point in time.  We are patching again for her strabismus and if it is not any better in a year, Emma will need surgery to correct it.  
      • New Ophthalmologist Office

    • Cardiology
      • We got approved for Emma's synagis (protection against RSV).  Scott, her cardiologist, and I spent hours on the phone with the insurance companies to get this approved.  It was no easy task as Emma is "over the age limit", but this Mom does not take no for an answer.  Emma will get these shots every month through viral season.  As far a cardiac wise, Emma seems to be stable.  Her labs look good and we have been able to wean her off of her oxygen during the day.  :)
      • Goofing off at the Cardiologist

    • General Pediatrics:
      • Emma's allergies have been terrible lately.  It has turned into somewhat of a cold; however, she seems to be holding her own.  We took her in to see the pediatrician and her ears and throat look fine, so we are just suctioning her little nose out (not her favorite thing).  

  2. Emma's Therapy Update:
    • Physical Therapy:
      • Lots of Changes here:
      • We ordered Emma a standing frame and AFOs (leg braces) to help with her low lower body muscle tone.  Both of these should be in by Christmas.  We are anxious and excited at the same time to see how these items help her in the muscle department.  Click here to see what a standing frame will look like  Emma is doing well with her rolling, sitting, kneeling, etc.  She still doesn't "enjoy" her therapy, but she participates....most days: :)
    • Speech Therapy:
      • Emma is eating like a champ.  She is pretty much taking all of her calories by mouth which is AMAZING!  The issue we have is with drinking.  She wants absolutely nothing to do with drinking, so that is what we are working on the most right now.  
    • Occupation Therapy:
      • Emma is finally wanting to use her hands more.  As you can see in the picture above, she loves to play with her stars.  She also loves paper and she does a lot of "homework"
    • ECI:
      • We just got Emma signed up for ECI.  She will be seeing an Early Childhood Behavioral Specialist once a week starting in December.