Reagan Update~

Oreo cookie, YUM!

Because I always scrunch my nose.

This looks a little forced, but still cute despite all of the cookie in her teeth.

Well, sorry this is so long overdue!  We do have lots to update on though.  

First and foremost, we went for another Barium Swallow Study, a study done in the radiology department that allows us to see if liquids penetrate the wrong areas of Reagan's throat or airways.  She has been on thickened liquids for nearly 2 years and we wanted to see if she was still at risk for aspiration.  Well, the long and short of it is that she is still at risk, and she still has a gurgle on her throat, and she has a slow laryngal closure, but she didn't show penetration with thin liquids and therefore we can take her off of her thickener.  There are rules however.  She still has to use straws that are very, very, very tiny.  I have some sippy cups that have straws but she still gulps and coughs at them all.  I am on the hunt for smaller straws and am almost ready to buy coffee straws.  They seem like such a waste, so the hunt continues.  Anyway, she has good tone in her voice so vocal chord is doing better but we still must exercise it with singing and certain muscle activities.  We are busy, busy, busy with all of that.  However, I will say that Reagan loves singing and she is humming constantly songs in her room, or in the car or going up the stairs or while she is playing.  She loves all music really!  

We have music therapy sessions twice a week for 30 minutes each and the young therapist comes in with shakers, maracas, bells, a drum, a guitar and we basically sing songs for Reagan to imitate phonetic sounds, we practice taking turns and following directions and she signs and well, some times Reagan love the entire thing and sometimes she is so nasty and wants to do her own thing.  She really has an attitude!  Everyone gets to witness it!  Besides music therapy, Reagan also has Occupational Therapy and Speech Therapy.  

With speech, we are practicing a method called Prompt.  Apparently, not all speech therapists are trained in this, but it is where tactile movements are initiated to help the child feel where mouth placement should be.  It is quite interesting and I am trying to help Reagan as best as I can and with her moody behavior we hope to get her to communicate more so she isn't frustrated.  The therapy we are receiving is all early intervention so I am present at all sessions and actively participating or paying close attention so that we can practice at home.  We have goals, both short term and long to which we all work really hard to master.  Reagan is really improving and loves to be praised.  

Occupational therapy is fun and just basic play that we engage Reagan in sensory activities.  They believe that Reagan has Sensory Integration issues and that she doesn't know how to organize her nervous system and therefore her body in a spacial sense.  It is very confusing to wrap my brain around it, but we do things like lifting heavy objects and playing with molding clay things and sesory balls and medicine balls and such to engage muscles and body in movement that are stimulating.  Again, I am having a hard time understanding it still so I am not the best at explaining it either.  I hope to get a handle on it soon and update with progress.  I also hope to get some footage of Reagan in therapy session.  We will see.  Keep your fingers crossed.  Hope you like the picture.