More Reagan updates...

So, we updated a couple of days ago with great news from her radiological examination and we have continued going to all of our therapy sessions, most of which are here at the house.  For the most part, we are extremely busy!  Sometimes, Reagan is not a very willing participant and I get to see some of the ugliest melt downs.  But, she is gaining trust and enjoying more and more her glorified playtime therapy and it is great to be getting ideas on things we can work with her at home.  Mostly the sessions are about an hour and I am present on the sidelines.  I watch as each therapist assists Reagan in activity and then they take notes or study Reagan and evaluate her progress or lack thereof.  I sometimes note the things which stand out to them as concern and I might ask, but otherwise, they keep quiet and work at engaging her in different areas and try to address concerns with me in written form so that I can read their notes and ask questions as the next session comes.  With Occupational therapy, they have concern with Reagan's muscle tone and the way she sits and that she walks on her toes and she has food aversion (very common with patients with heart disease) and that she craves certain sensation.  They have me brush Reagan's feet and hands, legs and arms and then do joint compressions.  She LOVES it!  She will go get the brush for me to do it to her several times a day.  LOVES, LOVES, LOVES it!  She loves playing with the things they bring her.  Now she has played with some tacky clay, (no it isn't molding clay, it is colored and strange), they hide wiggly eyes and buttons in it and she has to pick them out.  She also uses finger paint, and other textured things to squeeze.  I have to set aside toys in the house that are for her.  I even got my hands on some silly putty, but somehow, I lost it!  BUMMER!  Anyway, they have requested that we get an evaluation from a physical therapist now, and so it is in the works.  The coordinator has just texted me that she knows we are busy, but can we see someone and get tested.  Wow!  More tests and play.  In a way, this is all good because we are learning to help Missy.  The activities we are doing keeps her stimulated and happy.  We have been successful at removing her pacifier and helping her stimulate her nervous system in positive ways.  In speech therapy, we are dealing with improving jaw movements and tongue movements for chewing.  We have been asked to target biting and I need to use any of the following foods: beef jerky, string cheese, licorice and gum, to name a few, to have Reagan use her back teeth to practice jaw movement.  This will help her muscles work and stimulate sensation in her mouth.  I am supposed to used sweet-sour-hot-cold things and stimulate her that way too.  They have asked me to get her chew toys or teething toys, all which I either already got rid of or was planning on getting rid of.  I don't have any at the moment, but if you look on-line, they have asked me to look at chewing tubes.  I can use it to help her sensory, to aid jaw movements, and provide something for her to mouth instead of other toys which she still puts in her mouth.  She will be offered it at intervals and when she is upset.  Wow!  All this is new to me.  Speech has been wonderful.  I value so much the information that I am getting and look forward to improvement with Reagan (Missy).  It is still early to tell, but today at session, the speech therapist thought Reagan might have apraxia.  I don't know much about that so if you google that, you will get answers that I will be reading right along with you.  For now, we are working with methods called prompt and repetition, repetition, repetition.  We are still producing some sounds but nothing is really connecting.  I will try to take a video to explain.   For now it is 10pm and I have to deal now with Taylor who is standing right here and wants to talk to me about being scared of monsters.  Talk to you all later.  Good night.