education & nutrition

Recently Audra's teacher and therapists requested to have another IEP meeting for her 6 month review. Usually the 6 month review is just done verbally with document updates...but much to my pleasant surprise they had a lot to talk about:  including increasing her services!  In the end, all of her services (OT, speech, and hearing support) were doubled!  She will now have the hearing therapist with her at school two hours each day.  And she will have OT and speech twice a week each.

Earlier this month I inquired about getting Audra additional therapy services outside of school.  Every little bit helps, right?!  And she still has a lot of catching up to do developmentally.  I had her evaluated at Theraplay and she qualified for PT and speech, twice a week for each.  (There is a waiting list for OT so she hasn't been evaluated for that yet)  Luckily they offer co-treat sessions as well.  So, sometimes she will have both PT and speech work with her at the same time, which will hopefully cut down on the numbers of times we have to go per week. 

We have also been busy planning her transition from Early Intervention Services (preschool age) to the school district.  Kindergarten here she comes??  I have taken her to be evaluated by the district's PT, OT, ST and hearing therapist...all of whom acknowledged that she qualifies for services (no surprise there!).  The last step is for Audra to be evaluated and tested by the school psychologist.  The psychologist visited Audra's preschool yesterday to observe her and speak with her teacher and therapists.  Then she called me yesterday afternoon to chat.  I had previously warned her that you can't make assumptions about Audra based on what you read about her on paper (ex. Standardized testing results, evaluations, etc.).  She told me that she will not be doing any formal testing on Audra...she knows that the results will not give an accurate picture of her abilities and true potential.  She acknowledged that she doesn't know what they will do regarding Audra's placement for next year.  Everyone agrees that the regular kindergarten classroom isn't a good place for Audra.  And the district's only hearing support classroom is two school districts away, on the other side if the county...an hour bus ride away!  So that is no optimal either.  That leaves us with few options within our school district...the developmental kindergarten, and the life skills kindergarten.  And I'm not a fan of either!  There has been some chatter about thinking "very outside of the box" regarding her placement for next year.  The IEP meeting is scheduled for June 12th...and the anticipation is driving me nuts!

All of this focus on Audra's development and education has only drawn more attention to her nutritional status.  We know that the girl can eat.  That's for sure!  She takes in more than enough calories but her body doesn't seem to be absorbing everything properly.  Exactly why??...remains a mystery.  Today I spoke with Audra's GI doctor to discuss possible next steps.  As we have talked about in the past, there is the option of doing a trial of tube feedings.  Basically, dumping enormous amounts of calories into her little body to see if she CAN grow.  However, there is the concern that this would affect her appetite and limit what she wants to eat by mouth.  Another option is to do a trial of TPN (IV nutrition) and still allow her to eat what she wants by mouth.  However this has its own set of risks.  And, of course, there is the option to do nothing.  Which itself is concerning, that potentially we are not providing her with the very best possibility for her future...cognitively, developmentally and physically.  It is not an easy decision...there are no good answers, it seems.  The GI doctor is going to contemplate all of these options over the weekend, and then discuss Audra's situation at a case conference on Tuesday.

During the next few weeks we will have some very big, very important decisions to make.  I am praying for direction, because honestly...I'm not sure I'll know what the right decision for Audra is...educationally or nutritionally.