Joe - Fall Update

Joe and Christine saw ENT and genetic neurology last week at Riley.  Both were 2+ hour visits with only seeing a doc a fraction of that time.  I find it hypocritical that they can be over an hour late to my appointment with them but if we had been 15min late they would have rescheduled us.  Anyhow... nothing new really come up at these appointments. The ENT visit was a pre-ABR appointment.  Since Joe and Christine were homebirths we did not get their newborn hearing screen.  Because they don't exactly respond appropriately its difficult to test their hearing.  It looks like they both are going to need to be sedated for this upcoming hearing test (the ABR).  That test will take place next week and will determine if either of them has any hearing impairments.  Though their speech delays are probably not related to hearing loss it is simply something that they have to rule out.

 The genetic neurologist gently told me to stop looking for a name for whatever is the cause of Joe and Christine's delays.  He says even if we find a name to put on it, it won't change the treatment or outcome.  While I understand what he is saying, it is not what I wanted to hear.  I was a mess the whole rest of the day... maybe even a little still.  I don't know how I am supposed to be ok with all this.  What am I supposed to do as a mom?  Should I run myself and my family ragged searching for a name or a fix that may or may not be out there?  Am I a bad mother if I do stop looking for answers?  Its all exhausting.  I don't know what to do or think sometimes.

 Otherwise... we are seeing some progress with Joe's therapies lately.  I had a great parent teacher meeting with his Life Skills Kindergarten teacher.  He is walking at school in a Kidwalk without help and also in a posterior walker with some assistance (see video below).  He is using some communication devices to make choices at school and at home.  In the video above Joe is using a communication device to play Twister with the boys.  Its very exciting!

 

I often have days when this life is overwhelming but somehow I manage to remind myself that God knows what He is doing.  And someday He'll answer all my many questions.  But today is not that day.  So I try to keep moving forward the best I can and take things one day at a time.

 Psalm 32:8 “I will instruct you and teach you in the way you should go; I will counsel you and watch over you.” (NIV)