Friday, July 12, 2013

Something Else Lost

It has been almost a year since we have been in steady therapy.  After Matt's surgery we were making the switch to out patient therapy.  Shortly after all the car problems started.  We had to go back to home health and there have been issues ever since.  Finally the car situation is worked out, Kevin and I both have working cars - Praise God! I am working on making the move back to out patient therapy that I know will benefit Matt so much!

Today we went to Play and Learn, a local library event.  During the opening song there was a song called froggy in the middle.  The child in the middle is supposed to hop.  Matt was so excited to be in the middle but he couldn't hop.  :-( He danced around a little and recovered well, but my heart was shattered.  Could Matthew really have lost the skill to hop?  Later we went to another activity it was a hopping activity, and Matt could jump a little, but hoping in a row is gone.

I am confident we will get this skill back, but for now I am sad.  He has also had more accidents lately.  When he lost potty training skills in the past I really  regret the way I handled it, this time I have learned to be very patient and just deal with cleaning up messes.  I pray  we don't lost potty training again.  Matt would be devastated.  Most losses he takes in stride, but if we have to go back to diapers I can't imagine how hard it would be for him.

He is also getting sick all the time.  We went to VBS a few weeks ago and after a two days he came down with strep.  This week for his half birthday we went to chuck e cheese and now he has a cold.  I really don't know how we are going to handle school. I am scared.  I know once he starts school he is going to love it, I just don't know if I will be able to keep him in it.

Whatever Matt has - SUCKS!!!

Tuesday, July 9, 2013

Whole Exome Sequencing

Matt's insurance approved whole exome sequencing!  This is a major praise.  Please keep it in your prayers.  I am praying that this test leads to answers.

We see the genetic counselor on July 25 in Austin.

The results should be back by our December appt with Matt's metabolic doctor.   His doctor said that for the test no results can be given over the phone because it takes about 2 1/2 hours to go over the results.