Wednesday, May 20, 2015

Go Lightening!!!!!!

 
 
 
Selah says "Go Lightening!"
Her Nurse Rose is a big Lightening fan & now we are all getting interested in them:)
 
 
 
 
 
So I'm at the library with Sam, Sarah, Shad and Steve.  Sam is doing his GemIIni program.  The boys are looking for books and Sarah is getting mad, she is ready to get out of her chair.
 
Sam has had a rough couple of days, every 6-12 months he goes through a few days of just being inconsolable, like a baby with colic.   Since Saturday he has been so upset until today!  This morning I actually called the neurologist to set up an appointment thinking we need to try another drug to help him out.   We've tried two different drugs with no noticeable change.  We don't' really like the idea of giving him any meds but if you saw him when he gets like this, you'd be ready to give him anything that could help.   It seems to come when he is making new advances so we've wondered if the GemIIni program he is on, could have been the cause for this.  Not that it caused it but it's awakening some things in his brain and this is Sam's reaction to it.  Well the appointment is not till next month so we'll see how things are then. 
 
 
  We have some special things planned for the boys this weekend.  We are going to Homosassa Springs on Friday and MOSI on Saturday.  It's been years since we 've been to either.  The little ones will be happy at home with their babysitter.   The little ones are on a wait list for Med-Wavier and this year were told that Sam and Sarah could have some respite hours.  Thankfully we know a lovely young lady who can do respite hours for Med-Wavier.  This gives us a chance to do things with the older boys that the Sam and Sarah would not enjoy.  Of course Selah stays home with her nurse too.   When Steve was young we used to take him to all the attractions in Florida but Shad hasn't got to go to as much things since it's not feasible to take the little ones.  We plan on going kayaking next weekend, it will be the first time Jon and I have gotten to go kayaking at the same time.  Usually one of us (usually me) stays home with the kids so this will be a treat!   I'm so grateful for this little break!
 
Well hope you are having a good week!
 
 

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