Friday, November 13, 2015

One down, Twenty three to Go

 Friday.  We made it to the end of week 1 at the Brain Balance Center.  The honeymoon is definitely over.  Ben is just as ornery at the center as he was for his occupational therapist back home.  He pushes to see how little he can get away with doing (he really is my child), but those Brain Bucks are still pretty motivating.  Today is also his first Friday so it is his first time to shop in the Brain Buck Store.  Hopefully that reward will keep him cooperating.

Update on Ben: He has a head-to-toe rash that we canNOT figure out.  No one else has it.  Everyone has eaten the same things, been to the same places, and interacted with the same playmates.  Poor little guy.  It looks so painful.  Even after going to his pediatrician, we are at a loss as to what to do for him.  According to her, it is not contagious so business as normal, but I'm hoping it resolves quickly.  Ben continues to fall asleep much more quickly than he used to.  Whether he is just being stretched or his brain is shutting down more efficiently, I have no clue.  On a positive note, Ben has had a lot to share lately, and I've noticed much more non-verbal communication in his stories.  More hand gestures and facial expressions as he describes things or asks questions.  David and I have had several moments where we just look at one another in surprise because Ben will GET something that he has never grasped before.

I have a love/hate relationship with our trips to Fort Wayne.  On one hand, I really hate driving and don't like being away from the girls for the day.  However, these are the days that Ben is at his happiest.  He LOVES his "school."  At 7:15 a.m., he is begging me to pack his lunchbox even though we don't leave home until 11 and then he is ready to jump into the car and go the instant that my dad walks in the door to watch the girls.  So as annoying as it is to have someone asking me seven times an hour if it's time to go to school yet, I'll take this any day over screaming and crying.

We are slowly and steadily removing gluten from Ben's diet.  Right now, he is gluten-free for breakfast, lunch, and most of dinner. I'm still working on the fine balance between having enough on the table that Ben can eat and that the others want to eat.  I'm so incredibly thankful that we are in soup/stew season.  Pretty sure that will save me.  Also, thank you to the incredible friends who have sent me yummy GF, DF, EF recipes.  Thank you for holding my hand as we brave this new, hopefully-not-breadless journey.

Though we are easing into all these changes, I have a feeling that Monday will be a turning point.  I have a parent meeting with the director of the center where we will talk further about Ben's progress and needs as well as dietary supplements and sensitivities.  They also haven't given us any "at home" assignments to do, but I just learned that this is part of this upcoming meeting.  I've also been told that I'll be receiving a parent binder with a lot more details.  I'll give you the inside scoop on these after Monday.  I'm interested to hear what the coaches' reports will say as to how they see Ben responding in his sessions. 

To those who are praying, this is the greatest gift you could give us.  Your prayers are holding us together as we try to give this experience to Ben.  Please continue to uphold us as we are on the road (with foggy mommy brain) and as we adjust our lifestyle to give Ben the best odds at success in this program.  Your texts, FB messages, and words of grace mean more than you'll ever know. 

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