Friday, May 30, 2014

In a rut

Gabe has been going through some challenges lately.  It started in April.  We went to our GI appointment and found out that Gabe’s weight had plateaued, despite eating well for us at home.  We’ve been working closely with a dietitian who has givensome good recommendations  with ramping up his protein.  We also started Duo-cal which is a calorie supplement.  We noticed a pattern in doing our diet recall in that Gabe is eating significantly less when he is at school.  I think it is distraction and I think he knows he can just graze through lunch and snack and get by and then eat a lot come dinner time.  We have since let him start watching the ipad at snack and he all of a sudden has started eating more.  Distraction almost helps him b/c then he doesn’t focus on the work that is required, he just eats.  He looks bigger to me and I think he’s filled out some.  We go back to the dietitian next week, so hopefully he has packed on some pounds.  Gabe had been consistently drinking 20-27 ounces/day and meeting his fluid goal, so we have not had to supplement any liquid through the gtube for months.  The doctor was talking about taking it out.  A couple days after the GI appointment, we got a phone call that Gabe’s labs show that he is mildly dehydrated and they want us to use a new fluid goal of 38oz/day.  Now we have to give fluid boluses again when he is asleep.  And guess what? a result of being fully  hydrated, he’s not thirst till lunchtime the next day and is drinking less.  This is the same cycle we were in a year ago.  It’s very frustrating.  Maybe if he would take bigger gulps, he would get more volume in, but how do you teach a kid to drink more if they are not thirsty?  It’s frustrating.  

The second challenge we’ve had lately is Gabe’s behavior.  He is refusing to participate in therapy.  He has learned he can “wait them out”.  He also hasn’t been responding well to time outs.   He doesn’t seem to care.  We started behavior therapy last month to help with potty training.  I’m glad we have the therapist on board now that we are seeing these other behaviors.  We have some good tricks to reinforce good behavior and some modifications to our time out rule.  After sitting on the stairs, Gabe has to participate in something that we want him to do.  Hopefully this will drive home the message that free play is a privilege and you shouldn’t hit your sister, throw you cup, etc.  As far as therapy goes, he has associated work with his therapists.  We had a meeting yesterday and discussed ideas toremotivate Gabe and make therapy fun.  Hopefully he feels less stress over it and more fun this summer.  He has also started spitting.  After he does it, he says “no spitting, you’re in trouble”, so I know he thinks it’s bad.  I’m trying to just ignore it and hopefully he’ll stop.

It’s hard when you run into challenges.  Challenges bring up little moments of grief for me.  Not grief over Gabe by any means, but grief over the hardships he has that we all have to work through.  It doesn’t consume me by any means, but it’s something that has to be worked through.  We are fortunate to have all the resources in place that he needs.  I keep telling myself the lesson I’ve learned so many times…never give up on Gabe.  Yesterday was his last day of preschool.  We went out for Mexican food (Gabe’s fav) to celebrate.  He was happy as can be and dancing in his seat.  We then went and played at the park.  He had a great day.  I was emptying his backpack last night and I found a note from his busdriver.  



They get it.  It’s just what I needed.  Don’t ever give up on Gabe.