Pure Michigan

2014 family vacation. 

Gabe playing and therapy video - 5 years old

http://youtu.be/lSps7uUOkoQ

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?...as 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.  

Kindergarten here we come

Gabe is all signed up for kindergarten in the fall. We had his IEP transition meeting last week. I couldn't be more happy with his soon to be elementary school.  He will have to transfer schools after preschool this year, but he will still be in the same school district.   His OT and PT will remain the same.  His new teacher seems great, and the special ed teacher seems like she has really great ideas. The principal is on board with helping us anyway she can.  They are going to start by pulling Gabe out into a special ed classroom for 20 minutes twice a day and see if they can decrease that amount over the course of the school year.  I want him to be integrated as much as possible unless he is having issues focusing. It is really important to us that he socializes with his peers.  The meeting went really smoothly, and they do not seemed very overwhelmed by his special needs it all.  I'm feeling really good about next year. It's such a relief to know we have a good plan for him moving forward.  I made a book about Gabe on shutterfly that I shared with all of his up-and-coming school staff. It talks about what he does well and what he needs help with. They really seemed impressed by it and I think it helped them see beyond the written profile.  I will be requesting another meeting after the first report card to touch base with the group and make sure nothing needs to be modified. Hopefully I'll be happy with things then like I am now.

My little boy is growing up.  Gabe is really rocking the playground lately. He's all over the place climbing at the park. It's great to see.

Happy Easter!

It's been awhile

Our family has been very busy for the past couple months. Winter seemed to last forever around here. It's finally getting a little bit warmer and the kids are able yo play outside some. We made it through the winter without any hospitalizations.   Gabe was officially diagnosed with asthma, and did have a bought with walking pneumonia, but we made it through cold and flu season without any major scares.  Justin was really busy last month with work, but has calm down some.   I was out of town for a couple days at a nursing conference in Las Vegas for a presentation, but my workload is easing some now as well.  Gabe is all signed up for kindergarten in the fall. We have his IEP meeting for transitioning next week.  Alyssa is so cute lately. She's officially potty trained and want to do everything herself.  We have started some behavior therapy with Gabe to help complete the potty training process with him, along with some assistance with cooperating when it comes to difficult tasks i.e. handwriting scissors jumping, etc.  Justin's mom and Bill got married last weekend. It was a great day. We're taking the kids to an Easter egg hunt this weekend. I'll be sure to post more pictures frequently.

Glasses

We took Gabe to the eye doctor last week for his annual checkup. Turns out he's still a little blurry and could benefit from eyeglasses. His prescription is very slight, but we're going to try it. Today he kept them on for about 30 minutes after dinner which I thought was pretty good.