Friday, September 19, 2014

PROMPT therapy complete and a new experiment in the works...

Brady has completed his 'summer PROMPT therapy' this week. He had 25 sessions from his grant, and it's crazy how quickly that goes! One of the therapists made a video of him yesterday, which I'm hoping I'll get a copy of. I'll post it here once I get it so you all can see what progress he's made since June. He's of course, still difficult to understand in unknown context at times, but his approximations are definitely expanding. He is using the letter S which is much more helpful - although he says "sh", we still know what he's trying to say.
I wish we could keep him in this specialized therapy all year, but even the therapists noted that he was getting very tired during his 'after school' sessions. He has therapy each day at school, and he's gone for about 8.5 hrs each day, so to add on an hour of extra speech afterward was getting tough for him. We're so proud of him. We'll definitely be saving up to put him in the program ourselves next summer, while working with him on his 'homework' from the specialized therapists.

Jax has been a bit... rambunctious lately. He's kind of been wound up and he's been getting time outs much more often than he ever has. He has a hard time not wearing his feelings on his sleeve for every request lately. He's been great at school, but before and after school he needs to find a way to pull it together a bit more. We've been having to request multiple times in the morning to get him to the next step in the process to get ready. Although, having to prompt him through his meal isn't all too new.

After school he just wants to go play, which is fine for a little bit, but making him stop to come eat, whew. Any backtalk at all, even a simple "I'm too busy!" or "You're making me have a bad day!" or our favorite "WAHH!" is buying him immediate time outs. We realized that even giving him an inch has created a little bit of chaos, and we won't tolerate disrespect.
The other night, I had to give him the promise of a time out when he comes home from school the the next day since he wouldn't stop goofing around (and being very loud) when I was trying to tuck him in. Sure enough, he got off the bus the next day and proclaimed that instead of a time out, he preferred a short 5 minute nap. That kid cracks me up! He is already trying to make sure I know that he's going up in his room on HIS terms - what a stinker!

So, I have a little theory that we're going to test out over the next couple months and see if it helps at all. I know the boys have different personalities, so that may the only thing at play here, but I sat thinking about WHY does Jax have more problems with focus (requiring full on special-ed intervention) and Brady doesn't? I know... many ID twins have different issues, and Jax clearly had a different medical beginning and we were warned of these possible issues, but I really want to at least try every idea to know I 'tried'.

The biggest difference between the boys is food. When researching what's inside PEDIASURE, which makes up more than 75% of Jaxon's diet - it's gross. There are so many chemicals and fake things, although it's been our only option in order to keep him off his feeding tube during the day. So while I hate what's in it, I thank it for some normalcy while Jax learns to eat. But... it's 2014, there MUST be options. I found Pediasmart which is the only organic (not that I required organic) fully nutritional drink that compares to Pediasure's nutrition. So I've ordered a few canisters to try it out - hopefully Jax will be ok with the taste.

The only issue is, it's not in a ready-made shelf stable container, which poses a problem for school. I keep Pediasure bottles at school for Jax to drink one a day while he's there.
I've found other ready-to-drink nutrition drinks for Jax, but they don't have the same calorie/nutrition as Pediasure. So humm, I'm trying to figure this out! Maybe we'll just have to make him a cup and send in a cooler pack each morning to use at lunch and snack.

The other issue is that Jax gets high calorie (medical grade) Pediasure at night thru his tube - 16oz. HUH, how do I replace that? Insurance actually covers a portion of that, which has been nice. I know there's a great new product of blended food that's shelf stable to put through the tube, but oh my goodness, the cost... (being a parent and making these decisions are hard). Is the experiment pointless if I change his day-diet but still give him 16oz of pediasure at night through the tube??

I'd just like to see if it helps at all seeing how we truly believe "you get out what you put into a child", and one child of ours eats probably about 75% healthy, or at least non-processed/fake, while the other is maybe 25% and he's the one who has attention/focus/excitement issues. Worth a shot??

Our kindergarten studs!

Their mom and dad! (I'm pretty sure if Jay let his crazy hair grow, he'd be a triplet to the boys)

Sunday football pizza and salad party in the basement - common scene about to repeat itself this fall.

Jay and I at Miller Park this week. His boss took him to batting practice for season ticket holders.

Up on the big screen.

Living the dream.

Jason and Mike.

1 comment:

Anonymous said...

There are so many stories out there about how changing a child's diet can change their behavior radically. I have to think it's at least worth a try!

Could you blend food and put it through his tube? I have another mom friend whose daughter had a brain injury and she blends all of her child's food and puts it through the tube. Could smoothies be formulated that he would drink and would have the nutrients in them as well? Good luck!!