FEES, Fi, Fo, FUNK…

Today has been one of those days that you really wish wouldn’t have happened after all. It would have been much nicer to have gone from Wednesday straight to Friday, skipping Thursday all together.

We took Parker up to PCMC for another FEES. Even though his swallow study looked great, I long lost trust in those and flat out insisted on a new FEES study after Parker’s last surgery where we tented his epiglottis.

The good news? Things visually look much better. The inflammation and cobble stoning has improved. And we are pretty sure he passed his pudding thickened foods.

But.

It was obvious that honey thickened foods dump smack dab into his lungs. And if honey thickened dumps into his lungs……….his saliva is too.

And his gag relfex? Shot. Nada. Nothing. Things that would cause the rest of us to throw up in the ENT’s lap, don’t even register for Parker.

He’s obviously done some healing since his last FEES. At that time not even pudding thickened foods went down the right way.

There has been some progress.

And in three months we’ll check again.

And pray for more progress to have been made.

In other news, our Brave Hero is exhibiting some behavioral issues.

Big ones.

Ones that require solutions that look something like this:

IMG_8028

A certain Brave Hero insists on climbing on the table and mucking around. No amount of taking him off the table worked in getting the message across to this kid. So, I’ve turned all my chairs on their side. The idea is the cause and effect between getting on the table, and me turning the chairs in a way that no longer allows Parker to use them as stepping stones to the table.

In a week I’ll turn them back the right way. I have no doubt he’ll go back to trying to climb on the table. I’ll put the chairs down again. Hopefully someone will get the hint that climbing on the table is not acceptable behavior.

Here’s the thing: Bored kids with special needs get into every bit as much trouble as their typical counterparts.

And even when Parker can play outside, jump on our indoor mini tramp, etc., he has been getting bored. Really bored.

It’s becoming obvious that I need to change things up around here. Parker needs to be doing more. Getting out more. Being challenged more.

I have lots of ideas of how to do this during the summer. I even plan on taking Parker to an adaptive PE class starting the end of May.

But how do I meet these needs during the Winter? How do I provide enough stimulation for him to meet his increasing needs?

I’m thinking of trying to find a used (and hopefully much cheaper) version of one of these:

pTRU1-5741814dt

I’m going to change around my online work hours and do more of my online work after Reed gets home.

But I need more ideas.

Got any?

About Tammy and Parker

Special Needs Blogger, and homeschooling Mom, heavily involved in advocacy for all kids with special needs in Utah.

Comments

  1. Aimee Shuldberg says:

    Tammy, I was just thinking the other day that we should get rid of our little slide in the back yard. It is JUST LIKE the one in your post. If you want it, it is yours. It’s in great shape. Just give me a day or two for the boys to give it a good scrub down.

    • Aimee, are you sure you don’t need it any more? We’d LOVE it!

      • Aimee Shuldberg says:

        We are out of town this weekend. I will give you a call next week after we get it cleaned up a bit. My boys have grown out of it, they would be tickled to know it went to parker.

  2. christine says:

    Ikea sells a really nice and not to expensive ceiling mounted swing and they also have a slide and a little seesaw.

    I also made an obstacle course for my kids….they loved it. They also really like treasure hunts and flashlight hide and seek.

  3. A blow-up pool full of ball pit balls has been a favorite here.

    And other than right before Christmas, riding escalators at the mall. It’s still generally too cold here to play outside most days, so we take a few more risks in the winter.

    Gymboree was a bit hit this year, but it’s pricey.
    kadiera recently posted..Little updatesMy Profile

  4. I really don’t have any advice, because we’re having behavioral issues too…BUT, I am Totally googling Ikea now! :)
    Heather recently posted..Mamma Mia…My Profile

  5. Darlene B. says:

    When mel was small she ot very bored. Even now she don’t do good with change !! I have to do the same things with her every day !

  6. Winter can be really tough, particularly with boredom. Installing a swing in the house has been pretty fun for my son over the past few months. http://www.disabilitydad.com/2010/10/dads-diary-bedroom-swing.html

    • We have a hammock for Parker…..and a swing but it doesn’t have a back or bucket to it. So Parker won’t be able to use that for a while.

      Most of our ceiling are vaulted and reallllly high. But my basement ceilings aren’t…….hmmm…

      Cody, where did you buy your stuff?

      • We got the swing and hardware at Pitcher’s Sports which is in Ogden, Utah at the mouth of Weber canyon. However, it looks like they have a store in Sandy, Utah as well.They Google well if you want their contact info and address.

        We mounted our swing in the master bedroom because of the vaulted ceiling which peaks in the center of the room allowing an amazing arc from the wall all the way into (no joke) the walk-in closet. Our swing has just as much crank as any playground can provide. Plus I have attic access there so it made getting to the beams really easy. If you can’t tell, I’m very proud of our swing. :)
        cody craynor recently posted..Developmental Disability NewsMy Profile

        • Plus I should add, We don’t have a swing set in the yard, so I installed some hardware in the arch of our garage door. When the weather is good we bring the swing down for some outside fun. Unfortunately, that doorway is not as tall as the ceiling indoors, making the arc a little too tight to be as much fun.
          cody craynor recently posted..Developmental Disability NewsMy Profile

  7. We found a twin mattress angled from bed to floor makes a fun tunnel + makeshift slide. Sheets draped over chairs and tables make good forts.

  8. OK, so your website appears to me again (not sure why not before), so this is the first I’m hearing this. So, I did not expect that he would be able to aspirate at all after the pinning. Are they thinking they may have been too conservative with the surgery?

    And I whole heartedly agree with everyone re: the swing. I’ve gotten amazing cognitive effects from Nana while swinging. She could say her whole alphabet at barely 3 to the rhythm of the swing.

    • We knew he wouldn’t have been able to drink water or a liquid like that. But I was surprised at the honey thickened foods. Right now we wait for three months to do another FEEs. The biggest issues (I think?) is that he still has no gag reflex. sigh. I’ll email you.

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