Deep Dark Secrets: Special Needs Style

It’s no secret how much I hate the cardiologist appointments that involve echo’s and ekgs for Parker.

I’ve also been very open about the handfuls of nerve meds necessary to get this Mama through a right heart cath.

It’s a very good thing that these events don’t take place on a weekly basis.

Or else Reed would have had to commit me long ago.

Just keepin’ it real, people.

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My weekly dreaded moment would have to be Parker’s Tuesday Weigh In.

Parker has been holding steady right at #29.25 these last few weeks. Granted he has been dealing with a rotten sinus infection. But it is finally clearing up and I had great hopes for today’s weigh in.

Alas, it was not to be. Still stuck at #29.25

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Besides the fact that my 5 year old can still fit on this scale (sigh) look at those ribs (double sigh).

I know a lot of parents of kids with Down syndrome who have struggled to get their kid to gain weight.

But still.

The funny thing is Parker’s thighs are exceptionally filled out and pretty muscular.  He even has a little bit of a tummy.

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The Hero is growing taller by the day. He’s sporting almost 39 inches in height. He’s averaging close to .5 of an inch of growth a month.

Parker  looks healthy. I think the Nissen was a fantastic move for him.  His doctors have been constantly commenting on how good my kid looks these days.

But those ribs. sigh.

In typical Hodson boy fashion, Parker is one extremely active dude. He’s always on the move, ready for the next adventure.

I’m going to be playing around a bit with his blenderized diet. Which is perfectly fine. Because that 1200 a day calorie intake is just a starting point. If the kid needs a few more calories, the kid needs to get them.  And I may need to up his fats on the days that he gets lentils or legumes for his protein.  Both of these are basically fat free.

Since I’m being so transparent here, I should confess the two mornings this month where I have opened the fridge to find the last  of the bolus feeds from the day before staring me in the face. Reed thinking that I had given it to Parker and me thinking Reed was going to give it to him.

It doesn’t happen often, but happen it has. It is one of the downfalls of tag teaming Parker’s evening feeds.  But it is a downfall that stops now.

So for all of you who have emailed wondering how I manage to do it all….gag…cough….cough…

Now you know.

I totally don’t.

What about you? What are your areas of weakness in raising a kid with special needs?

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