Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Monday, May 23, 2011

My New Workout Routine

I have a new workout routine, and it is called "Axel in a Halo".  Here's how it goes:

First, get bowl full of bath water for Axel, and set up the bath station in his bedroom.

The next excercise is getting Axel out of bed. (When he's soaking wet because he slept twelve hours. Could be the valium we gave him last night?? LOL)  First, roll the child to his side, then lift him to a sitting position while simultaneously getting his feet over the edge of the bed. Axel knows what is supposed to happen during this excercise, and is getting better and pushing himself up off the bed. Next step is to scoot him forward and to a standing position.

Next, remove the soaked pajama pants. This involves Axel hanging onto my shoulders while I bend down to get the wet pants off. Only sometimes forgets to hang on and starts signing Signing Time songs (which means he's using his hands to sign instead of hang on!) and since he's so top heavy and still VERY off balance, he tips over. Tipping over with the halo on is BAD.

Now move him to the bathroom. When he first gets up in the morning his hip is stiff and painful, but it gets better within a couple of hours. Other than that he is now able to support his weight, he just has no balance, nor sense of space so knocking the halo on door frames is always an issue.

Getting him on the toilet involves lifting him onto the toilet. This morning was a little more tricky because I needed to leave him somewhere while I ran to get his bed ready for a sponge bath. He seemed to be balancing o.k. while on the toilet, but I wasn't 100% sure he wouldn't break out in song again. I stressed to him in my "this is very important" voice to "hang on tight!", and ran to get his bed ready. (stip off wet sheet and blankets, lay out large towel on the bed) It's just barely out of line of sight from the bathroom.

Pottying done, time to walk him back to the bed, sit him down, lay him down on his side, then on his back. Get him all washed up. NO getting the vest wet allowed. Thankfully this bedwetting incident didn't get pee on it. This is going to be a long several months! Washed off the top of his head too. Get underwear and new pajama pants on him, but not pulled up. Jeans are not comfortable for him yet since he has a large incision on the back of his hip. Which got wet, by the way.

Time to roll him over to his side again, sit up, then off the bed, and repeat the balancing act while I pull up his pants. I don't think he'll ever be able to do that himself as he'll tip right over!

Now we walk to the dining room. I have a choice of a kitchen chair which has a wood seat, or a dining room chair which is fabric. The dining room chairs have a knob on top which kind of catch the halo should he start to tip over. I get his breakfast (blueberry pancakes today!) and get it set so he can eat himself. My friend is picking up a tray and a cup I can use a straw with so he can be independent in this area.

One he's done eating, it's time to clean the halo pins. This is the gross part of the job. There are eight pins, and it takes four q-tips (the hospital kind) per pin, twice a day. That's 100 qtips per day. Axel does NOT like this part of the day. He cries real tears most of the time. The pin sites are red at all, and do not appear sore. I think he just doesn't like that he can't see what I'm doing. His job is to hold a tissue and catch any drips so they don't go in his eyes. He takes this job very seriously! LOL

Now I can move him to the couch to watch T.V. for a bit. (I'll be glad when his balance improves enough that he can play on the floor a bit!)

Total time elapsed: 90 minutes.

I'm ready for a nap already, except that I'm looking around at all the unpacking that needs to be done. LOL


Ellen said...

Yikes, I am ready for a nap just reading this. Would that backwards walker help at all with the balancing in the bathroom. If he could stand by the sink it might make the sponge bath thing easier for you.

Also, I do not know the rules for head pins but what I found with cleaning leg pins was that it was much easier if I wet them a bit first and let the gunk soften a few minutes and then do the cleaning. Much less annoying and painful for the kid. If you think Axel does not like the unknown (and I do not blame him-lots of stuff has been painful lately so he will want to keep a wary eye on things), maybe doing it in front of a mirror so he can see what you are doing as best as he can?

Based on my experience with a kid with a leg frame (and surgically broken leg, pins, cut muscles and tendons etc) it does get much better after a couple of weeks. Pain lessens, kid adjusts and even for me it began to seem like the new normal. It was just routine. That said, I can barely look at pictures from that time without a sense of nausea. By the end my son was using the frame as a HANDLE to lift his leg up onto the bed etc. Kids!


Christina said...

I will be joining this exercise routine when Todd goes back to work Wednesday! Still about 1 week out from Kallie possibly walking so we have to carry her to the bathroom, while she is screaming that it hurts, and get her panties down all while trying to beat the clock before she pees herself, if she hasn't peed the bed yet! YIKES! We need a vacation after our kids stuff is all done!