Sunday, September 2, 2012

So Much to Think About

Sweet Dreams, Little Man
Aaron is doing well, so very well, right now.  We're moving forward and planning for the future.  But with that future comes change, and new things to look for.

Next year, Aaron will age out of his Early Intervention program.  That's the program where his therapists come to our home, once or twice a month each, and teach me how to help him.  They've got a variety of toys and tools that have been loaned to us, for as long as he needs them and is in the program.  For many of the toys and things, it wouldn't be too hard to find something similar, because that's what they are:  toys.  But some of the items are specialty ones, and you won't find them lying around the homes of typical kids, or the garage sales, either.

He uses an adaptive button in his crib to turn his music on and off.  Now that he's got cause and effect down (and really, he has had for quite a very long time), he has two other toys being modified to use the same button, one of which will call out "hello!"  We're hoping that he can start using it to call people when he wants to get their attention.  But no, that button is not something you can just pick up at Wal-mart.  It will need to be ordered from a disability website before he turns three and we have to return the other one.

Then there's the school aspect.  Yeah, he's going to school!  How cool is that?  I remember when I first spoke to my sister who has been part of Jordan School District's special ed staff for many, many years.  When I told her that my baby had Trisomy 18, she was very quiet.  And then she said, "I've never seen a child with Trisomy 18.  They don't live long enough to get to where they come to us."  But Aaron is only one year away from that.  But that also means, gulp, he won't be with me all the time.  And chances are pretty dang good that there may be the need to access his troubleshooting and medical info when I'm not standing right there.  So my handy-dandy flash drive that I keep in my wallet, won't be there either.  I do keep hard copies of his information, and they'll be with him, but I've been trying to come up with a way to put his information ON him.

Besides, as someone brought up, heaven forbid we were in an accident or something, and I couldn't tell EMS where to find the hard copy (in his bag, on his clipboard)?  I was at an Emergency Preparedness seminar for Special Needs Kids this past week.  One mom has a medic alert bracelet with a USB drive that her daughter wears.  I thought that was so cool!  Then he'd always have all the info that I also have.    So that's now on my "wish list" too.

On the subject of wishes, we're also heading up to Salt Lake in a couple weeks to have him evaluated for a special needs bed.  I've found the one I want, the one that will be the very best for him, but it's going to be an uphill battle to see if we can get it.  It's got mostly plexiglass sides, so he will be able to see out, but won't feel like he's in a cage.  It also raises and lowers so that it will be easier to care for him, transfer from his bed to wheelchair (important as he gets bigger!), and he can also learn to crawl in and out, with supervision, of course.

Most important, it is fully articulating.  The head and knees can be raised and lowered.  He needs this so badly.  When he sleeps flat, the water collects in the outer cannula and when he moves, it dumps into his lungs.  NOT a good scene.  Like, low 70's oxygen sat rates.  But with the head raised, he's losing developmental progress because he's not trying to roll over anymore.  He'll go to his side, but doesn't try to go all the way over.  So, like I said, it will be a challenge to get the bed covered, but I'm really hoping we find a way.

He's sprinting off the vent a little bit more.  Friday, he made it 30 minutes with very little stress during one of his trials.  But last night, last night he was just worn out.  He had been out in the garage (which is now clean, yea!!) with us all morning, then played most of the afternoon.  He got a bath in the sink and was more than ready to call it a night.  I tried to take him off the vent, but after only ten minutes, he was just too tired to keep working.  He doesn't usually need much, if any, more oxygen, but his was really struggling to keep his sats up.  When his heart rate started increasing, and he started tossing and turning, I decided to let him call it.  I put him back on the ventilator and he was sound asleep within minutes.

Hmm, yummy!
I'm thinking we may start trying to introduce the bottle again.  When he gets little tastes of things, they end up down in his stomach and not in the trach.  (How we know is a little graphic, so I'll spare you the details.)  But I'm thinking that one of the main reasons he wasn't able to protect his airway before is that it was just so hard to breathe.  When a person is drowning, the reason that it's silent is because if they do get their mouth above water, they're too busy trying to get the air in to take time to scream out.  Same with eating.  And when he was trying really hard to breathe, sometimes that airway was open when he was also trying to swallow.

Oh, hi there.
I'm trying to figure out what to try in the bottle first.  It needs to be something that tastes good, so his formula is probably out.  I know it doesn't smell good, and there's no need for added sugars because it does bypass the taste buds.  Plus, I have to find his bottle nipples.  I know I still have some, just not sure where.  After all, it has been over two years since we tried a bottle.  So we started this week with a bit of candy cane.  What do you think?  Think he liked it?  I do.

Hi Mom!  I'll look at you and smile, but
NO WAY I'm letting go of this candy cane!

So here's to dreams and wishes and looking toward the future...

The future belongs to those who believe in the 
beauty of their dreams.
Eleanor Roosevelt


  1. I'm sure you already know this but you don't have to put him in school. You should still be able to get therapies and he should qualify to stay home because he's medically complex. We are lucky that we have a wonderful private preschool here for kids with and without special needs and we love, love, love it! He has been going since he was 15 months old.

  2. If you don't mind i would Love to know what company makes the bed you are looking at or if you have a link to the website.

    1. The one I'm really hoping for, that I'm pretty sure I can make a compelling case for, is the IDA bed. It really does have everything he needs, and I can't find another one that does. The US website is FABULOUS beds there.