Didn't see that coming.

Holy diagnosis, Batman!  I got an email to log into our Blue Cross Blue Shield account because new information had been added for Liam. I've never gotten a notice like that so I logged in to check it out. I found a page that I didn't even know existed. It's a list of everything that Liam has ever been diagnosed with. It's creepy scary. 

A personal health record, with line after line of issues.  Some of them aren't even true and when I click on them I am able to say he either no longer has the issue or delete it entirely. Like 'cerebral brain deterioration'. What the... I don't even know how that's there. His brain isn't deteriorating, nor has it since the day we brought him home. That's NEVER been a diagnosis that I was aware of.

Delete.

Tooth loss? He's not even lost his first tooth yet.

Delete.

TB-related miliary fever?  Nope.

Delete.

Complication of medical care?

How is that a diagnosis??

Delete.

 It's also interesting to look at who listed each diagnosis in his chart. Some are the medical supply company, the medical equipment company, some the therapists, some his doctors, and some are even from the pharmacy.  The pharmacy? I don't even know how they can list a diagnosis.

What's funny is that years ago, if I would have seen this list, I would have freaked out. I would have been sad, looking at a bunch of terms that the world has to use to define my son. It's a lot of medical terminology and scary sounding words (muscle wasting, anyone?). But I look at this list now and I don't see each individual diagnosis. I see an amalgam of terms that can't even begin to remotely describe my boy. He is not defined by his diagnosis, we certainly don't define him that way. He is unique, wonderfully created, and so much more than a sheet of terms could ever describe.

Standing tall

After outgrowing his stander 9 months ago, we finally got Liam's new high falootin' Lecky Mygo.  There's a few pros and cons to this bad boy.

1) The butt and chest straps (they use the politically correct term 'harness' and the term 'hips' but it's a butt strap) are too big. I can't get it tight enough to make me feel like Liam feels secure in it. It should be tighter and there's just no way to get it to fit snug against him. He doesn't complain but I don't think he is getting as good of a benefit without the proper tightening of the 'hip harness'.

2) Did you want a tray with your stander? Oh, well that will only be an additional $298.40 please.

3) It's not pneumatic like the last Leckey we had. Granted, this was only $5000 and you can't get bells and whistles at that price, but that benefit on the last one was sweet.

4) Sandals (foot plates to me and you) that don't adjust.

It is kind of pretty in a durable medical equipment kind of way . It's got a really cool color, has a spiffy tray with a built in bowl, and the ability to see the degrees at which Liam is standing. But what I really, really wanted, and was told it had, was the adjusting plates for his feet.

What you can see in this photo is that Liam has a pretty big discrepancy between the length of his legs. His left leg is about 1 1/2 inches shorter than the other. Actually, his entire left leg is smaller than the right, something I noticed when he was a wee babe but was brushed off as it not being true. I noticed his left knee was smaller, as was the thigh and the foot and before long the leg wasn't growing as quick as the right.  With this stander we were supposed to be eliminating the need to wedge things under the shorter leg and it was the first thing I checked out when it was delivered only to find out that we would still have to do wedgies. Poo.

The Mygo does come with a precious little 'sandal raiser' but that wasn't enough to compensate for the difference so we still have to wedge hard foam under his foot to get him bearing weight evenly.

I've been told that we could potentially make up the length difference by having him bear weight in the stander on those tiny little legs for 3 hours a day.  I have not been able to work that into my schedule since we got it but that is the goal.  Luckily Liam really doesn't mind standing in this stander. He does seem to fit well in it regardless of the issues and if we could get a good aid in here to help me, we just might be able to see Liam someday have legs the same length.

It's the little things, people.

Doesn't he look precious in this thing?