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? 

Working out in the stander...

while watching his favorite video: Brainy Baby Right Brain.

The blank bands on his arms are writst weights to help him try to better control his chaotic arm movements. In technical terms it is to give him stability. It does help him when he's working on switches or the ipad. But in the stander, when he's that excited control is not an option!

A stander of our own

Liam got his very own stander this week.

We had been borrowing a stander from our Child Developmental Service Agency but because Liam is no longer getting services through them, we needed to get our own. CDSA was kind enough to let us continue to use it for a while longer until we were able to get insurance to buy one.

Luckily they approved it.

Because the cost is staggering.

$4000.00 was what was on the bill.

Our new one is better equipped than the last one.

• There is a sturdy toy/activity tray.
• The foot rest has straps because Liam would get sneaky and could get his legs out of the old one.
• The base has wheels so we can go anywhere easily.
• The base has a gas spring which allows the stander to lay flat to put Liam in.

I didn't want the rolling base because it was so big but I'm glad we went ahead with that one. It's been very handy to have and Liam likes to roll in it, let alone the fact that getting him in it has become a million times easier. I just wish I could convince Liam that being strapped down is worth his while. Because he still isn't fond of this thing yet.

Whatever works

Now that Liam is bigger and stronger he is doing a better job standing in his stander.

Cathy got it all readjusted today and after plopping him down into it, he proceeded to watch some tv.

Whatever works, right?

Well, not really 'tv'.

His favorite Baby Einstein DVD.

Which I hear isn't 'educational' anymore.

But it educates Liam just dandy.

It's teaching him to keep his head up. =>

And look how well he's doing!

I've had several things to post about this last week and it seemed like the week got away from me before I could get anything written!

Liam had his 1 year well baby check up (a bit late since he is now 13 mo corrected) and we got another lovely weight gain so he is now a whopping 16 lbs 10 oz. I know what you're thinking... he is becoming such a chunky monkey, right? That's what I was thinking. But guess what? He isn't even ON the growth chart! Yup. He is so far below it looks like it will be a year before he even gets on it! And so as not to make me feel bad about the fact that Liam is a little lot underweight for his age, the Dr. said it would better for him to be underweight than overweight if he has to spend the rest of his life in a wheelchair. Ahem... WTH? Really?

I didn't say anything when he said that. I didn't really know what to say. But now that I have thought about it. I have a LOT to say about that...

Do you realize what you are saying? Do you realize how we have hopes and dreams and you can just deflate our hopes with one poorly thought out remark? Can you see the future? Do you have a direct line to God about what His plans are? And least of all, what difference does it make if an immobile person is overweight or underweight??? I think that would be the least of anyone's worries!

Ok- I feel better getting that off my chest! Thanks for being my sounding board.

Liam was on the chart for height, although he was only the 3rd percentile. But I really think they weren't using a preemie chart and I didn't even think to ask. Liam is still gaining and growing and that was all that concerned me at the time.

Liam also had his one year evaluation for the early intervention services he receives. It was nice and relaxed and I didn't feel it necessary for Liam to perform. I thought he did fairly well, considering his delays and I could answer many of her questions positively. He will still receive services for the next year, of course, and we are looking at maybe adding speech to his routine. Liam loved this red mirror they had and he would look at it and smile. He also tracked it very well. He tried to grab toys when she put them in front of him. I think his new glasses are really helping him focus better and see farther. Doesn't he look adorable?





Liam got a stander this past week. If I hear my PT right, we aren't using it for "standing" (I know, it is called a stander so you can work on standing) but we are going to use it for head control. He will get the benefit of standing in it and bearing weight on his legs in a proper position but it will hopefully give him the stability and response he needs from his body to lift up and work on his upper torso strength. He's vomited everytime I've put him in it, but thats because he bends over and squishes his belly while I am trying to strap him in. To make it fun for him, I tip him over backwards in it and he thinks it is quite funny. It keeps him laughing while he is in it. I don't know that we get to work on much head control when I do that.... He looks like he's posing here, huh?



My 13 yr old, Rylie, is pretty observant and noticed that Liam didn't look like his legs were the same length when he was in the stander. I just though it was because he prefers his right leg to stand on and he is now standing flat footed with that leg when he used to be on his tippy toes. I noticed it even more after she did and saw that when he stood flat on his right leg, his left foot didn't seem quite right. I mentioned it to the OT doing the eval. today and she said it did seem that his left leg was shorter. But, who knows if it is musculature or skeletal at this point. Just something else to add to Liam's laundry list.




And last but not least, we got into the Chapel Hill feeding clinic for May 18th. I don't know how God worked that one, because when I originally called they didn't have any openings until August! They told me to bring him hungry. It will be interesting to see what they have to say and if they will actually be of any help. We've coasted this far. I'd love to start cruising.