It shouldn't be this hard

Liam needs total support and that means without a wheelchair accessible van, he has to have a good car seat that provides proper positioning and sufficient support.

 We were approved, easily, for a special needs car seat last year. So what could be a problem?

The DME (durable medical equipment) company we work through, NuMotion, had recently merged or bought out a company that had recently bought out another company. With Numotion, efficiency would be more streamlined, the steps of the process would be posted on your account on their website after you log in so you could always see exactly where you were in the process and what next step was needed to get the equipment to your door.

It's lovely.

However, NuMotion doesn't carry the different types of special needs car seats that are available on the market today for you to try out. They can't show up at my door, have Liam try out 4 or 5 different models and then we pick which one works best for him and our truck. They may be able to get one or two but if those don't work, you are still stuck with trying to figure out if the one in the catalog is going to be the one that works best or not. Some car seats are too big for certain vehicles, some are too wide, some don't provide the proper positioning for Liam, etc.  It's all a guessing game if you don't have one in hand.

Back in 2012 we picked the Special Tomato car seat. When we tried it out Liam did seem to sit in it well, it provided proper positioning, and it fit well in our truck. Fast forward 8 months to when we actually received the car seat. Liam had had a huge growth spurt and the brand new, $1500 car seat just barely fit him. There was no way once winter hit and he was wearing thicker clothes or if he hit another growth spurt that this car seat would last the expected 2-3 years. He just fit in it.  I had his PT check it out and she was concerned as well.

After letting NuMotion know, they ordered the next size up in the Special Tomato. When we received it, our DME guy and I were shocked to see such a huge difference in sizes. This one was too big. So big, in fact, that we couldn't even get the chest strap to come within the 2 inches of Liam's neck that is required for proper safety positioning. He was even trying to position foam inserts over foam inserts to get him to sit in it right. At that point I was saying huh uh. That is not going to work. We need a different seat. The Special Tomato is not the one for Liam.

After getting approval to order a new car seat that was not Special Tomato, our DME guy was able to find a car seat that he thought might work for Liam.  He brought it out to our house, we tried Liam in it and put him in the car and it was a beautiful thing. He fit perfect. It fit like a dream.  We finally had one that would work. And for years to come too. He said he would get it ordered and it shouldn't be no time at all to get it in.

Fast forward to yesterday. My DME dude had to come to the house to fix Liam's stander. I asked when we were getting the car seat and he told me he had bad news. NuMotion won't let me get a new one. After getting over my shock and finding words to say, I asked him, "So you are telling me NuMotion said that Liam has to use a car seat that is too small for him because they don't want to get us a new one?" He said that was not what they were saying. Just that we couldn't get another one. So I said the same thing again. NuMotion won't allow a new car seat, that would provide proper positioning and safety in the event of an accident because they don't want to. NoMotion said we could get a new car seat, fitted us for one, and then said they had changed their minds and we couldn't get one. I asked for the corporate management's number.

Liam is fortunate to have a Medicaid case manager who has his back. She will fight to get Liam what he needs and she does a lot of dirty work in order to get things done. I can't say enough good things about her. It was a hassle on her end to go through the process of getting this car seat paid for in the first place and to have it not be right and NuMotion not fix it was going to have her on the phone with them immediately.

After I put in my call to my case manager I called the the corporate number and spoke with a very nice lady who took down everything I said. She said she was forwarding the information on to our regional manager and I should get a response within 24 hours. If I don't hear within 24 hours a formal complaint is auto-logged with corporate so she said I should definitely hear something today.

We started this process back in 2012.

Liam deserves a car seat that fits right, keeps him safe in the car, and provides proper positioning. It shouldn't be this hard to make that happen for him.

His normal smiley self on the way to school. Sitting in his way too small Walmart seat because it's easier than the too small Special Tomato.

     

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? 

Tricky Heads

We have spent a long time trying to figure out something we could do to help Liam with his head control with no luck. And faced with a classroom environment for school this next year, we really need to do something...anything.

Working with the DME (durable medical equipment) company in our area, while they try to be helpful, can frustrate even the most saintly of souls. We have had two PT's, the mom, and the preschool teacher trying to figure out what was available, what we could trial, and eventually use permanently to help Liam with head control and we got no where over the last 3 years. Yes, heads are a tricky thing when it comes to equipment (not all head control issues are alike), but having spent the last three years only trialing out one thing is a sad testament to the state our children are in: needing adaptive equipment and not getting what they need. We are getting nowhere. Liam's not an isolated case here. And it's frustrating for everyone involved. I'm not exactly sure where the breakdown occurs, but when you know there is equipment out there that could help your child and not only can you not try it out, no one seems to be able to know how you could go about doing so, you tend to get fed up after a while.

With that in mind I decided to just go ahead and get Liam's Head Pod myself and not wait for medicaid/DME/school, etc to figure this all out.

There is only one licensed distributor in America for the pod and it ended up being cheaper than I thought. Still pricey at $330.00 but when compared with Liam's neoprene chest strap on his wheelchair (you can see it in the picture below) costing $375 to replace, you can see how the Head Pod is a steal!

It took us about an hour to get it put together and situated just right for Liam. It's not difficult, it's just having to piece together everything and figure out what sizes he needs and where it all goes.

Liam was patient and tolerable for the first half hour but the second half he started to get upset. The strap kept slipping off the back of his very flat head and I was afraid the Head Pod wouldn't work right due to him not having a nice bulging occipital lobe.  We found out that if you strapped it tight enough, he starts to look like a Shar Pei. And even though his forehead is covering his eye balls, his head is up! We're looking on the bright side of things here.

The device comes with several adaptors for the unit to be used on different pieces of equipment. We still need to adjust this area because it isn't ideal yet and the unit will come apart when Liam bounces around. But this is a definite step in the right direction for Liam and proper positioning. His PT and preschool teacher saw it for the first time today and they loved it. Ideally Liam should be spending copious amounts of time in it each day to help him build his muscles and strength and stamina. I got two hours out of him today so he's already getting used to it and making progress. He can even sit at 90 degrees with his head up for periods of time without using the pod.

The video testimonies on their website are compelling. Liam is different, as always, in that with his CP he moves a lot. He does calm and relax after a while and after having his PT and preschool teacher work with him in it yesterday, the results are pretty promising.