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.

Don't Miss This!

Liam could NOT do this before stem cells. You can see how much of a struggle it still is for him and how he naturally keeps his head down, but the fact that he even tries and can lift it at all is a miracle! NO way could he ever lift his head to save his life before now. And in full disclosure, I am helping him facilitate lifting by rubbing his back, but he is lifting his head entirely all by himself here!

I am so proud of my little Liam and wanted to brag. This first photo is of him using his arms to push his chest off the floor and to get his head up! He JUST started to do this this past week. I am so very proud of him. I am only holding his left arm in this photo in order to steady him! He is trying to see his new toy in front of him.
And this photo may not look like much but it is a big deal. Liam is eating face up in my arms just like you would regularly cradle a baby to feed it. Liam has NEVER eaten like that. He normally lies cradled in my arms but he is chest to chest with me and his head is cocked back on the crook of my arm so that his head is in the CPR position. Very strange, but it was the only way he could coordinate and organize himself to eat. He has a very weak suck and with the coordination he could never get the hang of eating like this. He still isn't great at it but he's doing it!!