LOTS has happened since my last post. The biggest piece of news is that we've seen some correction! In order to determine the amount of asymmetry of a head, measurements are essentially taken diagonally of the head from the sides of each forehead to the backs, like the white lines in this picture:
The difference between the two measurements is the asymmetry. Ian's asymmetry originally started at 9mm ... at last measurement about a week ago, we were down to 5mm - YEAH!
In fact, our orthotist said that if Ian had just walked through the door for a consultation, they would not even recommend putting him in a helmet. But since we're already doing it and he's adapted so well, we're planning to stick with it for a while to see what will happen. Our original goal in this whole process was to minimize the risk that he might have issues related to the skull asymmetry (sinus problems, TMJ, vision problems, etc.) down the road, so it seems like the right thing to do to keep going as long as the helmet fits.
So, now back to what's changed....
After Ian was in his helmet for 4 weeks, we went in for an adjustment. The helmet seemed like it had quite a bit of room in it, and so I’d asked at several other adjustments when they expected that to change. The answer I kept receiving was that he would eventually grow in to it and it would grow tight. 4 weeks later … the helmet was still loose and measurements (at my begging … they did not seem to think they were necessary) confirmed that nothing had changed in the size and shape of Ian’s head. This didn’t really surprise me much, because how in the world could it be “reshaping” his head if it didn’t even fit snug enough to redirect growth?
I had some suspicions after doing some research just after he received his helmet that we might have some better options out there. But I felt stuck. Riley had referred us to this orthotics company, we had met others that had used them with good results, insurance had already approved and paid the claim, etc. I felt like I had to give it a chance. But 4 weeks later, with no improvement, my patience had run out…
It was then that I had a 30 minute phone conversation with another orthotist. I explained our situation and told him that I didn’t have any reason to believe that the helmet Ian was wearing wouldn’t eventually work, but I wanted a second opinion. He was very concerned that the helmet Ian had was not FDA approved (the list is pretty short of those approved…and shouldn’t they be? They are remolding a child’s skull!) and the fit seemed off. After going in for a consultation (we were there about 2 ½ hours), they offered to make us another helmet for Ian. They took a computerized “scan” of his head and this was used to make a foam model of his actual head dimensions. Then, the helmet is fabricated in one of 5 FDA-approved facilities to the exact specifications of his skull.
When we received the new helmet one week later, the difference was like night and day. I know it probably seems ridiculous to most who didn’t interact with Ian every day, but it fit so much better – and the best part (according to Ian) is that there is no chin strap.
One week after Ian got his new helmet, we went back in to make sure things were fitting correctly and there were no spots rubbing on his head. I laughed as I told the orthotist that I thought his head was actually looking better already, but I was fairly certain it was my mind playing tricks on me. He measured and …VOILA … from 9mm to 5mm!
We’re not expecting that type of change every time we go in, but it was definitely a good start. Our next appointment is in three weeks on April 13th. Then we go back to see the neurosurgeon that originally recommended the helmet a couple of days later on April 15th.
We’re really hoping that Ian can graduate by the end of May. We have plans for a 7 day Disney cruise to the Western Caribbean and it would be really nice to not have to wipe the hoards of sweat off his head that I know will result from warm weather and sun.
If you’re actually still reading this, thank you for your dedication! We appreciate all of the love and support so many have offered throughout this. To know so many prayers are being offered for Ian is truly amazing. I’ll update again as we know more =)
Thats awesome!!! Nothing beats a mothers gut feeling! Good for you sticking up for your little man!!
ReplyDeleteSarah