Fill-In-The-Gap Friday

The Helmet Fitting

Back in November, the boys started physical therapy for a condition called Tortocullis. The kids grew unexpectedly fast for being preemies (they still are!) and all of that weight on muscles that were 2 months behind caused a few problems. They were as big, if not bigger than a full-term baby this age, but their muscles were developmentally two months, maybe three, behind. Basically, they couldn't move very well!

We had the boys sleeping in swings at this time, they were about 6 months old. Because they slept upright most of the day, they started to favor looking out on one side of the swing, which was toward all the action! The extra weight combined with this sleeping position wreaked havoc on their neck muscles. They started to get "stuck" looking to the left. Their heads tipped down to their shoulder, ear almost touching - and this was constant. They just didn't have the muscle tone to fight it and return back to a righted position.

We took them in for their check up and they recommended starting physical therapy to correct this. We started taking them to the Children's Hospital PT Department where a lovely PT named Dominique stretched and pulled and tugged ever so gently on their shoulders, necks and arms. She noticed that Cole was the most severe, most likely because his head was the biggest and therefore more heavy. She told us we needed to be coming in a few times a week to start seeing a positive progressive result. We just couldn't make that commitment! It was hard enough getting out of the house every few weeks at that time with all three! So, she suggested a State Aid program called Early Intervention, EI for short, that was controlled by each county. It's free to those who qualify for therapy, no matter what your income. AND, the best part is that they come to your house! Yay! It was the break we were looking for, so we signed up immediately.

Through all the red tape and paperwork, the therapists came to the house to evaluate the boys for therapy qualifications. Of course, they were both in desperate need for it, so they both got on board. We started Physical Therapy (PT) and Occupational Therapy (OT) right away, with both therapists visiting the house weekly. After a few sessions, the PT noticed that because of the "stuck" position the boys had been in for quite some time, the back of their heads were extremely flattened on one side. They were significantly misshapen and that required attention.

It was not only the aesthetic aspect, it certainly looked terrible and we didn't want them to deal with a misshapen head for the rest of their lives! It was also an alignment problem. Since the one side of their head was growing out and the other wasn't, it was throwing their whole head out of alignment as it grew. Their eyes were tipped, one ear was higher than the other and their jaw was torqued. If not properly guided back to a central plane, these parts of their faces would suffer serious life altering affects in the years to come. Because they were learning to adjust to the world, their brain would assume that this tipped line of sight was normal and begin to see that way. Then, if a correction was made to their heads/eyes later in life, even though their eyes would physically be straight, their line of sight would remain crooked. Weird! So, we felt a sense of urgency to correct this major problem. I think their jaws worried us the most.

We were led to a great Orthotics place who make helmets to correct the shape of babies' heads. We went for a fitting, paper mache and all, so that the kids would have a custom fitted orthotic. They were called "Star Bands", not sure why...but they were made of a hard plastic shell with layers of foam painstakingly adhered to the inside. The idea is that as the kids grow, they remove parts of the foam, one layer at a time in an area they want to encourage the head to grow into. Otherwise, they left the foam to "hold" an area, as they called it, encouraging the growth to the path of least resistance, the open spots. In no way did it press the head or constrict growth, just encourage into a certain area. It was actually quite loose! We were able to pick the design on the outside of it, to make it more fun and less of an obvious medical device. It also had a opening in the top, a circle, so you could just see the new hair they were sprouting poking through the top. So cute!



Braden was having a hard time, it was hard to watch...


Cole is in good spirits!


Still doing well!


Phew, it's over! Covered in plaster...


It did a tremendous job for both of the boys. Braden's condition was much less severe than Cole's, so he only had to wear it for about 3 months. Cole had his on for about 5 months. Much less than we anticipated, since they warned us we might need 8-10 months at the high end of the estimate. The point is to keep them on until we see a desired result, and then keep it on any time the baby may be stationary, laying on the back of his head for a long period of time (ie, sleeping) until the growth plates fuse.

On New Year's Eve, we picked up the new helmets. Day One! We started on a schedule meant to acclimate them to their new accessory, and after two days, it was on full time. That meant, 23 hours a day, 7 days a week. One hour break to get a bath and to clean out the helmet with alcohol. After a few days, the boys were fine, barely noticing them. It was actually nice protection for Cole, who was just starting to move around, rolling into the points of the coffee table. It protected him more times than we can count over those few months!
We traveled to Rochester once a week to the Orthotics place so that the helmets could be checked for the need to cut out any new foam areas. It was tedious, but we kept reminding ourselves of the ultimate goal! We had a tremendous experience with everyone involved, we would recommend it highly to those who are worried too! Best of all, EI took care of the bill for us, since Insurance does not cover the cost of the helmets. They consider it merely an aesthetic device, which is so far from the truth, it's silly. We have been told many a time that we are lucky to be living in Genesee County, since the services are much better over here. We know how lucky we are and thank God every day for the services we have been put into contact with - our babies are in good hands!

They were actually kinda cute...


And it never stopped them from trouble,


Or sleeping....


Or playing....


Or wrestling!