As an infant, we noticed Jax was fussy and noticeably more so at bedtime, nap times, when we placed a hat on his head or if I laid him a certain way...we weren't sure why, (and honestly didn't even list these together until recently) but chalked it up to him being a newborn and possible colic...we switched formulas, held him more often, rocked him for HOURS every night to no avail... When Jax was about 3 months old, we noticed that he wasn't wanting to turn his head to the left...instead, he'd turn his entire body...having a child just a year prior, we realized that this wasn't something we noticed with his sister. So, off to the doctor we went and expressed to her our concerns and were informed that he has a condition called "torticollis" in his neck.
So, what is "torticollis"?
Torticollis is a condition in which the head becomes persistently turned to one side, often associated with painful muscle spasms. We were told that he needed therapy a minimum of 8 times a day and a therapist that comes to us weekly to monitor his progress and provide him more aggressive therapy.
Fortunately, we are seeing a great improvement in his head and neck movement, however, the torticollis has caused him to have a misshapen head. As his sister says in her sweet high pitched voice, "Bubby has lumpy head?"
Our biggest surprise came when the physical therapist and pediatrician recommended that we meet with a specialist to see if he would be a candidate for a baby cranial molding helmet....I was completely devastated. I kept telling myself that I should have stopped this from happening. I would stare at his flat spot willing it to be round, I obsessed...I cried...I felt so guilty.
So relunctantly, we met with a neurologist, who reiterated what the pediatrician had stated and gave a script for a "Cranial Orthodic Helmet". Who knew they could just jot it down like we were going to be picking up some baby pain reliever or something.
I scheduled his appointment for the doctor to examine his head for a helmet, and as I sat there, I couldn't help but notice all the pictures displayed of other babies with the same condition, most of which were decorated with stickers and silk flowers. The children seemed unperturbed by their accessories, but that didn’t ease my mind. I sat there holding my child and was choking on another huge dose of guilt with a side of remorse.
He shared with me the necessary regimen, which included wearing the helmet 23 hours a day. The one hour with it off was for cleaning the helmet with alcohol and giving Jax a bath.
I cried a little in the parking lot after that first visit. I’m a sensitive lady, and this was a big test of my mommy strength. I told myself to get over it and do the right thing, which worked well (as did the chocolate milkshake I bought myself on the way home). :)
But here's where we are at...Jax's helmet is considered "cosmetic", which means insurance will NOT cover this. We're fighting this because its considered a medical necessity, but the determination could take months....and we don't have months. We have to come up with $2400 along with still trying to play catch up from all his other medical bills as a result of this. This is hard. We were told we had to put $800 down in order to get this started, and we needed to start this process ASAP. If not, his plates would fuse together and our only other option would be surgery on his head. NO WAY. We worked with them, and they agreed if we put down $400, they would start the process. However, we have to pay the remainder in a very very short time frame.
As a parent, you learn quickly that you do whatever you can to get your children what they need. Even if that means some BIG sacrifices and swallowing your pride and asking for a little help. So here we are, trying to catch up on over $3,000 in accumulated medical bills for Jax so far, along with now having to put down $2,400 in a short amount of time to pay for his helmet.
This was a HUGE unforseen expense and we literally only had 3 days to come up with some type of payment, and $400 was all we could do. With Ryan transitioning with jobs and paydays, and us playing catch up on me being out with Jax and not working...medical bills have piled and piled up.
We asked for assistance, but don't fall in any bracket for help. The neurologist referred us to the Specialist that charges minimal compared to others and we are so thankful for this alongside with the hospital putting us on a payment plan for the other bills.
We want to thank all of our friends and family for this huge flow of love and support. He might not have a life threatening condition (we thank GOD for that!), but he is our son, and this is a big hurdle and a sad setback.
I will continue to put updates on facebook of his progess and just share the story and hopefully be able to provide some relief to another parent who may be going through this very same situation.
You know, I've come to the realization that I will make many many mistakes as a parent, but putting this helmet on him won't be one of them.
-The Swifts and "Bubby" Jax
DonationsSee top donations
- Karen McCanna and family :)
- Don and Paula Swift
- David & Celeste Swift
- Glenda Swift
- Grandma Levy
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Contact us with your questions and we’ll answer, day or night. Learn more