Our Halo Journey
Many of you are familiar with this part of our story. Some are not. So before we dive right in, let me shed some light into how we ended up on our Halo journey with Asher.
In March of 2021, we got a call from Asher's school where they informed us that Asher fell off of the playground equipment and they called the ambulance. I rushed to the school so fast I beat the ambulance there. Asher seemed ok honestly, he busted his head open in a couple of spots, but it wasn't bad enough to need stitches. He was upset, but he was doing ok otherwise. So we took him home and kept a close eye on him. And for the most part he honestly seemed like he was fine. Except that over the following couple of weeks he started showing some neurological symptoms. Some that many parents might have brushed off as a 3 year old being a 3 year old - but with Asher's skeletal dysplasia, we were a little more cautious with respect to some things, so we took him to the ER for an MRI. Even the hospital staff looked at me like I was a little crazy when I told them that my three year old was wetting his pants and that I wanted an MRI as a result. But they indulged me, better safe than sorry. So they admitted us and scheduled an MRI for the following morning. The neurosurgeon came in to give us the results the following afternoon. It isn't often you hear a neurosurgeon admit that something is above their skill level, but that is the gist of the conversation we had. She showed us pictures where Asher's vertebrae in his neck had shifted and were pinching his spinal cord to the point that it was already bruised. She said she couldn't help him, and she didn't know any surgeons who could, but she wasn't comfortable releasing him except for a direct hospital to hospital transport. They didn't even want him getting out of bed. That, plus the fact that I had a 1 year old at home and it was still during the point of the pandemic that hospitals were only allowing one parent in the building made for a stressful stay to say the least. But alas, despite the local surgeon's utter panic regarding the state of Asher's neck - this was something that we had been prepared for essentially since we got Asher's diagnosis. Cervical instability is extremely common with individuals with Asher's type of dwarfism, spondyloepiphyseal dysplasia congenita (SEDc), and we had been getting x-rays every 6 months of Asher's life to monitor for any sign of it. Until this point though, there weren't any. Now it was crystal clear on the screen, and needed to be fixed. And this team at our local hospital, who had likely never heard of Asher's type of dwarfism much less seen a child with it, were frankly in an utter state of panic and dismay. I took some pictures of the images with my phone and emailed them to his specialists up at his skeletal dysplasia clinic in Delaware, since while the local team had no clue who would be able to fix this - we knew exactly who could. So his orthopedic surgeon and neurosurgeon took a look at his scans and agreed it was urgent and we needed to get it fixed without waiting around, but they also knew that Asher was perfectly stable and fine to be released from the hospital and we could just fly up the following week. This was something they saw everyday, after all. And let me tell you - getting the local hospital to actually release us was no easy task. But we finally got out of there and booked our flights.
Asher ultimately had a bone graft taken from his hip to be used to fuse his C1-C2 vertebrae to eliminate the instability. Since his bones are so small, the surgeon was not able to use internal hardware (they didn't have screws small enough to use to stabilize the vertebrae while the fusion took place, they could only use wire cabling), so he had to spend the following 4 months in a halo to keep his neck completely still and devoid of any movement. The moment I saw him in recovery was the absolute hardest moment I have had as a parent to date. You can think you are prepared to see your child like that, you can look at all of the pictures of other children, but there is nothing that can really prepare you for how jarring that feels. He was stark white, and so unbelievably upset - and he was crying for his dad who he thought left him there (and because of the pandemic rules, only one parent was allowed in recovery). My heart shattered and the nurse had to look me in the eyes and tell me I needed to make sure I kept it together because he was watching me, and if I got upset then he would too. So I mommed up and put on my brave face, and we made it through the hour in recovery before we were able to go to his room and see his dad. The crazy thing about children is how unbelievably resilient they are. Had I suddenly been unable to sit up, or walk, or turn my head, for 4 months, I would have complained for 99.9% of the time. But Asher never did. He asked to take the halo off one time while we were still in the hospital, but after we told him we couldn't take it off he never asked again. He never complained about it, he just took it for what it was and soldiered on.
Over the following 4 months, we tried to uncover every tip and trick we could to make life as easy as possible for not only Asher, but for us as well. Especially given the fact that on the flight home 5 days after his surgery he managed to pick up a stomach virus and spent the following week throwing up. And for a child who can't sit up or turn himself over, it took my mom skill to level 10, and my anxiety right there with it. We went from having a relatively independent 3 year old to one who was completely dependent on us. So here was life with a 3 to 4 year old in a halo, and the various products and techniques we used to make life a little bit easier.
1. Car rides.
The thing about halos is that they are big contraptions that are essentially pinned into your head, and then anchored to your body by bars connected to a vest. It is big and bulky, and doesn't fit in most carseats. And even when it does fit in the carseat, you have to have a way of buckling them in, which means you have to dethred the car seat straps, thred them through the halo, and then rethred them into the carseat in order to secure your child into the car. Every. Single. Time. Talk about disincentivizing you to go anywhere.
So our carseat was not big enough to fit the halo. Thankfully we were able to avoid having to buy a new one since Asher's hospital did enough of these surgeries that they actually had a loaner program where you would leave your carseat with them, they would loan you one that worked with the halo, and then you traded back when you got the halo off. So here is the carseat that we used with the halo that not only fit the halo in it, but was also designed so that it was relatively easy to unthred the straps each time.
Here is a link to the specific carseat we used that worked really well with the halo. Diono Radian 3RXT
So when Asher got that stomach virus essentially the day we came home, and he was vomiting every night, it made me realize the implications of him not being able to sit up, roll over, or turn his head. So Asher slept with us in our bed the entire time he had his halo since I was not comfortable with him sleeping on his own. While I have never been so sleep deprived in my life, I was ready to turn him over at the blink of an eye in the event he started throwing up at any point. So we needed to find some way to get him comfortable, since laying flat on his back was not pleasant at all (imagine your head being suspended and not feeling like you are able to actually rest your head on a pillow). After about a week he was comfortable enough in the halo that he was ok being turned slightly on his side at an angle, and that is how he was the most comfortable. The best way we found to do this so pillows didn't slide around under him was to use his small foam couch that pulls out to a little bed, place that in the middle of our bed, and use two pillows to form a wedge in the middle. He laid with his back against one pillow, propped slightly on his side, and the pillow in front of him worked to keep him from sliding down or accidently rolling onto his face.
Here is an illustration of how we configured this to work best for him, as well as a link to the couch (and just to note - he still sleeps on this couch probably 90% of the time on his bedroom floor, and it works great as a travel bed for him anytime we go anywhere). The little sides of the couch kept the pillows in the V shape and it was by far the most comfortable sleeping position he was able to get into.
So the situation with the stroller is kind of like the situation with the carseat, in that you need one that is wide enough to fit the halo, and that you are able to strap them into. This little travel stroller worked absolutely perfectly. He fit well into it and the straps clipped and unclipped right at the buckle so we were able to simple unclip them, thread them through the halo bars, and then clip them back. It also folds up small enough to fit into the overhead bin on an airplane so we were able to take him straight to the plane seat before having to take him out, and then just collapsed the stroller and stowed it away.
It is currently out of stock on Amazon, but hopefully they bring it back soon, otherwise it should give you an idea of some of the features you are looking for. Summer Infant 3D Micro.
Since Asher was not able to walk independently with the halo on, finding comfortable seating for him was essential, since he'd be in it for weeks. We initially tried propping him up with pillows, but they always slid around, or he'd topple over to his side some, and we were constantly resituating him. We lucked into this chair when we were walking through Target one day, and it was the absolute best thing in the world. It is a relatively structured bean bag chair that was comfortable for him and kept him upright. The sides and back were rigid enough that we could place a table or coffee table tray on top of it to form a little desk for him. This is where he spent the large majority of his time in the halo, and we took it everywhere we went (outside, to other people's houses, wherever Asher went, this beanbag chair went). This chair was so essential to our daily lives for 4 months in the halo, we bought a backup in case anything happened to the first one. Settle In Bean Bag Chair.
Ugh. This was a tricky one, and I look back on bath time in the halo and still get that little sense of dread. It took us a little while to find something that worked - since Asher HATED having the pads on the halo vest changed, we really tried to do that as infrequently as possible, and only when we really needed to. So we worked to find a way to at least get a semi-decent bath without getting the vest pads wet. So here is the hack of a lifetime as far as halo life goes, and is one we truly stumbled upon as we looked around our house for whatever would help. I had recently gotten a set of foam climbing blocks for Ollie that were in her large play yard. So I decided on a whim to get the triangle block and put it up on our counter by the sink, and lay Asher on it so that the top of his head was just over the edge of the sink. This was 100% a two person job, as one person had hands on his body at all times to keep him safe, and the other person used the sink sprayer and a cup of water to shampoo and wash his hair. Once we washed his hair, we rotated the entire climbing block so now his body was towards the sink and we gently rinsed him off and gave him a sponge bath from the waist down so that the water ran into the sink (we usually put a towel under him to catch excess water). This would have also worked in a large walk in shower. Asher had a lot of PTSD from the surgery and frankly did not like being messed with at all at this time. So this was the best way we found where he felt like he was stable and secure and just laying down at a comfortable angle and we were able to wash around the halo.
So a lot of the time Asher would eat in his beanbag chair with his little lap table. But thankfully we also did find that Asher fit into his Tripp Trapp chair with the halo (it was on the snug side, so a child significantly larger than Asher likely may not have fit). This chair has been worth its weight in gold 10x over throughout the years, both Asher and Ollie have one, and I always swear by it whenever any of my friends ask for high chair recommendations. Asher now uses his without any buckles or straps, just like a regular chair, but it brings him up to table height since the seat heights are all adjustable. Ollie still uses the harness and is buckled in since she's a two-nado and would dive out of the thing if we left her unattended. Having this chair allowed us to still do mealtime as a family, and gave Asher options with regard to where he was sitting so he didn't get too sore or stiff in the same position for too long.
Ok all anti-screentime parents can avert their eyes now. I'll be the first to admit that Asher spent a LOT of time when he was in the Halo on his iPad (you can find relatively inexpensive refurbished ones on Amazon that are great for kids), and I have zero shame in that. Survival mode is essential, and we were still working full time while he was at home in his halo and therefore we were using every tool available to us. Asher spent a lot of time on kid coding apps, as well as a TON of time using the iPad LEGO instructions to put together every LEGO set known to man. The LEGOs definitely became easier as time went on and he had a little bit more strength to move and reach for things on his own. Video games on the Nintendo Switch were also our friend during this time, since he could take the Switch wherever he was and play from whatever position he was the most comfortable in. Anything he did had to be something that he could do without having to reach too far or turn or move his neck side to side or up and down. So for any parent going through the halo journey, give yourself some grace on the screentime, and please don't let it eat you up.
So there you have it - our halo journey in a nutshell. If you have any questions, please feel free to comment below or send me a direct message and I am more than happy to answer however I can. And please know - it is a temporary moment in time. It will go by faster than you could imagine. And it is ok to not feel ok right now. But you've got this.