Today was Owen’s last helmet check—three months after he stopped wearing it—and the specialist said his head looks great! It has evened out a bit more and we don’t need to go back unless we start to have any concerns!
We had a helmet check-up today and I thought it was just going to be a normal check-up with some measurements and maybe a bit more grinding on the helmet…but the specialist just took a quick look and said “I think he’s done! I’m extremely pleased with the results!”
I asked if he still had to wear it at night, like had been mentioned before, and he said no! He said since he rolls around so much and sleeps in all positions, he wasn’t worried about nighttime anymore. I also showed him one of the many face-plant pictures and he laughed. I wondered if Owen would still be able to sleep face-plant style without the breathing room the helmet allowed him.
So, Owen graduated today! YAY! He was in the helmet for just over three months (he got it July 24). Three months is apparently an AMAZING amount of time—most have to wear it at least four months, if not more.
It will be interesting to see how he adjusts to not having it on all the time—how bumps to the head (and the like) will make him react. But, he’s already napped face-plant style so apparently he can do that with or without the helmet, LOL. :))
We had a helmet appointment and scan today. We were really thinking/hoping that this would be the visit where we’d get the go-ahead to just have him wear the helmet at night…but apparently we’re not quite there. The specialist said Owen is doing ABSOLUTELY AMAZING but could still benefit from another month, but said he should be out of it by Thanksgiving.
These were all taken the same night, over maybe 30 minutes.
Face plant! His helmet must give him just enough room to breathe. So cute, but still hard to watch.
Face plant–now with thumb sucking!
Half face plant with his butt in the air! This is starting to sound like an Olympic event!
Our specialist wanted another head scan to see just how well Owen’s head is doing, so it was back to Livonia and the laser scanner. I didn’t get a picture of it the first time, so here it is:
Something else I didn’t get the first time was the cute little stocking cap Owen has to wear when getting scanned (of course I couldn’t get a good picture). The black dots are stickers pointing towards his ears so they can align the scanned images:
Laying down in the scanner! Of course this is much, much better than the alternative of plaster casting, but it’s still a bit of a challenge because he has to be very still to get a good scan…which means you have to hold his arms (so they don’t fly up and get in the scan) and try to get him to not move. Of course, he would be perfectly still…until the motor started whirring, then he’d twist his head to look at it (which made for a very interesting scan!). I think it took about six tries (scans) this time to get a workable one.
A comparison of the first scan (left, with the cute frowny face!) and the second scan (the bigger head on the right). From the size difference, you can see right away how much his head has grown—and the numbers definitely proved just how much his head had changed shape for the better. Before, the critical measurements were off by centimeters (plural!) and now they’re down to tenths of a centimeter! (If you are looking really closely at the scan and see that the back of his head still looks flat—it isn’t. I asked about it, and it’s “flat” because that’s the tiny spot where his head was laying on the glass.)
After only wearing the helmet for 1.5 months, the specialist is THRILLED with the progress. He is guessing that in a few weeks, if we are all happy with the results, we can go to just wearing the helmet at night!
Go, Owen! Or, should it be: GO, OWEN’S HEAD!?
Good news! The specialist said Owen is doing AMAZING and he will probably be mostly done with the helmet in a total of 2½ months instead of the typical 3-4 months! I say “mostly done” because he would probably still have to wear it at night—just to make sure it doesn’t become flat again since he’s still sleeping on his back for the most part.
Our next appointment in two weeks is back in Livonia because they want another scan to see (technically and precisely) just how much his head has changed.
Our specialist asked if Owen had a growth spurt in the past two weeks and I said no, not that I’ve noticed, why? He said because his head has shown a DRASTIC change in the two short weeks he’s had the helmet. He still has a long way to go, of course, but there are definite bumps on his head that weren’t there before—meaning the skull is reshaping. YAY OWEN!
Waiting for the appointment:
So I had to take Owen in for a sorta emergency (not really EMERGENCY) helmet adjustment appointment today. Over the weekend, when we took the helmet off, we noticed that he had two huge red spots behind his ears—and one of them even had a sore starting (with what looked like a pimple on it!). 88| Poor guy, it must really have been sore and irritating—he has always kinda reaching up and trying to scratch at his face/ear, but we assumed it was just because it was something he wasn’t used to touching his face. Tom tried to use the dremel to pare it down, but of course we didn’t want to do to much in case we ruined the helmet (and had to buy another one).
I called first thing in the morning and they got us in that afternoon (unfortunately, I had to miss a mom’s group meeting) and made the necessary adjustments (they use some type of tool to grind away the foam core) and told us NO MORE DREMEL! We didn’t hurt it, but they said if there are issues like that again, just leave the helmet off until we can get in to see them. Then they made some adjustments to other parts of the helmet (above his brow line, and gluing a side piece in) and that was it.
We have our regular check-up next week, which we may be able to postpone if there are no spots that need attention and if he seems to be doing okay.
We are thrilled—we can already see a major improvement in the boy’s head shape! After just 7 days! YAY!! (But he’s still going to have to wear it for quite awhile, though—if he stops, it could just as easily go flat again.)
We didn’t take specific pictures, but these are two we had—you can sort of see the change.
Soooooo cute, but soooooo sad. He NEVER had this frowny face until he started wearing the helmet. It might not be related at all, but of course we can’t help but make the comparison.
At the very least, we know he’s my kid—that’s definitely my infamous pout.
P.S. See the wet, mussed hair? That’s because we just took the helmet off before feeding him!
So, he finally fell asleep for his nap about 6pm. I had put him in his crib, thinking maybe there were just too many distractions downstairs (it wasn’t any different from any other day when he naps downstairs, but you never know).
Turns out it was LUCKY I put him in his crib…because he didn’t just nap for a few hours like we thought he would. Noooo, he slept straight through until…4am! 10 HOURS! Holy wah! Tom and I had stayed up until about 10, hoping that he would wake up so he could wear his helmet again for a bit…but alas, it wasn’t meant to be.
At 4 after I fed him (after he sucked down his 6oz bottle in a matter of minutes), he was NOT his normal tired self. Crap. But I guess it should have been expected since he had just slept 10 hours! But he needed to go back to bed—he can’t start learning that the day starts that early!! So I turned on his mobile and left. I watched him for a few minutes on the monitor, and he was just chatting with himself and making not-tired noises and moving around. I turned off the monitor and shut our bedroom door so I didn’t hear anything…and I was able to fall back asleep. I checked around 6am when Tom was up and getting ready for work, and Owen was out. So, I’m not sure when he finally fell back to sleep, but he did.
Tom got him up around 6:30 and put his helmet on (by himself!) so by the time I got downstairs at 6:45 Owen was watching Sesame Street and jumping like normal. He still looks cute in the helmet, but he also looks so pathetic… Poor kid. I think it’s still cut too low above his eyes (they trimmed it some, but I think they can do more) because it looks like it covers his eyes and I constantly want to adjust it so he can see better. We’ll see what they say at our next appointment.
Just to be on the safe side, I called in the morning to MAKE ABSOLUTELY SURE they 1) had the helmet and 2) it was the right one. They couldn’t check it at that exact moment (from the gist of the conversation, it seems only the specialist can open the box?). But I was assured it would be double-checked as soon as he was free, and we would get a call if there was a problem. We didn’t get a call, so it was off to Livonia to try on the helmet and get it fitted! Tom was able to go, so I was happy about that.
Our “substitute” specialist was nice, but it will be good to see our regular guy again (I am sure they are both equally qualified, but the guy we saw today made sure we know they do things a little differently from one another).
So without further ado…here’s Owen the first time he tried the helmet on:
Making the marks of where to cut it out for his ears and around his face:
The burp cloth is there because he just ate, hadn’t burped, and we wanted to be prepared. Oh, and still making marks and checking the fit:
Just one of those cute baby faces we didn’t know we got until we looked at the pics afterward. It just makes me laugh…because he really wasn’t uncomfortable or upset or anything:
On the way home…since it was past nap time, he was out in a few minutes. But isn’t he cute?
He only had the helmet on for 45 minutes (it takes 5 days to work up to the 23 hours a day thing) and look how sweaty his head is! I can’t FATHOM what it will be after 23 hours! Hoo boy. And they said after a while, there’s no real way to clean it. Lordy.
So, the first day he has to wear it one hour, then off an hour, then on an hour, etc., and no naps or nighttime. The next day, it’s two hours on/one hour off with no naps or nighttime. The third day it’s four hours on/one hour off but then including naps and nighttime. Day four is eight hours on/one hour off plus naps and nighttime. And then day 5 we jump to wearing it 23 hours. We only get to take it off for an hour to bathe him and let the helmet air out. (Although, he did say we could take it off for like 15 minutes here and there throughout the day to dry his head and let it air out IF he’s truly a big sweater. We assured him he IS. I really don’t think they believe us. Oh, and there are holes in the back of the helmet, but it’s not for air flow—it’s so they can look in and check how his head is fitting. They guy assured us that more holes did NOT help with air flow.)
I think this helmet it going to be WAY STINKY in a month or so, considering how much the boy sweats. I mean, seriously. His head sweats just laying on your arm for a 15 minute feeding! And his hair was soaked from just the 45 minutes he wore it on the way home! It can be cleaned, but not REALLY cleaned—they say you can wipe it out with rubbing alcohol or try to get rid of any smells with nail polish remover. You aren’t supposed to put powder in it and you can’t use Febreeze or anything chemical because it’s touching his head and could cause an allergic reaction.
It’s also going to be a challenge for the next few days—as it’s nearly impossible for one person to manage the helmet alone. It takes two hands to open it/put it on…so it really is necessary to have someone hold the boy while the other person puts it on. If he would sit on his own (which he can almost do, but not well enough to sit STILL for helmet placement) it would be doable. At least it’s the weekend and Tom will be around for the most part, and by next week maybe I will have mastered the art of baby wrangling with my legs so I can put the helmet on alone.
The worst part of the day was that he missed his 1pm and 3pm naps—he had about a 30 minute catnap on the way there and back, but anything less than an hour doesn’t count as a NAP (according to my sleep expert book!)…so he’s extremely cranky at the moment not wanting to sleep but desperately needing to.
The mobile has stopped and I only hear ever-so-faint whimpering and heavy breathing. I think he’s finally out. Phew.
He sneezed and woke himself up. Now he’s fussy and screeching again. DAMMIT.
Anyhoo…I still can’t fathom him having to wear this for the next X number of months. We asked when he will have to be rescanned (to see how much his head has changed shape) and we were told maybe at eight weeks or maybe not until 16 weeks since we should be able to tell just by looking at him. Eight weeks? 16 weeks? Logically I know it’s going to be that long—but actually hearing it out loud was another story. SIXTEEN WEEKS….FOUR MONTHS. That’s a long time.
That said, they said we might be able to see some changes within 2-3 weeks, so I’m really looking forward to that and hoping we do…just so I can SEE it working.
We do, however, have to go back for bi-weekly checkups. Except for the first one, which they like to schedule for one week. Unfortunately our guy still won’t be back from vacation, so that means we either get a SECOND new guy if we don’t want to drive to Livonia—or we get to see the same guy we saw today, but we have to drive the distance to Livonia. GRRRR.
P.S. It’s now 5:21 and someone STILL isn’t asleep. And he’s been fed AND changed. Hoo boy. He needs to sleep so we can get the helmet on him again for a bit tonight before he has to go to bed!
Today was the day Owen was supposed to get his helmet. Yes, SUPPOSED to get his helmet.
We were fit into the schedule for today because our specialist was going on vacation for 1.5 weeks. Luckily we only had to drive about 15 minutes, as the appointment was in Southfield (versus Livonia, where we had to go for the laser scan). I picked up Tom, and off we went.
As we were waiting in the exam room, we heard our guy (the specialist) say to his assistant, “It should still be in the box. It’s probably not even opened yet.” And we didn’t think anything of it.
Fast forward a few minutes when he comes into the room to apologize—seems they sent the helmet in the wrong color/pattern. We were supposed to get a light blue helmet but instead got this:
Yes, a PINK helmet with BUTTERFLIES! 88| >:XX
They are rushing the second one and it should be here Friday. (So, hmmmm, it took 1.5 weeks for the first helmet, but after a mistake it only takes 2.5 days?) But now, since our guy will be on vacation, we have to drive to Livonia. Ugh. And Tom might not be able to go. Double ugh. >:XX
Yes, mistakes happen. And they apologized over and over and over. But it’s still annoying. And we could have avoided even GOING today had they actually OPENED the box when they got it and saw it was the wrong one.
Long story short, the helmet is NOT covered like we thought it would be. Apparently the physical therapy appointments are but not the actual orthotic device that will help the most.
After doing some research, A LOT of military families are dealing with this, and have filed appeals. Some get it covered, some don’t. Lovely. What a pain in the ass.
But I guess that’s what savings accounts are for, right?