Category Archives: plagiocephaly

Birthday Morning – (Not So) Wordless Wednesday 3/16

This little man was not into smiling for the camera this morning.

But at least we FINALLY got some decorations on his helmet

“Come on Mom, let’s go to school!”

(Obviously all taken with my crappy point and shoot. Sadness.)

Happy Happy 1st Birthday to my sweet little boy!!!

Come back tomorrow and Friday for much more festive not-rushed last minute birthday pictures!!

Plagiocephaly Update

So Tuesday was the big appointment day where I was hoping that we’d get all sorts of answers  – how much Mason’s head has improved, how much longer he’d have to wear the helmet, the whole shebang.

Well, that’s not quite what happened. Basically, Dr G measured his head with the tape measure, saw there was less than 2 mm of growth in his head circumference, shaved a small pokey piece off his helmet, played “give me five” with him, and sent us on our way with a “see you next month.”

He did say the flattening on the back of his head  (which has improved since I posted on Thursday) is not that bad and is more likely noticeable because we were use to his head coming to a point off to the side so of course as his head re-shapes, it’s going to look strange to us along the way.

So yeah, total bummer. I really had high hopes for good news and possibly an end date. But I totally get it – the success of the helmet is based on any new head growth growing into the flat area which is why the helmets work SO much better/quicker when they’re 4-6 months old because growth is nearly daily as opposed to 2 mm in a month…. So we’re shooting for a scan on the 29th now. Fingers crossed.


Plagiocephaly Update

So as of Monday, Mason has been in his helmet for a month. We go in for his scan on Tuesday, which I’m SO excited about. I want to have real confirmation on how well he is (or isn’t) doing instead of my untrained eyes obsessing! His head “feels” a lot better to me – it no longer comes to a point or has any funny ridges that just don’t feel right. Looking at him though, his head looks worse – the right side is no longer so flat, but it seems like now the back of his head is flat. But, considering everyone who sees him other than me thinks it looks great in comparison to how it was before, I’m trying to quit freaking out. Heck, even Grandpa B, who was a major “I can’t believe you’re doing this, it’s not necessary, my poor grandson!!” said “Wow, that’s really made a huge difference!!” when he saw him on Saturday. Woot woot!

I’m having a way harder time with this whole experience than I expected to. I started out with “He’ll never even notice a difference, everyone says that babies don’t care at all, these weeks/months will fly by” and now,  I’m in the “OMG, I hate this!” camp. Every single thing that happens, I wonder if it’s because of the helmet. Is he happier after dinner than he was earlier because his tummy is full or because it’s his helmet free hour?? Is he sleeping like crap because of his helmet or because he’s going through a stage?? Has he cried all day because his helmet is bothering him or is he getting a tooth?? Is he screaming and acting like the world is ending because I’m trying to put his helmet back on or because he doesn’t want to be contained and wants to be playing?

When I pick Mason up from daycare and they tell me that he’s not his same happy self, I feel like the scum of the earth for putting him through this. And then that night he spikes a fever of 103 and it turns out to have nothing to do with the helmet at all, I feel horrible breathing a sigh of relief. “Oh, a fever, it’s not because I’m torturing him.” Or maybe his bad mood is because he’s trying to become a moody toddler who throws temper tantrums and not because he’s wearing a helmet? (Which protects his head quite well when he throws himself on the ground dramatically)

Just ten minutes ago, I actually called his doctor to ask about the flat spot on the back of his head (which most definitely was not there two weeks ago) and he said that it could be from the shifting of the plates in his head and should go away in a few days. And that he’s never heard of anything happening otherwise. So, we wait. Wait to see more  improvement. Wait to make sure we’re not some freak instance where the helmet makes his head worse instead of better.  Wait for Tuesday. Wait until this helmet comes off and I have my happy little boy back. Ugh.

Tuesday’s Appointments

Tomorrow will mark two weeks in the helmet, which is strange because it feels like it’s been so much longer already. On Tuesday, we went for his standard adjustment (which is generally done at the 2 week point) and since we had already driven two hours for a 10 minute appointment, we stopped and saw a pediatrician while we were there.

I called at 8:00 to see if I could get an appointment at 10:30 (figuring it was a long shot in the dark) and instead was met with a “Which doctor would you like to see?” which just floored me. I’m so use to the “So and so is out sick/on vacation/it’s her day off” coupled with “She could see you next week” or “How about an on call nurse?” of our tiny smalltown clinic that I was amazed.  (When I looked at their website, I stopped counting pediatricians at 60, so I shouldn’t be too amazed I suppose)

Last Thursday, Mason had started a new (very unwanted) behavior – whenever he gets tired during the day, he goes berserk and does something that looks like he’s trying to rip his eyes out of his head. It’s absolutely horrifying  and I concluded that it was too much of a coincidence to NOT be from the helmet. I mean, he’s always rubbed his eyes when he gets sleepy, but this was violent and angry and nothing like that gentle “I’m sleepy” rub. As a result, he’s got scratches on his forehead and around his eyes from this behavior and I’m pretty sure the daycare has concluded the helmet is absolute torture. He doesn’t pay any attention to or even touch his helmet the other 12 hours he’s awake, so it’s obviously NOT, but it was definitely something we were concerned about.

Gary (the helmet doctor) shaved a bit off the front of his helmet so there wasn’t as much pressure on his forehead and said that’s pretty common since the forehead does a lot of the work holding the helmet in place, so it’s hard to find a happy medium. I really hope that’s the fix because I hate to see my little man so miserable, even if it’s only for 10 minutes a day. That’s the tough part of being 2 hours away from his clinic – it’s not like we can just jump in the car and get the helmet adjusted whenever we feel like it.

Gary also said that he can feel his head “popping out” which is awesome. That’s exactly what we want to do – any new head growth to go to the flat part. It’s not something we can see ourselves, but hey, this guy is the baby head expert. They won’t do new measurements and scans until our next appointment, which is on March 1st. Here’s hoping for at least 2 mm improvement (oh readers, remember long ago when we were praying for 1 mm improvement to keep him out of the helmet in the first place?? *sigh*)

were done with Gary, we went and saw the pediatrician for a strange funny scabbing Mason has had in his groin area for the past two weeks. It would get better overnight and then get bad the more he crawled and moved around and we were at a loss. Well, apparently poor Wee Man has a yeast infection!! It was only there and not in his mouth (aka thrush) which is awesome because otherwise I would probably have gotten it too and needed antibiotics. They prescribed us some cream to put on the area three times a day and by yesterday morning, it looked 75% better and now today, it’s almost gone. Yay!

This was the first appointment (out of 3 so far) that Mason has not been a champion car sleeper. He stayed awake 1/2 of the drive there but at least was content most of that. On the way home, he was fussy until he got his bottle and then gulped it down way too fast and projectile vomited it all back up. He then proceeded to fuss and cry for the next hour and finally fell asleep half an hour before we got home. That picture you saw yesterday? Was him passed out from total exhaustion from crying so long.

We took him home, cleaned him up, changed his clothes (the clothes in his diaper bag would have been way too warm for him to wear in the car since his helmet makes him so hot), and dropped him off at daycare for the last few hours of the day and then ran some errands. Daycare said he was quite the happy boy to be crawling around with the other babies the rest of the afternoon after being cooped up in the car for most of the day.

So right now, we’re in helmet limbo for the next month. Hopefully the adjustment allows him to leave his eyes alone and hopefully that “popping out” continues! I can’t believe we have to wait a month before we know if this is working! (I knew this all along, but still, now it seems like forever away) Hopefully things like an upcoming trip to Underwater World and planning his first birthday will keep us distracted until then!


Breakfast at Perkins

So on Sunday, Mason finally got to sit in a big boy chair at a restaurant instead of in his car seat.

It wasn’t that we didn’t think he was ready before, we just eat IN restaurants very very rarely (takeout is our friend!).  The last time I was in a restaurant with Mason, it was 2 months ago when he fell asleep right before we got to Red Robin.

Anyway, as babies tend to do, he spent his entire time throwing everything he could on the floor. Cereal? Sippy cup? Napkins? BOOM onto the floor they went.  He was also very interested in another family that hat had a young kid and a baby. He stared at them for a long time. It was pretty cute!

Being that it was his first time out of the house with the helmet, I was a bit nervous. While I plan on being all “let me educate you about this” when people make remarks, it was still too new and, I don’t know, raw to me, and I was worried someone would make a rude remark and I’d either fly off the handle or burst into tears. I was so worried that I almost didn’t go out, which is not like me at ALL (I love public speaking, talking to strangers, etc) but in the end, I’m glad I did. No one said a word, other than “Aww, he’s so cute!” Imaginary crisis averted!

He had his first taste of pancakes (thanks Auntie Sarah!) and breakfast potatoes, which he ate way more of than I thought he would. But mostly? He threw things on the ground.

I do have a question though – who the heck sits in these high chairs? The seat belt adjusted to it’s absolute smallest size still could have fit three Masons!! Total safety fail! One would think that it wouldn’t be too hard to make a seat belt that fit children of a range of sizes, not 4 year olds to obese adults (that would never fit in the high chair!) Is this pretty common in these wooden restaurant chairs or did they just have a reject one?

All in all, considering we were there for nearly two hours, he was pretty much a champ! It must have wore him out because he was asleep in the car before we got out of the parking lot!


The Helmet Day 1 & 2

So Friday afternoon, we made the drive back down to the clinic to get Mason’s helmet. As before, Mason slept the entire way, so that was quite nice!

At the helmet appointment, they tried the helmet on his head and then took it back to cut out places for his ears and air holes in the back (to help prevent it from being so hot), tried it on him a few more times, trimmed a few areas that seemed to be pressing too hard,  showed us how to put it on and take it off, and sent us on our way. I’m kind of shocked that we spent just 15 minutes with the specialist considering this is something that he has to wear all day for months and it will change the shape of his head! I don’t know what else I expected though – it’s not like it’s complicated… just new.

Saturday was the first day of helmet camp. He had to wear it for one hour, then have it off for an hour, back on for an hour, off for an hour, etc etc. I’ve heard that this is the worst day – not because of the helmet itself, but because of all the on and off. It’s staggered like that so his body can adjust to the pressure that wearing a helmet puts on his head and mostly for the heat – imagine wearing a thick winter hat ALL the time, even while you’re inside! So each hour we were wiping massive sweat off of his head and wiping out a soggy helmet. I’m thinking short sleeves will be in his future much sooner than April at this rate.

We lived by the timer all day on Saturday. On again off again. He seems to be adjusting well – he even took a two hour nap in it, which they said to not expect ANY sleeping of any kind until day 3 (can you imagine trying to sleep in a helmet?!) so I am hoping this is a good sign. Disrupted sleep seems to be the biggest side effect of these helmets.  I definitely have been dreading the idea of losing my super sleeper.

helmetsleep

Sunday was two hours on, one hour off and it was a nice break to have to take it on and off half as much! He napped in it again, played with Grandma, and was his usually happy laugh-y self.

Today will be his first day wearing it at daycare and the schedule for today is 4 hours on, 1 hour off, so I’ll be going home on my lunch break, taking his helmet off, going home and eating lunch, going back to the daycare and putting his helmet back on, and going back to work. Hopefully when I get there, I’ll hear that he’s having a good day and not dripping with sweat or that they didn’t try to take it off of him because he looked sad or something. Time will tell, I guess!! Wish us luck!

Five Fingers of Thanks Thursday

fft

1) I am thankful that Mason’s ear infections have finally cleared up. Today he was declared to once again have two nice healthy looking ears. Finally!

2) I am thankful that our problems range from ear aches to flat heads and not cancer and car accidents. It’s so easy to get caught up in the little stuff and not remember that compared to some, that’s all it is – little stuff.

3) I am thankful that my “hobby job” lets me pick and chose when I want to work and has put up with me even though I took 7 months maternity leave and currently only work 3 hours a pay period. Because those three hours? Are awesome.

4) I am thankful that my two favorite people at the daycare just became the full time teachers in Mason’s room. It will be really nice to have set people in there who know what they are doing and listen to my [few, simple] requests. It will also be helpful with #5.

5) I’m thankful we finally have a definitive start date for Mason’s helmet. We go pick it up on January 21st (a week from tomorrow). The sooner we begin, the sooner his head is fixed and the sooner we’re done. And? I just like having something set in stone for once. So barring snowstorm or mass sickness, January 21st is the big day.

This list could just keep going and going, but I’m out of fingers!

The Appointment

So if you’re not one of the 10 people who read my post the other day, last Wednesday we took Mason to our clinic chain’s headquarters a few hours away to see about getting him a helmet for his plagiocephaly aka mis-shapen head.

I was quite worried about the drive. I remembered it being 3 hours each way (I went there weekly a few years back for medical problems of my own) but apparently my memory fails me because it was 2 hours each way. Woohoo! Still, 2 hours in a car with a 9 month old, plus a two hour wait between appointments? Ugh!

But? My little man ROCKED it! Actually, he slept it! He slept all but 20 minutes of the drive there (which is A-MA-ZING considering he’d only woke up for the day an hour before we left!) During the break we warmed him up a bottle with the world’s slowest car bottle warmer and then proceeded to walk around the world’s smallest Target. And on the way home, he was asleep before we ever got out of the parking lot and woke up a few miles from home. I couldn’t have asked for a better ride!

So we met with the helmet specialist and they put him in a stocking hat (literally a stocking) so his head shape was better defined under his duck fluff and then they took a computerized xray of his head which enabled us to see more precise measurements of his head. The amazing part? The digital measurements were within .3 mm of our physical therapists “tape measure and calipers” measurements! So his head shape has a variance of 9.3 mm. In the specialists experience, insurance will only cover 12 mm+ (not the 10 like I’d read online) so that sucks. On the bright side, the helmet and all the follow up is about $1000 less than I had read, so that’s a plus.

After that appointment and our trip to Target, we settled back into the waiting room for our wait. Decided it was time for WeeMan to have some sweet potatoes and as soon as the spoon neared his mouth, they called us in! Just figures that the one time we’re early and expect a wait, we don’t get one!

The neurologist agreed with our assessment – yes, it’s not “medically required” according to insurance but with our family history of baldness and the fact that we don’t want to have a 16 year old who hates us because we could have done something and didn’t, we should do it. She also said he’s severely developmentally delayed since he’s not crawling yet, but we’re continuing to ignore that racket. What is with these people?

ANYWAY, once we get denied by our insurance, they will order his helmet based on the measurements from Wednesday and we’ll get it in about ten days. There isn’t anywhere around here that can make adjustments, so we’ll be making the trek back down there two weeks later and then monthly after that. I’m hoping to have this done and over with by late May, but we’ll see – it all depends on how much growing and changing his head does!

Is it bad that after I watched him hit his head on the wall, the humidifier, and the tv tray table several times yesterday that I thought “Well, it may be too late for really rapid change, but hey, at least the helmet will come at a good time for falling a million times learning to walk!” *staying positive*

So Not a Holiday Post…

So I realize that I said I was probably going to be filling the blog with holiday pictures all week long, but that’s not going to happen, at least not today.

Tomorrow we’re making the three hour drive to our clinic system’s “home base” and meeting with orthodists and neurologists and hopefully getting Mason fitted for a helmet.

For those who haven’t been following along, way back when Mason was 3 months old, he was diagnosed with torticollis (stiff neck muscle) and plagiocephaly (mis-shaped head beyond the normal “babies heads aren’t perfectly round”) and we went through 6 months of physical therapy. Physically forcing his head to the left 8 times a day (stretching the neck muscle), forcing him to sleep facing the left, always keeping him off the right side of his head (the flat side) etc etc etc. The torticollis has cleared up – he now has a great range of motion and turns his head to the right and left like a totally normal person, but we’ve seen no improvement in his head shape in the last 8 weeks.

A perfectly normal head has a zero mm difference in measurements. A “we really believe you should do a helmet RIGHT NOW” head has a 10 mm (or higher) difference. Helmets seem to do the most good (in the shortest amount of time) on babies 4-6 months old. Mason is 9 months old and his head has a 9 mm mis-shapen-ness (for anyone reading this who is familiar with plagiocephaly, I apologize for not knowing proper terminology yet LOL) He’s at the age where he’s NOT going to grow out of his head being funky shaped, but he’s also at the age where the helmet may not do as much good as it would have had we done it 3 months ago. But three months ago, we were still making progress with physical therapy, so we didn’t know. We didn’t know.

Part of me says that this seems so vain. Months of a baby in a helmet to correct something that is not hurting him, not ailing him in any way. But then there is the other part of me that comes out when people who hear that we’re considering this go “But his head looks fine!” It really doesn’t. You don’t see him from behind. You don’t see when his duck fluff is wet in the bathtub. You don’t feel the “edge” where the flat part meets the round part of his head. And he’s a boy. Down the road, he’s going to want to shave his head. He’s going to want short hair. What if the difference is big enough that his glasses don’t sit right? (because his ears don’t line up perfectly) What if he wants to play ball and his football or baseball helmet hurts to wear?

The original person I talked to on the phone after we got the referral from our pediatrician tried to tell me that they don’t do helmets for babies over 6 months. Considering there are just two companies that make baby helmets and they both say “Up to 18 months” I plan on fighting that line of thought if it’s brought up again. I would hate it we went all the way down there only to have them say “Oh, he’s too old, it’s too late!” because that’s not true – I’ve surrounded myself with positive stories of 10 and 11 month olds who have went from a 12 mm difference to a 3 mm difference in just a few months.  Of 18 month olds who have seen improvement. I really hope this isn’t an issue because we don’t really have many other places to chose from and all of them are even further away.

Anyway, think good thoughts for us tomorrow. This is by far the longest car ride he’s ever been on and we have nearly 2 hours between appointments with nothing to do, so it should be an interesting day, to say the least. It seems so wrong that I’m hoping to hear “Yes, this is medically necessary, we’ll get it ordered tomorrow!”  The way I look at it, the sooner we get the ball rolling, the sooner it will be over. A few months will fly by and at his age, he’ll never notice the difference. Who knows, it may even prevent a few cuts and bruises as he learns to walk. Right??? *trying to be positive*