1 Month!

Well, the 1 month helmet anniversary came and went. Now that the babies are awake and active more things are a little nutty here so I forgot I took these pictures. I am so, so, so happy with Brandon's progress. We even "graduated" to bi-weekly measurements/adjustments instead of going weekly! The stink is just horrible and he's losing his hair on 1 side of his head, even though we were told her wouldn't- those are the only 2 downsides. Oh and yes, he really is that sweaty every time I take the helmet off. Poor baby. Reminder; you can click any picture to make it larger!

3 weeks down!

Well I guess it's pretty common but my poor baby has his 1st "pressure spot" :( aka his helmet is rubbing his tiny head raw.

The helmet works by applying pressure to the misshapen areas and leaving room in others. It's such a delicate balance- not enough pressure; the helmet won't do much. Too much pressure; pain and sores. Pressure spots turn into pressure sores (little open wounds with redness) and that it was you do NOT want to happen. If his turned into a sore he would need to keep off the helmet until fully healed- losing crucial days right now during these 1st important weeks.

We had another adjustment today- it was supposed to be our last weekly visit (then we'd switch to every 3 or so weeks) but because of B's little spot we will be making the trip again next week. ugh. The adjustments visits are just loads and loads of measurements, helmet on/helmet off, marking for adjustments, sitting veeeery still. B always ends up crying and I always feel like crap. They marked his pressure spot with this crayon thingy and then put his helmet back on, so they could mark the exact spot to sand down. He seems to be doing okay with it now but I have orders to keep a strict eye on it.

Major Score!

Since having twins I've purchased many bottle of alcohol... mostly wine ;) Don't judge.

This alcohol- obviously a different kind, is by far, worth it's weight in gold!
The only way to clean B's helmet is with rubbing alcohol. Rubbing alcohol is not such a great smell it's self but it dries out the moisture, killing some of the bacteria and getting rid of about 1% of the stink. After only 2 weeks the thing smells like a foot. Okay, more like a hockey bag- I've been told. It's no offense to B, I mean he has to wear the thing 23/7 and he's a sweaty guy. B's PT plays hockey and mentioned that his wife sprays his equipment with a mint scented rubbing alcohol and it seemed to help a little. I found it at CVS last night. It is a major score. Now instead of a foot... the helmet smells like a foot dipped in mouthwash. Laugh if you will but it's a major improvement, yay!!!

I'll be good for Santa

Tomorrow will be 2 weeks! The adjustment has really been okay- thanks mostly to Brandon's sweet little temperament. My only 2 complaints would be the smell (like I mentioned) and that it digs into my arm when I feed him.

We meet with the Neurosurgeon again on Oct 13th, which will be 6 weeks into Helmet wear. Ultimately it will be his call on when B will "graduate" from his helmet. The orthotist said he's doing great, based on his progress so far. I'm a numbers and obsessive planning type of girl so it drives me nuts... okay absolutely bat sh!t crazy... that there isn't a clear time frame of when it will come off. The othotist said he would be able to give me a better estimate in a few weeks. Last week he said if he had to guess, He'd guess 4-6 months, coming off as early as the end of December. Ahhhh YAY! Ok, I'm not going to get my hopes up juuuust in case but I think everyone can tell what my Christmas wish is this year ;) It's all basically up to his PT and stretching progress now. If he graduates from the helmet but continues to remain in his tilt/torticollis position his head will return back to the trapezoid shape. Luckily development in on our side. B should be sitting up soon and eventually crawling- all of this activity keeps him off his flat spot for prolonged periods.

Oh and for those of you who missed it... B won a contest! The company that sells his helmet decals has a cutest baby contest every month and our sweet little Brandon is Mr. September, thanks to all the votes of his wonderful friends and family :)

1 week down. 5 months, 3 weeks to go

Well we survived one week! So far Brandon... and the helmet are exceeding my expectations! Jody and I were pretty shocked after even a few days how quickly his head is taking shape. Since he started at only 5 months, his head is extremely "mold-able". Now we just have to keep up the helmet use until his little soft spots close/harden.

B usually wakes up around 6. I take his helmet off, clean the inside with rubbing alcohol and leave it in front of a fan. I stick him in the tub and then let him "dry" for an hour break- then it's back to helmet time.

I did have a few major concerns and here are the updates so far.
Sleep- The helmet does not seem to affect his sleep at all, shockingly! I spent the entire 1st night waking up to stare at him on the video monitor and he was sleeping peacefully.
Rash/sores- The helmet does rub on his cheek causing some redness but I'll have it looked at during his 1 week check up today.
Smell- Oh good Lord. This thing stinks already. Despite cleaning it and B religiously- the helmet reeks like vinegar.
People's reactions- People tell me his helmet is very cute. I haven't noticed people staring more than usual- which tended to be a lot anyways when I'm out with 3 adorable kids in 1 cart.

Overall, I am very happy with the helmet so far and am glad we made the decision we did :)

Mixed Bag

Today I'd consider a mixed bag. When B woke up I put the helmet on and he did not cry 1 tear. I was ECSTATIC! Then the heat started. It was so ridiculously humid here today. Brandon (wearing only his diaper pretty much all day) had sweat dripping from the "sideburns" of his helmet, poor little baby. Today's schedule was on 4 hours, off 1 hour. I let him take his morning nap without it on and I even snapped a pic. Probably the last time he'll sleep without a helmet on for at least 6 months, still so strange to imagine. For his second nap I had him wear the helmet. Once again, the issue was not being able to lay on his comfort side... aka his torticollis side. He tossed and turned, waking up 3x during a 1 hour nap crying. Every 4 hours when the helmet came off I'd let him sit in a cool bath. I put the helmet on around 3:30 and we went out to dinner around 6. That's when it caught my eye that his ear was folded completely in half and he never made a peep. I, of course, felt like total crap for not seeing it sooner. It is SOOO hard to get the helmet on. I know after a few weeks it will be second nature- that will be much better. Tonight he has to wear it all night. I'm a nervous wreck. His orthotist mentioned that if you "give in" and take it off when they fuss you're only making it harder for them to adjust to the 23 hr routine. I have a fully stocked DVR just in case my little boy needs so middle of the night snuggle time. PLEASE let him sleep comfortably and PLEASE let this weather cool down.

It's on

It's on. It's official. Yesterday we picked up B's helmet.

Somewhere in my silly mind I thought we'd walk in- they'd slip in on like a little hat and go merrily on our way. HAH! The helmet is custom made to the child's head but needs several "trimmings" during a fitting to make sure it fits 100% perfect. They send them a little snug so that there is room for adjustments. I was unaware. So when they put (ok, so squeeeezed) this helmet onto B and he couldn't even open his eyes and his ears were folded my heart fell into my gut. It looked so much worse than I imagined and he looked like he was in pain. Then I found out it needed trimming. Phew. They marked it for adjustments, pulled it off (which I was 99% sure at the time was going to break his neck, I swear) and trimmed it. Came back and tried it... still needed additional trimming. This happened SEVEN times. B screamed every time the helmet went on and every time the helmet came off. Arching his back and thrashing his arms. It must be tricky to trim because it needs to be tight enough to apply pressure to the misshapen parts but not rub too hard. Also, due to B's severe torticollis- his helmet was rubbing his neck/shoulder so we needed more adjustments than usual. In between trimmings I rocked him, he held the strap of my shirt with a death grip and did that gasping-for-breath-from-crying-too-hard baby cry. I felt like as soon as he got calm they would come back in to jam on the helmet. You know that feeling where your tears are building up and they're super hot but you promised you wouldn't cry, so you open your eyes wide, give some quick blinks- maybe blot the corners with your fingers? Uh huh. The othotist commented that I was "doing very well, it can be pretty upsetting to watch the baby cry like this". Yep, doing well... on the outside ;) Then I got a lesson on how to put it on. As I had mentioned, I was appalled at how they kind of had to cram it on his head. Ummm it's pretty much your only choice. I hear it will get broken in and easier to put on but whoa is it hard to do. He just looked at me and screamed. I just kept saying, "I'm sorry, I'm sorry, I'm sorry". After an hour and all the adjustments we opted to wear it home and he slept the whole way.

People always say how I have my hands full. It's true but some days I don't know how I'd make it without Justin. When we walked in the door he said, "Mama! Look!!! Look at Brandon's blue hat! He wants to play hockey! Cool!" Love him. What do people say? "From the mouths of babes"?

Getting my craft on always makes me feel better so I applied his sticker kit right away.

I'm so proud of him. He seemed pretty unaffected. Just a little frustrated that he can't get to his "go-to" flat side as easily. Like I said, I'm proud, but not surprised. Brandon is just about the sweetest baby on the planet. He's always looking at me with the biggest grin and those huge brown eyes. He melts my heart.



For the 1st day, B wears the helmet on 1 hour, off 1 hour. Then the 2nd day; on 2 hours, off 1 hour. By the 5th day we're at 23 hours of helmet. The helmet has to be cleaned with rubbing alcohol every time it comes off. I am sweating with no helmet on so I can't imagine how hot he must be after 2 hours of wear. Well... you can judge for yourself...