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...

"Before"

(Click Collage to Enlarge)


And because I won't make it through this without a sense of humor...

Tomorrow is "H day"

I haven't forgotten the blog. I just literally have had nothing to update. PT is still going great and Brandon is making awesome progress with his neck strength and range of motion.

After a helmet casting- the cast is sent out to OrthoAmerica, where they construct the helmets. We got the call Monday evening that B's helmet is ready. He gets it on Thursday afternoon, aka tomorrow. That means only 24 more hours of being a Debbie Downer about it. I plan on keeping my promise of optimism once it's on and to just enjoy the progress. It's not like I am all the sudden okay with the idea of the helmet- it had just kind of gotten pushed aside in my mind with taking care of 2 teething infants and a wacky toddler on 3 or 4 hours of sleep a night. Now that it's tomorrow I can't get it out of my head and I feel so, so sad again for little B. He has turned into literally the sweetest, most lovable baby boy. Justin will be throwing a tantrum about something and Natalie will be screaming for a bottle... Brandon- he'll be laying on his little blankie, playing with his hands coo'ing. My mom says he'll adjust to the helmet better than I will and she's right, haha. Lucky he has his dad's laid back, flexible personality.

B's sticker kit for his helmet came today and it's adorable. I got it from "Bling your Band" online. The pictures of the little ones on the website are SOO cute- these babies are rocking their helmets. I've probably been on their fb page about 100x to try to convince myself that the helmet is cute and the babies look happy.

Since B is only 5 months old- which is actually the optimal age to begin wearing a "cranial orthotic". We will start him with a wean on schedule, adding a few hours daily- working up to the 23 hours a day recommendation. We will need weekly visits for adjustments for weeks 1-3 and then hopefully not again until week 6. Most babies who start their helmets between 4-6 months have them off in 6-8mths.

Helmet Casting

The 1st step in the helmet process is to make a casting of the baby's head. It really is just that-a cast. The cast is then used to make the specially fitted helmet. We headed back to Children's hospital at 1:00 today to get the casting. B's physical therapist joined us for the appointment to help me ask any questions I may have.

Here we are in the waiting room
They sat B in just his diaper in a little bumbo. He was looking around being all cute & sweet as usual... then the "fun" started. They put him in a giant cape/bib and a little face mask kinda hood. He went from happy to pi$$ed in 10 seconds and cried the rest of the appointment. It was pretty heartbreaking. It only took about 15 minutes to lay the plaster strips but it seemed to take forever. It was so messy and I had to keep wiping it from his little eyes/mouth. He was a real trooper.

As soon as the casting came off and he was in my arms he was happy again. He got about 8,000 kisses and then slept the whole way home. Oh and we selected blue for his helmet color.

The (Loooong) Back story

The beginning

I first noticed his head shape just before his 1 month check-up. His head had a flat spot, which is pretty common but his was a really sharp diagonal flat spot. His Pediatrician assured me it would round out on its own as he got a little older. At about 6 weeks I really started to notice something “off” about his sweet face. It almost seemed like it drooped to one side and he was always looking to that side.

The night before his 2 month check-up, Jody made me swear not to let the Dr’s dismiss his “flat spot”. He could see the asymmetry in his face and was concerned too.That night I turned to my good friend google- because that’s the smartest thing to do when you’re worried, right? Haha. I read a lot about head and necks. I even found an assessment, with a picture of a head that looked EXACTLY like B’s head.In a World of “but-I-read-it-on-the-internet “diagnosing mothers, I didn’t want to sound like a crazy so I just brought it up casually at the appointment. The NP called in a Dr to have a second look at B. She told me it looked like B had torticollis, or a shortened tilted neck muscle. When a child has severe torticollis they develop may plaigocephaly, or a misshapen head which can lead to facial asymmetry. She told me it is pretty common with multiples, especially with a head down “baby A” (Brandon). Seeing as how I’m 5’3” and the twins weighed almost 18lbs, I could see him getting a little squished. B would need to start physical therapy ASAP. He would also need a series of skull x-rays done. They set B up with a referral for a pediatric PT, with an appointment for the next day. The PT wanted to see him weekly for the next 6-8 months, for 30 minute sessions and it was a 20/25 minute drive each way. Oh and our insurance would only cover 10 sessions. Thinking about all of this with a 2 ½ year old at home, 8 wks post partum with twins was a teeny bit stressful. I kept telling everyone I just hoped he wouldn’t need a helmet. “Please don’t let him need a helmet.” B was such a great sleeper, I didn’t want him up all night uncomfortable, sweating, losing hair, getting sores and to be honest (and ridiculous) I couldn’t bear to cover his sweet, soft hair. I didn’t want people to stare at him.

Tackling the Tort

B’s physical therapist was AWESOME. Her name is Cindy. She showed me stretches and positions to put B in to help his neck. I was given daily “homework”; to avoid bouncers, mats, swings etc… as much as possible, to move all of his toys/stimuli to the right side of him and to stretch his neck out 8-10 times a day. During his 2^nd session he cried so hard we had to stop therapy after only 10 minutes. After setting the other 2 kids up with a sitter, (Thank God for Grandma Mary!) and then rushing to the appointment just to turn around in 10 mins, I wanted to cry right along with him. That is when Cindy mentioned E.I.S- something I had never heard of. EIS is “Early Intervention Services” and it’s through the county. A child that is in need of therapy (regardless of income level) can qualify for in-home treatment, free of charge. It is a process though. We continued seeing Cindy as we waited for EIS. After the initial call, we waited 2 weeks for a meeting, then another week for an in-home assessment of Brandon’s neck and then 4 weeks to be matched with a therapist. Over those weeks he got much stronger but the torticollis was stubborn. As soon as he looked to the right his neck would snap back to the left like a rubber band.

Also, while we were in EIS limbo we had the x-rays done. A few days later I got a message from the pediatrician, “Mrs. White, we’ve reviewed Brandon’s x-rays and we would like you to make and appt to meet with a neurosurgeon at Children’s hospital. Please give us a call back”. I called Jody crying, freaking out nervous. Neurosurgeon?!?! After a stressful day of phone-tag the NP at the office assured me it was standard procedure with the x-rays, that a specialist needed to review them and discuss them, I found out they were just looking for gaps/cracks in his skull or signs that his skull was closing pre-maturely in the “trapezoid shape”, any of those would most likely lead to surgery.

Back in PT world,we were matched with a really great therapist. B’s in home sessions were going great. We started working on core & balance exercises since he would face additional challenges when learning to roll & crawl with such a severe “lean”. By 4 ½ months he was rolling both ways like a tiny champ and showing lots of strength during tummy time. His face was looking so much more even but his head shapeunfortunately just wasn’t showing much change. Every time we met a new therapist or Dr, I’d ask, “you don’t think he’ll need one of those helmets, do you?”

Helmet Stickers

Jody and I went to Children’s hospital to meet with the neurosurgeon. The good news; the xrays looked great, no signs of any major problems. The bad news; he would classify B’s plagiocephaly as severe. My stomach dropped when he started to discuss “pressure bands” (a helmet is a helmet buddy, let’s not tiptoe). The helmet is worn 23 hours a day. He said he could not tell us one way or another, what to do. As part of the plagiocephaly, B’s forehead was beginning to protrude slightly on 1 side. He said that aggressive PT and repositioning could fix B’s head but the helmet was an option, an expensive option, one that was considered mainly cosmetic, so it is hard to get approved by insurance. That’s why he doesn’t like to “force” it on parents he said. I had done my research and I know that left untreated, the plagiocephaly/facial asymmetry could lead to; vision, sinus and hearing problems, speech issues or TMJ. There were also simple things like glasses not fitting right, having an unsafe “gap” between the head and sports helmets. The Dr recommended we go home and talk about it. The thing about the helmet is that it’s time sensitive. The sooner a baby gets it on, the more effective and quickly it will work. 4-6 months being the optimal age. We were both pretty frustrated with the dr’s wishy-washy opinion. I cried a lot. It was a cycle of crying. I would kiss B’s head and cry. Then I would think of all the really sick kids at that hospital we saw and feel guilty for being so overdramatic about a helmet- then I’d cry. I’d think about B’s 1^st trip to Disney and how in all the pictures he would have a helmet on and I’d cry. All the compliments he gets on his hair… and now no-one would even be able to see it… and cry. I hate to admit it but I have probably stared at kids in helmets and now people would do the same to me. Karma?... then I’d cry.

After asking advice from all my friends and B’s PT (who I trust and respect the opinion of) I decided to proceed with the helmet process. I just couldn’t take the “what-if” that his head could be fixed by PT and time. PT is only here for 45mins a week, the rest of the stretching/positioning/strengthening falls on my shoulders and I’m not a risk taker. I wanted to look back and say we did everything we could.

Univera will cover cranial orthotics at 100% if they are deemed medically necessary. If not, the cost would be somewhere around $3000 out of pocket. I spoke with the neurosurgeon’s office and they sent over B’s x-rays and evaluation to Univera right away. The next day I had to take B to the orthopedics office to have photos and dozens of head measurements done. He was not a fan. His hair is so awesome and fluffy we had to wet the poor baby down to get the pictures. Then we just had to wait.

That night I went online and looked for helmet stickers to try to cheer myself up. They actually have some pretty adorable stuff out there. I promised myself (and B) that as soon as the helmet was on that I would put on a happy smile and face it with a positive attitude. No baby needs a whiney crying mom.

Here goes nothing…

Today I got the call that Brandon does in fact, fall into the measurements for severe plagiocephaly and the helmet would be considered medically necessary by our insurance. They want him at the hospital tomorrow afternoon for a head casting. His helmet will be ready in 8-10 days.

I have a dozen emotions. I’m excited things are moving along so quickly/smoothly. I’m happy he has a good outlook for his head. I’m relieved we don’t have to scrape together $3,000. If I’m being 100% honest I’m also nervous, anxious and sad. It’s a reality now. That’s why I decided to share his little helmet journey. Although I hear it’s common, I personally have never seen a baby go through it and it’s been really emotional for me. It’s also to document change. The Dr said I may not notice a change because I’m staring at him all day ever day. I’ll post weekly progress pictures and updates. He could be in the helmet 8 weeks… it could be 8 months. Fingers crossed it works quick but I know in the grand scheme of life even 8 months is gone in the blink of an eye.