We've Graduated and We're Done!

SOOOO SOOO RELIEVED! On May 5th we saw Dr. Proctor at Boston Children's Hospital for a surprise check up since our Orthotist Brian was amazed by Benjamin's progress at his Midterm scan! So two weeks after seeing the orthotist we went in. Dr. Proctor do a quick check and some measurements and told us we were done with helmet therapy!!

Benjamin with Dr. Proctor, Neurosurgeon at Boston Children's Hospital

When talking with Dr. Proctor he did say we could if we wanted go for a second helmet but he didn't feel it would be necessary it would only aid in smoothing out some indentations but regardless those would eventually go away with time as he grows and ages. We were concerned that it may affect development if we ended too soon and he assured us everything is as it should so a new helmet would be strictly cosmetic. This was aligned with what the orthotist had said as well. My husband and I exchanged quick glances and agreed we were done! I was so happy and relieved for my boy. The helmet was off and off for good. We did talk about changes and risks of regression which with metopic is less than 5% especially since we caught it so early. But Benjamin would be constantly monitored until he hit 12 years of age. We would have a field trip up to Boston twice a year for appointments.

Benjamin with Orthotist Brian from Hanger Clinic

So this morning we went to our last ever Orthotist appointment at Hanger Clinic. Orthotist Brian took some measurements and was amazed that just in the three weeks since we last saw him (April 21st where we got the scan, May 5th was neurosurgeon, and today, May 12th) Benjamin's head continued to adjust more! It was even better news since from the time we saw him to Dr. Proctor I kept his helmet on religiously! We said good bye to Brian and he gave Benjamin a adorable little diploma for his baby book.

My happy little helmet graduate!

So he's not in the clearing yet but he's far from the swamp lands! Now we monitor, check development, meeting milestones, and keep an major look out of internal cranio pressure or vision which is common with Metopic Cranisynostosis babies! But we are so close to normal is beautiful!!

Call from the Neurosurgeon!!!!!

YES!! Received a call today (that of course I missed) from the Neurosurgeon's office. Looking to take some measurements and perhaps graduate from helmet therapy. I called back but it was already too late the secretary was home for the day. I will call tomorrow!

Fingers crossed!

Mid-Treatment Scan!! AWESOME News!

Okay, so first things first, I MUST apologize. I've received a few emails from people who found my blog either via Facebook or just a good ole fashion google search. I have not done a good job of updating it after every appointment and while we have consistently received good news, there really just wasn't much to report... until today!

I am so so so excited that today at the "Mid-Treatment Scan," Benjamin's head has adjusted a grand total of 9mm in all direction! His helmet is getting tighter but still very effective. So what does this all mean?! Well when I got the copy of the scan and side by side, I said outloud "boy it almost looks normal" and our orthotist said "NO, it IS normal!" SERIOUSLY the happiest words ever spoken to a crania parent!

Essentially (and it is a combined decision between the Neurosurgeon, Dr. Proctor, the Orthotist, Brian Heckathorn, and me and my husband) he will not need a second helmet! Once he outgrows this helmet we are done!!!

Just see for yourself the changes:

Its pretty incredible. His very first scan was on January 28th, just three days after the endoscopic surgery and this mid-treatment scan was today, April 21st (that's less than 3 months of helmet therapy).

So what happens next... well we're not to sure! We have an appointment with the neurosurgeon on July 1st but the orthotist told us not to be surprised if his office calls us after he receives the email for an earlier appointment. We go back to double check size and fit on May 12th with the orthotist, just a week prior to our trip to Florida.

But now, we wait to hear from Dr. Proctor with fingers crossed he agrees.

So to put things in perspective here are some photos I took along the way... keep in mind I took very little at birth because I didn't think anything was wrong...

Sleeping with his eyes wide open?!

So just a random post. I have been taking half days at work this week because I'm worried about going back full time and not being around for Benjamin as he adjusts to his helmet schedule. Today however when I finally had a chance to just sit (both he and his big brother were napping), I observed Benjamin sleeping with his eyes wide open. This wasn't just for a few seconds or a couple of minutes either. It lasted about ten whole minutes. I quickly took a video just in case it's something. In addition to this he also does a weird lip quiver when he's awake (and it's not related to crying or being upset) and his eyes when awake do a very rapid back and forth flutter. Unfortunately, I am unable to film both of those because it's hard to see on a cell phone camera. So I posted it on the Facebook support group I'm a member of to see is it Benjamin or Cranio/Surgery related and all but one said their babies don't do this. So tomorrow after the orthotist I think I will call the Neurosurgeon just to be on the safe side... I hope I'm just being a paranoid mom!!

Sound asleep with his eyes wide open!

Thirteen Days Post-Op and Six Days of Helmet Therapy

So we are just thirteen days past his surgery and six days into helmet therapy! Benjamin amazes me more and more each day. The helmet is very clearly awkward and heavy. He had very strong neck control prior and was rolling over but now naturally with an extra two pounds he finds it difficult. I also noticed when it's off he looks around nonstop. It actually makes it very difficult to nurse him as he is just busy moving his head in every direction. He also had a schedule but yesterday and today it kind of went out the window when he fell asleep in it. I just let him gone until he fussed about twelve hours total! He is to work up to 23 hours per day with only one hour off. I am really looking forward to meeting with Brian his Orthotist to see what he thinks of the development already and an anticipated timeframe. We were supposed to have his appointment tomorrow but with the big blizzard coming it's been moved to Wednesday. Ceste le vie!

The difference in just a short time just astounds me! (photos taken yesterday) The photos on the left side are pre-op and the photos on the right are after surgery and helmet therapy.

"Painting the roses red we're painting the roses red not white or green or ..." - Painting the Helmet (Part I)

So I've mentioned a few times I'm a member of a few Cranio Support groups and those with helmets are often colored or decorated. I was very excited as some of them are absolutely amazing. So when I went to meet the orthotist I immediately asked about what kind of helmet I can get for Benjamin, HAHAHA. These helmets are painted and stickers! Anyone who knows me can attest I am most definitely a left brain thinker, no creative side to me at all! Sure I have lots of ideas but when pen comes to paper I am at a loss.

So I started doing some research (big surprise right?!) and found it doesn't seem too hard. THEN I came across this women: Lazardo Art and the art of baby helmet, can I just say OMG. I am obsessed with the aviator helmets. So I contacted for more information and it's just slightly more than I wanted to spend and I'm very worried about the time frame even though I'm assured by many that her turn around is 48 hours. So I found a website, Bling Your Band, that makes stickers for baby helmets. Which also has pretty detailed instructions on how to paint and decorate yourself. So between Bling Your Band's directions and this women's awesome youtube video, I began my adventure into the world of art.

So here is what I started with:

Ingredients

• Craniosynostosis Helmet 
• *Unlike the DOC Bands, our helmet is a clear hard plastic
• 2 - 2 oz. container of Acryllic Paint (Sailaway Blue)
• 1 - 8 oz. container of Mod Podge
• 2 sponge brushes
• Papertowels
• Water
• Hair dryer
• Nailpolish Remover
• Painters Tape

To start, I first used the painters tape to outline the helmet. This was pretty difficult since the helmet is curved and a hard plastic. If I am going to do this again, I also recommend taping the entire inside to prevent paint from dripping into the holes and down the helmet.

Many recommendations say to sand or prime the helmet first. I did neither since the helmet was clear and the color was going to be close enough.

I painted the entire helmet and gave it three coats. This really only took one, two ounce bottle but because I was heavy handed I ended up pouring two bottles instead. You definitely don't need more than this.

I allowed the helmet to dry over night. In the morning it was still tacky and wet in some spots so I used a hair dryer on cold and blew it dry. If I knew how quickly this would have worked I certainly would have done this last night to finish up.

Once dry, I applied three coats of mod podge. I had never used this stuff before but was thankful of the youtube video or I would have been horribly shocked it came out white!
Again I blew dry this until dry.

Then because I failed to cover the inside I took some rubbing alcohol and gave a quick wipe on the padding inside and then using the nail polish remover (acetone) wiped up all the paint that had dripped down the helmet. It took off nearly almost all of it, which was excellent.

Then it had to immediately go on Benjamin's head. He wore it for three hours on today and one hour off. When I took it off, he had gotten pretty sweaty in it and some of the remaining paint did get in his hair. With a damp paper towel it came right off, so no worries.

Hat of Tears - AKA Baby Helmet

Well, yesterday was an eventful day. We went to our appointment to meet with the orthotist for Benjamin to receive his newest accessory and our training on how to put it on and off (there is more to it than you'd think).

A very angry Benjamin with his new helmet!

A lot of the time at Hanger Clinic was the three of us (myself, husband, and Benjamin) just waiting around. They received the helmet and would come in every ten minutes or so to take a few measurements here and there. Finally they brought the heavy plastic thing out. We learned a how to place it on Benjamin's head and how to take it off, signs to look for if we did it incorrectly. We learned how to clean it, where he can and can't wear it and his first two week schedule. It all happened very quick.

First pacifier which seemed to soothe him on our way home...

The helmet is clear plastic with holes drilled in the top for air circulation and to minimize heat rash (and getting smelly). All the areas of pressure have heavy padding on it (sides near his eyes and forehead on the metopic sutra). The helmet itself weights 1.5 pounds all together. That's a ton considering Benjamin is only 13 pounds. We were given the okay to paint and sticker it as much as we want and the orthotist Brian was very familiar with "Bling Your Band", the company we ordered the stickers from.

Once a sleep he's wonderful in it, but getting there is the challenge.

For the first two weeks, Benjamin is on a schedule. The purpose of this on and off is two fold. One, to teach US how to put it on and off properly and to watch for irritation points and two for Benjamin to get used to having it on. The orthotist said he will be extremely upset this week as he adjusts but like anything else that's new and scary he'll navigate through it better than we can as adults. Many babies find this as their own soothers versus a blanket, stuffed animal, or pacifier.

The red is just because of babies naturally sensitive skin. After day one this has stopped happening already.
You can see though where the pressure is to help mold his skull and brain.

For day one (yesterday), Benjamin had to wear it for one hour on and three hours off. Today he is wearing it for two hours on and two hours off. Tomorrow will be three hours on and one hour off. The goal is to work up to 23 hours total every day. One hour break to clean the helmet with baby soap and unscented baby powder and to allow Benjamin to do tummy time. For this week though, if Benjamin is asleep during his time in the helmet, we're not to wake him to put it on and vice versa if he's asleep we're not to wake him to take it off. The goal is to keep him happy while making him adapt.

All in all, it's been painful to listen to him cry but he is adjusting rapidly. I am relieved that we are only looking at 3 to 4 months though! He is already so much stronger than I am!