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!

Bandages and Scars

So just a quick post as I realized I forgot to publish my post about removing his bandages.

Bandages Off!!

Monday night was one week from his surgery and per the discharge instructions I removed Benjamin's bandages. Let me just say this, those suckers are stuck on so tight. The glue is impossible to get off. I ended up using vaseline but that was after trying rubbing alcohol, baby shampoo, and olive oil (per online group recommendations). It's finally off and not sticky! 

Close up of the stitches.

The stitches don't look too too bad. It's about three inches long and runs along his forehead. They are dissolvable and go away in three to four weeks after surgery. It doesn't seem to phase him at all even as it heals. The stitches are right at the hair line (in fact the Neurosurgeon gave him his first haircut and you can see with the bandages off exactly where). 

Monday, I gave him a bath too just can't get his head wet yet so not too bad. And while the helmet annoys him it doesn't seem to have any affect on his stitches at all and he's not trying to touch his face or showing any other signs of irritation. Certainly by his teen years it will be hardly noticeable. Especially in the 90th percentile for height I'm sure no one will see it!

Insurance - on the edge of my seat!

Well, I've had a bit of a scare. In my support group several (and I mean more than fifteen) members have talked about how their child's surgeries were done and paid for by their insurance but then the insurance would not cover the cost of the child's helmet therapy!

 So on Saturday I received a letter in the mail from Blue Cross/Blue Shield and of course without reading it my heart sank. I dreaded what it would say. Fortunately, it explained that at the request of our neurosureon, Dr. Proctor they put in a request to make sure the entire surgery would be covered prior to the operation. This was something I foolishly never even considered checking but per the letter from BC/BS, I had nothing to worry about.

When I went to Hanger Clinic to meet Benjamin's new orthotist I stressed that I wanted to be sure our insurance would pay for treatment and the helmet. I understood that from the insurance perspective they felt this part was purely cosmetic. I was assured by both the neurosurgeon and orthotist that this is very much not and extremely needed. In the event he was denied by the insurance they would write letters on Benjamin's behalf to make sure it would be covered. A few hours after we got home on Thursday from Hanger Clinic, Brian called to say that he confirmed with BC/BS that we would be covered for the treatment and helmet. This was a relief... though I am still slightly nervous. Many in the group said that while theirs was covered it was only the first helmet and not the subsequent helmets. So now I wait but I'm prepared to fight. My husband and I decided that regardless of the expense we would do what we needed to give Benjamin the best in life and keep him healthy. So now we wait...