Wordless Wednesday

Adjusting...

I called STAR early yesterday morning hoping to get an adjustment appointment.  They had a 2:30!  We got dressed, went to lunch & started the 2 hr drive to Dallas.  We put Cash's helmet back on him 2 hrs before his appointment so Mr. Dwain could see the red marks.  

In the car I mentioned to Grammy that I was worried the mark wouldn't be there.  (Like when you are sick and go to the doctor and instantly feel better.) 

Mr. Dwain was running behind, so Ms. Libbi started with Cash.  She used a little tool to measure between the helmet and Cash's noggin.  Next, she took the helmet off to see the spot...it was still there...but not as dark.  Of course it wasn't. :\  She said she could feel a small bump on the inside of the helmet in that area.  She took the helmet and made the adjustment and put it back on his head for a few minutes to see if it helped.  

Ms. Libbi making adjustments

My little fella was so happy after Ms. Libbi made her adjustments

Cash was so excited when Mr. Dwain came in to see him.  Mr. D also checked and measured all the spots between the helmet & the noggin.  He took the helmet off and checked the red spots on his head and made marks on the helmet to know where to shave a little out.  (I am not sure why I didn't take any pictures)  He used a calliper to measure Cash's head.  Since Cash got his helmet last Thursday he has had 3/4 of a millimeter growth!!  It is amazing to me how fast he is growing!  Mr. D said everything looked great and to come back in 2 weeks.

When we were leaving Cash met a new friend.  It was so sweet to see them interact. Lil' Miss H kept grabbing at Cashs helmet.  So funny it was 28 degrees outside and they both are sockless. These helmets sure keep them warm. 

Cash did great wearing his helmet the rest of the day.  I am just so amazed how unfazed he is by it. 

We stopped at SAMS club on the way home.  The only way we can clean the inside of his helmet is with rubbing alcohol. We picked up a few bottles. 

My happy guy with Grammy.  Our checker asked about his stickers and told us her son had also worn a helmet. We had another person ask about his Razorback.  We got a lot more smiles and not so many stares.  We had a much better experience out and about. Maybe it was just my attitude was better. ;) 

Tuesday morning I put the helmet back on as soon as he woke.  Here he is relaxing with momma. Ready for his morning nap. 

He slept in his bed for about 15 min.  The last few days he has started rolling over, so we have stopped swaddling. Agh!  The little guy has only been able to sleep when swaddled since birth. This is going to be a tough transition with the helmet and no swaddling.  I guess we will take it one day at a time.  We tried sleeping in the helmet Tuesday night, and it didn't work out great. We will try again tonight. 

I love this toothless (if you look closely, you can see a little tooth) grin!

72 hours

The first few days of helmet wearing have been pretty good. Cash acts like he doesn't even know it is on his head. Like it has always been there. I am so glad about that.

Saturday we went to our local baby boutique to have some custom stickers made for his helmet. Early last week I went in and had some custom shirts made for him. 

Stylin! 

As you can see Cash is in short sleeves and no socks...in January. (my mom freaked when she saw this picture) It was so warm on Saturday and he gets so hot with the helmet on his head. 

We have already made a list of other stickers we need to add. My favorite is the $ sign. :0) 

I can not believe he is 5 months old already!  

Our first trip to Wal-Mart was interesting. Lots of stares, a few smiles and no one spoke to him. :(  Usually when we are out people always stop and talk to Cash but no one said a thing. If you see a baby with a helmet say hi! Comment on the decorations. It will help ease the anxiety of the parents. ;) 

We took Cash's helmet off when we got home. (We were on the 2 on 1 off schedule) We noticed he had as very dark red, almost purple spot his head. 

Red marks are common but if they don't go away within an hour we are supposed to leave the helmet off and call to schedule an adjustment. Of course this happens on a Saturday.  It took a little over 2 hours to go away.  Sunday Cash didn't wear his helmet due to the red mark.  Monday morning I will call STAR and see if we can get that spot fixed. 

Equipped to be Fixed

This morning we all piled in the suburban and made the 2 hr trip to Dallas to pick up Cash's helmet. 

Mr. Dwain came right in and got to work. He showed us the helmet and the model of what we hope Cashs head will look like when treatment is finished. Next, he demonstrated how the helmet opens and closes and the correct way to put it on and take it off.  He explained the areas that will "hold" the parts of his skull we don't want to grow and the areas that have space to allow growth. Here is a picture of the diagram from our exam room that may help you visualize what I mean. 

The arrows show the area with room to grow to help round out the head. 

Before he put the helmet on Cashs head Mr. Dwain let him touch it and play with it. 

Mr. Dwain explained to Cash that he was going to place it on his head and that it will help his head grow the right way.  

After Mr. D got the helmet on he checked the fit around his ears and eyes.  He made some marks in the areas that needed to be trimmed.

The outside of the helmet is a hard plastic while the inside is a stryofoam. When he took the helmet off there were some red spots on Cashs head showing Mr. D the areas that needed to be shaved away. Mr. D made the changes and it was time for us to practice putting it on and taking it off. Tyler went first, then I did and last Grammy. 

It's awkward to put on, but even more so to take off.  It's going to take some practice.  Mr. D held Cash for a long time while we talked about proper use and care. Cash was so comfortable he fell asleep in his arms. 

The little guy was tuckered out but he never seemed to mind the helmet.

We were given a schedule to break him into wearing it full time.

Day 1: 1 hr on 1 hr off  no sleeping

Day 2: 2 hrs on 1 hr off no sleeping

Day 3: 4 hrs on 1 hr off naps only

Day 4: 8 hrs on 1 hr off naps and bed

Day 5: 23 hrs on 1 hr off for bath 

Sweating is a big deal while wearing the helmet. The area that helps cool him is now covered all the time. Mr. D gave us some suggestions to help keep Cash cool such as leaving his socks off and wearing short sleeves. I am little worried about this because Cash is already a sweaty fella. We could us some prayers for his comfort. 

We go back next Friday for our first adjustment. 

I will leave you with a few extra pictures. 

*please pardon any typos...I wrote this on my phone driving home. Thanks!! ;0)

Head Scan

Today was Cash's appointment at STAR Cranial in Dallas.  This visit was to scan his head, get measurements and order a helmet. 

We were taken into the exam room as soon as we arrived and our orthotist, Mr. Dwain, came in and got started.  First thing is he put another cute stocking cap on Cash and took pictures from all sides.  These pictures will serve as a reference through out Cash's treatment.  Mr. Dwain then started talking about the measurement process and getting a model to send off to the helmet factory.  Models can be made either physical or digital.  A physical model is made using a plaster cast.  The casting process takes about 15-30 min.  (Edit to add, Cash did not have a casting mold made. We used the STARscanner.)

Photo Credit www.whatsupwiththebuells.blogspot.com

A digital model is made using a digital scanner, such as the STARscanner.  (there is a video on their website that shows how quick and easy the scan is)

 

Cash laid down inside the scanner & in less than 2 seconds
 & had a perfect 3D picture of his head

 

The STARscanner captures detailed head shape info in a 3D scan in 1.5 seconds.  Cash had his scan today & he did awesome!

 

Mr. Dwain then pulled the info from the scan up on his computer and started explaining the numbers to me. 

Mr. Dwain

Diagram of Cash's head

He printed a diagram of Cash's head for us that shows flattening on the right side.  He said that the asymmetry is 9.9 mm, had significant posterior towering (his head is growing up rather than out) and he has a brachycephaly [brak-ee-sef-uh-lee] shaped head. 

 

photo credit mimospillow

After the scan I filled out paperwork and ordered Cash's STARband.  We were able to choose what color or pattern we wanted on the helmet.  We decided on just a white helmet so we can add stickers to decorate it.

We go back next week to pick up the helmet.  Yay!

I put Cash on the floor to play while I filled out paperwork.  He was so chatty!  I got a little video.  (of course he stops talking when the camera comes out!!)

After our appointment we stopped at Chick-Fil-A for some lunch and then a little shopping at Super Target.  Yay for shopping other than Wal-Mart!!  ;0) 

 

 

Appointment with Craniofacial

Monday we got a call from the Plastics & Craniofacial department at Children's to schedule our appointment.  They said they could see us the next day or Feb. 4th.  I took the appointment Tuesday, not wanting to prolong treatment. 

Tuesday Cashman and I loaded up and made the almost 2 hour trip to Dallas.  On the way we stopped and picked up Tyler.

As soon as we arrived they brought us back and took a bunch of 2D photos of Cash.  They took from every angle and he did a great job!  We were then moved to the exam room.  The nurse came in and said that they wanted to get some 3D images of Cash.  We went to a super hi-tech camera room so Ms. Amy could take his picture again. 

Super Hi-Tech Camera Room

Cash had to wear a little stocking cap to make sure they got a good image with no obstructions from hair.  (like he has any!)

 

 

 

Ms. Amy set Cash up on a tall stool and strapped him in.  I helped hold him steady and she snapped away at the images. 

 

We were moved back to the exam room and not 5 minutes later the doc was in to see us.  She asked a bunch of questions and examined Cash's little head.  She also thought that Cash's flatness began in utero.  She said that Cash's flattening is moderate to severe and recommended helmet therapy.  We were referred to STAR Cranial Center of Excellence.  Their website is super informative and really helped Tyler & I understand more about the process and treatment.  We have an appointment with them Monday to do Cash's intinal scan.  The scan takes less than 2 seconds and eliminates the need for traditional plaster casting, which can be traumatic for the baby.  After the scan we will be able to order our Starband.  WOOT WOOT!  The band (or helmet) will be in within 2 weeks and then we start our weekly/biweekly trips to Dallas for fittings.  We are now accepting gas money donations. ;)   

Plagiocephaly...such a big word for such a little guy

Plagiocephaly.  That is what we were told.  What is it? we asked.  What did he call it? we asked.  What do we do now? we asked. 


I took Cash to the dr last week for his 4 month check up.  Checked his weight...14lbs9oz. (such a big boy!)  Checked his length...25 in.  Checked the little guy from head to toe and everything looked great.  Well almost everything.  The doc mentioned that the back of Cash's head looked abnormally flat. 

This was not new information to us.  I had noticed from the time we brought Cash home that he always wanted to lay towards the right and was a little flat on that side.  I read somewhere to start repositioning him, alternating what hands I used to lay him down, change the direction we laid him in his bed and to switch arms when holding him.  So we did.  And slowly it started to even out.  When I asked the pediatrician about it he said to increase tummy time and it will fix itself as he grew. 

At Cash's 2 month appointment his head was more flat across the back and not just on the right.  The doc again said lots of tummy time and it should start to fix its self.  So we did.  I even ordered these great little hats called Tortle's.  I think we would have had better luck with these if we had started using them right away.  People kept asking about his head and I kept telling them the dr said it will fix itself as he grew.  But when I was alone I worried and cried about it more than I should have.

So now we are back to Cash's 4 month check up.  We were seeing a new doctor this time and Tyler and I had made a list of questions to ask and his head was question number 1.  When the doc brought it up before I had the chance to I got a little nervous.  He started talking about what might be the cause of the flatness and mentioned that the sutures in his skull might have fused early.  He sent us for a x-ray and said he would call me the next day with the results.  I was a nervous wreck.  The dr did call the next day and to my relief said that his sutures were still open.  PTL!!  He then started throwing around this big word...plagiocephaly and said that his nurse would call a specialist in Dallas about helmet therapy.

Now my brain was racing.

What did he call it again?  playgeosomething.

Plagiocephaly [pley-jee-uh-sef-uh-lee]

What is it?  A deformity of the skull in which one side is more developed in the front, and the other side is more developed in the rear.  Flat Head Syndrome.  I spent the entire weekend online trying to figure this out and to see what we should expect. I had a hard time finding information. Finally I took to Pinterest and found some good stuff. I also began to see how everyone decorated their child's helmet. Tyler and I started talking about how we would decorate Cash's. This helped us to not be so worried and turned it into something a little more fun. 

Whats next & how do we fix it?  We go to meet with a Craniofacial specialist and make a game plan.   

Cash's flat head