... dylan's plagio triumph ...

The final results - WOW!

2007-07-08T10:02:00.000-04:00

How have 8 months passed since I last posted to this blog? I have no idea where the time has gone. In a nutshell - Dylan finished his helmet therapy on December 24! And we couldn't be happier. It was the best Christmas present I could've asked for. We had our final trip to Miami on December 4. He wore his helmet for the next 3 weeks and then we were able to take it off at home.

It was actually a bitter sweet day for us - Dylan had grown to love the staff at Cranial Technologies so much that we were sad to not have our weekly visits. We also had grown to attached to the helmet that it was 'strange' to see him without it.

His results were really amazing! He had a severe case of plagio when we began treatment in June, 2006 and now, unless you were looking for it, you'd never be able to notice any asymmetry. Here are his final photographs - truly remarkable.

We traveled 12,320 air miles plus 3 driving trips for the treatment. That coupled with all of Dylan's trip to visit family puts him at over 18,000 air miles in his first year of life and almost 25,000 to date. What a little jet setter he is!

Honestly, we can't thank the team at Cranial Technologies enough for all of their help. Truly an amazing resource for scared, nervous, concerned parents.

Here's our little slugger!

2006-10-25T13:37:00.000-04:00

We kept this helmet unpainted for the first few weeks ... and I was actually considering not painting it at all. However, one of the girls at Cranial Tech, Veronica, really encouraged me to paint it. So, we did.

In the spirit of the baseball playoffs, we painted it like the St. Louis Cardinal's batting helmet. I'm now convinced that this helmet is their lucky charm considering how well they've been doing!

A true graduation!

2006-10-25T10:25:00.000-04:00

We graduated from our physical therapy 3 weeks ago, on October 3rd. This time I felt like Dylan had really earned his graduation and it wasn't some false excuse for our insurance limitations. While I believe he's still on the lower end of the development chart for babies his age, he's made some huge improvements over recent weeks and months. He's sitting, scooting and this weekend began to crawl on all fours. Now that's a call for a celebration considering the diagnosis we were hearing a few months ago!

Bring on the party hats. And champagne!

where have you been?

2006-09-19T12:52:00.000-04:00

OK, I have no good excuses for not posting recently so I won't even attempt to explain. Dylan has been doing great in the last 6 weeks. He's sitting up (and has amazing posture!), he's scooting around like crazy and beginning to babble. Of course, I think he's already said "hi mom" and am going to continue to let myself think that!

Bryan and I struggled with the decision of whether or not to do the second helmet - even up to the day of the second casting. He had tremendous success with the first helmet, but there was still some work to be done. The team at Cranial Technologies were great about making sure we were educated on what may or may not happen. They said we should expect to seem some additional improvement, but given the severity of plagio at the beginning he would never have that perfect Kojak head. And that's totally fine with us. We did, however, determine that this was our one and only chance to make any sort of impact ... so we moved forward with the second helmet.

He had his casting for his second helmet on August 28. Bryan wasn't able to go with us and I was a little concerned about that, but Dylan was a real trooper! Below are some of the progress photos. The left photo was taken on June 2nd when we began the therapy and the right photos were taken on August 28. The demonstrates the huge improvement he's made to date!

Look ma, no more tilt!!

Look at that posture! You can really see the roundness of his head in the photos on the right.

This is where I see the most significant change ... look at the reshaping of the side of his head in the top right photo and how you can now see more of both ears in the bottom photo. This type of result is what makes all the travel worth it!!

Big news of the week!

2006-08-23T11:15:00.000-04:00

Dylan is sitting up. Yep, sitting up. (Almost) all by himself. This is a huge step for any baby, but it feels really big for Dylan because 10 days ago we were considering possibility of muscle disorders, etc. I should have listened to my husband because he was right (can't believe I'm saying this!). He says - Dylan is on his own timeline, the plagio and torticollis will cause him to develop a little more slowly than other babies and I should just relax.

Well, he's right.

And I'm relaxed.

as you can see he's already fixated with the remote control...

Part Deux

2006-08-21T21:24:00.000-04:00

We head to Miami on Monday, the 28th, to get fitted for Dylan's second helmet. He's made tremendous progress so far but is just about to outgrow his helmet and there is still some work to be done. We figure this is our one and only shot to get this right. Selfishly, I was hoping we'd be able to squeak by with just one helmet.

However, we've got the travel thing down now. We're actually pretty good at it if I do say so myself. And I've finally gotten my work under control so I can be gone for a day or so per week and not have to make up for it in the evenings. So it's just a few more months of trips to Miami and then we should be done.

This is Rachel - our therapist. She's wonderful and Dylan absolutely adores her. I know I've gone on and on about the great care we've received at Cranial Technologies, but it's true. They have made this experience much more manageable for us.

An apple a day

2006-08-21T09:31:00.000-04:00

We have been rather quiet over the last few weeks because we've been working through some issues with Dylan's pediatrician and physical therapist. Dr. Cooper (our pediatrician) is concerned about 2 things - Dylan's weight and Dylan's muscle tone. Here's the Reader's Digest version:

His height is continuing on the expected curve, but his weight has plateaued. This started about6 weeks ago so we've been monitoring it for a while and he's been eating like a machine, but he’s not gaining weight at the expected rate. Dr. Cooper is concerned, but not alarmed therefore we're not going to subject Dylan to any tests at this point. So we’ll wait. And keep feeding him.

Dylan seems very normal and active to us - honestly, I couldn't imagine him being any more active. However, our physical therapist is concerned about his muscle tone. It's very common for babies with torticollis and plagiocephaly to be a bit behind developmentally (i.e. they usually sit up and crawl a few weeks to months behind other kids) so I haven't been concerned about how he's tracking on that front. However, since he's so active she thought he’d have more muscle tone and be a little stronger at this point. She wanted Dr. Cooper to examine him and rule out any sort of muscular disorders. My heart sank; however, I was very patient until we went to see the peditatrician. Dr. Cooper is, again, concerned but not alarmed so we're not going to subject Dylan to any testing at this point. We'll continue to monitor his development over the next few weeks and go back in mid September for another exam. We're going to carry on as normal. Go to PT every week. Continue doing our exercises at home.

Bryan is convinced that Dylan is perfect and we shouldn't listen to the doctors anymore. And I agree, but also think I’m suffering from a bit of doctor burnout! We've been seeing at least one doctor per week since the beginning of May. I wish that 'apple a day' saying was true!

Lucky number 7

2006-08-06T10:38:00.000-04:00

Dylan is 7 months old today. I try to think about where the time has gone and I can't quite figure it out. Part of me feels like it was just yesterday when we we brought him home from the hospital and the other part of me can't remember or imagine my life without him in it.

I do know where a little bit of the time has gone. Traveling. So far he has traveled 9,640 air miles. Pretty significant for 7 months old. He's taken 3 flights to visit family and all of the other miles have been racked up by our trips to Miami. Unlike his mother, Dylan has been amazing with all the travel - dealing with layovers and delays with ease, taking naps in his carseat with no complaints. No meltdowns. In fact, he does it all with a smile. A big smile. Gives all of us adults a reason to relax and smile, too. If a 7 month old, with a dirty diaper, can handle a rough landing then so can we.

I can't wait to see what the next 7 months will bring.

Flavor of the week!

2006-08-02T05:43:00.000-04:00

Here's my favorite picture of Dylan this week. We take full advantage of our hour each day when he can have his helmet off. He loved baths and the water before, but I think there's a new appreciation now!

Bring on the Miracle Grow

2006-07-20T15:52:00.000-04:00

Dylan is progressing, but it's slow. Slow, slow, sss-low. His therapist at Cranial Technologies, Rachel, says he'll wear his helmet for at least another 6-8 weeks and then we'll begin discussing our next options. It looks like he's a candidate for a second helmet, but we'll cross that bridge when we get to it.

I finally painted his helmet. We'd gotten so used to seeing it white that it didn't stand out to us anymore; however, now that it's painted it seems to be less noticeable by others. It's less clinical. Dylan's been wearing the helmet non-stop for almost 8 weeks now and we're so used to seeing him that way that he looks a little strange without it.

Attempt #1: I didn't realize that we were supposed to seal it after painting it. Rookie move. All the paint peeled off the next day at daycare. I was going to be creative and do a little beach scene - complete with surf boards and hula girls.

Attempt #2: I opted to forget the hula girls - a little too creative for me once I actually tried. Here's where we ended up. At least everyone now knows his name (although you'd be surprised at how many ways there are to pronounce Dylan).

Put down the party hat

2006-07-12T16:31:00.000-04:00

As we suspected, we didn't really graduate from physical therapy. Good thing I didn't order that cake (and good thing I did drink the champagne!).

On Monday our pediatrician recommended (or maybe just agreed with me) that we should continue the weekly physical therapy at the hospital. While I'm happy about this and know that it will help Dylan, I'm sure he won't be very happy when we walk back into the hospital next week. He's reached that age where he can begin to remember things - especially those things that he doesn't like. And saying that he doesn't like physical therapy is putting it mildly. I keep thinking/hoping that since his muscles are getting looser he'll begin to enjoy it a little more. But that's just rookie mom talk. He hates it. End of story. Other parents that have gone through torticollis and plagio say that the physical therapy is the most important part ... so I'll continue to be mean mommy and take him to PT and do the stretches daily at home. He'll thank us someday. Right?

Now, where's that champagne?

Dylan's first press

2006-07-11T22:22:00.000-04:00

On a recent Angel Flight, Bryan was interviewed by a Florida newspaper. Again, in the amazing and giving spirit, the pilot and his wife are earnestly working to get more awareness and support for Angel Flight America and specifically our region, the Southeast.

They brought along a reporter and a photographer who flew on the flight from Miami to St. Simons - snapping photos and asking questions. While Bryan was tired from the long day (and getting lost in Miami since it was his first trip alone!) he gave them some great background on how Angel Flight has helped our family.

Take a peek at the article. This is one for the baby book, huh?

Generosity at its best

2006-07-09T21:12:00.000-04:00

I know there are many charitable and generous people in the world. I have been lucky enough to meet a few of them in my life. However, I've never been quite so touched as I have been recently. I've mentioned this before on the blog, but the volume of loving and supportive e-mails and phone calls we've received has been so encouraging.

We've also gotten a lot of support through the Angel Flight organization. Now this is an amazing group of people.

The organization is run mostly by volunteers. The pilots are volunteers. They go out of their way to make sure we're taken care of, donate their time, their plane and the fuel. These amazing, gracious people have made us feel like we're not going through this treatment alone. That is more than we can ever thank them for.

We've had a pilot fly 2-3 hours out of their way to pick us up while "on his way home", drop us off and then fly 4 hours back to their home (Thank you, Mr. Ross!). We've had a pilot fly us through some very nasty storms and keep a calm voice when I ask about the severity of the weather for the 20th time (thank you Mr. Woodside!). And we've had some wonderful pilots fly crazy flight patterns (all the way to the west side of Florida) when trying to get us to Miami (thank you Mr. Jordan).

I could go on and on about each of these pilots. The bottom line is that these are amazing people with huge hearts. And this little family in St. Simons Island truly appreciates them.

graduation? what graduation?

2006-07-07T13:52:00.000-04:00

At our physical therapy appointment last week our therapist told us that Dylan was "graduating" from therapy. This should be a call for celebration, right? Wrong.

The real reason he graduated is because the prescription that our pediatrician wrote ran out and it would require some paperwork and approvals for her to continue the therapy. Additionally, she genuinely seemed convinced that Dylan was better. I really like her and am sure that she's capable ... I just disagree with her on her assessment.

We decided to go along with the graduation idea for the time being because we knew we were going back to Cranial Technologies in a few days and also are scheduled for our 6-month visit with our pediatrician next week.

In addition to graduation, the therapist told me we could cut back on the stretching at home to only once per day, then every other day and then phase the stretches out completely. This seemed a little strange to me considering his torticollis is still very much present - yes, his neck has loosened up a bit and yes, he can look to the left. However, he doesn't. He only looks left when prompted and he still tilts to the right - considerably. A stranger walking down the street can notice that.

So, we asked Rachel what she thought (Rachel is our therapist at CT who we absolutely adore!). She was surprised by the "graduation" and said we should definitely continue therapy as well as twice per day stretching at home. No surprise to me.

We're off to our pediatrician tomorrow, July 10, and will hopefully get some new advice (and prescriptions!).

the progress continues

2006-06-27T12:11:00.000-04:00

We had our second adjustment yesterday, 6/26. Dylan is doing well - he's growing and that's all he's supposed to do at this point in order to make progress. It's a challenge to travel all the way down to Miami for such a quick appointment. We are only in the office for about 30 minutes - that includes the evaluation with the therapist and the time it takes to make the adjustments to his helmet. The adjustment consists of filing down the portions of the helmet where we want his head to continue to grow and maintaining the contact/pressure in the other areas.

However ... we absolutely love our therapist, Rachel. She was previously a pediatric physical therapist with years of experience in dealing with torticollis babies and began working with Cranial Technologies about a year ago. She's got an amazing knack for treating babies. Dylan loves her (even though she's the one who made a cast of his head!). She's warned us that he'll likely need to wear two helmets given the severity of his plagio, but we're still keeping the faith that by the time he outgrows this helmet his therapy will be complete.

Oh, we took the Angel Flight again this week. It was MUCH better than last week - all of the planes had AC and the weather was about 20 degrees cooler (and mommy took some motion sickness medicine just to be safe!).

angel flight = green carrie

2006-06-23T10:00:00.000-04:00

We were lucky enough to be selected for an Angel Flight for our visit to Miami last Monday, the 19th. It was an experience! They picked us up at the airport on the island (which is about 2 minutes from our house). One plane flew us the entire way down to Miami and we took 2 planes on the way back (switching in Titusville,FL). Now, I knew that these planes would be small, but I wasn't prepared ... they make my Nissan Altima look like a limo!

The first plane had 4 seats, but room for 6 so there was a little extra room for cargo. It was a little bumpy at take off, but as soon as we got up to 4,000 feet it was pretty smooth sailing. Took about 3 hours to get to Miami.

The return flight was more of a nail biter for me. We flew out of Miami at 3:30 - it was 100 degrees outside; the plane felt like 200. It was much smaller than the first plane. Like barely enough room to get the carseat in the back seat with Dylan and me. Due to all of the air traffic they didn't allow us to fly above 2,000 feet for the first hour of the flight - it was incredibly bumpy. And hot. Dylan and I both sweat through all of our clothes. I must've been green because the pilot turned around to show me where the airsick bags were ... and I quickly put one to good use. Nice, huh? Soon after that we soared up to 7,000 feet, the air got cooler, less turbulence and I stopped cussing. We landed in Titusville and switched to a different plane - the smallest of all three! This one was so tiny that we had to put the carseat base in the front seat with the pilot because it wouldn't fit in the back. However, this was the best flight - nice and smooth and much, much cooler.

All three of the pilots were incredibly nice and so, so generous. I am still amazed that there are so many kind, thoughtful and generous people out there. It's truly touching.

Oh - and the most important thing here - Dylan's appointment went great! The therapist said she's beginning to see some improvements in the shape of his head already. His neck, while still very tight, is beginning to loosen up as well.

Next appointment - Monday, June 26.

Note to self: for the next trip take lots of water, onsies only for Dylan, 7-up for mom and don't wear a skirt.

our little hoosier

2006-06-17T08:37:00.000-04:00

The term 'Hoosier' has a completely different connotation for our St. Louis friends, but for our Indiana family and friends it's almost a religion. People from Indiana are either die-hard IU fans or die-hard Purdue fans. There's no gray area.

Had to post one more photo, sans helmet, of Dylan sporting his first Indiana University apparel. Thanks to Aunt Julie and Uncle Dale!!

is it really 95 degrees?

2006-06-17T08:15:00.000-04:00

Well, here he is in all his helmet glory! We got the helmet on Monday, the 12th. So, it's been about 5 days and so far, so good. He's adjusted so well to the helmet - he didn't even squirm when they put it on for the first time. I'm amazed as to how well he's responded to it ... much better than most adults I know!

Right now the biggest concern for us is the heat. Dylan's a sweaty little boy anyway (not looking forward to those teenage years); add in the south Georgia summer heat and a plastic helmet and you've got the perfect combination for heat rash. We're taking the helmet off every few hours to make sure he has a chance to cool off and dry out the helmet. If he does develop a rash or any sort of skin breakdown then we'll have to stop wearing the helmet until it clears up. Not the end of the world, but we're so anxious to get the ball rolling on his recovery that even tiny delays drive type A personalities like me crazy.

So, 23 hours per day. 7 days per week. No crying yet!

BTW: the helmet is plastic on the outside and a specialized foam on this inside. It's very firm, but has a little cushion. The outside, on the other hand, is a weapon. Three bloody lips for me this week. I suppose it's a little like free lip collagen.

tick tock, tick tock

2006-06-10T01:38:00.000-04:00

As the days go by we get more and more anxious/excited/nervous about getting Dylan's helmet. He and I will fly to Ft. Lauderdale on Sunday to stay with my grandmother and then spend Monday in Miami at the clinic with the helmet fitting, some physical therapy and then helmet readjustments. Even though granny is almost 2 hours away from the clinic it's nice to have her close-by to break up the trip.

I must admit that I've been incredibly moved and touched by the e-mails we've received from friends who are just learning of Dylan's condition through this blog. It's honestly been overwhelming. Bryan and I are so lucky to have such an amazing network of friends who are so loving, kind, supportive and generous. We truly appreciate each and every one of you. We wanted those of you who haven't met him yet to see him sans helmet ... as I'm sure this blog is about to fill up with helmet photos very quickly!

Step 2 in the process

2006-06-05T21:17:00.000-04:00

The next step is to go back to Miami on June 12 for the first fitting ... this is the day that Dylan will get his helmet and we'll finally be on the road to recovery. We're very anxious about this (at least I am) and also a little nervous.

At that appointment we'll find out how frequently we have to go back for fittings. It's typically every 7-10 days for infants his age. They grow so quickly that the helmets need to be readjusted to make sure they're applying pressure in the right spots and providing enough room for the head to "fill out" in other spots. You can wear a helmet up to 4 months ... yes, trips to Miami every 7-10 days for 4 months. I almost can't even believe it.

Also, at our initial appointment we learned that due to the severity of Dylan's plagio he is a candidate for a second helmet. It sounds like we may need to go longer than the initial 4 months. Dylan's gonna be a road warrior by the time he's one.

We're now beginning to work through the logistical issues of how we're going to manage this. We've learned about an amazing organization call Angel Flight America. It's a network of pilots who volunteer their time & planes to fly people in need of medical assistance to wherever their hospital/clinic is located. We're not sure if they will work out for all of the appointments, but it would certainly help to supplement some commercial flights with some Angel Flights.

Driving isn't an option for us - it's 8 hours one way and Dylan really struggles being in the carseat for that long. Who can blame him? I struggle, too.

Miami, here we come

2006-06-04T23:58:00.000-04:00

We've learned that the best treatment for plagiocephaly comes from a company called Cranial Technologies, www.cranialtech.com. They have developed a non-surgical treatment for plagiocephaly that involves developing custom helmets for infants that reshape their head and correct the deformities. There are other more general treatment options (i.e. companies who create leg braces, prosthetics, etc.), but Cranial Technologies is the only company who exclusively focusses on babies with plagiocephaly. Say no more - they're the solution for us.

They have clinics all across the country and we thought had one located in Atlanta. Weekly trips to Atlanta wasn't ideal, but certainly manageable. We found out last week that the Atlanta location closed earlier this year and the next closest clinics were Charlotte, NC or Miami, FL. The Charlotte location was booked until late June and considering the serverity of Dylan's condition we're too eager to get started to wait that long. So, we made an appointment for the Miami clinic for Friday, June 2.

We drove down for our first appointment. Don't asky why ... it seemed like a good idea at the time. Dylan was great for the first 4 hours then he'd had just about enough of the road trip experience.

The first step is to take a complete set of photos of Dylan's head to truly assess the condition. From these photos you can see the extent of the plagio. In the photo on the left you can see how the head is "slanted" and in the photo on the right you can see how his ears are misaligned and his forhead protrudes on the right.

Apparently we were a little ill-prepared for this appointment. I knew we were going for a "casting", but had no idea what that meant. They literally put a cast on his head - this serves as the mold for the custom helmet they make. We didn't take any photos, but here are a couple from their brochure.

It was pretty traumatizing for all 3 of us ... even though it only lasted about 15 minutes it was a very bizarre process. Mommy needed a drink when we left the appointment ...

He has what?

2006-06-04T23:02:00.000-04:00

So, Dylan is perfect. Right? Right. He's as cute as can be, he's a happy baby and got a great personality. So what's the big deal if he always likes to sleep on his right side. At least that's what I thought...

Bryan was in Europe on biz when I took Dylan to his 4 month well baby checkup. No big deal, right? I walked out of the appointment with a referrals to 4 specialists for all potentially very scary things. I was shell shocked. We learned that Dylan did not pass his hearing screen at the hospital when he was born and after the doctor examined him he said we needed to see an audiologist. During his exam he noticed some “cysts” on his eyes and referred us to a pediatric eye specialist. Then he diagnosed Dylan with something called torticollis which has to do with the neck – his inability to turn his head much to the left and extremely far to the right – so he reffered us to a pediatric physical therapist specializing in back and neck issues. The scariest thing was about his head. As I mentioned, Dylan sleeps his right side all the time and has developed a flat spot. We knew this, but thought it was a fairly common thing with newborns and tried not to be alarmed since we had discussed this with the pediatrician at the 2 month visit and he didn't seem concerned. In fact, he said things would likely get worse before they got better. Well they certainly did. The doctor was very alarmed at the 4 month appointment because he said it was markedly more pronounced than the last visit and is beginning to change the symmetry and shape of Dylan’s face (his right eye is beginning to push forward and his right ear is moving down). He thought it might be something other than plagiocephaly (aka flat head syndrome). He thought it could be craniosynostosis which is where the bones in the head fuse together improperly resulting in pressure on the brain and facial deformities. So he referred us to a neurosurgeon. A wha? A neuro-what? Yes, a neurosurgeon. I thought I was going to faint.

So, we’ve now had appointments with all of the specialists and have some promising news to share.

He passed his hearing screen yesterday with flying colors.
We went to Savannah to a pediatric eye specialist. Dylan does have some cysts on his eyes right around his pupil (they’re not cysts in the sense that we’re thinking of them – they don’t poke out of his eye. They’re growths within the eye). Fortunately, the doctor believes them to be benign and thinks they’ll go away as Dylan grows and won’t impair his vision in any way. We go back in 6 months to make sure he’s right, but he was confident in his diagnosis.
We went to a pediatric neurosurgeon in Savannah, too. Dylan had a catscan so we took the pictures with us. He said his head looks fine and no signs of craniosynostosis … so no surgery. THANK GOD! He does however have plagiocephaly. And based on how advanced it is and how it’s beginning to move his facial features the doctor recommends that we get Dylan fitted for a special helmet ASAP. This helmet will help reshape his head and, hopefully, be a deterrent for him to continue to sleep on that side of his head. The helmet specialist that he recommended is in Atlanta so we’re trying to see if there is someone closer before making that appointment.
We met with a physical therapist and confirmed that Dylan has torticollis. It likely developed in utero and is the reason he is always turning his head to the right. We are doing weekly physical therapy sessions and twice daily exercises/stretching at home.

Here are some links for more reading:
Plagiocephaly: http://www.plagiocephaly.org/what_is.htm

Torticollis: http://www.drhull.com/EncyMaster/T/torticollis.html