the progress continues
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
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
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?
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
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
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
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?
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
