The final results - WOW!
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!
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!
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?
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!
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
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
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
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!
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!
