Bring on the Miracle Grow
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
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
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
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?
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!).
