Thursday, May 17, 2007

Owen's in a band???

Ok, so not really-at least not the kind of band you may be thinking of-read on to learn more;-)
Disclaimer for the following entry...

Why? To answer curiosity, to help others be informed and potentially prevent this from happening to your or someone you know's child and generally, to tell more about our story.
Ok, with that over, here goes...
We had our BIG trip to Chicago today! Nearly 300 miles and 9 hours later we arrived back home with lots of information. Plus, a nice visit with Amy and Quinn.

Here's the recap: We headed out this morning with trials to start our journey including no car seat for Jacob, and 3 wrong turns. Good thing we left tons earlier than needed. The drive went smoothly from there and I was blessed with 2 sleeping kiddos most the way and didn't have any further problems until I arrived near my destination and passed by the building 3 times before realizing it was "the place". It was weird b/c it was a building that you drive under and can park under, but I couldn't figure out how to get in "the front doors" since there weren't any.

Oh, by the way-this was the appt for Owen's noggin. We went to Chicago to this place (Cranial Technologies) because through all my research online, they seemed to be the most amazing in all areas from professionalism, research, before/after, advertisement, and specialty~and truly most importantly, they got us right in!!!

Why did we need to go? I have uploaded the following photos to try to help explain it.
What Owen has is called Plagiocephaly. Since about his 2 month appt, I have been mentioning his head shape to his doctor. He just said it was fine. I felt though, that as these months have gone on, it's just worsened. It was round at birth, but had been changing slightly over time. In fact, at a couple appts, Physical and developmental therapists have strongly urged me to keep him off his head COMPLETELY. I didn't quite understand how to do this for many reasons-1) he prefers the back of his head and can get to a flat position thru squirming regardless of how well he's positioned, propped, etc. 2) I can't hold him all the time even though he prefers it :-( and they recommended it as a solution)-do they have kids??? 3) he can't do anything on his own, like sit up or do an exersaucer due to his small size and inability to hold himself up and 4) he spends time in many "different" places already-swing, bouncy, bed, boppy, etc but, apparently, it's all on his head when you think about it.

Ok, so it's actually a form of plagiocephaly, called brachycephaly. It's where the back of your head flattens and makes your head longer, pointier, and wider. It can also cause some assymetry of your ears and forehead (sometimes even eye sockets, jaw, etc).

So, what can they do about this? They assessed him to assure the severity warrants correction (none of us have perfect heads, so a little assymetry is no biggie). So, for Owen's head, they decided it was moderate which is good news. If it were severe, he wouldn't get good results from correction. If it were mild-they'd just hope for the best and monitor for worsening. But since his is in the absolute best time for treatment (babies 3-6 months have the best chances for successful remolding) they recommended Owen get treated ASAP to avoid further complications and eventual hardening of his head in this shape (or worse) which could not be addressed.

Why fix it? Obviously, because it's so if it's possible without risk/harm to him to get it to reshapen, then why not fix it? 2nd, it will tend to worsen until it hardens (it being his skull) so it will continue to widen and lengthen. Plus, his ears have already started to shift assymetrically and his forehead has been pushed out a bunch. As all parents do, I want the best for my child. If I pass up this opportunity or ignore it, it is possible that he suffers in the future from various effects from not doing anything. We don't know how much worse it will get but if we don't fix it now, we can not go back when he's 2 and say anything but oops, shouldda done something about that then.
I have had recommendations to see another specialist at Riley to address the issue but I have heard that they don't band, but instead helmet which is less proactive and thus less effective and not often treated since helmets don't get great results. Otherwise, Why not wait for Riley? Unfortunately, they can't see him for over 2 more months!!! That's crazy-since, the longer we wait, the less "good" the results will be. What poor grammer;-)
Will this hurt Owen and how does it work? No, of course it won't hurt him. If it did, they wouldn;t have been able to help over 35,000 kids over 18 years. It works by applying gentle pressure to the areas that don't need to continue going the wrong direction, while allowing the places that need expanding room to accept growth. Not the best explanation-but the best I've got;-)
Here are the pictures to show you more:
Picture 1) I couldn't resist-nothing to do with educating on plagiocephaly,
beyond that he's gorgeous no matter what! Hats help;-)

Picture 2) You can seethe narrowing of his forehead and widening of the sides
of his head and see a little mild ear assymetry

Picture 3) You can see the "flatness" of the back and the buldging of the front.

Picture 4) You can really see the flatness of the back and buldging of his forehead. Plus, the height of the top of his head is very "tall" and "egg-like".

Picture 5) You can see the wideness, and the buldging of the base of his skull
and a little more ear assymetry-not the best picture

Picture 6) Here is the trapezoid shape that I first noticed that queued me to a problem. It's narrow in front and wide at the bottom and his forehead is a little higher on one side

So, here's what his cool band may look like...Isn't it super cute? I hope to find some talented sole to help me decorate it with his name and a construction theme-with the words "under construction"...isn't that fitting? I thinks it's espcecially poinant as God's not finished with any of us yet;-) This is a cranial tech "calendar baby", just so you can see what his band "may" be like. Each band is unique to the baby's needs so really no 2 are alike.
And, no-bands don't hurt the baby;-)
So, I'm hoping this all works out...I am definately worried about insurance not approving it since, I was referred to Riley, not Chicago-but I can't help but be proactve and an advocate for my baby. So, if they won't pay for it, it's VERY expensive and that would be yet another expense-ok, you get the point. Bills stink. Even if it is covered (which would be HUGE), we will potentially need to make WEEKLY visits to the clinic in Chicago (almost 300 miles round trip) for 4 months! Wow, some quick computations at 17 miles to the gallon-no, no-don't even tell me-the number is too painful. Not to mention, it would be like having a new part-time job, 6-8 hours a day, once a week.
Ok, none of it matters-Owen matters. God will provide and work out all the details-I'm not the driver, I a mere passenger-in fact, God would prefer I just get in the trunk and come along for the ride. He needs no road map, nor co-pilot, nor back seat driver to tell him what I need, or what to do. He knows. He's got Owen covered;-)
If you have any questions, don't hesitate to ask..I'm quite candid as you can tell;-)
Thanks again for checking in on us and please continue to keep us in your prayers.~R