Wednesday, May 22, 2013
Monday, May 6, 2013
KTS
I prefer referring to it as 'KTS' because it sounds a lot more like a surf brand than a vascular condition, and its almost impossible to say 'Klippel-Trenaunay Syndrome' out loud and not sound like a complete idiot (you totally just tried it, didn't you?). Anyways, some people have asked me about this, some people have braved the wilds of the internet, while others are blissfully unaware, so I thought I'd lay down the quick skinny on what's going down with the Goose these days.
She got diagnosed the day she was born while in the NICU by the guy who literally wrote the text book on it, and we've been assured that it is completely unrelated to the omphalocele (her surgery) or the pesky kidney thing that's still hanging around (the trifecta!) which makes her one pretty special little lady. The symptoms that awarded her with this incredibly rare title are that she has one limb larger than the other, in this case her legs, and extensive port wine stains. That day we were told that her condition could 'get better or get worse' over time but we've come to find out that was only in reference to the difference between her legs and not the PWS, and it appears that our chubby little hedgehog has filled out in all the right places in the past couple weeks so the difference is barely noticeable at this point - you'd have to be looking pretty closely for it to tell and we're praying this continues to be the trend. Heck, I've got one eye bigger than the other which you've probably never noticed (caught ya! You were just about to scroll back to pictures...) so a little character never hurts.
Although this Momma has a penchant for polka dots, unlike regular birthmarks that fade to brown or disappear as you get older, PWS are a result of some blood vessels gone haywire and only get progressively worse over time. Her engineer dad likes to describe it as a 'vascular programming issue', and depending on their location, they can make the organs closest to them go a little haywire too which is what we've been doing at all these appointments over the past couple of weeks, which have thankfully come back normal (the biggest of which being a check on her spinal cord). Apparently you'll rarely ever come across them reaching their potential because everyone gets them treated at some point, preferably when they are as young as possible to achieve the best possible results without any memory or pain to the little one. They have been known to start these laser treatments when babies are only weeks old but have decided to give us time to chill out for awhile since we've already had her surgery to recover from. And while it is unbearably hard to think of her going through anything more than she already has, we have been assured by every person who has knowledge of and/or experience with PWS that this is something we MUST do for her as it will only get more difficult, with less positive results the longer we wait and would be a huge disservice to her not to do this at this time.
All this being said, if you've met her, seen her, loved her, you already know she looks like the happiest, healthiest little goose around and you'd never know she'd already been through so much. Not to mention we think she's pretty freakin' cute and are hoping her bigger leg might even give her a leg up in soccer some day (pun totally intended - I'm obviously not above the lowest form of humor). So if you've got a nano second or two free please feel free to send any prayers, karma, happy thoughts and good vibrations to Makenna as she starts her next medical adventure!
She got diagnosed the day she was born while in the NICU by the guy who literally wrote the text book on it, and we've been assured that it is completely unrelated to the omphalocele (her surgery) or the pesky kidney thing that's still hanging around (the trifecta!) which makes her one pretty special little lady. The symptoms that awarded her with this incredibly rare title are that she has one limb larger than the other, in this case her legs, and extensive port wine stains. That day we were told that her condition could 'get better or get worse' over time but we've come to find out that was only in reference to the difference between her legs and not the PWS, and it appears that our chubby little hedgehog has filled out in all the right places in the past couple weeks so the difference is barely noticeable at this point - you'd have to be looking pretty closely for it to tell and we're praying this continues to be the trend. Heck, I've got one eye bigger than the other which you've probably never noticed (caught ya! You were just about to scroll back to pictures...) so a little character never hurts.
Although this Momma has a penchant for polka dots, unlike regular birthmarks that fade to brown or disappear as you get older, PWS are a result of some blood vessels gone haywire and only get progressively worse over time. Her engineer dad likes to describe it as a 'vascular programming issue', and depending on their location, they can make the organs closest to them go a little haywire too which is what we've been doing at all these appointments over the past couple of weeks, which have thankfully come back normal (the biggest of which being a check on her spinal cord). Apparently you'll rarely ever come across them reaching their potential because everyone gets them treated at some point, preferably when they are as young as possible to achieve the best possible results without any memory or pain to the little one. They have been known to start these laser treatments when babies are only weeks old but have decided to give us time to chill out for awhile since we've already had her surgery to recover from. And while it is unbearably hard to think of her going through anything more than she already has, we have been assured by every person who has knowledge of and/or experience with PWS that this is something we MUST do for her as it will only get more difficult, with less positive results the longer we wait and would be a huge disservice to her not to do this at this time.
All this being said, if you've met her, seen her, loved her, you already know she looks like the happiest, healthiest little goose around and you'd never know she'd already been through so much. Not to mention we think she's pretty freakin' cute and are hoping her bigger leg might even give her a leg up in soccer some day (pun totally intended - I'm obviously not above the lowest form of humor). So if you've got a nano second or two free please feel free to send any prayers, karma, happy thoughts and good vibrations to Makenna as she starts her next medical adventure!
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