Marie's Musings

Musings from the mundane day to day life of a mom of 9 to more serious ponderings of the day.

Wednesday, November 07, 2007

Atypical

Following Gideons trend since birth, making his own way into the world, Gideons diagnosis follows the same pattern. Yesterday the geneticist confirmed the diagnosis of Klippel-Trenaunay syndrome but indicated that his was atypical in the fact that he did not have the port wine stain or vascular birthmark.

It was a good appt, Andrew was able to go with me, so that was a great support as well. Im glad we had gotten the heads up on the syndrome(so we had done research ahead of time) so the questions we asked were more productive in terms of learning what we needed to know.

Its not generally life threatening or progressive. So its not likely, that this will spread to other parts of his body or systems. She also indicated she felt that much of the bulk of his big leg was due to lymphedema, which can be reduced. She indicated that with special massage therapy and wrapping the leg, that we could greatly reduce the swelling. This is a very specialized procedure that not a lot of therapists are trained in , let alone on kids. Once we find one, then andrew and I will begin the process of learning how to do this ourselves. It will take several weeks of intense sessions to learn how to do it correctly.

I also learned more about his venous malformation, its not a tangle of veins and whatnot as I thought, but a vein that didnt finish forming and just stops abruptly. The blood is still getting thru, it tends to take the pain of least resistence.

One of things we will have to do is make sure we are really watching that leg for infection. Cuts or scrapes on that leg/foot will take longer to heal as it doesnt get as much oxygen, so we will need to be diligent in cleaning and disinfecting cuts on that leg and watching for ingrown toenails.

On another positive note, she did not think his developmental delays were associated with his leg syndrome. Time will fully tell on that marker, but he is making remarkable progress on hitting varouis milestones.

Gideon is also gaining weight, he is up to 16 lbs and 10 oz, thats 1 lb 10 oz up in a month. Gideon is 7 months old today!!!!

We are still learning thruout all of this but it does feel good to be getting somewhere in diagnosing his issues and not the constant wondering of what ifs. God is good ... all the time!~

MJ

2 Comments:

  • At 8:34 AM, Blogger Bren said…

    MJ - how are you? I need a new a post to see how you are. I have been secretly reading for a long time. How have you been feeling?

     
  • At 12:20 PM, Blogger MJ said…

    Thanks Brenda for checking in! It still amazes me that so many people read the blog :)

     

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