Today, I will work on those finishing touches to my letter, and God willing, I will be sending out the entire appeal tomorrow.
Please pray that:
- our appeal will be reviewed promptly and by medical professionals who will see clearly the medical necessity of these laser treatments.
- our appeal will secure full coverage for all of Judah's laser treatments, which could be quite a few over the course of several years.
Thank God with us that:
- we are seeing God hear and answer our prayers, both great and small.
- we see the parts of Christ's body within our church and beyond who seek to serve and use their gifts for the edification of the entire church.
We wait in prayerful anticipation of God's mercy and goodness on Judah's behalf.
2 comments:
Bri,
Would I be silly to ask the benefits of the laser treatments? You can email them to me or post them :) Thanks, Beth
Beth,
I'm going to go ahead and post an answer here as I think others may be wondering the same thing. It's not a silly question at all. None of this made sense to me before Judah was born, and it's been quite a journey trying to learn it all.
In brief, the laser treatments help to stunt any hypertrophy(swelling) that typically occurs w/ port wine stains (Judah already had hypertrophy on the right side of his face); it can help to prevent nodularity and blebbing; it also lightens the redness on the skin. If port wine stains are left untreated, they can cause quite bothersome if not medically impeding effects wherever it is present on the body. To get a picture of a rather extreme outcome of untreated pws, visit
http://geoffspws.com/
Geoff's story is among the more extreme that I've seen, but at the Sturge Weber conference, we did see quite a number of folks who had the extremely swollen faces or facial features, etc. These areas tend to bleed rather easily and if the underlying blood vessels have a high blood flow, it can be difficult to stop the bleeding. This is what I know so far, and I am sure there is more to learn.
The websites I have listed on my sidebar are really helpful for understanding the implications of Judah's SWS, his PWS and potentially KT (Klippel Trenaunay Syndrome...which he has not yet been officially diagnosed with, but we suspect he has it since the PWS covers his arm and both legs).
Please ask any question any time. It's a rare syndrome; we don't expect people to know what all the implications of it are. WE are always learning something new ourselves!! Thanks for caring!
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