Port Wine Stain Treatments and other stuff....

One of the primary reasons I started this blog was to chronicle Greer's journey with her birthmark (which has turned into birthmarks).  She was born with a Port Wine Stain on her face/head/neck and later (about 2 weeks after birth) developed a strawberry hemangioma on her back.  You can follow her progress in pictures by viewing the slideshow over on the right side of the blog.  She has had 4 laser treathments on the PWS and we have seen great fading...simply AMAZING fading since her birth.  

Even with the great fading, we have a ways to go, and it will be a lifelong process to keep the fading at a maximum.  PWS is a progressive condition that will recur/worsen over time if left untreated (i.e. it will darken and possibly thicken and possibly develop "blebs" that may bleed easily).  We are also closely monitoring her for a syndrome called Sturge-Weber that can occur when the PWS involves the face/eye.  Because of the involvement of her eyelid, Greer has a 70% chance of developing glaucoma in her lifetime (it usually shows up in childhood) and the syndrome can cause seizures and developmental delays.  So far, Greer has shown NO signs of Sturge-Weber, but we are always on the lookout for those things.  Thankfully, she shows no signs of glaucoma (she saw the opthamologist again in August) and has had no developmental delays.  She is actually doing things ahead of the curve (this week, she is standing up in the middle of the room totally unassisted....and she's not even 9 months old)....that has been a huge relief.  Before I can even worry about her missing a milestone, she has already reached it!  God is good (but I already knew that!).

Greer did start to do this "shuddering" thing a few weeks ago (it looks like an adult getting a chill).  Everything I am reading says that it is something that is benign and seen in lots of infants, but because it "could" be a seizure, we are going to have it checked out.  She will have and EEG on October 7th and an MRI sometime after that.  The MRI is something that we were planning to do at a year of age, but because we are seeing the shuddering, it may happen sooner than January.  She had a CT scan (with and without contrast) on her first day of life.  It was clear, but as I have learned, follow up MRI's are important to continue to rule out problems.  Please keep her (and me) in your prayers.  I really have a peace about it, but extra prayers are ALWAYS appreciated!

Greer was supposed to have a laser treatment this week, but because of some changes in our insurance, that has been postponed until December 2.  It will be treatment #5 (again with general anesthesia...praise the Good Lord!).  We realized that treatments with anesthesia were going to be significantly more expensive under the insurance provided by Chris' company (basically, it was crappy insurance anyway!).  We made the decision that I would work a couple more days a month and carry our health insurance.  It was a decision that was not very hard to make....we had to do it for our baby girl!  To be honest, it is a huge weight that has been lifted off both our shoulders.  The insurance I receive through my employer for simply working 2 days a week is PHENOMENAL (at least in comparison to the alternative)....and it helps that I have an awesome husband who takes care of the kiddos when I work.

NOW, here are some pictures of Greer's progress....

This picture was taken on a day when she had a fever.

I figured out that the birthmark is a bit darker when she has a fever.

This picture shows the PWS on the back of her ear!  Can you see it?

This is the fading we have seen so far.  Check out the slideshow to compare

it to the pictures before and after her treatments.  It has really faded!  

We will continue treatments until we don't see any more fading.

So far, we have seen more and more with each treatment!