Luke's Journey...

Where do I start?



Just seconds after I delivered Luke the nurses told me it looked like he had some bruising....However they were talking about the actual bruising he had and never saw his port wine stain until about 30 minutes later. From that point on I had so many people telling me different things..."it's a port wine stain"..."it's a strawberry mark"..."it's a stork bite". I just really wanted to know for sure what it was so we could move on from there and so I could have an answer for people when they asked. I had people telling me "don't worry it will go away" and then people telling me "he will need laser treatments for the rest of his life, maybe even yearly". I didn't know what to believe but I knew that I wanted him to see a specialist. There were days when I thought there would be NO WAY I would make my son have laser treatment...it just sounded crazy! Then there were days where I would look at his life 20 years down the road and then I started reconsidering the treatment. There were times that I was more emotional because I feared it may be associated with something much larger than just a superficial birth mark then there were times that I didn't care if 10 people asked me what was on his face. I was never upset that people were asking because even I myself (who used to work in a hospital) had never heard of a PWS so I totally understood.

At Luke's 2 week appointment our pediatrician said it's no big deal and that they would re-evaluate it at 2 years. I wanted to see a dermatologist so thankfully he referred us to Dr. Baron. The dermatologist agreed that it was a Port-Wine Stain (PWS) and that he would refer me to a specialist who does laser removal of PWS and that we also needed to see a pediatric ophthalmologist to rule out Glaucoma. Port-Wine Stains with time will darken (not lighten), thicken, can some times bleed and in some cases can be linked to syndromes and glaucoma. Thankfully just weeks later the ophthalmologist reassured us that he did NOT have glaucoma (at least at this point) and that he was actually slightly far-sighted (which is the opposite of glaucoma). He said the chances of him getting glaucoma are very low considering the PWS is below his eye and not on the eye lid...PRAISE BE TO GOD!!! We will go again in a few months for a repeat and then go yearly from there.


After 60 days, 2 different referring doctors, 5 denials saying the doctor was out of network or it wasn't medically necessary (which it is) and 1 appeal process with Blue Shield....we finally got APPROVED for CHLA!!!! It was so wonderful being woken up by my husband (I was taking a nap) to tell me that we got approved and his treatment would start when he turns 6 months old. It wasn't the doctor who we originally wanted but God is good and we love Dr. Sherwood (doctor who is treating Luke). Through the entire process I feel like I have learned a TON about birthmarks and am very confident when it comes to answering peoples questions about his PWS. I love his PWS and I'm sure I will miss it when it's gone (or at least faded). Me and Kyle have prayed for direction regarding treatment and we feel that this is the path we should be taking with him. We pray all the time that we are making the right decision, that he wont feel much pain and that the treatment will work wonderful for him and his situation. He is such a light in our life...he has the sweetest little personality and he is such a trooper. Thank you to everyone who have said prayers for him or just thought of us....we really appreciate it :).

Here is a picture of Lukey today after his "test spot". They did this to make sure he would respond well to the laser and they will start treatment in 8 weeks when he is 6 months old. They will put a topical Anastasia on the PWS and then do about 30 zaps (only lasting about 1 minute total). He will need probably around 6-10 (we are hoping 6) treatments and they are every 3 months. As his mommy I need to make sure he always keeps his face out of the sun since the best skin to do laser treatment on is white and thin skin (No tanning for Luke...LOL). His first treatment is APRIL 13th!!

*Side note....Just a few weeks ago I realized that Jeremiah (older brother) has NEVER asked what Lukey's PWS was!!! I know it is just normal for Luke and that is all Jer has ever known...but he has never mentioned anything. That just melts my heart :).