List of the most popular hashtags for theme #PORTWINESTAIN

You’ve got to embrace your flaws because they are your greatest asset #embracingflaws #portwinestain #birthmarklove #makeuponpoint #eyebrows #anastasiabeverlyhills #contour #highlight #plussizemodel #tarteletteinbloom #browneyes #hoodedeyesmakeup #killit #muah #followforfollow #like4like #seattlenights #capitolhillseattle #gaytown #lgbt #queer

Today we go in for Leo’s 12th laser treatment at @laserandskinsurgerycenter I can’t believe he’s 6 months and has gone through so much already. What a CHAMP! Love you little

Bugün gelmesini hiç istemedigimiz lazer günümüz deniz anneyle birlikte önce işe sonra lazere umarım herşey istediğimiz gibi gider çok ağrılı bir tedavi oldu için bu defa #sedasyon la yapılacak bize dua edin lutfen #hemanjiom #dogumlekesi #çileklekesi#lazertedavizi#portwinestain

Leo loves getting his baths! He loves to kick and splash ❤️ now that’s he’s a little older he gets to take a bath with his brother! I have been so excited for this time. It’s so cute watching them play together.

Today I done my first #birthmark cover up tattoo. Of #portwinestain #portwinebirthmark SWIPE FOR BEFORE PICTURES all trial and error but really happy with progress so far, will wait to see how it heals and go back in areas that need darkening up. #birthmarktattoo #birthmarkcoverup #tattoocoverup #skinart_mag #worldfamousink #sullenclothing #inksav #inkig #inkeeze

Happy Sunday

Hello polka dots Leo did an amazing job yesterday during his 11th laser treatment with @laserandskinsurgerycenter

Aloha. We are home from Maui. We had a much needed getaway. I had a hard time leaving the boys but this was needed for us both. I needed to shut my mind off from some of our reality. I know that sounds odd; but I needed a break from doctor appointments & phone calls. I just needed a break from Sturge-Weber to be honest. I wanted to share a vulnerable moment I had the night when we got home. My emotions were all over the place. I was beyond excited to see my boys but a part of me was dreading my reality with what I have going on with Leo. I started to cry putting Leo to bed...like really cry. I knew we’d be going to the doctor first thing in the morning and then we were going to start him on his new preventatives. I was overwhelmed! I started to pray and ask God to give me the strength for this! Most days I do. Most days I feel ok and trust this process. But there are some days I struggle and just get sad. Yesterday Leo had his 10th laser treatment. We still continue to see great results so we will keep up with treatments for now. Leo is now on the baby asprin (once a day) and Trileptal (twice a day). I’ve had to really monitor him to make sure there are no side effects. Obviously we are praying there are no side effects and Leo will be ok on these meds and they’ll do their job and prevent any seizure activity. Our biggest prayer is Leo will have a normal & healthy life and will fight this horrible disease.

We made it to the city with Leo and had a good appointment with the Vascular Birthmark Anomaly Clinic team. Here’s what we learned... Their neuro radiologist didn’t see any brain involvement after reviewing the MRI but their general radiologist saw something suspicious on the left side that he wanted to have looked over so he is sending it back to the neuro radiologist to have him review that specific area again. However, the radiologist did say that the area in question appeared to be outside of the brain and more on the skull lining. So basically today was inconclusive which I guess is better than saying they definitely saw Sturge Weber. I think the real tie breaker will come when the Sturge Weber specialist from Boston reviews the records! Thank you all for the prayers.