Can you believe Ty weighs 20lbs, 12 oz at 5 1/2 months?!?! Time to switch carseats...he can't even sit up on his own yet! Ty went back to CCH today for his two month checkup on the PWS. Andy picked me up from school at 1:15 and we arrived back at my mom's to get the boys and 7:30pm. It was a long day. We had 1 scheduled appointment in the Vascular Malformation center and ended up having a dermatology consult as well. Similar news as before though this time I had a few more questions. I found out that laser treatment for PWS has only been around for about 12 years so there isn't data to show how well the treatment works in the long term. IF Ty's PWS changes (darkens) and we decide to do laser it will require anesthesia and will feel like snaps from a rubberband and will also feel like a sunburn. Dr. E said they want PWS's to lighten to look like Ty's looks now with the laser so there is no point to doing it right now. I was able to discuss and keep up with what he was saying from reading on the nova website. He wanted a second opinion from the dermatologist. He does want us to keep our Neurology appointment.
When the dermatologist came in she talked to us more about Sturge Webber syndrome with the location of his PWS. She said even though the PWS isn't causing SWS right now, it could in the future. It is something we will have to watch for. She feels strongly that Ty should be tested for glaucoma 3-4 times a year due to the PWS being around his eye and on the eyelid. She also noticed that the cheek with the PWS is slightly fuller than the other cheek. First time this had been brought to my attention.
So, good news overall. Next steps: watch for normal development and attend next 3 scheduled appointments.
May- Eye appt at CCH
June- Neurology appt at CCH
August- Vascular Malformation appt at CCH
We're hoping the glaucoma tests can be done here after the next one we have at CCH in May to cut out some of the trips there. We are so thankful for Ty and blessed to have another wonderful little boy to love on. He gets so many compliments everywhere he goes about how cute he is! He is such a good baby too. We love you Tyler Wade!