On Tuesday we took the family to CCH for an appointment for Tyler. This one was with the Hemangioma unit. We had not been there for a year. Ty's PWS is very faint and hasn't really changed in the last couple of years. It was darker and more noticeable when he was a newborn. The best news is the doctor's feel it is of so LITTLE concern that they don't need to see us for two years! Praise God! They chatted with me about his developments, observed him in the room, asked questions etc. They asked me how we feel about his PWS and I said we have NO concern right now! We are just so thankful that what we thought it could have turned out to be (Sturge Webber Syndrome) hasn't been a concern at all. It is so faint I would say 95% of people never notice it. So it doesn't even really cross our minds anymore. An appointment for CCH comes up and we're like "oh, yeah- that".
We are on yearly visits to neurology. We are still on 6month visits to ophthalmology. That is the biggest threat due to the placement of the blood vessels near the eye and the possibility of developing glaucoma. But God is good and our little Tyler is doing just fine!
Two Tyler funnies:
The boys have a kids coconut scented shampoo. Ty does not like the coconut shampoo. In the bath he says "I no want polka-dot shampoo." It is ADORABLE!!!
Ty sometimes pretends to be a cowboy. This week he has run through the house saying "Giddy howboy". Again sooo funny! Instead of Giddy-up Cowboy it's just Giddy Howboy! I love hearing him talk. :)