I suppose Kyle and I now have a unique perspective on medicine, but I find it interesting that some advances in medicine are accepted and celebrated, and yet others are constantly under attack. I can say without hesitation that modern medicine is keeping our daughter healthy and alive. We ask hard questions and do our best to understand, but most of the time it's weighing the benefits with the possible risks. Thankfully we are surrounded by a medically inclined family who can help translate for us when needed. :)
All is well here in the O'Neill household. Ashlyn is off all eye drops with the exception of an antibiotic but we'll take that. We met with her dermatologist yesterday for the second time since Ashlyn was born, and are so grateful to be in his care. As wonderful as Ashlyn's "team" of doctors is, the only one that really understands this syndrome is her dermatologist. He told us that the last time the NIH did something with Sturge-Weber was 10 years ago (ie. major funding)!! You can imagine all of the advances in research and medicine since then.
Due to some push back re. the laser treatments from both our Neurologist and Ophthalmologist, primarily because of the use of anesthesia/sedation for each treatment (6-8 treatments), Dr. Eichenfield said he would contact them to make sure everyone is on the same page. He has ZERO concern about going forward with the laser treatments and has seen many patients with Sturge-Weber. Our next appt with him is in May, and provided the "team" is all on relatively the same page, we will proceed with the laser treatments. With that being said, I have to say that I take great comfort in knowing that our team is tending to react more conservatively!
Our next Neuro appt is next week and we anticipate that Baby Aspirin will be added to Ashlyn's medicine routine. There is little known risk to Baby Aspirin use other than bleeding/bruising more easily, and the benefits to individuals with Sturge-Weber seem to be remarkable. SO, we will proceed :)
In other fun news, we were visited by my family for a few days! We had so much fun and it was my brother's and his girlfriend's, Megan, first time meeting Ashlyn. We had so much fun. Andy and Meg went to Peru recently and brought back a blanket for Kyle and I, earrings for me, and an adorable sweater, gloves and hat for Ashlyn as well as an incredible handmade mobile. The mobile hangs on our exercise bike and Ashlyn just loves to watch it move!
We also made a road trip to see more of my fam up in the Bay Area. We took 2 days to get there and on the second day at a quick bathroom break in Big Sur, we ran into someone who went to high school with Kyle. Then at another stop in Carmel, a woman with a port wine stain on her cheek came over to say hello. She is 24 years old, a teacher and loves her birthmark. It was refreshing to hear from someone who embraces her port wine stain.
We stayed with my cousin Anne and her husband Renn and 6-mo old daughter, Brenna. So much fun! Then saw my aunt Cathy, uncle Ray, my Nana (Ashlyn's GiGi), and my cousin Kara and her family (including almost 1 year old Laine and brothers Trey and Wes) and cousin Dave and his girlfriend. It was quite the gathering!
And so I return to work on the 4th. I know this is the best thing for our family, but I am going to miss spending the days with Kyle (when home), the Pugs and Ashlyn. I've had my share of breakdowns this week... but I hear it gets better quickly :) Good thing we live close so I can get my Ashlyn fix in at lunch if need be!
I think that sums up the latest and greatest. Ashlyn is calling so will sign off now!
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