Well, yesterday was Ashlyn's 2 month birthday!! I can't believe it's been 2 months already. Yet, at the same time, I feel like we've experienced more in these last 2 months than most parents will in their child's lifetime!
SO, here's the scoop from UCLA. In pre-op we met one of the doctors who would be performing the surgery, Dr. Schmitz. The doctor that would be heading the surgery, Dr. Coleman, is the one who we were referred to and told great things about as far as her knowledge of Sturge-Weber. We never met her (one of our frustrations with our experience).
We understood that they would be performing an exam under anesthesia, and based on the exam it would be decided whether or not surgery would be necessary. When we mentioned this to the anesthesiologist, she was surprised; it was her understanding this was just an exam. Dr. Schmitz put us at ease by emphasizing that this was a routine procedure. I was surprisingly calm when they took her away and extremely confident in the team.
She needed the surgery and an Ahmed Valve was put in her eye to drain the excess fluid. The exam and procedure was finished in about an hour and a half. Dr. Schmitz met us in the waiting room and told us everything went very well. She was admitted to the Children's Hospital for observation that night. The next day, the doctor who came by for a follow up was neither in the operating room nor had she reviewed the doctor's notes from the procedure. She did a touch test of Ashlyn's eyes and was extremely impressed with the results. We were given eye drops to administer 4 times/day and sent on our way with instructions to follow up with our doctor in San Diego within the week.
Starting about Monday, it was obvious Ashlyn was in pain; I have never heard her scream the way she was screaming. At our appt on the 20th (Thursday) with our doctor (Dr. Jockin), she found that the pressure in Ashlyn's eye was way too low. The good news, the procedure had worked. However, the low pressure has a host of other damaging effects on the eye. Dr. Jockin was surprised that we were only given the one eye drop and told us she was going to take an aggressive treatment plan to help stabilize the pressure. She also mentioned that the low pressure would have caused Ashlyn discomfort :( At this point I was frustrated that we had not been given instructions to meet with our doctor early in the week in the event something like this were to occur. Never mind my frustration that the notes from the surgery had not been faxed to our doctor's office even after I called and made the request while sitting in our appointment.
So now Ashlyn is on a dilator drop 2x/day, a steroid drop EVERY HOUR, as well as the UCLA drop 4x/day. We have another follow up appt on Xmas Eve and were told we would probably need to be seen a few more times that week as well as the week after.
We had our first Neurology appt at the clinic on December 17th. The appointment was uneventful, and after our UCLA experience, I am SO GRATEFUL for our amazing team here in San Diego. It was funny when Dr. Lieberman asked me if Ashlyn responds/knows her name - I said she responds to different voices. He also asked if she preferred to look in a particular direction. When I said she favors looking to the right, he asked me how I knew. ??? I said because I see it. And of course he asked to see her lift her head from lying on her belly, but she was dead asleep. This is now the second doctor that asked to see her perform this developmental milestone and she failed. Ashlyn, you're making Momma look bad!!! :) Yes, I have taken video of her doing it at home and the doctors have not been interested in seeing it.
So, that's the latest from San Diego. It's my first California Christmas and I understand CO is expecting snow on Christmas Day. Snow falling on Christmas is absolutely magical and I am sad I will be missing it, as well as being with my family. Kyle is working Christmas Day, so Ashlyn and I will be spending Christmas at the fire station and I also get to see an old college friend which I am very much looking forward to. We will celebrate on Christmas Eve, and Kyle and I look forward to starting our own family traditions. I said I would make Swedish Meatballs which is a tradition in my family. I think if I can pull them off, it will be as magical as snow :)
Merry Christmas everyone!
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