The Waiting Game

Today I am thankful for Lauren and Jake - who have provided a welcome distraction from worry. You can only worry so much when there are fire trucks to play with, ponytails to make, stories to read, T-ball games to go to, and fights to referee.

Today was also a frustrating continuation of our efforts to nail a game plan. The neurology appt continues to be elusive. It's a classic example of why people are so fed up with our health care system. After 3 days and at least 15 calls to the neurology dept at Children's - verifying our referral and waiting for them to review her case - late today I was told our case had been referred to neurological development (an adjacent, but separate dept). Dr. Dudas had mentioned this on Monday and the dots just finally got connected at Children's. So I called neurological development and was told that they had received the referall, but would need 48 hours to review the case - seriously. I expressed disappointment that it was going to take a week just to get an appointment on the calendar and the scheduler explained that I wanted my case reviewed or the first appt available is in August! So frustrating....if we don't get an appt scheduled tomorrow I'm calling Dr. Dudas to see if he can help.

On the positive front, we have an endocrinology appt scheduled for June 4th now, which happens to be the same day as our next opthamologist appt. Little Taylor will have a big day. Of course we want every appt tomorrow, but at least these are 2 appts on the books. We keep reminding ourselves that it's a blessing that she isn't an "urgent" case, but patience is not our top virtue. We'll continue to be as vigilant as we need to be to get her the care she deserves (the best!).

Tracy provided good peace of mind after reviewing our case with several of her neurology colleagues. It's a good sign that Taylor's vision and pituitary are functioning well, and that she's hit the developmental milestones that she has. We're sending Tracy our MRI scan to review with her colleagues and looking forward to their opinion. She's also finding specialists for us - so far in San Francisco and Boston - so we'll likely follow up on this too once we have our baseline information collected. Shawna also provided invaluable guidance - to gather reports asap from everyone we meet. We're learning that we will be responsible for ensuring that all of these specialists have the info they need and that we're on top of it.

Today ended with Taylor smiling, laughing and cooing. As I rocked her to sleep she practiced her favorite new trick - grabbing her binky out of her mouth - she thinks that is very cool (and good validation for her coordination!). She watched Lauren twirl in the outfield at her T-ball game tonight and earlier today laughed at Jake as he ran circles around her exer-saucer. Taylor had a very smiley day and I wish you all could see her. These are the gifts that give us hope and make us so grateful for everything we have been blessed with.