Update - September 10 (first day at Yale!)

Today - so many things. Our little girl is exhausted and so our we!

We got a call this morning to let us know that Lydia had a pretty substantial seizure last night accompanied by a large drop in her oxygen. They had to use the bag to get her back up, she turned blue, the whole bit. The wonderful thing about being at Yale is that right after that episode, they called a neurology consult down to see her. At Bridgeport, they would have had to wait until the morning and then call her neurologist to discuss and he (without seeing her) would have made recommendations.

Today when we arrived, neurology was down with her again and she was having another EEG. They did a variety of tests to see how responsive she was and they were actually very encouraged by her responses. Though her responses were slow and somewhat weak, she was responding and that was more than they thought she would do.

She was visited today also by cardiology who did another ultrasound of her heart. Also ophthalmology came and checked her eyes again (she’d had one at Bridgeport). They said that her eyes looked good. She had an ultrasound of her belly as well to check and make sure her organs were in tact and functioning. We haven’t heard anything back at this point about that. She was also visited by several geneticists who are the ones who we are really hoping will put a name on what she has.

We’re so thankful to have her at Yale. It’s amazing to watch the efficiency with which things get done. We do miss the environment at Bridgeport and we’re so thankful that she could spend the first weeks of her life there as they took such good care of her. We trust now that she’s in the right place. Her new neo-natologist is wonderful. He’s very kind and attentive, he gives us information clearly and answers all of our questions. His goal is the same as ours - to get her seizures under control, her breathing stable and to get her home.

She was having little seizures all through the day and the neurologists decided that she needed to get put on another medication. They had one set to go, but the think her liver is working to hard with the medication she’s on now, and the second medication has similar enough properties that they didn’t want to put her on it. They chose another medication (which is one that doesn’t have to be given through and IV, thankfully). We called a little while ago to check in on her, and she hasn’t had any seizures or desaturations in her oxygen levels since they started the new medication. PRAISE GOD!

We told our doctors, nurse and the geneticists that they are currently being covered in prayer from all sides, so please don’t stop lifting them up to our God for wisdom and discernment on how best to diagnose and treat Lydia. Please also pray that this new medication will keep her stable and seizure free.

When we could stop and take a breath today, we found ourselves thankful. We hope that in the midst of your crazy, stressful lives you will have a moment and be able to find the same thing. He is good. There is no doubt about it.