Posted (Tina) in All Posts on April-6-2009

Ella did amazing last night. She is officially a night owl and did not go to bed until 11pm, but then she slept the entire night straight through! Her sleep patterns are SO much more normal without Captopril. We are averaging 0-4 times per night…so much better.

She was not up for much of her exercises today, including feeding and sitting up. However, she still had a good time playing with Kelly. And as long as Kelly didn’t ask her to do too much that she didn’t like, Ella was full of smiles!

We received a call pushing her appointment with Dr. Fagan further out till April 23rd. This is her follow-up to her SVC procedure (chest xray, echocardiogram, etc.). So we will need to wait a bit longer to make sure that everything looks good. Clinically, her numbers look great which is reassuring.

She has stabilized on her weight gain and is pretty much staying at 10-10.1 kilos (22 pounds). Dr. Abman wants us to stay at this current food regiment until she has her appointment with Dr. Fagan to make sure we are not pushing too much fluid into her before she gets everything checked out.

The pictures from today make my heart smile. I just love my baby girl so much. The past two years have been such a challenge and yet, I cannot imagine my life without her. She brings so much joy.