Thank you all so much for asking how we are all doing. It's so great to know we have so much support. Ailyn has had no more seizures that we know of. Of course she has not been out of my sight since. Even Daddy got her out of the crib last night because she "moving all around". So we both worried sick over her. She has an appointment with the seizure clinic early next week.
We also decided to cancel her feeding tube surgery. This was a very hard decision. But, we both feel that the seizure overrides the feeding tube. She is not underweight, although she is tiny...she is gaining weight. Just not "catch up" weight. She is finally meeting more of her milestones and has made huge improvements with her gross motor in the past few weeks. The doctors of course are not happy but again said it was our choice.
Ailyn's blood pressure is still not under control either. They increased her medication and we had blood work and a pressure check today. It is still higher than they would like it to be.
So with the seizure and the high blood pressure, we feel putting off the surgery is the best for Ailyn. We lost her once, so we are very overprotective of her :)
So thank you, thank you for all the calls, emails and Facebook messages. It helps me get through these tough times knowing we have great family and friends looking over our Strawberry.
