A busy Week

It has really been a busy week around here. The social worker for the Alabama Institute for the Deaf and Blind called and said that Bailey qualifies for services. They will come next week to write out a plan of care for her. She will see a vision specialist. She needs to see a physical therapist, but they are in the process of hiring one. I don't know how long that will take so we may have to find alternate care for that.
Wednesday Dad and I took them to the preemie follow up clinic that another mother told us about. To qualify for this clinic you have to be either 26 weeks or less or less that so many grams. We definitely fit the bill on both accounts. They were a very kind understanding group of people. As you know when talking about a preemie you go by adjusted age not real age. On their birthday they will be the adjusted age of 8 1/2 months. Developmentally Wyatt scored 2 months ahead of his adjusted age. Bailey scored 2 months behind her adjusted age. They said she definitely needs physical therapy, and they are working on getting that provided for us. The Dr seemed to think her developmental delays are due to her sight problems. We totally agree. While she can see now, there were months where she saw nothing or very little. I feel that poor little Bailey fell through the cracks. Someone should have told us before now that the AIDB was available to us. She qualified by diagnosis alone.
I am sad and very angry. Everyone looks at the twins and say they look healthy now. I just want to smack them. Do they really look like 1 year old babies. No!! They have seen or are seeing the following health providers since they have come home: orthopedic, GI, occupational therapy, physical therapy, ophthalmologist, surgeon, urology, CCAD, neonatologist, pediatrician, and AIDB case workers. They have to receive synagist shots every month this winter just so they hopefully don't get RSV and die. The shots cost over 3K a month and thankfully our insurance pays for most of it. I FIGHT for every sip or spoonful of food they ingest. Does this sound normal? Ah the life of a parent with a micro preemie.....