Dupont

Well life is still a bit crazy here for us. I am trying to stay positive in light of it all. This is not such an easy task for me. We are hoping to fix the car one day next week and I think the computer is fixed.

Yesterday we spent the day in Delaware at Dupont Hospital. Noah did great on the drive. He barely cried at all and seems to be doing better in the car. We made it there by 8:15 but were taken late at 9am. The eval was over at 2:30pm. They asked us alot of questions, had us fill out alot of forms and questionaires. Lillie answered some questions and then did several test to rate her cognition, listening skills, math skills, language and other age appropriate things.

By the end of the day we were told that they need to review everything and have us come back for a follow up and then and only then would we receive a diagnosis and treatment plan. The one thing they did offer was an option for feeding. We had been told once about a feeding program at CHOP that last one month M-F from 8-4. You drive down, stay all day in a feeding clinic where your child receives all their meals in a controlled environment and eats nothing outside of that time. We thought it a bit much and not needed, plus it sounded like an ordeal to get to the city each day etc. Well here we are two years late with only worse news to report. Now they are telling us Hershey Medical offers the same program except the family lives in the Ronald McDonald house for a month so you do not need to travel. It still seems like such an extreme option and I question if its the best option. No other options are being offered because we already tried them all and things only became worse. We have heard the expression so many times that Lillie must be a picky eater but that is by no means a proper explanation of what our little girl deals with when it comes to food.I rather not go into all the details but trust me when I say she has some very serious beliefs, rituals, and fears when it comes to food.

We continue to pray that we will receive the help we need for Lillie and that Dave and I can stay on the same team and not allow this to strain our marriage anymore. It is not easy when your child struggles and you feel helpless to "fix" it.