Need a Break...

Nothing is ever Nothing...We had our "expectation" chat with the doctor today. He gets all of the reports from the other doctors, they all kind of work together. He just wanted to check in to see what our expectations were of Oliver. I told him that right now we are so confused that we don't know what to think. I was honest with him and told him we are getting really tired of the doctors telling us we need to see this doctor now and have this test done and he may have this certain disease that is life threatening. He said that we needed to have an honest discussion about what he thinks. I told him to give it to me straight, knowing deep down what was coming. In his expert opinion (he has been doing this for 25 years) Oliver most likely will NOT walk, will be more on the severe side of mental retardation, and most likely will display some form of Autism. (Knife through the heart, didn't think it would be that much). He said many kids with ACC don't starting walking until 3-5 years of age(these kids don't have other brain anomalies like Oliver). He did say he has been wrong and LOVES to be wrong in these cases. Considering all of Oliver's brain anomalies the chance of him walking is not much at all. As far as the other milestones, sitting, crawling, rolling, etc. we really don't know. He did say there was a small chance Oliver could have some of those life threatening diseases but did not think that right now we should put Oliver through any more tests unless we wanted to. He said they are painful and there wouldn't be much we could do. I agreed with him, we "Need a Break" from all of "this is what is wrong with Oliver" and need to focus on therapy where the outlook is, "Wow, look what Oliver can do." This was really hard to hear but it was needed and I really admire him for telling us. So, he might walk and talk, he might talk and not walk, might sit or not, we don't know. We just are going to do the best with this. Now the thoughts will be when he does get bigger, when is it time for a wheel chair, and finding places to live that are accessible. I know many of you are thinking that we are giving up hope, don't say this to us please. We are not giving up, just being hopefully realistic and thinking ahead.

I know that everybody means well and we really appreciate everybodies love and prayers. It is hard not to say, "Can Oliver sit yet? Can he roll?" Trust me, if and when he can do these things, you will hear us screaming it from our window! Oliver is also at times starting to develop some strange breathing patterns, also normal in children with neuro issues. The doctor said to get him in as much therapy as possible and to just enjoy him. That's our plan, Monday I will start looking for additional therapy besides our fantastic team and hopefully we will have less bad news on here and more of, "Guess what Oliver did today in therapy."

Adina update: She is talking a lot, lately she has been fighting bedtime and nap time and just wants me to snuggle with her. Today, daddy put her down for a nap and she did not want to go. She screamed and screamed until I finally went in. Adina said, "Mommy I am so sad and I am crying." "Why are you crying and sad Adina." Tears...."Because daddy is really really naughty (insert more tears here)!!