Friday, September 24, 2010

Not The News We Were Hoping For...

We had Lucca's follow-up Neuro appt today to go over all the tests that were ordered in June from our first visit. (i.e. bloodwork, chromosome tests, MRI, etc.) We knew that the chromosome test came back abnormal, and he just went over that a little bit saying that it was of extreme concern and was most definitely the cause of his delays, but he didn't know how serious the case or to what extent it would be and that we would have to wait to talk to the genetic doctor next month because obviously that is his specialty... also his MRI came back that he has some extra fluid around his brain between his brain and his skull cap, but not enough to be considered hydrocephalus. He told us that he doesn't think Lucca has any sort of autism because he is such a social baby and smiles, laughs, makes eye contact and plays well.. so thats a good thing =) We asked him if he thought Lucca would ever walk/talk, etc and if he had ever seen any cases before similar to Lucca, how are they now, what are they like,etc.... For the walking/talking he said it was "very hard to say.. he might not.. he might. Hard to tell." And he said he has seen cases like Lucca and "they are very slow progressing, and usually do not catch up to a "normal" level. They are slow their whole life and need constant and special attention. There are some cases where they stop progressing, start regressing, and die at an ealry age." Gee doc thanks, thats exactly what I wanted to hear this morning...ya know? I do not think that Lucca's case is THAT severe..I certainly HOPE and PRAY not anyway. So we have to go get more bloodwork that is more specific to the chromosomes and repeat some bloodwork that came back abnormal last time.. and of course they couldnt get any blood out of either arm this morning so we have to go back this afternoon and try again.. so that's where we are right now..definitely not what I was wanting to hear at this appt but we will go with it and hope for better news at the genetic doc appt. Just please continue to keep us and Lucca in your prayers. =)

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