Report from the Developmental Pedi

[shellsbells]

After waiting months and months and months (18 exactly), we had an initial parent session, where the doctor confirmed my DH and I seriously need a night or two away. He then did 3 sessions with my DD. One of which, he showed her pictures of a 1980's style touch-pad phone and she said it was a calculator (whereas if he had shown an iphone she would have said phone). We had the final report out last week and I am still digesting it.

The doctor pretty much told us cognitively DD was functioning at about half her age with her communication skill and a few other things slightly more advanced. 

The good news is her development is not stagnant. Her development is coming very quickly, maybe not exponential growth, but definitely compounded. He wants to see her again in 3 months. He was also a bit perplexed because she has low tone and decreased reflexes. Usually with brain incidents they see the opposite. There is a type of CP that is covered by this - but no one has yet to say CP to us in a very long time.


The other good thing was he thinks we should start thinking about tube weaning, which to me has always been daunting. I am talking to a few feeding therapists and our GI on how we will proceed with this and the timeline to do so. 


Has anyone else received a similar report? Or have any words of wisdom? We are stepping up aquatic therapy to help with her tone issues. 

[bubbalicious]

I think those reports are a kick in the teeth...no matter how prepared you are for them.

How old is your little one? Shells...I know I should know this but it has been a pretty weird time for us...my apologies.

[shellsbells]

She turned 3 in late November so about 40 months old. They said cognitively she was about 21 months.

[bubbalicious]

I don't want to give armchair advice b/c I just don't feel savy today. Your post caught my eye. I will give you my 3 yo dev pedi appt.

I knew ADHD was on the table before we walked in the door. The dev pedi surprised (punched me in the gut and I cried) me when she said if your daughter continues on this path she will be mentally retarded (in dsm at that time). Now at age 8, through years of testing, therapy, struggles...we have found her language is what impairs her learning. Maturation has made a big difference with all that therapy and she is progressing. We are pulling her out of the mainstream.

Not the same situation but that punch in the gut-totally get it. Keep up the good fight. Also we ride with a girl who had brain surgery (cancer) and I don't know her residuals but her right hand and arm are visibly weaker. She is in a mainstream classroom. I don't know all her details but she has come a long way

Do you have respite? A nurse friend who could help?