Wednesday, May 16, 2012

Update: Meeting with Neurologist (5/16)


We met with the Pediatric Neurologist today, Dr. Hector James, at the UF Pediatric Neurology Center in Baptist Hospital and he shared some good news and some so- so news. Susanne Hodge- Mended Littel Hearts Coordinator
904-868-4907 - sairahmom@att.netSusanne Hodge- Mended Littel Hearts Coordinator
904-868-4907 -
sairahmom@att.netRyleighjR Ryleigh does have Dandy Walker but only the Variant form not syndrome, if she didn't have the heart condition it would have been of medical insignificance, but because the brain feeds from other organs - her heart condition had an effect on the development of the brain. So what does this mean?  Her condition will likely affect her cognitive abilities, which could mean how she learns, retains, memorizes, etc. but there is no way to determine until she is 5 or so to see how she performs in tasks at school and home.  Her degree of cognitive disability, which could be undetectable, very mild, significant, or severe (if severe we will know sooner as it will affect fine motor skills as well. So really, this is good news because she won't need brain surgery – there is no cure for Dandy Walker Syndrome or Variant, except therapy to improve the disability. Her brain cyst won't ever go away or shrink anymore, but her doctor thinks her condition will be mild whatever that may be.

We have begun testing our 5 ½ year old as well as he has started to display signs of cognitive delays, he started writing words backwards and upside down. He begins his testing May 24th, oh and that is the other thing, all testing for cognitive disabilities of the brain are non invasive.
Be well!

Cath Lab Tour, Wolfson’s Children’s Hospital

At our last support group meeting (5/15), Mended Little Hearts of Jacksonville, (Susanne Hodge, Coordinator, 904-868-4907, sairahmom@att.net) we did a tour of the cath lab and the different cardiac areas for children to be screened /diagnosed for various CHD’s. It was an amazing experience. Cael also enjoyed it and partook in some of the activities.
video

Monday, May 14, 2012

3D UltraSound - It is FOR SURE a GIRL.

Well we had our 3D U/S on Saturday and boy oh boy this little lady has a personality. She was fine for the first 20 minutes of probing, but after that she said I am done and flipped to the back, we got several nice shots I think. The place we had our 3D images done, invited us to come back in 2 weeks to see if we can get better shots, so here are some for now and know that more will come. She looks so pretty, Craig is all excited because she has my nose! Lol