Thursday, May 15, 2014

MRI Update...


Today we headed out early this morning to Seattle Children's to see Raygen's neurologist.  We got the news we expected, but before I get to that I had to share pictures of us at the park today.  We have been keeping Raygen indoors to try to keep her as healthy as possible so for a treat today we stopped by the park on the way home and had a picnic and went for a hike.
It was beautiful out.
I think Raygen enjoyed herself.  She loves being outside and loved taking a ride in her stroller.
So the results:  She does have a spot that is damaged in her brain possibly from a stroke, several strokes or could be damaged because of her heart condition that causes Raygen's right side to be weaker then her left.  Raygen does every thing left handed and with her left foot it is hard for her to use her right side, but she does have days where she uses it a lot.  From the Neurologist point if you were to have a part of the brain to be damaged then this is the spot to have.  It is very small and there is nothing we can do about it and we will never really know what caused it.  There is nothing to explain Raygen's development delays, but that is good news as well.  Raygen has great arteries in her brain which is a huge concern for heart kids and the blood flow is great.  From this point we just continue with therapies.  If at some point we want to dive further into neurology we can do genetic testing, but since Randy and I are not having any more children I don't really see the point to it.  The one appointment I will make in the future is to have a neurological assessment.  Raygen will sit down with a few doctors and they will play with her and see where she is development wise and help us diagnose any conditions she may have such as o.c.d etc.  This may be helpful information to learn so we can interact and communicate better with her in the future.
So our next step is to see Dr. Park within the next few weeks and discuss her cath results further and discuss a possible surgery timeline.  We see G.I. in June and then we also need to see the E.N.T. docs in our future as well.  Never a boring day in this house :0)
Overall an AMAZING WEEK!  We couldn't have asked for things to go better.
Thank you again so much to everyone who prayed for our family and Raygen this week.
xoxoxo

Erin