Friday, February 1, 2013

Hi Aiden, Doc Updates, Wearing Red....

Wednesday before Raygen's ENT appointment we were able to go visit our heart friend Aiden.  Aiden was born about two weeks after Raygen (Also an HLHS baby), but we spent a lot time together with him and his wonderful family.  Raygen and Aiden were in the same room in the CICU for a long time.  Raygen was in the hospital 3 months after her Norwood.  Aiden went home a few weeks later.   
He is an amazing little boy.  He is walking, talking, eating and just being a normal toddler.  Were so so so proud of him. 
They are so cute together. 
 They played a little together but mostly just watched each other.
This is really the first time Raygen has sat down to play with anyone close to her age so it was exciting to watch. 

Aiden's wonderful mom Elsa with Raygen.   
"Aiden you are just so cute." 

Raygen and I waiting for her ENT appointment at the Children's Clinic in Bellevue.  She liked to play with the Starbucks straws. 
I just love this hat.  I think it totally matches her personality.

ENT UPDATE:
So Raygen's ears looked great!!!  No infection and the tubes were in perfect placement.  She also had a hearing test and seemed to pass it for her age, but they would like to repeat it in 6 months.  I don't think Raygen has any hearing loss I just think she has selective hearing, lol and hears you when she wants to.
BLOOD DOC UPDATE:
So yesterday we went to Seattle and saw the blood doctor.  Overall, nothing exciting.  She doesn't feel like Raygen has a blood disease because there is no family history of blood clots or early strokes on either side of the family.  She said she could run some test to check a couple things but even if she did it would not change the way we care for Raygen in the future so we decided not to bother.  She was going to talk a few things over with Nero and get back to us on her final report.  She did let us know that we didn't have to worry about her current blood clots breaking off and traveling to her heart. 
NEXT WEEK:
So next week we head to Children's again for Raygen's PT Exam and she also will receive her Syaginse shot.  After the PT exam all the doctors will send their findings to Nero and then we will look into scheduling the MRI of her brain.  Raygen's Cardio Doc thought he may also want to get an MRI of her heart at the same time.  This will allow him to really see the connections that she had done during the glenn surgery and see how they are holding up.
February is HEART MONTH!!!
PLEASE WEAR RED EVERY FRIDAY FOR RAYGEN AND ALL CHD BABIES!  THIS IS THE MONTH OF LOVE AND HEARTS AND WE NEED TO SPREAD THE WORD. 
 
 
 
Hope everyone has a great weekend.