Life with the oldest sister who loves theater and fashion, a boy who has Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius, but thinks fishing and electronics rule. The most amazing middle-child-sister-aspiring artist. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum who loves littlest pet shops, American girl dolls, playdates. And one yummy baby brother who has a coarctation and bicuspid valve and thinks super heroes are the best.

Sunday, April 13, 2014

Mays Pulmo appointment

May had a pulmonary appointment on Thursday. Ideally we would ditch the oxygen. That was a pipe dream. There were lots of great things like; we don't have to do her breathing treatments everyday anymore. We can be amazed by her progress. She is on track or advanced for her age. She speaks about as much as an 18 months old. She can say 15 to 20 words including: 
Get down
Thank you
Dee dee (Edee) 
Candy (also does the sign)
Mmmmm nummy 
Go (she actually sings this with Elsa/Frozen)

Now to work on the signs and words for book, outside, play and nap. If she can tell me these words, she will be one happy kid. 
Also, we are ecstatic that she is a great eater. Often times NEHI kids work so hard to breathe that eating is secondary. This usually means a feeding tube to help get the nutrients they need. Especially since babies need fat for good brain development. I am so glad that she has done well in this area. 
She is walking around like a crazy lady despite her tether. She gets tipsy when she is off her O's a while, we can't figure out if it's lack of oxygen or if she is so used to having tension from her hose that freedom makes her more unstable. She wasn't a huge fan of the nurse or attending because she is worried about those guys. They usually mean Synigis shots of which she is not a fan. She was friends with doc Uchida until he tried to listen to her. She sounds about the same.. Crackle crackle... 
All in all a great visit. 

No comments: