Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Sunday, May 12, 2013


We wore our lucky shamrock outfit to the docs today.. It didn't help:( we are a little perplexed to why May still needs oxygen. She sounds great but we can't seem to ween her of the whiff!!! She really should have recovered already. She is on quite a bit for an other wise healthy kiddo. So our plan is to move past the virus and decide if she has hypertension. We are headed to cardiology. At least it is familiar. She will have an echo this Friday.. If we don't have hypertension we will look more closely at her lungs... With her MRI just around the corner I am going to try like crazy to keep her healthy!

1 comment:

Kelleyn Rothaermel said...

My friends daughter was on oxegon for 6 months. Today she is completely normal.