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.

Tuesday, January 22, 2008


This morning I woke to the Dr.s all coming in Alex's room for rounds....And hearing the news that they would like to dc his Tylenol, thinking it is masking the fevers and other things associated with the infections.... So he won't be going home today either...As I snuggled him I noticed a little bit of yucky coming out of his ears... Sure enough he has infections..So, this makes things really tricky. They know that the infection in his ears can give him the fevers and they also are concerned that the infection is in the clot in his heart... So they don't want to give him antibiotics for the ears so they can make sure that the infection isn't in the clot too....Then when they get the all clear they will give him something for his ears....Ry is holding her own and the grandparents have been amazing...We are good too, a little understandably disappointed, but I would rather be here and get him better before we go home than make a trip back....Thank you for everything...

Joni and Fam, Thank you for your card and for the dinner card... It means a whole lot to us.... As do the prayers..



Anonymous said...

We are thinking of you. Please let me know if I can helpor if youneed me to bring you anything. I am at PCMC Mon & Thurs.

With Hope and Love,
Kaidence's mommy

Anonymous said...

Darn it.....Well, if you are still there on Monday I will come see you again. Goodness knows we'll be up there most of the day if not longer.

Please let me know if you need me to bring you anything. I would say let's do lunch at the Rainbow Cafe, but I don't know that I will be eating much of anything that day....darn nerves!!

Sending lots of ((HUGS)) for you guys!!!

Pam and Rhett