Update from Linda and praying for Joey, too

The music therapist comes for 4 hours and sees 4 children- one hour each. Hosanna went last, and she had been awake for the first three children but when it came to her turn- it was her nap time- hard to judge her participation but she is responding to my voice . She moves her head around alot- like Stevie Wonder style...and when I talk- she seems to stop moving and listen : ). she had a nurse come this morning to draw blood cultures and de-access her port.

She is making noises now!!! It's like she is twice as loud as before. I don' know if it is because she missed her voice or because she needs to be twice as loud to hear herself- but regardless- she is loud!!! so wonderful NOT to have a quiet child!!!!

Now about Joey- sending Joey to the doctor today was really hard- I took about 10 pics before he left, he was alert and bright and playful and looked so healthy,, but we knew...his shunt was draining at the site and his catheter that runs behind his ear and into his belly was swollen and red and hot and hard..you know the type. when the area is hard and hot. He didn't seem to notice at all but we did...so we packed him off to the neurosurgeon who will operate tonight, augh!!! and pull the shunt and put an externalized shunt- which means ICU. He was so content when he left and making such progress after last years bout with this.

Please pray that Joey's surgery goes well and that the infection is contained in the distal catheter and not in the brain, please pray it doesn't spread and it responds quickly to the medication. He gets Red Man syndrome from the vancomycin and Vancomycin is another one of those drugs that can causes deafness.

Note from Perri -- I think Joey is about 18 months old now.