About Me

Our Avery was diagnosed at one month of age with Cystic Fibrosis (CF). CF is a life threatening genetic disease that affects the lungs and digestive system. We are working hard to find a cure. This website will keep you up to date on Avery and our fundraising efforts for the Cystic Fibrosis Foundation.

Thursday, April 26, 2012

Avery is now taking a much needed nap.  She had a very busy night last night. 

They had to poke her at 11pm and again at 5am.  They have to do a peak and trough on her tobramycin infustions.  So after a PICC line placed yesterday and very late night respitory therapy Avery finally went to sleep at 10:30pm.  When they came to do the poke she was asleep...hard.  I tried to wake her up, but she wouldn't budge.  So the nurse and I thought she would sleep through it...(bad mommy)...NOPE.  She woke up with blood curdling screams.  She did however pass out right after that.  They came again at 5am.  This time I woke her up and yes she did scream.  She keeps asking to go home....:(

On a funny note I scared the bejesus out of the late night nurse.  I obviously am not sleeping that well, but finally passed out around the same time Avery did.  The nurse came in to give Avery an infusion and I heard someone in the room and I screamed at the top of my lungs.  I had forgotten where I was and thought I was at home.  Mike can attest to my screaming in the middle of the night when I get startled.  I apologized all over myself and am giggling about it now.  She said that was a first for her.  :)

Avery was so excited to have guests today, our good friends, Julie, Lucy and Zoe came to visit.  It was much needed.  After the last couple of days we needed a pick me up.  Lucy and Zoe came right when Avery was doing music therapy.  They joined in and got to play a piano, xylophone, drums, and a guitar.  Zoe is quite the musician!  The girls also brought their own build a bears so we took them down to get a bath at the shop...so cute.  We got some fresh air and played on the playground and then we headed back to the room for shaky puff puffs.

We are very much looking forward to Mike arriving tonight.  He has been sick so I have been here by myself.  I am looking forward to a break outside this room. 

Much love,

Abby

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