We are home bound today! I am so excited, but will try to be patient as it will take until the afternoon to get out of here.
I apologize for not updating everyone as much I have. I will give you some highlights...and low lights of our stay. We have had many visitors to come and cheer us up while we have been here. Thank you so much for coming and putting a smile on our faces. The day to day of the hospital can be gruelling so your presence was so appreciated! You know who you are!! Avery has become quite the matching pro. She recieved a matching game and has been playing against all of her respitory therapists...and winning! hehe! She has quite the memory. We have appreciated the wonderful staff here at Cooks, but definitely miss our 5 north and south area. This area is a bit more quiet and we liked the lively atmosphere of the other area. As you all know Avery has a lot of energy and we have to run around to get it all out!
This biggest low lights of the trip have been her endless pokes. We had two nights of pokes at 11pm and 5am. Poor thing had track marks up and down her arms. I feel so bad for her to go through this. She has had a couple more pokes after that.
Avery did her first PFT yesterday. We went over to the pulmonary clinic and she sat in an enclosed half circle, they clamped her nose and she blew into a tube. The whole trip over there and during she was crying endlessly. I was trying to comfort her, but found my patience level declining. Avery has a hard time with anything new. She gets scared for xrays and tests even though they are not going to hurt her. Whenever she has a new test we talk through it and I tell her all I can about the test so she will not be scared. I am always honest about the test, whether it be pokes or easy stuff. Unfortunately she is still scared, but we are trying to foster her trust in us and the staff. So back to the PFT....she was crying through it so I didn't think she had done very well. Dr C came through on his rounds and she had tested above 115%!!! So her lungs are healthy. We are going to keep her running, screaming, jumping, dancing, flipping, cartwheeling whenever we can to keep building her lung strength!
Thank you for all of the prayers and support during this stay. It is always a draining process, but with all of our family and friends you help up through it. Thank you so much for everything! We love you so much!!
Abby
