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
Thursday, April 26, 2012
Wednesday, April 25, 2012
Avery was admitted to Cooks Childrens Hospital yesterday. She has been battling a cough for the last couple of months. We tried antibiotics, steroids and extra treatments but the cough was not going away. Dr C wanted to admit her for a tune up. We had a pretty good feeling that we might have another stay.
So far Avery has had an IV last night and blood work this morning (5am, boo!). She has cried and yelled through both but did stay still which is what is important. She is a very brave girl. She doesn't even know it. Her PICC line will be placed at 2pm and I am praying it goes smoothly. Last stay they had a hard time placing it and it took several attempts. If it goes badly I am afraid of the outcome...a port. We will cross that bridge when we come to it. Overall she is in good spirits. We have already played outside, visited Build a Bear (where Jingle Bear was born), and roamed the hallways with her scooter. Yes, I brought a scooter for her to ride while we are here! She loves it!! We will be here for 10 days and after the PICC line it should be easy the remaining stay.
Our room is much bigger than we have had before. I am sitting at a desk right now! Wow! Unfortunately we are not with the same team of nursing staff we had in the north/south tower. We miss them. They were a great group of people with a lot of energy and smiles. Since the hospital is so full we are over in the pavillion. The staff is different over here. I am hoping as the days go on that will change. We will make them smile!!
Many people have asked what they can do. I love that you all would like to help us out. Thank you. If you would like to do anything it would be for you to either make a donation to our Great Strides Team or post our Great Strides link on facebook.
When you see your baby girl cry so much at getting poked that she pops blood vessels beneath her eyes, it motivates you to make it better. I can only do so much with kisses, hugs, and words of love. We need a cure. We need it today. This will not be our last hospital stay. That means more pokes, more uncomfortable days, more treatments, and more stress on her. I hate it.
Here is the link to donate if you would like: www.cff.org/great_strides/abbygray
We will keep you updated on the PICC line
So far Avery has had an IV last night and blood work this morning (5am, boo!). She has cried and yelled through both but did stay still which is what is important. She is a very brave girl. She doesn't even know it. Her PICC line will be placed at 2pm and I am praying it goes smoothly. Last stay they had a hard time placing it and it took several attempts. If it goes badly I am afraid of the outcome...a port. We will cross that bridge when we come to it. Overall she is in good spirits. We have already played outside, visited Build a Bear (where Jingle Bear was born), and roamed the hallways with her scooter. Yes, I brought a scooter for her to ride while we are here! She loves it!! We will be here for 10 days and after the PICC line it should be easy the remaining stay.
Our room is much bigger than we have had before. I am sitting at a desk right now! Wow! Unfortunately we are not with the same team of nursing staff we had in the north/south tower. We miss them. They were a great group of people with a lot of energy and smiles. Since the hospital is so full we are over in the pavillion. The staff is different over here. I am hoping as the days go on that will change. We will make them smile!!
Many people have asked what they can do. I love that you all would like to help us out. Thank you. If you would like to do anything it would be for you to either make a donation to our Great Strides Team or post our Great Strides link on facebook.
When you see your baby girl cry so much at getting poked that she pops blood vessels beneath her eyes, it motivates you to make it better. I can only do so much with kisses, hugs, and words of love. We need a cure. We need it today. This will not be our last hospital stay. That means more pokes, more uncomfortable days, more treatments, and more stress on her. I hate it.
Here is the link to donate if you would like: www.cff.org/great_strides/abbygray
We will keep you updated on the PICC line
Friday, April 20, 2012
Sunday, April 15, 2012
Photo Fundraiser
We had a great time yesterday at the photo fundraiser for CF. Charlie Prenzi is an amazing photographer. Some of the pics I saw are going to be AMAZING!
If you would like to book with the fundraiser let me k now. There are only 9 spots left for April 21st: 2:00, 2:20, 2:40, 3:00, 3:20, 3:40, 4:20, 4:40, 5:00 Hurry and book today!
If you would like to book with the fundraiser let me k now. There are only 9 spots left for April 21st: 2:00, 2:20, 2:40, 3:00, 3:20, 3:40, 4:20, 4:40, 5:00 Hurry and book today!
Friday, April 13, 2012
Questions
As parents we all know those inevitable, yucky, uncomfortable conversations will happen with your kids. For example when a loved one passes and you have to explain life and death or the dreaded "birds and bees" talk. Well in our CF world I knew Avery would one day realize she is different from other kids. Today it happened.
Me: Avery we need to do shaky puff-puffs. Go to the bathroom and we will start in 5 minutes.
Avery: I really don't like doing shaky puff-puffs
Me: I know, but we have to do them so you don't get sick.
Avery: Do my friends have to do them?
Me: No, they don't.
Avery: They are going to get sick then mommy.
Me: No, they will not because they don't have Cystic Fibrosis.
Avery: Why do I have Cystic Fibrosis?
Me: Because God sent you down from Heaven to us with Cystic Fibrosis.
Avery: Okay I understand.
It was that simple and dropped without further questions from there. But our little bubbled life has changed a bit. Avery now knows (how much I am not sure) that she is different. My only hope is that she doesn't come to resent Cystic Fibrosis. I am so fearful that in her teens she will rebel and not do her treatments. I want to raise a confident woman that owns CF.
Like I said, we all know those conversations will come, but you only hope you do the best you can when they are in front of you. I hope this was one of those times:)
Me: Avery we need to do shaky puff-puffs. Go to the bathroom and we will start in 5 minutes.
Avery: I really don't like doing shaky puff-puffs
Me: I know, but we have to do them so you don't get sick.
Avery: Do my friends have to do them?
Me: No, they don't.
Avery: They are going to get sick then mommy.
Me: No, they will not because they don't have Cystic Fibrosis.
Avery: Why do I have Cystic Fibrosis?
Me: Because God sent you down from Heaven to us with Cystic Fibrosis.
Avery: Okay I understand.
It was that simple and dropped without further questions from there. But our little bubbled life has changed a bit. Avery now knows (how much I am not sure) that she is different. My only hope is that she doesn't come to resent Cystic Fibrosis. I am so fearful that in her teens she will rebel and not do her treatments. I want to raise a confident woman that owns CF.
Like I said, we all know those conversations will come, but you only hope you do the best you can when they are in front of you. I hope this was one of those times:)
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