It has been too long since I posted. I think I will take it as a good sign that Avery has been doing well.
Tomorrow is Avery's 5th birthday! I am stunned she is going to be 5. Childhood is going by too fast for me to take it all in. At times all we focus in on is her health and forget to enjoy the little things. But more often than not we do appreciate all that is Avery. She is a wild, loud, vivacious, smiley, happy, outgoing and shy, funny, caring, thoughtful, sweet girl. Mike and I are very proud of her and love her deeply. This last year she played soccer, gymastics, and cheer. Currently she is in gymnastics and cheer. She is enyoying each of them but is asking to play soccer again. I can't keep up with her!
She also started preschool at Rainbow Days at our church, St Jude. Her first day of school she took off and forgot to even give Mike and I hugs! Every day is like that with her, she leaves me at the door without even saying goodbye. She loves her school and her new friends. Recently she is telling me she has a boyfriend, but gets very embarrassed if anyone asks her about it:) I keep telling her she is not allowed to have a boyfriend but keeps laughing me off. I might need to get more firm on that:) Last week we had parent teacher conferences and Avery is excelling in every area, but needs to work on upper and lower case recognition. I know Ms Avery will rock Kindergarten!
Avery's health has been okay. She has had a few colds/bugs along the way, but overall has been okay. The times she gets sick we increase treatments and usually she goes on steroids to get over it. In the last week she has started a type of wheezing when she takes a big breath. We are headed in today to have a look at it. She is very excited to do "the blowing machine." This is her lung function test called PFTs. She started that after her last hospital stay in April. The first three times Avery had an ever loving fit. She sat in my lap while screaming and kicking me. They put a round tube (about the diameter of a ping pong ball) in her mouth and plugged her nose closed. They ask her to take a deep breath and blow completely out. When I say completely out...I mean it. I practiced with her and it is pretty difficult and uncomfortable. But the highlight of the "blowing machine" is a prize. So I am thinking this is why she loves to do it now. They are smart at Cooks, bribes work with kids! She has been consistently about 100% in her PFTs, which is amazing. It has been very nice she is finally able to do PFTs. The couple of times her cough was bad we would go in and she would be above 100%. With the test it has alleviated the discussion with Dr C and I whether to go in for a tune up or not. Now it is black and white. If her lung function decreases we know it is time for a tune up.
With her recent wheeze I am concerned and have asked to go in early (we go every other month usually). This is the first time I have pushed my way in early to be seen. I am probably overreacting, but better safe than sorry.
On a fun note, we are starting up our Great Strides team this year. I am yet again the Chairman of the Dallas Walk, but think this might be my last year. This is my fourth year to chair and am very proud of how much it has grown. I am hoping to pass the torch to someone that can take it even further.
The walk is on May 18th at Fair Park in Dallas. If you are in the area we would love to have you walk with us. Avery thinks the walk is just for her and we love it. Mike and I always envisioned the walk would be a time for us to all surround Avery and support her in her battle. She fights this disease each day with daily treatments and pills. We take one day to let her know we are there to lift her up. So if you are interested please visit www.cff.org/Great_Strides/abbygray to join. If you cannot walk but would like to donate you can also visit that website.
Sorry for the long delay in posts, I will try and do better!
Love you all,
Abby
