Dear Friends and Family,
I usually start these letters about Avery's diagnosis, but this year I want you to know who my Avery is, the kid, minus her diagnosis. My Avery is almost 11 years old and is blossoming into a beautiful young lady. This last year Avery hit a growth spurt and is almost as tall as me. Heck, she already wears the same size shoe as me! This has come in handy as we both like Vans right now.
Avery is a very sporty girl enjoying volleyball, basketball, and soccer. Last summer she went through club volleyball tryouts and made a national team at Arete. She is getting pretty serious about volleyball and is really loving the tournaments she has played in already. The team has a great group of girls and she is making some great new friends. Basketball is still another love for her and we found a great coach. She has really come a long way with the new coach and enjoys playing on a team with her school friends. Soccer starts back up in the fall...but I am not sure where her heart will be. I helped coach her team in the fall and had a great time teaching my long forgotten skills. It would be awesome to continue, but time will tell.
Avery started a new school (in our district 5th grade moves on to intermediate), Sloan Creek. This year is much different as they switch classes each period and there is no real home room. They do a great job teaching the kids to become more independent and responsible. Avery has made new friends and in enjoying being a big kid!
Avery has also discovered her love for online games and videos. If she is not at school, playing sports, or with friends you can ususally find her in her room on her ipad. We are doing our best to limit her time, but I am pretty sure every parent in American is fighting the same battle.
So, yes we have a very normal girl by all accounts, except yes, her diagnosis. We try and not have her diagnosis define her. We make it work with treatments and medicine and doctors. Right now I feel like we have a good balance. We are in a good place. Avery is doing great.
She is doing great because behind closed doors, she does 1.5-2.5 hours of daily breathing treatments to keep her lungs clear. She organizes her pills for the week so she takes the right pills each day (around 30). She goes to her doctors appointments every 3 months to meet with her team of doctors. One of those appointments each year she has to meet with around 7 specialties, gets her TB poke, takes a lung function test, bloodwork and a fasting/blood glucose draw. Avery is not the only one that works hard, I am constantly on the phone with insurance fighting with them to pay for medicine or some durable medical equipment. I am managing her medicines to ensure we don't run out. I make appointments.
So yes while Avery looks like any normal kid, she is far from it. We work hard to keep her healthy. Each treatment we do, each pill we give has been due to in some part because of the CF Foundation. The CF Foundation has been instrumental in lengthening the life span of those affected by this disease. Just two generations ago, we would have already paid for a gravestone for Avery. We don't take them for granted. We know we have Avery alive and doing well because of this foundation. We will always be a big supporter.
This is where, of course, you come in. Mike and I are asking for you to donate what you can. If you can spare $5, we will take it! If you can spare more we would gladly appreciate it.
We will be virtually walking in Great Strides this year because, yes, you guessed right, we have a volleyball tournament!
With all my love,