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Friday, January 25, 2019

Happy 10th Birthday!!!

 Happy 10th Birthday to this Super Hero!!!










Thursday, May 24, 2018

So long third grade hello Summer!!

Wow, time truly flies by!  A lot of things have happend since our last post, most importantly Avery's annual scan was all clear!! Six full years off treatment!!
Our trip to St. Jude was a little different than what we are use to.  Avery was moved from her normal clinic ( D Clinic) to the After Care Clinic. This was an exciting change for us because this marks a new chapter in Avery's Journey.  No longer is our focus solely on Avery's survival, now we need to focus on helping her deal with life after treatment.  We are also excited that we get to keep Dr. Armstrong as our primary Doctor as he is in charge of the After Care Clinic.  We found it funny that a few of the nurses seem to know Avery's story very well, so I'm sure Dr. Armstrong had been telling them about her for the last eight years as they anxiously awaited her arival to their clinic.  We will truly miss our friends in D Clinic and we will never forget all they did for us.
Avery's school year seemed to go by very fast as well.  Tomorrow is her final day of third grade and we really feel good about where she is at and how she is doing.  She still has her struggles, but in the grand sceem of things she has had another successful year.  She is excited for Summer, but looks forward to Emmett joining her next fall as he becomes a Mill Creek Mustang Kindergardner.
Avery has a busy summer ahead of her.  We have planned a vacation with friends to Florida, she will be attending her fourth Camp Quality, trips to Grandma's and Nana's, she will be attending Summer school, continue her therapies, and most importantly spending time with Emmett and Quinn.
We want to thank everyone for your continued support and prayers.  We wouldn't be here without you.  Have a great Summer!!

Love
Jeremy, Jenn, Avery, Emmett, and Quinn


Sunday, January 21, 2018

I can't believe she's 9!

This weekend we celebrated Avery's 9th birthday and she had a great time!  She chose to have a pool party with her friends and enjoyed the water and splashing that accompanies a great pool party.  We played outside a bit -- thanks Kansas City for being almost 60 today -- and ended the evening with a slice from all 4 gourmet cupcakes she selected.  All in all, a fantastic weekend for sure.

Avery is working hard at school and with her continued therapies.  We discovered in the summer that her body was starting puberty and had to work with our endocrine team to put that on hold.  The options included an extremely large shot given every three months or an implant in the arm that happened once a year.   We opted for the implant and are enjoying the hormone swings as she regulates.  While Avery has been growing, we are still pretty far behind the average and need to get her body a little further in that area before we can start letting those puberty things kick in.  Standing at a whopping 3'8" now, we know we will be lucky to hit 5 feet -- but we really want to get there if we can.  She started working with a new therapist in addition to her current ones to help her more fully understand her body and allow her to focus on appropriate ways to react when over stimulated.  This is a tough situation for her but she definitely needs some help understanding whats ok when she gets there.

School is going alright.  Each month we see her fall further behind her peers in her learning, which was expected, but still hard to watch.  She is reading at an early first grade level and we have seen some regression in her math more recently.  She is learning to tell time, but its a struggle for her.  Almost all of her schoolwork is modified to her level and we are very lucky to have a great teacher and strong special ed teacher.  Emmett knows all his numbers and letters and is starting to catch on to a lot of the sounds now.  His progression helps push her a bit and its fun to see them work together.  Next year we will have his presence at school to help her as well, which will be great support.  Now we just need that dog from KSDS Inc to help keep her steady.  We have had a rough winter in terms of falls.  Her desire to be independent is outweighing her direction for safety and as such has resulted in a few stitches, liquid bandages, trips to the ER and the dentist. Needless to say, we are back to using our walker mainly to stymie the habit of running when we clearly aren't walking that great.  The helmet is still part of the daily attire (which is awesome for the hair) but it doesn't protect the face from chairs and dressers.  Battle scars are nothing new, but man that cute face doesn't have a lot of real estate left.

We head back to St Jude for our annual MRI (OMG that seems crazy to even type) in early March.  It's been a full year since she was last scanned.  We have decided to take Emmett with us this year.  Time for him to learn more about what his sister has and continues to go through.  Days of appointments with a 5 year old boy isn't exactly a dream, but its important to us that he sees more than just the physical limitations that challenge her each day.  The needle pokes, the lack of eating all day, the sitting and waiting, the prodding and questions  and checking and invasion that all come with follow up appointments.  He needs to see that, feel that, really start to understand who this annoying big sister of his is.  She is fiery and particular, giggly and whiny, determined and methodical and above all, a fierce fighter that gets up everyday and puts her gloves on to face all the challenges this life has given her with as many smiles as she can muster....and yes as irritatingly as possible to her little brother.  As it should be.

Welcome to 9 baby -- we love you!