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Reality

Just when we start to get comfortable in our new "normal" life, we are thrown back into the reality of the cancer world.  Just because you leave hospitals, you stop chemo, or you finish a treatment - it never means you are fully done with this nasty business of cancer.  We found out yesterday that another baby girl earned her angel wings from our SJCY07 Protocol family.  While we had never met Sophia and her parents in person, we were well aware of the path they were on and the battle they were fighting.  The feeling of safety that being home has provided, came crashing down around me as I read those fateful words. 

Life will never be normal for us again - we know that.  We are thankful every waking moment that our little girl wakes up with a smile on her face and poopy diaper.  That she loves to get herself dressed in weird outfits and won't wear her hearing aides... that she won't eat anything but chips, sweets and mac & cheese...that she works so damn hard to walk, to talk, to move and that if I stick out my lip and pretend to cry, she will give me the best hug in the world so I feel better.  These are the things that may challenge other parents, but to a cancer family, they are the closest thing to normal - and all they want.  Just like that, things could be different.  Losing one of our kids, whether we know them personally or not, hits very hard and very close to home.   Sending us right back into the reality in which we never want to be in. 

So as you pray for Avery tonight, please also keep Sophia's family in your prayers. 

Thank you...

Jenn

Crisis Solved - Temporary Nanny Found

Thanks to a very user friendly website, Sitter City, I was able to locate possible nannies from the Shawnee area to interview in a rather short amount of time.  We quickly interviewed the possibilities and offered to a recently graduated nursing student who spent some of her schooling at Children's Mercy.  Great fit for us, so we are extremely happy.  Taylor will be starting next week with Team Avery! 

Nana came down on Sunday to save us until we found a temporary replacement so we've now added training to her lists of todo's as tomorrow she will take Taylor to rehab and show her the ropes.  We have some concerns about Avery's eyes-- not her vision but her eyes.  We've noticed she isn't looking directly at objects sometimes and it started after the surgery in April.  We are hoping an evaluation will diagnose an issue with control or movement that can be easily remedied with some simple training, but we'll see. 

Avery is doing great with therapy already.  Lots of energy and a never ending desire to do it.  She started speech therapy as well and we are already seeing a difference in her attempts to talk.  MOM is not being said yet but it doesn't appear to be so far away now.  We've reintroduced the hearing aids and she is slowly tolerating them more and more each day.  An OT evaluation was done today and they found her to be right on track with her skills for a 2-21/2 year old.  This means she's smart as can be but can't walk or talk...makes for tough dealings when someone wants something.  Soon enough the speech thing will be here though and we'll just be left with the strength and walking to work on.  She is such a strong girl - its inspiring. 

Thanks to everyone for the great ideas and suggestions in finding a temporary solution for Sharon being out.  We so appreciate it!  Avery and Sharon miss each other terribly, but in a few short weeks I am sure they'll be back to being best buds again...Please keep Sharon in your prayers as we really need her to heal fully and be ready to rumble with a chatty cathy, mover and shaker in a few months!

Jenn