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Thursday, August 14, 2014

Milestone Achieved - Kindergarten Day 1

Well we have hit another milestone here at Team Avery -- we now have our very own Kindergartner!    Avery started kindergarten this morning and couldn't wait to get there.  She was so excited.  Course the nurse has already called me to let me know she hit her head on the playground and her tummy is hurting.  Awesome - it's only been an hour and half.  The first day is always the hardest they say - so hopefully tomorrow will prove better.  (especially after an enema!)

She has Mrs Talb and their are 20 kids in her class.  Mrs Talb is a very orderly and specific teacher and rumor has it she is a great one.  She has been teaching for a long time and I look forward to a few weeks from now when she has Avery figured out and we can get down to business on the learning.  I have high hopes that Avery will make some new friends this year - ones we can have play dates with.  I yearn to hear those girly giggles floating out from her bedroom as she pretends with her new best friends. 

This will be the start of a new phase for me as well -- dealing with the School and Avery's IEP is something that most parents do not find an easy task.  My goal is to play nice as best I can  -- or this could be a long 12 years...  I have not yet met with this school's team as we transferred in from our assigned school and they don't approve that move until a few days before school starts.  Hoping to meet with them next week to fill them in on Avery and her baggage.  I keyed the nurse in today about her "Master Adult Manipulator" skills -- hoping that helps a little today. 

Our next visit to St Jude is at the end of September -- a longer wait than normal due to scheduling.  Crossing our fingers that waiting 5 months hasn't left anything unchecked. 


Friday, July 11, 2014

Fantastic 4th of July

It's crazy to think that we are halfway through July and almost done with summer.  Avery is slated to start kindergarten on August 14th -- which is only a month from now.  Her backpack and lunch box came the other day and I was at Target this week as the school supply displays were being set up.  I can't believe how fast summer has flown.

Avery is working hard on standing and walking and gets more daring each day in her attempts to maneuver around.  We are still trying to gain as much independence as we can before the start of school.  She has an IEP lined out that includes daily special ed time, weekly therapy times and assistance from a para.  We are of course nervous for this new step.  She is not yet in control of her bladder thanks to that damn radiation, which means she will be dealing with pull ups and wiping and potty breaks outside of the classroom.  Right now she has a bathroom in the classroom and the teachers assist her if she needs it.  This makes me really nervous especially because she is so OCD about any spills on herself.  We change our clothes daily because we have a drop of water on our shirt.  Control what you can - right?

Our holiday weekend was spent in Iowa visiting the big family clan and hanging out at the pond.  The kids loved the fireworks and were enthralled both nights when they got to see them.  Lots of candy, sweets, late nights and no sleep.  It was great to see all of our cousins and spend time with them. 

Scans have been set for Sept 23rd.  Late I know but the 4 month appt was not fitting well with our family vacation to MN and the start of school so we pushed it back a bit.  Makes us nervous, but no signs of any issues as of yet.  The appointments will resume the 4 month cycle again after that because I don't need any additional stress and this extra 2 months will most likely freak me out more than any other wait.  We have never waited this long between scans. 4 years of at least every 3 months....well it has us on edge for sure.  

We have ordered more koozies for anyone that is looking to get some.  They are $2 a piece and I will have them by Friday.  Just let me know so I can hold some for you.  I also have bracelets and keychains in case anyone is in need of a new one.  I know my keychain was a little yucky at this point -- 3 years I suppose is about the max on keeping that thing usable. 


Monday, June 9, 2014

Day 1 A success!

So far we haven't talk to her because she is way too busy to call us.  Apparently she is having way too much fun I guess.  She received mail today and made out like a bandit thanks to the MN crew -- she was so excited to receive her own mail!  We are patiently waiting for her to call us tonight, trying hard not call her first.  Her companion sent us some pictures today so we have gotten a small glimpse into her day but we can't wait to talk to her.   Man is this what it feels like when they go to college???