My Kaleidoscope...Changing

 You know how you have good weeks and bad weeks?  The good are our normal now, so when surprises come along...the slight turn of the kaleidoscope...and all those rainbows and flowers become bumpy, rocky roads that are now where we are.  I don't like them.  I am a planner and like to be organized and we are finally running a very smooth machine when it comes to appointments etc.  But it is here where I connect with others that are going through the same thing and so I feel like I can share the good, the bad and the ugly...We are struggling with lots of change...but as always loving our blessing:)  She is just amazing...and her kaleidoscope is the same...rainbows and flowers and smiles and happiness.  (we should take notes)

First it was the orthotics .  I'm ok with those.  We have seen them on other kids;  our therapist talked about it casually a few months ago.  I'm ready for those.

Speech...has not progressed.  No new words or sounds for that matter.  She sees the ENT pretty frequent, but the speech teacher recommended that we try to get another hearing test as soon as we could.  Since she has no fluid or wax build up to block her hearing (assuming that this is the same as it has been) then there is no reason why we wouldn't assume she is hearing everything.  She hasn't passed a hearing test  in the last nine months.  Always easily explained away, but with her speech...or lack there of...we have a problem.  If she doesn't pass her hearing test this Wednesday, we will be faced with the reality that she probably has a permanent loss...meaning she should be considered for hearing aids!  NOT READY for that!  Don't know anyone who has them.  If you know of anyone with them, we would like to hear from them or check out their sight.

Our favorite therapist is leaving us...we knew that she had moved to a neighboring city office, but she had said that she would try to keep us on...and she has...until now:(  She will be done in June and we will miss her tremendously.  Her replacement came this week and I found myself in that teacher/student teacher scenario and I'm not sure how things are gonna work with the new gal.  Liz pushes Aubrey and she needs that.  Not sure that Kindall will.  Time will tell.

Our OT is also leaving us...she got a job in a NICU (we love NICU nurses:).  Her last day was Tuesday (the day she told us).  Most kids transition from Occupational therapy to Physical therapy near 2 years old.  Since Aubrey is close and she is getting new "shoes", they decided to transition her early.  This will help since sooooooo many things are changing for her all at once.  Regina came to evaluate her for the shoes and seemed really nice, so hopefully she will be a good change for us.

Oh and our service coordinator got promoted!  So I don't even know who to call anymore!

(her favorite spot these days...happen to have a lawn guy here and she watched him happily:)

Shoes, hearing, new therapists, more appointments and therapies...A little too much all at once and we are feeling a bit overwhelmed...reminds me of the ultrasound day when we found out about her heart and surgery and Down syndrome and new doctors and new hospitals...

It all will pass...it always does...and we will adjust, but we aren't there just yet.  So we go about our days...waiting for "normal" to set in again.

Never dull around here though...remember the posts about things that happen...here...and here...?

Mom:  "what are you guys doing?"
Children:  "nothing!"
Mom:  "then why is Ella laying on the table?"
Kate:  "I'm cutting up my gingerbread man.  See!"

(just like on Shrek when Gingy gets his legs pulled off by Lord Farquad!)

And Aubrey has found new talent in pulling ALL the paper off of a brand NEW roll in the bathroom.  And she tells me that she is working on her fine motor skills and that it is FINE!

And then on Friday afternoon, while I was running late no less, this happened.  Notice anything different about my baby girl?  Let me take her clip out and then maybe you will see...

Yup, big sister gave Aubrey a haircut!  (see toilet paper pics for a before and after)  I had thought about trimming it up myself, but had decided to wait and see if we got hearing aids and what cut would be best...guess that is over.  My baby girl had her first haircut at the hands of her sister...and when asked WHY...
Ella...silence.
Mom:  "Why would you cut Aubrey's hair?"  (no one has ever done "haircuts" at our house before)
Ella:  "Mom...she was crying and her hair was in her eyes!"  (said like "duh mom"!)

Oh well, it's just hair and you can't even really tell when it is nicely tucked back!  And for the record, I wasn't in the bathroom, just another room.  Left her happily cutting at the table like she usually does.

***NEW RECOMMENDATION:  24/7 surveillance needed on children until they are grown and married!  (might seem drastic, but I wasn't sure how long it was necessary with these two:)