Sunday, May 23, 2010

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 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 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...
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:)


  1. Oh no fun when everything hits all at once, that is for sure. I hope everything goes just perfect for you though, that is for sure! And Aubrey is so cute, she can pull off any hair-do!

  2. Oh, please forgive the spasm of giggles at Aubrey's new 'do. I'd NEVER have known it with her hair in its sweet barrette. But, wouldn't you give ANYTHING to have seen Aubrey's face when she was being re-styled. Just love those girls of yours...

  3. You guys are in my prayers! The TP pics made me laugh though...Sam does the same thing. :) Aubrey looks cute with her new do! :) Course she always looks cute! :) Liam and Ella sure love to cut hair. Maybe they've been taking notes from each other again!!

  4. Yup you are right you have lots going around. Sounds like my house. That's our schedule all right. My son has failed his last 3 tests. He has tubes put in and we noticed a huge change afterwards. Now the tubes are clogged again. I do know a mom with a little one with hearing aids. Let me know when and if you want to talk to her. My son babbles more after mouth stim with a wet tool or nuk. I am not sure if that is relevant or not. Also I am using communication partners to help with speech. Take care and good luck. Ps. Love the toilet paper and hair cut.

  5. Never a dull moment at your house. The girls crack me up. Those gingerbread pictures are too funny. Oh the things they come up with. Hang with it. All these changes at once just means there will be a break coming. You know like those weeks when you look at your calendar and think you must have forgotten to write something down. Good luck with everything and keep laughing at those silly girls.

  6. Oh dear, I think the hair cuts happen to everyone at least once! I know how you feel about being overwhelmed but it does seem to come in waves doesn't it?

  7. Rachel - I have seen bangs so short that the clip did not work! Ask Sarah.

  8. Oh Ella Boo, you goosey goose. You are the stinker girl, aren't you? But that's why we love you so much!

    Loved the update! Always puts a smile on my face to "see" and hear about our beloved Smiths!

  9. I love the name Aubrey! Your little girl is so sweet!

    I found your blog from Google. Our little guy was born with a hearing loss and wears hearing aids- and we have a lot of rather young friends who wear hearing aids, too. They actually make hearing aids pretty "kid friendly" now- with fun earmold colors (you can even get glitter) and small aids.

    Sending *hugs* your way- things will be OK- whether she needs hearing aids or not. If she does, know that they help with speech development a LOT!

  10. Goodness- sounds like you have your hands full(maybe I should say "fuller"? I mean, with four girls, A HUSBAND, and oh yeah, that necessary shower on occasion, it was already full, right???).

    I don't have any experience to offer, obviously, except that someone posted a question on (are you on there?) the other day, too. It's in the member's only section, I think.

    As things go, though, hearing aids could be worse. I've heard people equate them to glasses, really. I used to belong to a group that raised money to buy hearing aids for kids who couldn't afford them. We'd do a ceremony and get to see them the first time the audiologist put them on. It was so awesome to watch them hear things for the first time. It'll all be okay- no matter what direction it takes!

    IF she isn't hearing great... The yelp you let out when you discovered the hair massacre was undoubtedly lots less dramatic for her, grin...

    Keep us posted! We'll be thinking good thoughts for you (and your sanity!!!).

  11. Hi Rachel,

    (found you through Leah's blog)

    What a beautiful bunch of girls! And I like the haircut... her new "bangs" are adorable!

    I have three boys. My middle son (11 y.o.) has hearing loss.

    It seems like you've got a lot of change coming at you right now, but there is a TON of support and info for families with HoH (Hard of Hearing) kiddos. My son got his HA's at age 3 1/2 and LOVED them, after an adjustment period. (The world was so NOISY!) Made a huge difference in his life.

    Best wishes,



Thanks for dropping by...we love to know you were here!