Friday, May 28, 2010


A HUGE thank you to everyone who had such helpful suggestions and offered support, but especially to Courtney over at The Adventures of Pudge and Zippy, who mentioned yesterday about someone she knew that wore Robeez with their orthotics.  (We have a HUGE love of Robeez in this house--that is mostly all I put on Aubrey).

This morning at Therapy, I took the orthotics and flowered sneakers and we put them on.  Similar result as yesterday...lots of crying...tears...upset.  Then I remembered about the Robeez and ran to dig out the next size up for her.  (Disney Piglets:)
With these, the size didn't make such a difference to her, but the weight of these is little to none versus the sneakers.  She was happy as a kite!  And now she can hear the tap, tap, tap that the orthotics make on the wood floor!  Kind of like walking in heels on the floor.  She loved it:)
And then off she she wasn't even wearing anything at all!
It wasn't the orthotics that were bothering was the sneakers!  So thank you, thank you, thank you!  This is why I blog!  It never would have occured to me to try the Robeez, which we already had, and we could have struggled for a very long time.

Therapist Liz, knows Aubrey so well, and suggested that we start wearing them all the time right away.  They don't seem to bother her now and she thinks that with Aubrey's personality, we should just jump right in like it was a new pair of shoes:)

We will take them off for naps, long car rides and wet activities, but otherwise, she should wear them.  We'll let you know how she does with them after a couple days.  PT comes on Tuesday, so that will be a good test for us and we go back to the Orthopedic the following week for a check up.  I'm hoping that they don't say anything about the Robeez versus the sneakers that they wanted, but we're working on it.
She likes to look at her feet while she walks now:)

Have a great Memorial Day Weekend Everyone!

Thursday, May 27, 2010


We have actually been excited to get our new orthotics.  She is getting closer to walking on her own daily and we thought that the orthotics would help her so much that she would be walking this summer for sure.  So we went to the doctor's office with such excitement and high hopes.  

Here is what they look like...her little "bug shoes"!
They even have the sense to put the R and L in there for us busy parents so that we get it right and don't do more harm than good by mixing them up.

The size 0 shoes that I got her a month ago, which were too big,  (Itzy Bitzy), I thought would be perfect now with the orthotics.  They tell you that she will need one size bigger with the orthotics.  I could get them on, but they wouldn't velcro closed.  So we went home to sift through the bin of shoes for something a little bit bigger that was like a sneaker (recommended to work best with the orthotics).  Found these "flower power" ones that all the girls wore right as they started walking:)  Her toes are actually where the rubber rounded toe of the shoe starts!  Plenty of length in these clown shoes (size 2).

If I stood her up she would take a few steps in them, but then would sit down.  She wouldn't cruise in them at all.  It was like adding 5lb weights to each leg.  They seemed clunky and heavy.  When she was sitting and then tried to get back up, she couldn't get her legs out from in front of her and under her.  She was so frustrated.

And after about 10 minutes of excited encouragement from me, holding back my own tears, cause I felt so bad for her, we took them off.  It stuck with her all night though and she cried about everything...even in the bath:(  We hope that tomorrow is better...we have therapists coming, so maybe they can help...I think we just need to find the right shoes, light weight and a better size.  I've heard that the stride right outlets have tiny shoes, so we may have to go shoe shopping tomorrow.

Wednesday, May 26, 2010


I first wanted to thank those who offered their support to us.  We sooo appreciate it.  We also thank those "strangers" who found us and gave us knowledge about hearing aids for children.  I felt so much better walking into that appointment today...being INFORMED, at least a little.

They did the hearing test first and she missed sooooo much.  I knew that she had failed, but THEY seemed surprised that there had been so much change from last time.  She didn't have much wax if any, but she had fluid in both ears, which she hasn't really every had before.
So THAT is why she failed this time.  So not a very accurate test as to whether she is really hearing or not.  We are wait and see right now.  We go back in about two weeks for another check, but the doctor would like to start with tubes to get her ears clear and then go from there.
We will schedule for the end of June and proceed if she continues to have fluid, but I'm not convinced that she will...she never has.

So our plan is this:  Wait the two weeks.  If she has no fluid, have another hearing test, and go from there.  If she passes...more therapy...if she another option instead of the tubes, probably hearing aids.  If she has fluid, we will proceed with the tubes and then go from there.  She will need to  have an echo right before surgery...which was originally scheduled for July anyway, so just one more thing for our June calendar which hadn't looked so bad, but is now really filling up:)

Not the appointment we thought that we would have, but then again, I don't know why I thought that it would go as I had prepared or expected!  Tomorrow we get her new orthotics...will let you know how that goes.  In our 90 degree weather...we are really barefoot people, so it should be interesting to have to put socks, orthotics and shoes on her most of the time!

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:)

Monday, May 17, 2010


After months, and months and months of encouraging Aubrey to get herself moving and climbing and standing and walking, we are now faced with PREVENTING her from moving and getting!

Here is what happens when big sisters can't, don't, won't pick up their teeny tiny polly pockets, and you would like to eat them...
"Oh WOW, look at all those little teeny tiny pieces!"
"Come on MOM, take the gate down!  Let me at them."
"I see you in there Ella!  Let me inside!  I promise not to eat anything important!"
"Ha, ha, ha (evil sister laugh)!  The gate is up and you can't get in!"

Tomorrow, I will show you what state the gate is in now...(sigh)

Thursday, May 13, 2010

New Video

Sorry for the poor quality, I just happened to catch her with my cell phone.  We are just so proud of all her hard work and here she is showing it off.  We are so sure that when she gets her new shoes, she'll be running circles around us:)  Enjoy!

Wednesday, May 12, 2010

Smart Girl

My girl is so smart!  (all your kids are smart too:)

These last couple months it just seems like she is changing every day and growing and maturing sooooooooo fast.  I wasn't ready for this!  I really liked the slow pace of life that we had going!  But girl showed me that she is just soooo smart and soooo proud of herself too!

I was making lunch...and she was sitting by my feet...and I was handing her baby cooked carrots to eat while I was working (she couldn't wait)...and then off she scooted for the pantry, her new favorite hangout.  While she was in there she got a kid plate out of the drawer and came out waving it at me!  She put it on the floor and reached out for another carrot...which she ever so politely put down on her plate and gave me the biggest grin EVER! top it off...she proceeded to head for the dishwasher (which was open) so that she could pull a spoon out and was trying to eat her carrot with the spoon!  (I gave her a fork so it would be easier:)

She's a smart one and now she has the speed to go with it.  We love that little girl to pieces!  She may be small, but she is growing up and leaving the "baby" in the dust!

Can't wait to see what she has in store for tomorrow!

Monday, May 10, 2010


It has been awhile since we had a statistical update.  I had liked to think that we were starting to move AWAY from  counting ounces and inches and what not...but we still do and I know others wonder, so here is Aubrey's latests.

Her nutritionist comes every other week for weight, measurements and plotting.  Aubrey gained 1 oz and grew 1 inch in TWO weeks!  We measured twice to be sure, but maybe our earlier one had been a little off.  Either way, she grew and that is great.  However, we are still not gaining enough weight.  We had backed off of yogurt and milk since it seemed to make her constipated.  We are now trying it every other day and mixing prunes in with the yogurt and that seems to be helping, so hopefully we will be up some at her appointment at the end of the week.  She had a little cold when they weighed her so that could have contributed to it as well.  (she was back under 17)  But all of this means that she fell off of the proportional chart that she was actually on...still not even onto the Ds charts and certainly not the "normal" charts.  She looks healthy to us and that is just as important.  She's just petite and she always will be!  We have finally moved up to the 6-9 month clothes though!

She is  pulling up on everything, cruising all over the place and climbs the stairs with so much ease now.  She is working on getting down the stairs and has been successful getting down the bottoms two by sliding on her tummy.  Her favorite place to be is the window.  She watches her sisters out there and waits for someone to open the door so that she can make her escape!

Last week we had an ECI physical therapist come out to look at Aubrey's feet.  They thought that she would be a good candidate for Orthodox.  Her ankles roll in a little and this would help strengthen them.  
(not Aubrey's feet.  I couldn't get a good shot of hers, so these are some I googled, but it is what Aubrey's feet look like)

(google photo again)

The orthodox are a soft plastic and would go just above her ankle bones and her toes will stick out the end.  There is a little velcro closure in the middle and soft padding on the inside so that they don't push on any bones.  Aubrey will get her "new shoes" in a couple weeks.  They shouldn't bother her at all, though with the summer coming, they will probably make her feet HOT.  She will wear socks and then her "sure steps" and then her shoes over the top.  He said she might need one size up in shoes!  I said,  "so the ZEROS that she has now, might actually fit her?".  Woody got to what pattern she got...he nixed the flowers and she is getting BUGS.  Sure hope they are cute!  Our PT thinks that she should be walking soon with these helping...but I'll wait...she just doesn't seem THAT close to me.

She is our joy and light and we are so enjoying the smart little girl that she is.  Sometimes...ok, most of the time, I look and see a baby still, but she really is such a big girl now and really coming into her own with a strong personality too!  Just wait till she starts running around the house.

Friday, May 7, 2010


Spring weekends=planting and gardening

It means that there will be hard work....and I'm so lucky that my girls find pure joy in doing the work and getting dirty...because they KNOW what comes of it:)

(a tutu is a daily thing, in case you were wondering:)
Care and gentleness...and patience.
And a whole lot of silliness...

And it isn't always easy and fun...sometimes you just want to cry.

But all the care and waiting and patience is SOOOOOOOOOOOOOO 
worth it in the end. 
 The reward comes, 
when you peak into the leaves and see those first fruits of your labors.
What I absolutely LOVE about this homegrown goodness...
is that I don't find myself hunting for the reddest, roundest tomatoes...

Or the most perfectly shaped strawberries...or green peppers.

Shape and color..."perfection" don't matter, 
because I KNOW that it is just gonna be the sweetest, best thing I ever tasted!

Aubrey isn't much into the gardening and dirt yet, but she is into this sandbox, which by the way hasn't held sand in 3 years.  It holds summer water and she seemed to know that something was missing.
And once there was water, she was perfectly happy.
It is a perfectly good way to practice cruising too in case anyone is wondering.

Of all my girls, she is the only one who has willingly kept her summer hat on and I"m so grateful!

(picture taking ended her, because someone needed to rescue the baby drowning by the hand of her sister)
Aubrey forgave her once she dried out!