First Day of School!

Aubrey's first day of school....should have been Monday....but a post birthday stomach bug delayed it a bit:)  I'll spare you the pictures of all that, but will tell you that:
*we were up every 30 minutes all night long
*I had THREE extra loads of laundry to do the next day
*there was fever
*I got to cuddle my girl a lot
*She took two 4 hour naps

*She's back to her old self again.

Big girls who go to school, need to be able to reach their school stuff.  So a couple weeks ago, we put up some hooks for her coat and backpack that are low enough for her to be able to hang them up and get them herself (she is yet to put her stuff away:)  Her shoe basket is also by the door.  She is really good about putting those away and getting them when it is time to go.

So last night.....we got her backpack all set.

Preschool requirement:  One back pack big enough to hold a 9x12 folder.  Those tend to be as big as Aubrey and hit her in the knees when worn, so I made her her own back pack (last night), that fits a folder sideways.

PERFECT FIT! 

(truth be told, she took it right off, but it fit and I'm confident that the teacher will teach her how to wear it....I'm gonna let Miss Senne fight that battle:)

We had to get up EARLY.....school starts at 8:15....so we gotta leave about 7:45...and we gotta get up before that.
Gone are the days:
*of sleeping in til 8:30 or 9:00
*Eating on the go
*Staying in our jammies ALL day (or at least until carpool for the other girls)

 To say she was excited about this new schedule would be exagerating just a bit!  She was NOT pleased!

She thought about running back to bed and delaying the start another couple years days!

Thumbs make everything better.

But after some coaxing....she agreed to try it....ONCE!

Her preschool has about 500 kids total in all the different programs (am & pm preschool as well as the deaf ed--I'll explain her program later).  She does NOT ride the bus!  Again another post....I get to drive her and there is a carpool line.  You pull up, they pull your kids out, you pull away.  (I'm not ready for the carpool line either:)

I parked and we walked in together (highly discouraged).  There were a lot of kids and she was not letting go of my hand.  We met her teacher in the hall and put her bag away in her locker.  We chatted with Miss Senne a bit and went into the classroom.  She had an activity set up for the kids to work on.  Camera in hand, I was ready to capture that first activity of preschool, but Aubrey was not having it and wouldn't even sit down.  She  clung to my leg!  The teacher had to take her so I could slip out the door:(

I waited in the hall a minute before peaking in.....she was fine.  But I worried about my girl all morning.  And I even arrived back at school earlier than necessary.  She had an appointment at 11, so she really only went for a couple hours today.  The teacher said she participated....she was a little upset when the diapers came out and she remembered home....and she cried when the teacher said that it was time to go down to the office and see mama.  Maybe she didn't understand that I was there, but it tears at the heart to see your girl walking down the hall crying.

Photo by Ella Smith (age 4) taken Friday at meet the teacher

First day.....done.  Tomorrow....gonna be tough, but better we hope. Maybe I'll just walk her to the doors tomorrow. Maybe next week we'll join the carpool line.....maybe....

School

So the three big girls are now in school (Ella most days) , so I'm finding time for catching up!

I feel like the first week was a little crazy, since Ella had surgery, and last week she was still recovering and now this long weekend.....I feel like we are getting into the swing this week now....and then Aubrey will start!

Alice is in 4th grade now....I remember when I used to sub, thinking that 4th graders were so BIG.  And now...I feel the same:)  

But in a lot of ways, they are stuck in the middle.  Not the little kids anymore, but not yet considered big kids.  It's a good place though and I think it fits her.  In a home where she is ALWAYS the big kid, I think it is nice to have a place where she isn't.  And while she still has fun pretending and such with her sisters, she is also spreading her wings a bit and reading higher level books and singing in the choir and caring about hair and clothes.  (we will have many YEARS of butting heads ahead....I can already see).

Kate is in 2nd grade and with a room full of boys....she holds her own pretty well.  She is my most energetic and hangs with the boys just fine.  She's becoming a leader and is reading beyond her years!  I can't keep enough books in the house for her:)  

She loves to just get to school and get to work.  Let's do this!  It may be due to the fact that they have great teachers and friends, but I do hope that she always loves learning like this....with enthusiasm!

Ella went to preschool this year and is learning the ropes at the "big school".  And while getting up early is NOT her thing, she is settling in nicely and LOVES to be with her friends.  We are excited to see how the year progresses, since she had surgery and is just starting to become a new and improved Ella.  But this weekend she was writing words for me....so I know she's learning lots already.

Thank you to everyone who has prayed for her.  Those first four days at home were pretty rough, but then she made a turn and hasn't looked back.  We are so thankful to have found the problem and to have been able to have it repaired.  We continue to pray that she remains healthy now.

Breakfast of Champions on the First Day of School....Thurne's Sausage, Carrots and Hummus!  Love this girl and her constant ways to make me laugh:)

Aubrey had a meet the teacher and it was good.  (This is her carpet spot.)  They are ready and waiting for her.  I think she's gonna do great, but it will be an adjustment too.  Her ARD (admissions, review, dismissal) meeting is tomorrow morning.  We have some of her ECI people coming to help us make that transition to school as we write her new goals for school.  Sad and exciting time all at once....

We are excited and nervous about starting school, but I know that Miss Senne is going to take the best care of our girl here.  (yup....she's got a locker and it's the real deal--she can't open it, but they'll be working on it).

And Miss Emelia.....in August she learned to sit up by herself, crawl, pull to stand, and keep us on our toes!

She is a busy one and moving faster than I would like.  So from time to time I might push her down to keep her from walking too soon!  She's my little and I can't have her growing too fast!

More to come on Aubrey's school and meetings!  Have a great Tuesday!

Update on Ella

I want to first THANK everyone who prayed for my sweet girl today.  She was so brave and tough and is doing well tonight.  Daddy is sleeping over tonight.

Some asked what was going on....so here goes.  I sometimes wonder about sharing too much, too soon since it was a LONG process that got us here and it was hard to keep up with myself.  While I don't ever want anyone to go through this, maybe some other parents out there are pulling there hair out and need someone to point them in the right direction for help.  We are finally getting ours....I hope!

We have been potty training Ella for 2.5 years (she will be 5 next month).  She was still having frequent accidents and so this spring we took a step and her doctor started digging for answers.  Tests revealed that she had reflux on both sides.  Urine normally goes from kidneys to the bladder.  Reflux is when urine from the bladder flows back up into the kidneys, often causing urinary tract infections, with high fever (she does 105 type fevers all the time).  Repeated infections can cause scarring and damage to the kidneys.

While she has some scarring of the kidneys, the over all function is fine and nothing to worry about. 

Further testing also revealed that she had double ureters (tubes connecting kidneys to bladder) on BOTH sides.

Only way to fix it all was surgery....so this morning we got up at 4:30am and heading down to the hospital with sister Emmie in tow!

watching cartoons

We registered and got a good work up and then headed down to the Holding Room.  I didn't know that Emmie couldn't sit with us back there, or  I would have had Woody bring her later, so the Child Life Specialist, sat with baby while I sat with Ella.  (Woody took kids to school on his way in.)

They gave her "goofy juice", to keep her calm and relaxed for the hand off.  And in light of this, I had to take pictures of the light fixtures in the holding room, because no one was gonna believe her when she told them about the FLYING DOG when she woke up!  It was the last thing she saw before surgery....and the first thing she asked about after!!!  "Hey....where'd my flying dog go!!!!"

Light above her bed:)  Cool huh!

They let her watch a movie while she waited.  That combined with the juice....she barely said goodbye to me when I had to leave her....which was sad and good all at once.

Beauty and the Beast

I explained the whole procedure to her.  I thought that only fair....it is her body and she will have to recover.  Her one and only question this morning.....When can I have a popsicle?:)

What should have lasted TWO hours....took FOUR and a HALF.  To say we were getting worried was an understatement!  Apparently she also had a weak bladder wall that they had to repair!  Nothing is every routine or easy for my girls at this hospital.

Good news:  She is ALL GOOD.  Everything is repaired and she should be fine.  She has a three inch incision  that is going to need some healing, but we look forward to much happier days to come now!

She has been sleeping most of the day and been pretty groggy.  Tonight she got some visitors to her room.

Hopefully she "behaves" tonight and is a model patient so she can come home in the afternoon.  Pray for a smooth night.

Prayers for our Ella

I know that I have tons of updating to do, but I humbly come to you for prayers for our dear Ella.

Ella's First Day of Preschool

Tomorrow she will be having surgery...nothing too big, but surgery none the less and she is very nervous...which in turn has made a calm momma now nervous.  Please pray that out nerves are calmed and that all goes well with the surgery.  Woody and I will be with her all day tomorrow and he will stay over night with her as well.  If everything goes ok....she will come home with us on Thursday.

(and I promise to work on pictures and posts while I sit in the waiting room:)

Advocating for my kiddo

When you become a mom (or parent for that matter), your kids become your number one priority and fighting for their health and well being tops the charts....and being respected.

We have been fortunate over the last three years to be surrounded by love and support, by friends and family, but also by neighbors and strangers.... and my chances to defend and lift up my daughter because of her Down syndrome have been rare, if at all.  So I've done very little advocating.....

However, I feel like it is important on a NATIONAL level to advocate for people with Down syndrome, because some day, my daughter will benefit from the stance that we take today to make HER world a better place.  It is something I hope to become more involved in this year....starting TODAY.

On July 15th, GQ magazine published a list of Worst Dressed American Cities, written by John B. Thompson.  Boston ranked first and the author described them this way:  "Due to so much local in-breeding, Boston suffers from a kind of Style Down Syndrome, where a little extra ends up ruining everything".  GQ has since removed that phrase from their piece.

On July 18th, Brian Skotko, a physician at Children's Hospital Boston's Down Syndrome Program, wrote an article entitled "Mock My Pants, Not My Sister", in response to the GQ article.

He says in the article, "Go ahead, GQ, and mock my blue whale-emblemed Nantucket-red pants. Laugh if you want at the loud argyles that I prefer to wear with my black suit. I don’t even care if you dismiss the sexy pink polka-dotted tie that I like to wear with my blue-checkered shirt in clinic. But, whatever you do, do not mess with my sister."


We're with you Brian!  Nothing is ruined by having something a little extra.....life has only been better because of that extra chromosome in our house.  We have extra love and extra laughter and extra patience and extra friends and extra understanding and so much more.


Patti, Lily's mom and one of our blogging friends, took on the challenge as well with a video Montage.   You can read her post and watch the video montage at the bottom, HERE.  Aubrey and her extra something are at minute 1:56.


So to John B. Thompson and all the others at GQ who didn't have the sense to edit the article before it went into print for everyone to see, we have just one thing to say:

"Go ahead and make fun of my GIANT, red, size 17, crocs.  But don't you dare make fun of my daughter." ~ Woody Smith

Friday Night

All of my littles are tucked in bed....the dishes and laundry are done....and my "to do list" is quite a bit shorter after this week....so I"m finding time to share our Friday with you.

 My girl painted today!  It was a first for her.  If you know me well, you know I don't like mess.  My kids don't have finger paints...too messy!  You know that kind of thing...I just hate the mess.  But I'm learning to let go a little and my girl has proven to be very neat.

She took such pride in remembering to dip it in the water and then into the paint.  She created a masterpiece. It was a good day....a good reminder that she really is so smart and that given opportunity to do things and shine....she will.  (and just look at that correct hold she has going on too!)

Summer Friday Nights means a trip to the pool.  When it hits 105...we are always there.

 This year...she's walking and so the world is her oyster and she is becoming so independent.  She is curious, and cautious.  She is brave and shy.  She is blossoming into a really beautiful young lady.

Our little girl will be three in exactly two months...and we have to remind ourselves of it often.  She is still so small in size, but she really is a big girl and capable of so many things.

 We are trying to figure out the correct wording for her IEP (individualized education plan) in school next year...How to politely say stubborn and strong willed!

 She is a strong, silent type...and quite the little lady.

She's my baby and I'm trying to soak her in these days.

 Because my days won't be so full of her anymore....she will be at school...and I will miss her...

And while we want to help her grow and learn and blossom....

We also want to hold on tightly to this little peanut.

 Pretty soon, Aubrey will be hanging with the big girls and keeping up with them.

I'm enjoying where she's at, but also wondering just a bit about her future and wondering what will she be working on next summer....

Will her sisters have her standing on the edge of the pool with them?

How brave is she gonna be at the pool?

Will she still be cautious....or will she jump in with them?

For now...she's happy to hang with me and watch her crazy sisters and keep to the shallow end.  I'm enjoying it!

You'll notice that three people were missing tonight...someone made bad choices today....no names, but they might be 4 years old and stubborn.....and when you make bad choices, you don't get to stay up after dinner to swim.  You stay home and get put to bed....and one parent will have to stay home and as long as someone HAS to stay home...well, the baby might as well too.  And that is why I got to document the night:)  Two free hands and only one little to worry about.

Happy Weekend Everyone!

New Look

I must admit that I usually cut hair....don't like paying $20 for a five minute haircut.  But I also like straight lines!  So I finally bit the bullet and paid to have Aubrey's hair cut by a professional.  She just wouldn't sit very still for me to try and do it myself.

The end result, a very cute bob:

 Shorter and so much easier to take care of.  She seems pretty indifferent, but I gotta say....I miss the piggies already:(

 We are also sporting some new accessories!  She is totally Rocking her RED SPECS!  Keeps them on and everything!

It became apparent when she was in a class of others and being read to, she wasn't seeing the books, so we went to get her prescription.  We think she looks great and they seem to make a difference, but we've only had them three days, so we'll keep you posted.