TODDLER SCHOOL!!!! PART ONE!!!

May 2, 2012

So this is an INSANE amount of pictures...and they are horrible pictures because I had to take them without flash through a two way mirror.  So take what you can get, huh?  It's just the memories that matter.  And as long as the pictures are understandable enough to remember, that's all that matters.

Grace's first day of school picture, and of course she had to look away right at the last second...ug...the eye...we WILL be getting that surgically repaired SOON.

See the backpack sticking out with the blue jacket?  That's Grace's cubby!  She's watching them put toys up on the shelf.

Grace checking out the class.  This is what she does a lot of the time...I think there's way too much commotion for her and she gets overwhelmed, and so she has to stand and watch, just take it all in to understand it.

I wanted to get the classroom so you guys could see her fun place!

Chummin' up with the teacher while she gets snack ready.

Ok...here's all the cubbies, sign language poster, etc.

The slide (they were cleaning up so there is a ton of stuff all around it)...

The other side.  That's the play house area, and Grace's class is Zoo themed this semester.

They were supposed to be dancing but she was overwhelmed, so she's sticking her tongue out at the teacher instead.

There she is on her special red carpet.  That's hers, and ONLY hers.

Wiping her hands for snacktime.

Throwing the wipie away.  If it would have been a second earlier it would have actually looked like she was throwing something away.

This is what happens when you pour Grace a whole glass of water and just put it in front of her.  I mean, HELLO?!!!

Still cleaning up while she tried to grab her cup and pour it out (it was empty though).

Ok...you're learning...slowly.  Don't let her hold the cup by herself unless you want a mess again.

Snacktime!  See the hand sneaking into the bowl?  Yeah, that's NOT supposed to be happening, but once again, they aren't very observant. 

Look at that sweet face!

Helping her scoop out of the bowl.

APPLESAUCE!!!

And then there goes the hand into the applesauce.  Who can resist?  I mean, something cold, wet, and food that you can squish your fingers into?!

Second try...

"But it's too hard so just give me a cracker...I mean, I'm signing it! HELLO?!"

Applesauce third try...it's on her right hand AND all down her chin.  You see it?!  SHE'S SO CUTE!!!

And getting some more assistance with drinking.  See that napkin with three pretzels on it?  Yeah, in about 2 seconds, that was yanked over to Grace.  She was hoping to snag a pretzel without being seen, but surprisingly, the teachers were fast enough!

So I can't believe she's in school.  Makes me cry if I think about it too much.  So I won't.  I love you Grace.

Amanda

A Tornado of Time has Passed

I can't believe it's been so long since I've posted.  An amazing amount of time consuming things have been going on, or coming up, and so I've been absolutely bogged down, unable to even spend a minute typing on this blog.  Major updates are needed, and here are some hints below:

1. Grocery Cart
2. Fat lip with lots of blood
3. Corner of door
4. bruised face/puffy eye
5. Traveling
6. Airport
7. Homework
8. Sign language
9. Therapy
10. School
11. Doctor Appointments coming up

See, so many things to update on.  It's SO overwhelming that I've sorta distanced myself from the blog because of the huge chunk of stuff I have to update about.

It's only 10:23, but I'm bushed.  Busy weekend this weekend, busy week this week, absolutely crazy week next week.  Better get my sleep while I can.

Amanda

Grace says HI!

Grace was hanging out bein' cute, so I thought I'd snap some pics :)  So CUTE!  Don't you just love her slippers?!  Thank you Wilma!

 She says, "Hey there!  How are you?!"

"I'm HUNGRY!"
Amanda

Genetic Information

I am so excited to say that I've found some genes that were deleted to have been the cause of other diagnoses for Grace!

So, Grace has 7q36 gene deletion, which means 25 genes were deleted from her genetic makeup. Two of which, so far, I've found out were specific to her other symptoms. The gene SHH (sonic hedgehog) deletion caused her Microcephaly, and the deletion of her EN2 gene caused her cerebellar vermis hypoplasia!!

Ok so this is super scientific but whatever. I'll try to make it as English as possible! So, her cerebellar tonsils and inferior vermis are hypo-plastic, which means didn't grow enough, and because of this, it causes loss of fine motor control, which is what she has. Along with this, it also controls eye movements (which have been affected), body and limb movement (which has been affected), and also is associated with planning, initiation, and timing of movements (which has been affected)! This is so interesting, right?! Ok, something else I just read...the stunted growth of the cerebellar vermis is inherited through an autosomal recessive pattern, which means the gene HAD to come from both of us since it's recessive (which means it's not dominant), and it has a mutation on the X chromosome. Grace had a 25% chance of getting this stunted growth of the cerebellar vermis since we both passed on the gene.

Next are some specific genes and what they do, well, would have done had she had them.  XRCC2- Essential for repair of DNA double strand breaks.  Also, a subtle variation in DNA repair capacity (the ability to repair) may influence cancer susceptibility.  DPPX6- influence in nervous system development.  Also encodes putative component of transient current in heart.  Encodes components to make sure the heart fires correctly.  PAXIP1- link to expression of Alzheimer disease.  HLXB9- Involved in regulation gene transcription (genetic information copied from DNA - RNA resulting in specific protein formation) in lymphoid and pancreatic tissue.  Involved with mutation of sacrum!  HTR5A-expressed in nervous system.  INSIG1-Expression high in liver and plays a role in regulation of cholesterol biosynthesis, where, in the liver, the cholesterol is converted into bile.  EN2- controls cerebellar development and could cause more susceptibility to autism.  NOM1- function in protein translation (the production of a certain amino acid).  DNAJB6- Stimulates ATP hydrolysis (derives energy from food/sunlight and muscle contractions).  Your metabolism basically.

So, there you have it.  Shew...that is a lot!

Interesting stuff, huh?

 

Amanda

 

Therapy Day!

Today Grace had her first day of Physical therapy with her new therapist, Brad.  It was just an evaluation, and she did pretty well.  She kinda freaked when he laid her down on the massage table because she thought she was at the doctors office, but he went quickly enough (she was doing situps) that it was over quick as a flash.  There was a long list of things he's still got to teach her, so we'll be with him for a while.  He also does pool PT every other week, so we're going to get started on that as well.  The only thing he said is that both of her feet roll to the side (outward so her big toes on either foot are in the air), so he's going to talk with Stacy (the home PT we had/have, she will come 1 time a month now) and see if she will need to cast Grace's calves/feet for a mold, and then get shoes inserts for her feet.  I'm kinda "eh" on it, only because I'm nervous about the casting, but I'm also wanting her to have her feet straightened like they should be.

Speech went well.  I don't go in with her because she focuses more when I'm not there, but since I'd followed PT, I figured I'd follow speech too for an update for the blog!  She did well.  Talking up a storm, and she really had control over the whole situation!  It was cute!  He made her say every single thing she was supposed to before she got to have/touch/play with anything, and that's what we've also been doing at home.  We've started on colors, yellow and blue specifically, but it will be a long road for colors.  That's ok though :)  We've got a pace set for little miss and that's her pace that she chose, so we're cool with it!  She played in the ball pit about 4 times!  A couple times he threw her in, which was super cute!  She LOVED IT!!  And they played with farm animals and she got the sounds, without help, for the cow, horse, sheep, dog, and chicken.  Isn't that awesome?!  She got distracted when he got to the pig, which she doesn't know anyways, because she was fascinated with the farmer toy.  It's so cute too, that now Grace is talking more, she's pretty much non-stop.  On our way home from therapy, she saw Arctic Circle (fast food with play area), and as we drove by she said, "play?  No no...no play.  No play."  I'll bet you $100 she was signing play back there too!  She also does that with McDonalds!  It's so darn cute!  Oh, and every single park we drive by!  But with the park, Porter Park especially, it's, "play? Play?  Wee?  Wee?...no wee.  No play."  AH!  SHE'S AMAZING!!

Can you believe she had that long of day with just a 45 minute nap.  Crazy girl woke herself up and decided not to go back to sleep.  Shew!  She was zonked by the time bedtime came!  Her eyes rolled more during dinner than I've ever seen, they were as pink as a pig, and she did NOT want a bath tonight.  She just wanted her BED!

Funny little snippet before I go...We went to the college library to get a book on IEPs.  I was leaving the third floor (which is the group work floor so it's kinda loud anyways), and right as I'm in the doorway, like seriously, one foot in the library and one foot in the 3 floor stairwell with tons of people milling about, she decides to SCREAM AT THE TOP OF HER LUNGS!!  Not a scared scream.  The scream she gives when we're in ANY room that has an echo, which the stairwell did!  AH it was SO funny!  I had to discipline her, but as we were going down the stairs, she and I burst into laughter, and then I charged down the stairs while bouncing her with each step because it just makes her laugh so much!!!

Fun day, fun evening, and now that homework and blog is done, it's time for some TV.

Amanda

Grace's Backpack!

I'm going to make this backpack for Grace!

I got the idea from this blog! 

So cute right?!  Also SO HARD!  But I won't rush.  She doesn't start preschool until September, so I'm hoping to have it done by then!

Amanda

 

  

 

 

 

Pretty Girl!

I've been wanting for SO long to have Grace fit into something I wore when I was a little girl, and finally...today was the day!!  I'm so excited to finally see her in the skirt I used to wear!  I remember seeing a picture of me wearing this at Disneyland with my parents and brother :)

First picture of course has to be Miss Grace acting super goofy, and still with bed head!!

 Cutie Patootie playing with her best pal Elmo!

 She was making him dance!

 Climbing up on Daddy, her rock and support when Mommy makes her mad!  Just kidding...he's her favorite person :)  I really really really love this picture.

 Looks like they're both gazing into the future...huh?  This was the best one I got of the two of them together.  The others?  Daddy drunk eyes, Grace drunk eyes, Grace white as a ghost, and Daddy funny face :) 

 And lastly, little Miss.  Precious face pick and you know what the best thing is?  The eyes are almost 100% aligned.

Beautiful pictures from a beautiful girl.  An angel from above, a blessing with blue eyes and blonde hair.  One that will definitely put her name in the history books of this family.  She's overcome so much and she's only 2 1/2 years old.  I can't wait to see what else Brad and I have in store to learn from her.

Amanda

Out With the Old, in With the New.

Once again I have to change the blog up!  I just can't keep it the same very long :)

 So here's the old welcome picture...

...and here's the new welcome picture!!!

Super cute huh?  It's not my picture taking skills, it's just the fact that she's gorgeous. :)

Amanda

Fun Morning with Dr. Grace!

First of all, one of the funnest things about having Grace in a toddler bed is wondering what you'll open her door to in the morning!!  This morning...this is what I saw.  Now, not as bad as usual, which was weird.  Wanna know why it wasn't worse?  Because as I peered around the door to the right (she'd not realized I'd opened the door), she was busy playing with the oil heater!!  She was rubbing it with her hands.  And you know that look a person gets when they KNOW they've been caught doing something they shouldn't be, and it's like that..."AH!  YOU CAUGHT ME SO I'M GONNA RUN TO YOU AND GIVE YOU A HUG AND BE SUPER SWEET!"  She totally gave me that look when she realized I was there!  It was so cute I wish I'd had the camera so I could have captured the face!

 Well, here's the bed for little miss.  I wanted to put a picture up so everyone could see what she's graduated to!  Can you believe it?  In a weeks time I think she got out of bed all of 10 times when she wasn't supposed to.  And that's 10 for the ENTIRE week!  We have the most awesome girly, don't we?  I know, be jealous of her happy demeanor, priceless smiles, and good behavior!

 And then we get to meet Dr. Grace Hildreth!  See, doctors never stop working, even in the morning with bed head, dora Jammie bottoms with a kitty top, and the most cutest slippers in the world (which are homemade by my grandma's friend!)

 Of course she has to try to run away from the camera :)  Silly goose.  You pull the camera out and while it's off, she's all about "cheese, cheese" and right when she hears the "beep, beep" of it turning on, she's OUTTA THERE!

 "Hm...does my eye have a heartbeat?"

 This was right after she listened for her heartbeat.  You know your child's been to the doctor too many times when she knows exactly where to put the stethoscope and how it works...I'm hoping that will decrease as she gets older (the dr. visits I mean).

 Do you see Minnie?  Grace was sad about getting a diaper one morning because she wanted to see "Ehbo" instead, so I showed her that even Minnie gets a diaper on!

 "WOO WHOO!" She was SO excited to have the stethoscope!

 "Hey Mom?  Can YOU HEAR ME?!"  It was more like..."HEEEYYYYO?"

 Mama and Grace...Grace is gorgeous.

 This is what I get when I try to change her...she just thinks that it's a PERFECT time to stretch!

 ...and read...This is usually how I find her in the morning.  One day I peeked in without her knowing, and she was kneeling at her shelf that you can barely see behind her head, and she was throwing every book off of it.  There's about 15 hard books.  And then she'd sit in the middle of them and read them, talk to them, sign the animals or things she knows.  Super cute!

 She was grumpy because I told her it was time to get dressed for the day...

 ...so instead, she got a couple minutes to play with her Dora book...Thanks Dado and Papa!

 And then...AH!  She found the stethoscope again!

All in all, a super cute morning.  I'm glad we found another toy we can put in her toy shelf, and hopefully, she'll keep her hands off the heater.  I'd also noticed she turned the knob all the way up, so I don't know when she did that, but it wasn't this morning thankfully.  Probably after afternoon nap when the thing was off already for the day.

HAPPY BED HEAD!!!

Amanda

Toddler Bed

Well I am extremely excited to announce that it's been a week...or more...since Grace had her crib changed into a toddler bed and she's doing GREAT!!  She has completely transitioned over without a problem.  The past two naps she's not even gotten out, and bedtimes we don't even sit by her door and wait to see if she stays in or not!  I'm so blessed to have such a wonderful child :)  I'll bet so many people are just in fits of jealousy because she's just so rockin' awesome!!


Great job Grace!!  You are the most fantastic daughter in the whole world!


Amanda/Mom