Wednesday, February 29, 2012

Worthy to Rise

I'm a girl who loves to sleep! Back in my college days I made it a strict principle to only wake up in double digits! But these days my alarm clock of little girls tears goes off early. Usually somewhere around 6 am. Give or take a half hour. I would love to sleep in, but I also love to see my girls gorgeous faces and get hugs and kisses each morning!

Yesterday it was great to wake up and have a tea party with the my girls bright and early! And today I was excited to get up because I was determined little Miss Riley was going to have 2 ponies for the first time!

They are too cute! And (normally) they are worth waking up for!

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Monday, February 27, 2012

If They Only Knew

Today was one of those hard to swallow days. Miss Riley and I had a meeting with the state for them to do some testing on Riley for the Mental Health and Mental Retardation division of the Health Department. Some very nice and well meaning people poked all around in our personal lives asking every question possible about both Riley and I. And then they administered an IQ test and a behavioral assessment. It was necessary for Riley to be placed on waiting lists for several state programs. Necessary, but not fun!

I returned their smiles when the admissions coordinator and the Psychologist determined, as others have before them, that Riley is considered mentally retarded and therefore qualifies for services. I actually prefer the term intellectually disabled, but MR will do. When I had to sign my life away to agree with their findings, I so desperately wanted to add an addendum to their paperwork. I wanted to take more time in the meetings to really tell them about the girl they were categorizing. But there isn't enough time to explain or the words to describe how wonderful my little Riley is.

A simple test does not measure the light that shines from Riley! It can not gauge the intense joy that spills out of her very being. It doesn't show her spirit of determination or gauge her level of persistence. It can not appraise the value of her example and the effect of her laughter on so many. I just wanted to explain to the 6 people we talked to today that if they only knew Riley, they would know so much more then any test could show!

I walked away just being so thankful that...I know better! If they only knew.

This is Riley trying to escape under a desk while they dove into my finances! I wanted to escape with her!

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Sunday, February 26, 2012

I Wonder...

Am I the only mom who has a 3 year old who randomly screams "dance party!!!" in the car? And yes BOTH her sister and I happily oblige her with our very best dance moves!

Am I the only mom who can so easily make a different 3 year old SO happy by letting her wear princess pull ups for the very first time last night? I made Rileys week with some Cinderella Pull Ups!

Am I the only mom who thinks she's having a nice little moment with her 3 year old when that little girl says "mom you have stains on your face!" while she is disgusted and tries to wipe off my freckles?

There is no two 3 year olds like mine! I'm one lucky momma!

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Saturday, February 25, 2012

Go Texan Day

There is no question that I love Texas! There is truly no better place to live! Reason number 473 is GO TEXAN day which we celebrate in Houston. It's the day the trail riders ride in to town to kick off the greatest Rodeo in the country.

GO TEXAN day was Friday and little miss Keagan couldn't have been more excited to dress up for the festivities! She woke me up at 4am with her boots and hat on! I convinced her to get a little more sleep but her excitement did carry her through out the whole day! Riley on the other hand was just not havin it. But we still know her heart is in the Lone Star state!

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Friday, February 24, 2012

Parent Teacher

I had the greatest Parent/Teacher Conference for Riley last night! She was so excited to have me back in her classroom and to show me around. Once there and out of her wheelchair, she scooted around the class showing me all her favorite things. She beamed with pride as she grabbed her favorite book about a purple hippo, her favorite princess puzzle and her favorite toy which is this cute little house where she can scoot through the door and close it behind her. I was so thrilled to see her excitement and level if confidence and comfort first hand!

This is my darling girl in a special chair made specifically for her. Mrs Kellogg says people are amazed there is a student that actually fits in it!

Her teacher is pleased with how she is doing! She is doing well with meeting all of her goals on her IEP- Induvidualized Education Plan. She has started using an elevated surface and a small bead crayon to help her handwriting skills. She does alot of fine motor activities and speech therapy which includes the GoTalk communication device. She is also using a stander and a gait trainer/walker ever day!

Mrs Kellogg said she is the most social of all the students in the class and that last Friday she walked around in her walker giving all her friends high five! That makes me beam! I'm so excited that she has this wonderful and positive world where she can learn and grow! I am really happy with her teachers and feel very blessed that Riley is getting a great start to her school years!

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Sunday, February 19, 2012

Shouldn't Be

Two things that shouldn't be happening in my house...

I really should not have to say this to Keagan AT ALL! Let aone 4 times in the last 3 days!
"My pants are not a tissue!"

And I really should not go to bed on a Saturday night with a clean house and wake up on Sunday morning to quite a mess! It seems a certain 3 year old was up and about last night. She rearranged some chairs and her night stand in her room. She took ALL the blankets and sheets off the two beds in her room and piled them into a mountain of bedding in the family room. And she went downstairs and played with a bunch of her toys during her night of freedom. My guess is she was awake for a good 2 hours before she came to climb in bed with me at 3:30 am. My first hint that Keagan had a wild night was when I woke up to realize my comforter was gone but that she was sleeping in MY bed with the sheet off of HER bed! That silly girl!

Even when we are all supposed to be sleeping, there's never a dull moment around here!

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Saturday, February 18, 2012

Smiley Riley

The question I ALWAYS get about Riley is... "Is she always this happy?" And the answer is equivocally YES!

Tonight I realized that her cheeks must always hurt from all the smiling. But her Uncle Todd pointed out that by now she has cheeks of steal! She seriously has the greatest smile ever! It's so pure and authentic. It oozes joy and looks like it's going to break her face because it's so big! Her smile is what makes her so gorgeous and draws people in. It's one of my favorite things about her for sure!

One of my not so favorite things? Maintenance of a cute little hot pink wheelchair! I wasted 3 hours of my life today cleaning that dang thing and trying to adjust the parts to Miss Riley's growing body. It required TWO trips to the hardware store. One by the helpful Uncle Todd so that I didn't have to pack all the kids up in the rain. And what did all that time and effort get me? A clean chair that needs to be serviced by a professional because momma struggles! But a princess chair needs to be perfect! It's gotta match that smile!

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Wednesday, February 15, 2012

Dancin In The Rain

Sometimes you just gotta dance in the rain!
In your favorite Cinderella underwares!
And cowboy boots!

Especially when you've been cooped up for days at home with your sick mom and sister. This girl always knows how to liven the party!

This was taken shortly after she tried to BUY her way out of a time out. I threatened her with it and she pulled a dollar out of her pocket and said "how bout you just take this!" with a cheesy smile.
This girl! Never a dull moment!

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Tuesday, February 14, 2012

My Amazing Valentines Gifts

YouTube Video

YouTube Video

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I think maybe our little family needs to be quarantined! Just maybe we have officially earned the title of "sickly" people. Because we are sick! Again!

And this time it's HORRIFIC!!
It's the barfies!

When the girls were first born as micro preemies, one of their doctors told me that they were going to have lowered immune systems and get sick often. Well add in the fact that Riley is medically fragile and that unfortunately their momma doesn't have a good bug fighting system herself and SNAP...we get sick. All. The. Time!

On Sunday I was on the brink of my own death when I had the unbelievable experience of throwing up SEVENTEEN times! Yes I counted. I always do.
By Monday morning I was doing better and was thankful I barely survived. But by Monday night I would have done it all over again if it meant my sweet Riley didn't have to! She got hit hard Monday night and threw up 8 times in 2 hours!! She is better today but still not great at all.

Miss Keagan hasn't gotten the stomach bug...dare I say it...yet. But she does have a pretty nasty cough that is keeping things exciting. And I have officially run out of Lysol so, we will see what tomorrow holds for her. Meanwhile we have been sleeping like this...

Nana is so lucky she is in California and missing all the fun. Since her bed is the biggest in the house, we have obviously taken over and set up shop. I needed to monitor Riley since she can likely aspirate, and Keagan felt left out of course. So here we are. Two nights in a row!

I'm exhausted to say the least and I spent my Valentines Day barely able to use the restroom on my own- twice I was holding someone! I am getting a little stir crazy but poor Keagan is all the way there. I am unbelievably thankful for Makell and Grama Linda who helped us survive the last couple of days! And grateful for Zofran, Ginger Ale and Priesthood Blessings too.

Like they always say, this too shall pass. And at least I got to spend my Valentines Day with my two true loves! Mommy loves you girls! Barfies and all!

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Friday, February 10, 2012

A Good One

Enjoy the little things in life. Because one day you'll look back and realize they were the big things!

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Tuesday, February 7, 2012

Down But Not Out

Riley's teacher at school is gentle and positive- like a great Special Ed teacher should be. In a kind way today, Miss Kellogg brought it to my attention that since Riley started her new seizure medication she has been almost completely non verbal at school. It was all I could do to not drive away in tears. This goes against all that I am hoping for and my reasons for taking Riley to school. So today I am very discouraged.

I am down but not out.

I am down because I have made it abundantly clear that my priority for Riley, my number one goal is to give her a voice. I so desperately want to hear from her what she wants and needs. What she likes and dislikes. What she is going through and how all of this is for her. This would change both of our lives dramatically. My heaviest thought today was "how is she ever going to learn to speak, if she's not even trying?!" The good news is she's vocal at home- which was very evident during dinner tonight as she was very particular of what I was feeding her and when. So I'm dismayed that she is silent at school and reluctantly frustrated by that.

But I'm not out because of who Riley is. She's a joyful but determined little girl. She won't give up. That I know. She is only 3 and we have a long way to go and alot of work to still do. I have high hopes that the combination of Speech Therapy, school and an active and safe home life will help Riley flourish and experiment to find that voice. Plus I'm still heavily hoping for truth in the idea that she is still just getting used to the powerful medication and will return to her old ways soon and be able to grow from there!

Either way, like we have done before, we will adjust and keep pushing forward. I will try not to be discouraged and focus on giving her all that she needs. Come what may, I WILL find my baby's voice! One day! Somehow!

Just wish it was today.

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Monday, February 6, 2012

Grow Up!

Tonight Keagan told my sister and I: "I want Riley to grow up!" I knew exactly what she meant. She wants Riley to talk and interact with her on her level. She wants a typical twin sister, and I can't blame her. So much of our family dynamic must be confusing to Keagan. She will figure it out soon enough and hopefully one day appreciate it. My sister responded with an " we all do to Keags."

On the other hand, Keagan is growing up way too fast! This is Kyle. We hear about him ALOT in our house. It's her friend from school. But its also the name of anyone or thing you ask her about and the invisible little boy in the house who does things like steal toys from Riley to give to Keagan. She's only 3 and a boy makes her so excited and giggly. Oh no!

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Friday, February 3, 2012

My Little Miracles

Tonight Keagan and I took a little walk down memory lane as we looked at pictures on Nana's phone. It's an activity that she LOVES to do and does so on my phone constantly. We came across pictures of the girls as newborns and it almost took my breath away and brought tears to my eyes.

Keagan saw the pic of her when she was intubated and said "heeey! Who put that thing on my face!?" And look how teeny tinny Riley's foot is compared to their Uncle Jacques thumb! The 3rd pic is of the girls at 7 weeks old when I finally brought Riley home from the hospital. And the last pic is of my angels just days before the three of us (with amazing Aunt Vicki) got on a plane to leave Hawaii and move to Texas.

I am constantly reminded that both of my girls are nothing short of little miracles. In these pictures they might as well have had little wings and halos to match! When I'm exhausted at the end of a busy day and I am sick of cleaning up, changing diapers, giving instructions and listening to whining, I still do marvel that the three of us are happy, relatively healthy and living this wonderful life. We are so blessed.

I do believe in miracles. I get to love two of them everyday!

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Thursday, February 2, 2012

What Kinda Question Is That?!

Today was the first time I have ever used a teenage girl to babysit one of the girls. Ri was at school so Keag's friend Kennedy came over to play and her big sister watched them while I ran errands for a couple of hours.

On the way to pick up the girls, I was prepping Keagan for the new experience like I had been doing all morning. I mentioned a couple of things that I would like her not to do. And she responded with some GREAT questions. Typical Keagan to ask for specifics and try to figure out everything that is going to happen.

Keagan: "Can I play outside?"
Me: "Sure, if Cameron says yes."

Keagan: "Can I ride my scooter?"
Me: "yep"

Keagan: "Can I get naked?"
Me: "WHAT?!?!?!?! No you can not get naked! You need to keep all your clothes on!"
Keagan: "mom peassssssss! I wanna take my clothes off! Peassssssss mom!"

Where exactly did my child get such an idea? And how did we jump from innocent scooter riding to a mischievous strip?! Even with the amazing stuff she often comes up with, I'm not usually so flabbergasted. I just didn't see that one coming! Luckily she actually listened to me and I came home to a fully clothed, yet still very happy little girl. I'm sure her babysitter was thankful!

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Wednesday, February 1, 2012