Sunday, January 29, 2012

Say Your Prayers

This crazy little girl, the one who put the pull up on her head all by herself, has started saying the best prayers. Last night for family prayer she said three of them in fact! She blessed Riley would sleep good and be happy, she blessed all of us several times, she told Heavenly Father she loves Him SOOO much and she thanked Him for our days, the scriptures, for Riley, me and Nana. It made both Nana and I cry! It was so sweet! Her words were a little mumbled but I'm sure it was heard loud and clear in heaven!

This is Riley with her new cow stuffed animal that JiJi and Auntie Nene sent her for Valentines. This is the first time she has really hugged a stuffed animal. Yes we celebrate the little things around here! She of course gave it many kisses too. She was so happy! And so was I!
Thursday, January 26, 2012

Good Glory!

It was definitely one of THOSE mornings! Riley woke up and was ready to play at 4:50. I was struggling to keep my eyes open- literally! Later when we were eating oatmeal, Riley dropped her spoon. When I bent down to grab it, she ran her oatmeal covered hands through my hair! Awesome huh? When I ran upstairs to take a quick shower, I came back down to this...

And two similarly sized messes where Keagan had "cleaned out" a few drawers. That little smarty pants then claimed she was a robot and robots don't clean up their messes! All in a robot voice of course.

Very thankfully the rest of the day got better. It wasn't too difficult to be better then that a.m. fiasco. Riley propelled herself forward for the first time on a sit toy in physical therapy and was a very happy girl after school. Despite getting scratched by another little girl today. And I bribed Keagan with a happy meal, so she was cooperative all afternoon as we ran errands. Maybe that's my problem. I need to employ the powers of bribery more often! I'm thinking that could solve alot of my problems. My mom still uses it on me and it works. But does bribery get oatmeal out of your hair?

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Wednesday, January 25, 2012


Hearts are particularly important around these parts. We have been through the ringer for sure with Riley's heart condition-dilated cardiomyopathy. But after a miracle, or a few, her heart is doing amazingly well. So thankfully it's not her heart, but mine that hurts tonight!

On Sunday Riley was having what I think were focalized seizures. So I finally started her on the anti-seizure meds that her neurologist prescribed a couple of months ago. At the time he wrote the script, I had been unhappy with the side effects of Keppra and wasn't totally on board with trying the Trileptal. So I put it in her medicine cupboard and glanced at it several times a day, constantly changing my mind of when to start it.

I started it Sunday and Riley has been out of sorts yesterday and today. She has been lethargic and has had 2 prolonged episodes of serious crying. In the episodes she sounds like she's in pain. I spoke to her pediatrician today who after her exam to confirm nothing obvious was wrong, said the two possible side effects she is experiencing is extreme headache or extreme abdominal pain.

Thinking your child is in pain is heartbreaking for any parent. But what makes it abundantly worse and is so heartbreaking is that my little girl has no way of telling me what's wrong. She can't tell me what hurts. That is SO difficult! It could be a number of things bothering her, but without knowing any specifics it's very difficult for me to help her. All I want, like any mom, is to be able to fight to fix it and make it better. But I don't even know what I'm fighting against because Riley can't help me identify the enemy. So once again I'm left wishing my baby had her own voice!

For now I've been given instructions that I already know. Give the new medication 2 weeks for her to get used to it. Continue to watch her and try to identify triggers. And if anything worsens then call or bring her in right away. Same old story. More importantly then all of that, I will pray for guidance from Riley and Heavenly Father to always help me "hear" what she needs and how I can help. Hopefully the broken heart will help somehow. Maybe it will help me listen more closely and help my Riley!

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Tuesday, January 24, 2012

Scary Riley

Does this face look scary? Apparently so if you are Keagan! She spent all morning terrified that Riley was going to GET her! Riley was completely oblivious to Keagans screams of "mom she's touching me!", "mom she's gonna get me!" and my personal favorite "mom she's looking at me!" But with that big smile, who wouldn't be afraid of Riley? Maybe it's her huge new bow! Now that's a little more understandable.

Then after Riley went to therapy and school, Keags accomplished a huge feat! I'm particularly proud of this accomplishment because I have never been able to enjoy success at this!

She actually conquered "the claw!" On her first try none the less! And then she retrieved a second stuffed animal for her sister! Maybe she's trying to make up for the insults this morning.

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Monday, January 23, 2012

Thank Heaven for Little Girls!

I remember laying in my hospital bed in Hawaii after the girls were born, trying to pick their middle names. It's funny that with all their Hawaiian family members that my mom was the one to buy me a Hawaiian names book. I read the entire book and picked what stood out the most. I was just hoping they fit. That was an incredibly crazy time but I definitely got some things right because their names are perfect!

Keagans middle name is Hi'ilani which means held in the arms of heaven. Perfect! She is a special little girl with a strong, valiant and courageous little spirit. Tonight she said the most perfect little prayer at dinner, completely by herself. When I dropped her off at school she held my cheeks and intensely told me to have a great day. And yesterday at church she was very protective of Riley who was in Sunbeams for the first time.

Riley's middle name is 'Alohilani which means happiness and joy sent from heaven. There truly could not be a name more perfect for her! I know the Lord sent her to spread joy to so many people! And she does an excellent job of that! She had her therapists laughing so hard today by coloring on the floor knowingly while mommy was telling her no. All with a huge mischievous smile. She danced great to music in the car with me today, and now folds her arms by putting one hand over the other during prayer. Almost anything and everything she does brings a smile to someone's face!

There has never been a question that these two little girls are very special. The Lord saved them for the right time and sent them together to be my angels and bring so much to my life and many others! And theres no question my dad had something to do with it. I know that when my girls came from heaven, they each brought a little piece with them! And so everyday I thank heaven for little girls!

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Saturday, January 21, 2012

The Oxygen Mask Theory

We had a really great Relief Society (women's group at church) brunch this morning for our monthly activity. I was a part of the planning and preparation and I'm pleased it turned out so well. But it has really got me thinking. The focus was on how to make yourself a priority. The wonderful speaker gave such great information and advice. But I went away knowing I REALLY struggle with doing this and don't see any possibility of that changing much in the future.

Amidst her talking about scheduling time for ourselves as mothers, I thought of a good metaphor. I was reminded of the many plane trips that I have taken and of the oh so captivating safety instructions. Before it was shown on a screen, for those flight attendants, the worst part of acting out the warnings had to be putting on that oxygen mask. I'm claustrophobic just thinking about it. My favorite line is when they instruct anyone traveling with little ones to place the mask on themselves first. And then their helpless children.

That sounds fine and dandy in theory. Those genius people at the FAA must really think those masks will suddenly drop out of the ceiling and we will casually slip one on ourselves, then one on our kids. But do they really take into account what would play through a mommy's head in a situation where oxygen masks are actually needed? Every one of us would just want to save our children! I know with certainty that getting a mask on myself would come second, without a doubt.

Sometimes I feel like I'm living in a plane with low oxygen. I often feel that way. Most days the oxygen masks are hanging from the ceiling and I'm more then happy to get one on each of my girls and make sure they are happy, comfortable and safe in it before I even look around for my own mask. And by the time I actually find my mask, I'm way too exhausted at night to even worry if it is on right. I go to bed knowing tomorrow I will spend the entire day making sure Keagan and Riley get all the oxygen they need.

I am more then happy doing this, but it does go against everyone else's advice. I read and hear it all the time that a mom can't take good care of her children, until she takes good care of herself. But HOW do I do that?

Yes my body, my mind and my spirit could use the oxygen! Without question. I could benefit greatly from scheduling time in for myself, somewhere in my busy schedule. I just truly don't know where to begin or what that would even look like! I'm a single mom of one special needs child and her typical twin sister. My life is full of therapy and doctors visits, school schedules, home therapy, medications, health management, pretend play, tickles, book reading, snuggling, tantrums, time outs, dressing, feeding, cleaning, laundry, ECETRA, ECETRA, ECETRA!! So where do I fit in time to put on an oxygen mask? Even if I write "place oxygen mask on first" at the top of my to do list, it will probably be the last thing checked off for the day. Thats if it even is accomplished.

I guess at this stage in life I am going to just resign to try and get SOME oxygen, more often. I'm going to really commit to trying to schedule in some "me time" more frequently then I previously have. I will continue to make sure my girls have all the oxygen they need and want. And I will try to take more breaths from my own mask during the day. No this is not following the guidelines and all the advice. But for today it's the best I've got. So please tell the FAA, that will have to do.

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Thursday, January 19, 2012

Baby Steps

This little Riley of mine doesn't talk, but her example speaks volumes about hard work, persistence and a good attitude! I'm so thankful for the lessons she teaches me every day!

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Tuesday, January 17, 2012

Amen Girl

My Keagan loves to add a good "amen!" to the end of things. The last couple of days she has been "reading" books to me and Riley. With every story, when she gets to the end, she closes the book with an "amen!" And she has prayed for a long time now but sometimes all we really understand is the strong and confident "aaaaamen!" at the end.

Tonight was her best use of the word. She was watching me color my own hair and was completely fascinated. I stopped and leaned down to tell her "Keagan you are the most beautiful girl in the whole entire world!" She looked at me with a mischievous smile, pointed a finger in my face and said "aaaamen!" I'm so glad she agrees!

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Sunday, January 15, 2012

Infinite Worth- Riley & Mia

Since Riley has been sick it has given me some extra time to do something I LOVE doing...just hold and stare at my baby! Marvel at the miracle she is. Admire her button nose, the bright light in her eyes, her gorgeous lips, and her darling dimples. Her expressions are priceless and I probably too often cover her face in kisses and squeeze her too tight.

Today when I was staring at her I thought of her infinite worth. She has a divine nature and a very special purpose here on this earth. Just like her sister. Her disabilities and challenges don't take any of that away. Not one bit.

Recently there has been public outcry over another special little girls plight named Mia. It seems a medical board has decided that Mia's life does not have as much value or worth then a "typical child". Mia is considered "mentally retarded" just like my Riley. But Mia is also in desperate need of a life saving Kidney transplant. One in which she may not get because a handful of doctors can not see her infinite worth, her divine nature.

I remember the night in December of 2008 like it was yesterday when a Resident at TCH stood in a small ER room at 3am and told me Riley would need a heart transplant. I also remember the worst doctor visit of my life, about a year later when a different doctor labeled Riley as "mentally retarded" and told me she would probably never qualify for a transplant because of it. Riley's heart is stable today. But, Mia could be Riley. And Riley could be Mia.

What don't these doctors see in these sweet children of God that would let them determine they are not worth it? I don't understand what kind of person can look into one of these special children's eyes and be ok with walking away, leaving them to die. I don't pretend that decisions on transplant recipients are easy. These doctors have unbelievable decisions to make that I know are difficult and anything but black and white. But I do know that these amazing little girls ARE WORTH IT! The quality of their lives isn't just measured in their own happiness and progress that they make. It can also be measured in the many lives that they touch and change forever! Their impact on this world is huge. And they would be greatly missed if unable to get the health care that they need!

If you read this then it is your call to action. PLEASE sign this petition in support if Mia and her incredible parents. And I would love to know you did!

You can also read her story here:

Our Second Home

What's a good Saturday afternoon without a trip to the ER?! Riley had a temp of 104.2!! Both doctor and nurse were betting on pneumonia because of a really high white blood cell count. But I guess you can say we are lucky she just has two really badly infected ears. Poor baby!

And it's only 15 days into 2012 and my resolution of no ER visits this year is already broken! Bummer all around!

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Thursday, January 12, 2012

This N That

Life has been full and a little crazy around here. A few of our happenings as of late...

The other morning when I was making breakfast in the kitchen, Riley was trying to interact with Keagan by patting her- a typical behavior for Riley. Keagan was busy watching tv so she was annoyed with her sister. This is what I heard from the other room. "Riyee stop!" pause. Riyee stop!" pause and then a big sigh. "I haf to tell you somefing Riyee. You are not supposed to touch other people's bottoms! You get in twoble at school for that! So don't do it!" There is nothing like advice from your sister!

Riley LOVES the cows that we pass all the time in different spots around town. As soon as she spots them, my smarty pants starts saying "moooooo!" It's the only time she says an M.

Yesterday morning on the way to school, Keagan told me she couldn't wait to see Kyle and Matheson and she wanted to give them big hugs and a kiss. We talked about how hugs are awesome but that maybe she can just save her kisses for her family. After she argued and I insisted, she responded with a big "oh man!!!" THEN a car cut me off and she yells "holy crap car!!" Being the responsible mother I am, I immediately scold her with a "Keagan we don't say that." And then I get the dreaded come back of "You do! And Sa does!" Yup I am a responsible mom!

Riley was jealous the other night of Keagans new shoes I had gotten her. This is awesome that she has this age appropriate emotion and was expressing it to me by stealing one away from Keagan and bringing it to me with alot of babel and an intense look. The next day I took her to Target to get a pair and she was so proud of them. She immediately showed her therapists, teachers and cousins when seeing them that day by lifting the shoes up and modeling them.

The girls were actually FIGHTING the other day! This is a new ordeal as Keagan usually rules her passive sister. But that set up has changed. They were fighting over toys and pushing each others buttons. Keagan is usually the queen of dramatics in this house, but Riley was throwing herself down on the carpet and melting in tears when she couldn't have Keagans toys! I had to laugh and celebrate a little something that was totally normal for 3 year old twins!

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Wednesday, January 11, 2012

Before and After

This is Keagsn's darling pink cowboy hat BEFORE...

And this is it AFTER she THREW it out the window of the car...

I know you have many questions, so here's the answers...

YES we were on Spring Cypress, a busy 4 lane road, when Keagan wanted to see if her cowboy hat could fly.

NO it can not fly.

YES it was as flat as a pancake!

NO her momma isn't just going to buy her a new one at Target like she suggested. You can't even buy such hats at Target...even in Texas.

YES she got in serious trouble.

NO we did not even find the hat on Tuesday when she threw it! We found it in the grass on the opposite side of the road today.

YES the hat hit the hood of another car obviously startling the people inside!

NO I do not know where she gets her ideas and personality and why she does the crazy things she does!

YES this girl is somethin else! One of a kind!

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Monday, January 9, 2012

Cowgirl Keagan

Apparently Keags has a liitle bit of country in her- not just rock and roll! And she has been displayin it proudly. Last night we had a really fun Swiss Raclette dinner at the Foster's house. But Keags was reminding us all that she's a Texas girl! She went around in her get up yelling "yee haw cowboy!" and even convinced Addie to be her horse.

She has cherished her pink cowboy boots for a long time now. They are a hand me down from the Foster girls and were bought by Nana and Pakka years ago. Last night Sa gave her the matching hat and the bigger sized boots. I have a feeling we are going to see alot more of Keagan's cowgirl side! So I guess them cowboys betta watch out!

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Saturday, January 7, 2012

Do It Myself!

It's a natural stage for all toddlers. The "I do it myself" stage. Keagan has been saying this to me for quite some time. She wants to open the car door herself, brush her teeth herself, get a snack herself, get dressed herself. Little miss independent.

Most mommies just grin and bear it through this stage and let their kids exert their independence. But when you have a disabled child like Riley, it makes this stage alot harder AND alot easier. The mechanics of it are harder. Riley just went through SIX pieces of cheap pizza pretty quickly to get one piece worth in her mouth. And she has created quite the mess in the process. But, once I look past having to clean up the 785th mess of the day, having Riley go through this stage is easier because I'm actually celebrating that she can do it! It's so great that she can get some pizza in her mouth! Im proud of her for trying so hard. And she's proud of herself! So yeah I guess that seriously expensive and seriously gourmet frozen pizza was totally worth it!

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Friday, January 6, 2012

Stellar Week

Being a mom is one of the toughest jobs in the world. A couple of the reasons I think it is so difficult compared to a typical job is because you don't get much feed back on your performance, you don't complete projects, and you don't ever get any time off. EVER! I take my job seriously and try to be the very best mom I can be. But to be honest, some days and some weeks I just do it better then others.

So how am I to gauge when I'm having one of those not so stellar weeks? When I have a smart little 3 year old like Keagan, she will be happy to point it right out!

I laid down in her bed with her tonight and we were having a nice little talk and cuddle moment when she says to me..."mom! You fuss-tated alot now?" Awesome! I explained mommy hasn't felt good lately so I have been frustrated, but that she also needs to be much less whiney! Much less! Then I got a big hug and an "it's ok mommy! It's ok!" I'm so glad I'm forgiven! And glad we talked it out- with my 3 year old!!

Here's to hoping tomorrow I'm not so fuss-tated! Or I'm pretty sure I'm going to get called out by one of my two bosses. Again!

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Thursday, January 5, 2012

Right on Time

We have all been sick with colds so it's been a seriously blah kind of week. Then right on time the Lord sends us such incredible blessings! A Nana who let's me sleep, a Gamas who comes to play, boss/friends who give some incredible gifts, and a complete stranger who heard our story and wanted to generously help! I'm grateful to the point of tears! And no that is not the fever, body aches, and stuffy nose talking.

Feeling so blessed!

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Tuesday, January 3, 2012

Back on Track

Today the holiday ended and we were back to our regular schedule. That means Riley is busy with therapy in the morning and back to school. During the break she has cried every time we passed the road to turn for her school. So today when she realized we were headed there, she almost couldn't contain her excitement. Then grama Linda came with us to pick her up from school. She couldn't have been happier.

Keags doesn't go back to school until tomorrow. So we went and had a picnic at the park. She was fixated on the quack quacks today and was so determined to pet them. Too bad none of the ducks felt the same way. She was playing with an older girl for a little bit and her little brother told his mom who was sitting next to me that he didn't like Keagan. He said it was because "she is too pretty! And that's annoying!" I actually laughed out loud!

There is something comforting to me about getting back to the routine and just having a "normal" day. With so much excitement in the last month, normal is great! And I hate to admit it but when Keags is at school tomorrow too and I have 3 hours to myself to get things done, "normal" is going to be even better!

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Sunday, January 1, 2012

My Sunbeams

This picture cracks me up! It was a picture kind of Sunday morning because my little girls became Sunbeams at church today! I can not believe my babies are that old!!

Unfortunately Riley still has a little cold, so she stayed home with Nana. But Keagan was definitely a big girl today! She left Sacrament early with Sister Allred to help her set up the classroom. And when I got her from her class they said she was a helpful angel for the 2 hours. I have to admit I peaked in the window a couple of times to spy on her! Oh, my big girls!

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