Monday, April 29, 2013

Special Olympics

Keagan and I went to help the cutest class ever with their mini Special Olympics event today. It was so fun! Riley was excited to have us in her little world, only for a little while. And I was so glad I didn't miss this cute event!

Each "young athlete" took a turn doing 5 obstacles, and loved cheering each other on. Keagan was a big help by demonstrating each challenge for Miss B. And Riley did a fantastic job! She maneuvered great in her walker for the first four and once she was out of her walker for number five she was thrilled to do it just like her friends. That included her version of a bear crawl with her hands on the ground while she scooted. She knew exactly what she was supposed to do and did it well, Riley style!

Keagan demonstrating the jumping jacks for the amazing Miss B...

I was so proud of both my girls today! Riley had a blast and really did a great job. When we left Keagan said "I really liked helping Riley's friends! It made me feel good!" Sweet, sweet girls! That was until I tried to take off Riley's special shirt she got! Ohhh momma! That little girl was mad! She finally calmed down when Nana remembered Riley's Boosterathon shirt she could wear. Today's shirt said "Special Olympics Texas. Young Athletes Program." Now that we know how fun the Special Olympics program is and that Riley loves it, I have a feeling we just might be collecting more of those shirts one day.

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Saturday, April 27, 2013

Time with their Dad

My angels have had a fantastic week! Their dad and Grandma Debbie have been here since Monday, and they packed in as much fun stuff as they possibly could. The park, feeding the ducks, bike rides, book reading, the butterfly museum, a train ride, fishing, buying new pet fish, the carousel, painting pottery, horse rides and lots of yummy food were on the agenda from Monday to Thursday. This weekend for the first time ever, their dad had them overnight. They took a little trip to Galveston Island where they went to the safari, walked on the beach, swam at the hotel, and spent today at Sclittetbahn water park!

I'm so glad the girls had this time with their dad which is really important for them. I'm thankful I was able to make the absolute best of the time I had for this little break. And I'm really thankful that tonight my babies are home and that I was able to get a really great fill of hugs and kisses from my angels!

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Sunday, April 21, 2013

Krimmel Kolor Run

What a fantastic Saturday morning to help raise money for Kellie's choir at Krimmel. I was hesitant about going because it was early, cold and didn't know how the girls would respond to the colors. But it was a total blast and both girls absolutely loved it! Thanks to Sami and her darling friends who helped carry Riley! I should have gotten pictures of what the shower and the bath tub looked like afterwards!

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Wednesday, April 17, 2013

Prayers are Answered!

After a long day of which I just posted, I found myself on my knees. I was pleading with the Lord for comfort and strength that I desperately need. I told Him I cant do this on my own. I got up and immediately opened my scriptures. They opened to Psalms 46. This is more then enough evidence for me that my Heavenly Father hears my prayers, that He knows me, that He loves me, that He answers my prayers!

Psalms 46:1. God is our refugee and strength, a very present help in trouble.

Psalms 46:5. God is in the midst of her; she shall not be moved: God shall help her, and that right early.

Psalms 46:10. Be still, and know that I am God...

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One of a Kind

For the second day in a row a doctor told me today, "I've never seen anything like it!"

Now there is no question that my Riley is extremely special! Both of my girls are. She is absolutely one of a kind! But from a medical perspective, sometimes being one of a kind is good news and sometimes it is really, really not so good news.

Yesterday Riley had what we thought was her pre surgical appointment at her ENTs, Dr Duncan. A while back we attended a feeding conference and the feeding specialist thought Riley was tongue tied and needed to have surgery to cut her frenulum back. I was all geared up for surgery at the beginning of the summer. But the good news (depending on how you look at it) is that Riley is not tongue tied but just has a really short tongue. Not having surgery sounds great to me. But on the other hand, we were hoping that surgery would solve alot of her feeding issues. Back to the drawing board on that one.

Then today Riley and I took the 45 mile trip back to Texas Children's for her important renal clinic visit to address her high blood pressure. Dr Riley met with several other renal specialists this morning about Riley at the urging of Dr Jeewa, her cardiologist. They looked at all the blood work we did yesterday, the blood work and kidney ultrasound that we did in February and her historical blood pressures. Dr Riley's highly educated response was "we've never seen anything like it." And for the second day in a row of hearing that, my heart sank.

Riley's kidneys are just really small. That is concerning. For some reason they are producing a protein that they shouldn't which is causing her high blood pressure. The two major possibilities of causes of this, that the kidney cell structure itself just didn't develop correctly, or fully develop. And two, that the blood vessels that go to the kidneys are narrowed and so the kidneys have not received enough blood flow. In the next couple of weeks we will be doing more testing to figure out which it is. That includes going home with a blood pressure machine that will take her blood pressure every 15 mins for a 24 hour period. And an angiogram which will be a sedated CAT scan with dye contrast being sent to her kidneys. Neither of these will be easy or fun for both Riley and I.

The fantastic news is that right now her kidney function is good. Not surprisingly, little Riley has figured out a way to compensate for her little kidneys. The bad news is the doctors best guess is that Riley will eventually develop kidney disease. Treatment for that can result in dialysis and (here we go again) a transplant. And of course since we've had to think about transplants before, we know there is big questions on wether Riley would ever qualify for a transplant because of her disabilities.

But that is far down the road, IF it even ever comes to that. And it is just an educated guess that it will. My heart continually reminds me that Riley has been proving doctors wrong for a very long time! It's kind of what she does. She is a miracle and has been the blessed recipient of so many miracles up until now. So what's one more?

But I gotta say, despite trying to focus on that, I am more then discouraged tonight. Now we have one more damaged organ, one more specialist to see, and possibly more diagnosis to add to Riley's long list. That means more doctors visits, more tests, more pokes, more tears and more fear and pain for my baby! They want her to have blood drawn every 3 months and a kidney ultrasound and clinic visit every 6. How much can I ask of this sweet girl?

I have been reviewing my darling princess over in my head all afternoon. In its simplest terms, from a medical perspective I think...small head, brain with too many "bumps", weak lungs, enlarged heart, small kidneys, seizures, non verbal, weak eater, uncooperative muscles. But from a Riley perspective I think...the greatest smile I've ever seen, the best laugh I've ever heard, full of life and love, and a spirit that's so close to heaven.

Now that's the part I'm going to focus on as I go to bed tonight. It will help me get through the other part! And I know it is constantly the part that she focuses on. Once again she's an example to me! And if she could talk, she would probably say..."Mommy have faith! What's one more miracle?"

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Monday, April 15, 2013

Best Video EVER!

I'm not only overwhelmingly proud of my Riley for her hard work, determination and perseverance, but I'm also so proud of my Keagan for cheering her sister on! Best videos ever!!

YouTube Video

YouTube Video

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Saturday, April 13, 2013

Dress Up, Mess Up

It was just a regular Saturday morning with my gorgeous Rapunzel and the cutest pirate waitress you ever did see! Isn't that how everyone spends their weekends?

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Friday, April 12, 2013

One Crunchy Cake

On Wednesday I made several cakes for a cake decorating contest we were having for Young Women's that night. While Riley was at school, my Keags helped me with all the baking. So I just had to give in and let her have one all to herself, to decorate however she wanted. The girl went a little sprinkle happy and made the cutest darn cake. Miss Taryn was also visiting us and chipped in on the decorating. The best kind of friends are ones that love your kids too! And ones that love a good crunchy (because of the sprinkles) cake!

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Ditchin the Fiction

A few totally random facts about my girls that I just want recorded...

Keagans usual breakfast in the morning is a bowl of Cheerios, a bowl of Fruit Loops, a glass of water, a glass of milk, a glass of oj and at least 37 strawberries. Riley likes a variety but pretty much anything I'm eating.

Riley loves to close doors. As soon as she scoots herself into a room you will be sure to hear the door close; even if someone else is trying to get in.

When Keagan falls asleep she transforms into a heater. That girl just radiates warmth all night. Particularly the first hour she sleeps.

Riley has the cutest buck teeth with a space in the middle that you have ever seen.

Keagan really wants long hair. She often tips her head all the way back and asks me if her hair is as long as Sami's.

Riley can really be such a flirt! And she is good at picking the really cute boys to bat those eye lashes and flash that smile at.

It's quite the deal to trim both the girls toenails! Keags has supper think nails that are hard to cut. And Rileys nails are indented in the middle, like the shape of a "v". Hopefully one day pedicures will get easier.

So many nights its a battle to get Keags to eat her dinner. It's mostly because she's had a snack when she got home from school because Riley needs a snack then. But then when it's time for the Keags to go nigh night at 7, she is often hungry again. Riley usually eats enough dinner for the both of them, and more!

Riley's tantrums have now spread to school and therapy! Not fun for anyone!

Keagan loves playing on my iPhone almost as much as I do. Her favorites are making videos of herself or watching videos of herself.

Riley is so happy to go to sleep at night. When I lay her in her bed she literally squeals. Oh how far we've come.

Keagan gives the best darn kisses in the world! When she's willing to give em that is. Or when bribed. I am not above bribery.

Riley is getting the cutest little freckles on her face!

I came across some baby pictures of the girls the other night that took my breath away. It made me long for their baby cries, their baby smell and their baby cuddles. Somehow we got from there to here, and way too quickly! I don't remember enough of the in between. I'm just afraid I'm going to forget all the little things of today. The things I adore. The things that make me laugh. And the ones that drive me absolutely crazy! I love it all and want to hold on too tightly to it. Because oh how I love these girls!

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Tuesday, April 9, 2013

Where Do They Get It?

It comes as no surprise to anyone that I would have two little girls with big personalities, sprinkled with crazy! They continue to keep me laughing with them. And I fully admit they get it honest from their mom.

This morning, in feeding therapy, Miss Riley really wanted her therapist's gloves. Alot! She worked hard for them and as a result was one seriously proud little girl to sport two large blue gloves! She princess waved herself out of the office with the gloves flapping around and then refused to take them off to go to school. I'm certain she just had to show Miss B, Miss Kramer and all her friends her cool new accessories!

Keagan and I were in the car yesterday when she was watching "Sharpay's Big Adventure" for the 734th time. It's the spin off of "High School Musical" about a diva getting her big break on Broadway. After signing along with every word of one of the songs, Miss Keagan made a comment that I definitely wasn't expecting!

Keags: "Mom do you know where I would be really happy?"
Me: "Where baby?"
Keags: "On stage! Singing where everyone can see me! With the lights on my face!"

Where do they get this stuff?! I have no idea where she got that but I can't say I'm totally surprised.

The good and the bad news? We've only just begun!

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Monday, April 8, 2013

Picnic Time

A day at the park with my Keags while Miss Riley was off at school havin a ball. We were the only ones there and she got me runnin around crazy to really play with her. I was Rapunzel for almost an hour. We created great memories on a beautiful day!

One of my two favorite people in the whole wide world. And one of my favorite trees in the whole wide world!

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