Sunday, April 29, 2012

Little Dolls

Miss Keagan announced to Nana and I the other night that Maddox Black was her boyfriend! He is actually a really great choice, but Nana and I did convince her that 3 year olds don't have boyfriends. Either way she was so excited to go to his baseball game yesterday!

Miss Riley has discovered dolls! She hasn't shown much interest at all in dolls and many stuffed animals until recently. Her absolute favorite thing to do is give them kisses and play with their hair.

This is what most peoples Sunday mornings look like, right? A little quite, peaceful game of let's destroy the bathroom and pretend the cabinet is a flying space ship to take us to the moon!

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Friday, April 27, 2012

I Still Would Have Chosen You

This poem more specifically relates to my little Riley. But I am so thankful the Lord sent BOTH of my special girls to me!

I Still Would Have Chosen You - By Terri Banish

If before you were born, I could have gone to heaven and saw all the beautiful souls, I still would have chosen you...

If God had told me, "This soul would one day need extra care and needs", I still would have chosen you.

If He had told me, "This soul may make your heart bleed", I still would have chosen you.

If He had told me, "This soul would make you question the depth of your faith", I still would have chosen you.

If He had told me, "This soul would make tears flow from your eyes that could fill a river", I still would have chosen you.

lf He had told me, "This soul may one day make you witness overbearing suffering", I still would have chosen you.

If He had told me, "All that you know to be normal would drastically change", I still would
have chosen you.

Of course, even though I would have chosen you, I know it was
God who chose me for you.


It's been a little brutal around here this week! My kidney stones are just hangin out causing me horrible pain, forcing me to spend money I don't have on doctors, medicine and Cat Scans, and the drugs are making me just want to sleep all day and wallow in my pain. But we all know mommas can't always do that. But I have been so thankful for the help from Sa, Gamas and especially Nana!

While I've been down and out I've been letting a few things slide around here. I haven't completely cleaned up the girls messes before I go to bed like I usually do. The first couple morning Miss Keagan came down stairs and said "ahhhh MOM!! You didn't clean up this mess!!" But by morning three she just started saying "ummm it's messy again!" with a nice eye roll. I seriously think the Lord gave this girl a extra helping of Sassy!

But yesterday when Riley was at school she was my doctor all afternoon. She covered my arms and legs with bandages (hello kitty stickers), checked my eyes, ears, nose and heart at least 72 times and rather loudly sang her made up lullabies in my ear. Best doctor I've ever had.

Riley has been sweet of course. Except if she's hungry and yelling at me to feed her or yelling at her sister. And I do mean yelling! I pray everyday the girl will become more vocal. I guess I'll take what I can get!

Even when I'm sick life goes on and there is never a dull moment with these two!

I'm so thankful for their laughter and smiles. It dulls the pain!

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Sunday, April 22, 2012

To Be Honest...

To be honest... I am miserable today!

It was a good Sunday at church, the weather is gorgeous, and both girls played and had a great day. But I am miserable and I hate feeling this way. It doesn't happen often, so I might as well document it.

On Friday I went to the doctor with horrible kidney pain. I thought I had stones again, but thankfully it's just a bad infection. I got two great Rx of pain meds and an antibiotic. But apparently I am allergic to something and my entire body is covered in hives! I can't take any Benadryl because I don't want to mix it with the pain meds. And if I come off the pain meds at all then I'm in horrible pain. Fun huh?! So I'm slightly drugged, weary of the pain coming back and endlessly scratching my entire body! Ugggg!

This is on top of all that has been worrying me about Riley lately, and some bad news on Wednesday. I have had quite a bit of health problems lately and was at the Endocrinologist trying to address those when I had an ultrasound of my thyroid done. They found three nodules/tumors on my thyroid. One is considered large and needs to have a biopsy done. On May 1st they said it won't hurt a bit while they stick 3 needles in my thyroid!! Yeah that sounds fantastic! At this point all I can think is at least my thyroid doesn't create a deep torturous pain or itch- like everything else right now! That's a plus!

Good times all around! Tomorrow is a new day.

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Friday, April 20, 2012

Miracle Day

Yesterday Riley was the featured "miracle kid" at a Children's Miracle Network event. The event was for Walmart employees and held at a nice convention center. We were celebrating that last year the Houston area Walmarts raised $500,000 for Texas Children's Hospital. And we were kicking off this years campaign. I stood for ten minutes to tell Riley's story. There was over 150 people there including my girls, Nana and my sister Lisa and I hadn't prepared any notes. I wanted to speak from the heart and it's very easy to tell Riley's story- there's a lot to tell! And it's very easy to compliment TCH and the incredible people there who have not only saved Riley's life but also made it better. My speech went well but I think for the Kroger kick off in May I will prepare some notes. I was just so honored that we were able to be a part of such a wonderful event and that now there are even more members of Team Riley!

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Location:Spring Cypress Rd,Spring,United States

Thursday, April 19, 2012

Neurology Appointment

On Tuesday Miss Riley had her Neurology 5 month check up. To be honest Neurology is never fun and I was dreading the appointment. I went in with hard questions and much to report. I came away with some answers but still a lot of unanswered questions. Which is what I feared.

The good news first. Riley's head did grow 1 cm in the last 5 months! Her last appointment she didn't have any growth, so the doctors were worried. But they are pleased with this new growth. Also from some blood that they took in January, they found a gene mutation. It is only one side of the particular protein known as GPR56 that is "misspelled". So they refer to that as heterozygous. I am yet to do my full research on this. but they also referred us back to genetics. It hasn't been published yet that this specific gene mutation causes any conditions, diseases or syndromes. But genetics may have more information to help us. Plus this is something for them to finally focus on.

The bad news was that the ear grabbing and tounge movents that Riley has been doing lately are either small complex focalized seizures, or neuro misfirings. Either way it makes me so sad for my little girl! They are hoping an increase in her anti seizure med will help. I'm hoping too.

The other bad news was all my unanswered questions. But I should have know because they are tough questions. I am just hoping to start finding more answers as to what my sweet Riley has to look forward to in the future. Four of Riley's conditions come with a shortened life span. So I wanted more information on that. I wanted the why, when and how of the possibilities of that, and they were unwilling to even address the question. In medical school they must learn very political ways of how to deal with worried mommas! And lately I have been one worried momma! I am often terrified that my sweet baby is one bad seizure or one case of pneumonia away from leaving her sister and I. It's almost unbearable.

I say almost because this sweet face makes it bearable!

People are always drawn to Riley and she has a lot of adoring fans at TCH. For this appointment a particular nurse was so mezmerized by her that she went to find bubbles, candy and stickers to give her. We blew bubbles for 30 minutes while waiting for the doctors. She loved it! At least she had a good time!

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Tuesday, April 17, 2012

This and That

It's time for a little catch up. Last week was ROUGH!! Let's just say I had to use a knife to scrape POOP out of the rug!! Yup! Amazing huh! It was just one of those kind of weeks!

Riley has made huge strides in therapy over the last week! Yesterday in speech therapy she said a "meow!" And in physical therapy on Friday she stood on her own for 9 seconds!!

Keagan had a petting zoo come to school last week! As she describes it, there was a giraffe there' I'm pretty sure it was a Llama. Hey they both have long necks. She also says they had baby piggies, sheeps, and tiny tiny goats! Her comment to me was "don't worry mom. They had germ rub!"

Riley is one busy girl and she just got busier. Her therapy schedule almost doubled because she reached the age where she can't combine therapy session of two disciplines. As her mom and advocate I have to be her voice of what is the best plan for her, despite what others may say. This can be stressful but I am trying to balance what is too much for her and what she needs and benefits from. She now has 6 therapy visits a week with Tuesday's off to do nothing. And school five days a week! That's a busy 3 year old! I would really LOVE to add horse therapy to her team, but I just can't figure out where it would fit!

Keagan is getting older by the day! She is so smart too! The other day Gamas gave Riley a stuffed Dori fish when we went to visit her at Kleb. When Keagan got in the car after school she said "Hey it's Nemos friend!" I was surprised because she has only seen that movie one time and it was a very long time ago. Apparently she remembers them from our Disneyworld trip almost a year ago!

I chopped Miss Riley's hair last week. Paul Mitchell is definitely not calling, but I'm pretty proud that I did such a good job. She absolutely hates getting her hair done every morning. It's almost as much of a struggle as giving her medicine 2 times a day. And I'm just not one of those moms that can leave her hair undone. So I cut it short so there is less to brush, and get medicine and food in. She looks so cute!

At church on Sunday Keags told a girl that she wasn't as pretty as her cousin Kellie!

I dropped my phone in the sink while doing dishes early last week. Nothing like your phone being out of commission to make you realize how much you NEED it. Ok maybe it's a slight addiction. One which my mother loathes. But in going through all my old pics to put some back on my new phone, look what I babies!!

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Sunday, April 8, 2012

Happy Easter!

What a great Easter this year! The Easter Bunny was good to Keags and Ris. Then church was great where we celebrated that HE IS RISEN! And finally Nana and I cooked a big traditional dinner for everyone! Happy kids, the Savior and my family (at least part of it)! I'm going to bed a happy girl feeling very blessed!

Seriously what kind of mom let's their kids eat a Peep for breakfast?!

Great day!

YouTube Video

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Saturday, April 7, 2012

Easter Eggs Time

We are all going to look gorgeous tomorrow at church in our new clothes AND the blue egg dye that wouldn't wash off! Seriously how did I get it on my elbow? I guess it's just lingering proof that we had fun!

(PS mommy gave Riley a cute short hair cut today)

Before dinner Nana took the time to have a sweet moment with Miss Keagan. She taught her how to set a table. Keagan sat on her lap and carefully copied how to fold the napkins. It was precious! But leave it to Keagan to add some of her own flare to a simple task. Apparently walking around the table wasn't an option.

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Friday, April 6, 2012

Good Friday

I had a good friend ask me today if it was politically correct to wish a Mormon Happy Easter! It really made me laugh. Christ is the center of our Religion and therefor the center of our lives. He is my Savior, my Redeemer. So of course we celebrate this beautiful weekend in which He atoned for my sins, died on the cross for me and then left an empty tomb and was resurrected 3 days later. I know that my Redeemer lives as much as I know I'm tired right now! I know He loves me and made it possible for me to return to live with my Heavenly Father again one day by His unimaginable sacrifice. I am so eternally thankful every minute of every day! And I will celebrate that this weekend.

That being said, today was Good Friday and we celebrated unlike most people did. But that has more to do with us being Texan then being Mormon. We went to the George Ranch Historical Park where we toured what homes in Texas looked like in 1830, 1870 and the 1900s. Then we watched a fascinating Cowboy show. Doesn't everybody celebrate Good Friday with people dressed in period clothing telling seriously amazing stories of history and a cowboy with a handle bar mustache showing your kids how to rope cattle?!

Then my hot Friday night date was taking Riley, Keagan and Addie to Chuckie Cheese for some good old fashioned germ and cheap pizza filled fun! Now that accounts for a Good Friday!

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Thursday, April 5, 2012

A Good Heart

On Tuesday I strolled the too familiar halls of Texas Children's Hospital, but not with my usual partner. Because she has a twin sister with a serious heart condition, Keagan has to be fully examined by Cardiology every two years. And Tuesday was her day.

We had a small scare when the EKG showed possible thickening of the heart wall in the left ventricle. I have to admit I immediately got sick and my mind started racing. I just know all too well how hard that path is to walk. But the more reliable ECHO cardiogram showed everything was just fine! Thank heavens! Literally!!

Keagan was pretty scared the entire 3 and a half hours. That makes me sad but there is a tiny benefit of her sitting quietly on the rare occasion that occurs. The ECHO however was brutal. She was absolutely terrified of the dark room and weird machine. I can't blame her. Once we got a good cartoon on, I laid down on the bed with her and held her, and we literally pried her fingers off of me and got started, she was just fine.

This appointment has been on my mind for several weeks and for that amount of time Miss Keagan has wanted a new umbrella. After a trip to the gift shop to reward the brave girl with a fantastic umbrella, we drove home with smiles of relief on our faces!
Monday, April 2, 2012

My Miracle

"I thought I would have to teach my daughter about the world. It turns out I have to teach the world about my daughter. They see a girl who can't talk. I see a miracle who doesn't need words" - anonymous

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Sunday, April 1, 2012

Conference Weekend

The first weekend in April and October are such incredible ones! I am beyond thankful to hear the words of the Lord being taught by a modern day Prophet of God and Apostles during General Conference of the LDS church. And for the messages they bring into my living room to enrich and better myself and my family.

I can't help but feel so touched that there were talks that were so perfectly fitted for me at this time. There was a talk about single moms and how the Lord is with us to help us raise righteous children and to carry the load placed upon our shoulders. And one about the choice spirits of people with disabilities and special needs. I was also touched by the messages on the plan of happiness, parenthood, the importance of Christ and His atoning sacrifice and being kind and not judging others. It was an extraordinary weekend!

That being said its not easy to distract two little three year olds so that I can reverently feel the spirit as I watch all four sessions on tv. That is eight hours of trying to keep the girls busy and somewhat quite while I desperately try to extract the messages the Lord has in store for me. That is no easy task and one that usually results in an extremely messy house. You would have thought I'm raising two tornados in my home! I also disappointingly admit that once or twice (or maybe more) I may have raised my voice at the girls to stop fighting or be quite. It's pretty ironic that one such time was during a talk about how important it is to teach our children with the spirit and to show them how to live the gospel! Pretty ironic.

But they were so cute while I watched the Sunday morning session. They were actually playing together so nicely. Keagan was sharing and Riley wasn't pushing any buttons. They were laughing and working on puzzles and toys together. When I went upstairs to quickly change my clothes, I came down to them hysterically laughing. Keagan had Riley under her armpits and was dragging her around! She was then trying to maneuver Riley onto a blanket and pull her around that way! It was so funny! Their laughs are so contagious. There's not a better sound!

After Keagan was completely worn out, she proceeded to make little beds for the two of them. She put them together completely on her own and then dragged her sister into place. That resulted in the quietest 15 minutes I had all weekend! They actually laid still and giggled at each other and then pretended to sleep. It was great!

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Runny Nose

Sometimes Keagan gets allergies and apparently I haven't explained them to her yet so she was a little confused. Saturday morning at 4am I felt a little tap on my back that woke me up from a nice sleep. Miss Keagan was standing there and gave me a surprising response when I asked what was wrong. "mom, my nose is dying" she said. "my nose is dying! See!" as she pointed to her runny nose.

This girl seriously cracks me up! She wanted to know if her nose was going to go to heaven like Pakka. She is so dang cute! And so smart too! She asked the smartest little questions when I explained why her nose was running! And then yesterday she pointed out Texas and the Texas flag on my license plate! What a smarty pants! And such a cute one at that!

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