Rykas Giggles- Laughing away SMA

Hello! Lots to say and share, but not enough time to get it all in. So for now, enjoy my happy little baby that is full of joy-giggles-and sweetness!  

SHARE the video- Lets laugh away SMA- Help CURE SMA and keep the Giggles Coming!

Participate - Donate - MAKE A DIFFERENCE

Tomorrow will be the third annual 5K to CURE SMA. This year we are raising funds for the Gwendolyn Strong Foundation. (www.theGSF.org) 

Denalli requests that you come out and support this event. Denalli herself will be racing in her power-chair and Ryka will be pushed in a stroller. 

Look at her GO!

Why not participate?!? YOU have the opportunity/privilege to WALK or RUN! 

Why not show YOU care about THOUSANDS of other kids that will never have the chance, the opportunity or strength to walk or stand on their own? 

What a HUGE gift you have. You CAN WALK! 

5K=3Miles

 Walking 3 Miles=1 HOUR

1HOUR= changing the LIVES of so many!

 Participate- Donate- MAKE A DIFFERENCE

See you tomorrow: 7:30am at the Durkee Lake Boat Dock. 


BE THERE! 

A little bit of Fun

So a while ago, a kind friend let me borrow her Maxi dress to wear to a special occasion. (Thanks again Megs!!)  Before that day, I had never worn a maxi dress, or even been remotely interested in EVER wearing a maxi dress... or ever thought about the slightest possibility of me trying on a Maxi dress... Why was I so opposed to a Maxi dress?!? I do not know. Now that I have experienced the comfort and goodness of a maxi dress, (and put my boots and jeans in the closet for the day) I just can't seem to get enough of them! :)

Here is a picture of the original dress. (and my chunky little 5 month old...)  After wearing the dress, and falling in love with it, my gracious friend let me pack it up and take it home with me. I wanted so bad to re-create another one just like it.

When I got back home, I quickly realized I did not have the fabric that I needed to make the maxi dress I had in mind.... (insert very sad face) Thats when another friend came to the rescue, and gave me some fabric that she had in her "stash busting pile". The fabric that she gave me just happened to be my favorite color (purple) and it was PERFECT for the project ahead. YAY for me (and her!)!! So, with scisors in hand, I carefully laid out the fabric and the dress,  and started cutting and sewing away. After an evenings' worth of work, this is what I was able to re-create: 

I absolutely LOVE it!! I'll have to make a few minor adjustments to the next one I make, but in all, I think it turned out just right! 

I LOVE the feel and the movement of the fabric. Also, it isn't very often I get to wear something that fits me in the waist AND length. So FUN!!  

It seems to work very well as my "mama hippie dress"... My little boy seems approve too, as he compliments me every time I have it on. :) 

What are your thoughts? 

I say: 

Cheers to good friends and great Maxi dress' :) 

SPINAL MUSCULAR ATROPHY AWARENESS MONTH

Thats right folks, August is SMA Awareness Month! What does this mean? This means we need to rally together to let the world know about SMA, so that the horrible disease can be cured, kids can be helped, babies can be saved, and long futures can be a possibility.

Seriously people, this disease is so scary and so devastating. Just a yesterday, I was sharply reminded  yet again, how fragile and weak SMA has made my little miss Denalli... I know that that she is unable to walk, I understand that she can not bear weight, lift heavy things, take caps off of most markers, wash her own hair, wite with a pencil, dress herself, get out of bed, pour syrup on her pancake, climb up on the couch, swing in a normal swing, cut her food, put her shoes on, go the restroom alone, or run across the room to snuggle up on my lap and give me a hug. Yes, I get it... she is fragile. And yet, every time I see something else that SMA has stolen away, my heart aches, my soul aches, and all I want is for her to STOP GETTING WORSE >>>

Yesterday, I walked into the living room where Denalli was sitting on the floor watching a movie. I had Ryka on my hip, and needed the Wii remote that was laying beside her, so I asked her to hand me. She eagerly grabbed the remote with both hands, then with all her might she struggled and struggled some more to get it into my outstretched hand. 

At first I was impatient with her because for a fleeting moment it seamed like she was stalling, but then I quickly realized she was serriously STRUGGLING to lift the remote above her head. For a moment, I just stood there, unable to say anything, with a flood of tears burning behind my eyes. My mind was screaming, "NO, She is strong than that.. it is just a wii remote... ". I then reached down, supported her little hand and helped her lift the remote high in the air. "uhg, thanks mom", she said with a sincere smile, "that was heavy...".

I quickly thanked her then left the room to let the flood of angry tears and frustration go. I really do try not to let her see my heartaches of wanting "normalcy". To her, life is great and a wii remote is "really heavy".  After a while, curiosity got to me, so I grabbed the wii remote and went and put it on my baby scale... Do you know how much a wii remote weighs?!? To be exact, our wii remote weighs .36 pounds or 5.76 ounces, or simply put- it weighs less than 1/2 a pound... Because of this genetic disorder and because God has a plan for her life, Miss Denalli- at almost 6 years old- struggles to get 5.76 ounces above her head... And in all reality- and she is considered STRONG in the SMA world!!! The little episode that tears my heart in two, is so minimal compared to many other SMA families. A lot of SMA parents never even get to see their child sitting on the floor by themselves watching a movie....  

Wow, perspective is everything isn't it?!?!  

So, like I said before- we have to get the word out about SMA. We have to let the world know that this disease is SOOOO close to a cure and that they can help get the cure here faster too. It is incredible what the drug therapy has done for Denalli. I would absolutely hate to see what SMA would have taken away from her if we were not involved in the drug trial study. We are so blessed to be right where we are today. I just have to continue to remember that everyones' days are numbered, moments are precious and God's plan is everlasting!  

~Thanks for stopping by~ 

~Twirling Fun~

 One evening, Mr. Cowboy informed me that, "the girls need more pajamas." This was not an unknown fact... I had it on my "to do" list, but just hadn't gotten to it yet. So, with his suggestion, I eagerly grabbed my needle and thread and disappeared into my sewing room. After a while, here is what came to be.... 

~PILLOWCASE DRESSES / PAJAMAS!!~ 

~The girls were pretty excited to have new matching dresses~

~Group hug showing off the length~ 

~They were a little plain on the bottom, so I added some white lace and a little lace flower~ 

~aww, sleepy time!~ 

~More smiles~ 

~Tiny Toes and Bows~

~What happens when you put a little girl in a new dress?~? Well, she has to twirl of course! Here is the first little princess practicing her ballet routine ~

~Concentrating and planning out the perfect twirl~ 

~Perfect form~ 

~twirling, twirling, twirling~ 

~Next up is my little pebbles~ 

~Swing to the right~

~And twirl to the left!~ 

~ Adding some speed ~

~This girl is a twirling machine~ 

~Step, two, three...~

~Ballerina  pose~

~The dress (and twirling session) was a success! ~

OKAY, so here is what I REALLY wanted to show you.... Like I stated previously; any little girl that tries on a new dress wants twirl.... right?!? Well what about my oldest daughter who is un-able to stand/walk?!? Of course she wants to twirl like a ballerina! After her sisters were done doing their twirling dances, she looked at me and said, "Mama, I really want to twirl too..." I looked down at her and a moment of aching pain shot through my heart. I thought, "oh how I hate SMA... how in the world are you going to twirl like your sisters, when you can't even stand?!?" But, with her determined little eyes staring at me, I picked up my camera and said, "Okay Denalli, show me your twirling... ". So, without further a-due, here is my determined little fighter, twirling in her new dress~ 

~Getting her pose ready~ 

~And TWIRLING!!! ~ 

~Twirling around.. ~ 

~And around...~ 

~And around...~ 

~Just like a ballerina princess!~ 

Yes, I did cry- and I choke up every time I see these pictures. I am so very thankful for a beautiful little girl that shows me what life is really about.. 

Oh, and yes, I could not take pictures of my 3 little girls twirling without my boy wanting his "twirls" caught on camera too! haha... 

~perfect form~

~Look at him go!~ 

~These are man twirls... (more like flying if you ask me...)~ 

~ THE END~ 

Home From Mayo!

 I want to sincerely thank all of you who have been praying for my health. There is "proof in the pudding"-  the Lord has defiantly been working in my life...

We ended up going to Rochester, MN, because we felt that the possible severity of my health problems needed to be addressed right away. The local doctors kept sending us "down the line", always being referred onto a different doctor or a different specialist. At Mayo clinic, we found right away that the tumors that I have developed throughout my body are non-cancerous. PRAISE THE LORD!! The tumors were the greatest concern and we are so thankful and relieved that they do not show signs of cancer. The doctor at Mayo did not give us a definite answer about the other symptoms I have. He really would not give us a straight answer at all. He suggested we wait 6 months, then repeat blood work to see where my levels are at. If anything dramatically changes before that, we are to return right away... Please continue to pray that in the coming months the unusual exhaustion, dizziness, racing heart, and list of other symptoms would subside. All in all, I fully trust that God is working and is fighting my battles! 

So, on a different note, I have a healthy little girl who just turned 6 months old. (seriously, she is way too cute.... I just have to tell you a little bit about her!)  I can't believe 6 months have flown by.... She has filled them with tons of laughs, smiles, lots of joy, and many sleepless nights. God continues to work in her life. She is still physically pre-symptomatic SMA. The only ways that constitute SMA in her body right now, are the lower nerve readings and the constipation that is setting in. :( But look at her... isn't she WONDERFUL! 

 I am holding tight to the promise of a better future for her. My mind goes crazy and tears build up when I start to think about the long road ahead of her.... I know I just have to take it one day at a time and truly cherish the moments. Speaking of... she learned how to sit up within the past 2 days. Since she is a very healthy little girl- weighing in at 21.5 lbs. on her 6 month birthday... Her bum is a little round to say the very least, and it took a little time to "flatten" it out! Ha! :) 

She has developed several loving nick names. Chubby monkey, my squishy (off of finding nemo), chubbers, cootie- (from her siblings- "Mama, she is such a coootie... :) ), and chunky munkin, are just a few of them. Do you have any suggestions for loving nick names?!? 


Once again, Thanks so much for your prayer power and support. The past few months have not been easy, but they have been bearable with the peace in knowing that God does have a superior plan! Until next time- 

Many Blessings to you and yours~ 

One BLESSED mommie 

Stream of Emotions...

-Joy, Blessed, Comfort, Fear, Love, Sadness, Longing, Peace, Remorse, Anxiety, Sorrow, Hope, Gratitude, Sympathy, Relief, Frustration, Amusement, Thankfulness ..... 

-Tonight is one of those nights. I have been trying to put my thoughts together all week, and have unsuccessfully been able to get them out. It seems as if have been on a roller-coser, trying to navigate my way through the journey we are on. 

~My children's' smiles bring me JOY everyday
~My heavenly Father has BLESSED me beyond belief
~I find COMFORT in my husbands arms
~I FEAR the unknown
~I LOVE seeing my baby roll, laugh, and smile
~SADNESS finds its way in when I see so many other families affected by SMA
~I am LONGING to be in California at the National SMA Conference
~I find PEACE in God 
~I am ANXIOUS to see what tomorrow brings
~SORROW comes when I see my child want so badly to do something that she is not able to do
~There is HOPE for a brighter future
~My heart overflows with GRATITUDE for the prayers that have been said for our family
~SYMPATHY and tears for the families that have SMA angels
~I have a sense of RELIEF knowing that this is GODS perfect plan
~FRUSTRATION is my body not doing what it is supposed to be able to do
~I am AMUSED by all the little things in a day
~THANKFULNESS for this life I have been given to LIVE

-Today was a perfect day. We were able to go roping and fishing with some dear friends of ours. Everyone had a great time. Lots of laughs and good food. 

-Last Monday we found out my blood results were still in the "normal range". Thank the Lord for that! 

-Tomorrow we will be leaving at 6:30am to drive to Rapid City for a consultation with a surgeon specialist. I had some more doctors look over my case and this was highly recommended. Ideally we will be able to get a biopsy of the tumors under my collar bone, analyze them and get to the bottom of all this medical stuff. 

-Denalli and Ryka have both been featured in some awesome, heart warming, tear shedding videos. Here are the links. Please watch and share with the world. WE HAVE TO END SMA.... 

-Click HERE to see Denalli.

- (LOVE the songs that play along with the videos...) 

-Click HERE to see Ryka Kate. 

-Watch them, Share them, CHANGE THE WORLD- CURE SMA! 

-Right now the National SMA conference is going on in California. I am SO wishing we were there..... Denalli had the time of her life when we were able to go last year. (it was held in MN) While at the conference, Denalli was looked upon as "normal" and not some "little girl in a power-chair". While at the conference, she blossomed into an exuberant social butterfly. Also last year, Casey and I learned so much and met a lot of awesome families. With it being in CA this year, we were unable to secure the money needed to fund the trip. We are really hoping to find sponsors/make a way to go for the conference next year.... 

-My Cowboy is an incredible man. He makes me laugh. I could not imagine my life with out him. He makes me want to be better everyday. 

-He is so amazing with the kids. He is the breakfast cook on a daily basis and makes amazing biscuits (from scratch) and gravy at least twice a week. 

-He is grounded in His faith and has a love for the Lord and a gentleness beyond words. He is my Cowboy and my Rock. 

-He is the father I always dreamed my children would have. 

-Wow, GOD is GOOD! 



-I am tired.

-Thanks for checking in and listening to my ramblings.

-Until next time, be BLESSED and enjoy the moments! 


~*~ One BLESSED mommie ~*~