MIA...

We are really doing this. We are actually moving to the new house. I am packing my bathroom and kitchen so it must be for real. I don't think I'll have time to update, and depending on when I actually get my Internet switched, well... I'm going to be MIA for a few days.

Rie is doing well, no more scary breathing when she's had movement episodes (clonus) and her episodes have been brief. It's upsetting to think that going off schedule can affect her to such an extent, but a reminder I needed I suppose that even though she is doing so well (and she thinks she's invincible) my little Mama is fragile.

Jo's good, some anxiety about moving to the new house but after talking to my friend B at church on Sunday her son did the same thing, so it's just part of being a kid. It's hard to think what life is like for a five year old. I just keep reassuring her she will have all her things at the new house, we're not leaving anything behind. Then I get the feeling that maybe I should be teaching her more about Heavenly treasures as she seems so concerned about earthly ones, and then I remember. She is five. I told her I was a superhero and she believed me, she thinks that frozen homemade yogurt/banana/pineapple popsicles are actually ice cream and it just taste a little different because it's homemade. She finds dinosaur bones (black sparkly rocks) and saves them up in a box or saves them to show her friend M as only a boy in love with dinosaurs as he is can appreciate such things, she's fine. She's five.

So, we're doing this. Just in time too... Luke's spraying, then we'll move fast and furious, then it's time to service the combine because in just two short weeks or so we're looking at wheat harvest. I want to catch time and freeze it. I want to hold summer close and slow it down, I want to enjoy these last weeks of pregnancy with my two girls. I want to bottle the sights and sounds of our day to day because it's just going by too fast.

Until later...

Because....

Because a day without Josie is like a day without sunshine...

Happy Monday

Marie's been doing much better! Saturday and Sunday I kept strictly to our schedule of napping between 1-2 and gave her morning meds a wee bit later. No nasty movement episodes, and most importantly, no freaky breathing!

This morning I have an appointment to check up on Baby, then we're off to the new house to finish cleaning the kitchen. My most wonderful baby sitter B will be here this afternoon and I'll finish cleaning the new place and then moving begins in earnest. Goal is to be in by Friday, moving major pieces of furniture (read Luke's pool table) Saturday!

Busy week but we are all well, my girls are happy and Rie is doing better so I can't complain. I am just going to be so much more careful about keeping that little Mama on her schedule in the future. Then again, she is 2... Josie was hell on wheels if she got mixed up with her day when she was 2!

Here are the girls this morning, Marie is all smiles and laughing (thank you all so much for praying for her!) and Josie well, she's a diva. Then there's me, or rather baby. Nearly 32 weeks! Can you believe it??!!

Worriesome things for little Mama.

Yesterday was blah. Not all of it, the morning was fine, but yesterday afternoon at nap time Marie had a really difficult stretch.

While she's doing so well overall, and we are grateful, Marie still struggles with Dystonia. Daily it is something we manage with her medicine, but also in going through the episodes with her when they happen and providing what comfort we can. For Marie, episodes can last any amount of time, but lately it is 5-15 minuets duration. She will stiffen her legs and turn her feet inward at a 90 degree angle and wring her feet together. She fists her hands very tightly and will either stiffen or pump her arms. She thrashes her head side to side, her breathing is labored and she will break a sweat. While I am not a nurse, her heart rate does race during each episode and they exhaust her. She often sleeps quite deeply following one. EEG has proven that there is no seizure activity during her episodes of Dystonia, it is the movement center of her brain backfiring. Often, episodes occur when she is stressed, overstimulated, in pain, or over tired.

Yesterday we returned home from the new house and lunch with friends at 2-ish. I gave Marie meds, hooked her up to her pump, and laid down with her for her nap. We are trying to break the habit of holding Marie while she is on the pump as she will fall asleep that way and she needs to learn to fall asleep on her own. Preferably before the new baby comes. So, for now I lay beside her when she falls asleep (I like the rest too!).

Yesterday we laid down and she immediately went into an episode. I have learned that there are ways to hold her body still for her that will break an episode, or that completely changing position can bring her out of it. Nothing worked. She became hotter and hotter, sweating, and she was groaning and actually vocalized a few times. Then she began to gasp when she inhaled. Exhaling was OK, but she would breath halfway in, gasp, then finish breathing in. Terrifying.

I hate, hate, hate to see her breathing compromised in any way. They tell us, that as her disease destroys her brain the movement center controlling involuntary and voluntary movement will continue to erode. Eventually this will result in the loss of her brains ability to tell her body to breath. Many children with Leigh's Disease pass away from respiratory arrest.

So, Marie having trouble breathing scares the daylights out of me.

So I prayed, out loud, over and over again. Begging that God stop it because I am powerless when the episodes happen. After nearly a half hour He intervened, Marie took a deep breath, relaxed and drifted off to sleep. She slept quite soundly for 4 hours, not waking until around 6:30 pm.

I was wrecked.

Please pray that this is nothing, the gasping during that spell is not her disease progressing, it is not a sign of her brain deteriorating. I feel that I am praying that the inevitable won't happen, but if it will, will you join me in praying that it not be so painful. That she not have to struggle so? Marie has done so well for so long that the idea of her slipping again is almost more than I can bear, though I know deep down that slip she will, I just choose not to allow it to enter my thoughts and affect now. Now when she smiles so big, laughs out loud, and is so alert and part of things. I can't allow anything to spoil now.

Absolutely terrifying. I hope that it does not happen again. She may have been overtired, or overstimulated. I am going to try to be much more careful with her in coming days. Poor little Mama. After she was asleep though she was so peaceful I had to take a picture. Couldn't you just roll her in sugar and eat her with a spoon? ;)
And then, because Josie was also sleeping and looking so adorable herself I took a picture of her too. She will hate me when she is a teenager.

Fingerprint Friday

*** Updated update. My apologies, only two fields were really damaged. For family, Dudden is 100% loss according to Steve, Smith is 50% (it got hail on Sunday night that dinged it and then the latest storm did more damage).***

** Update, the hail hit. At least four quarters damaged, one 100% loss. Luckily the one's to the east were saved, but north of here was hit pretty badly.**

This morning I was reading GingerLouise Clothing and she does a beautiful bit on her blog called Fingerprint Friday. It was started by Beki at PamperingYou and while I don't read that blog much I decided I'd like to join in. This is her description of what Fingerprint Friday is:

There is a song by Steven Curtis Chapman that says:
I can see the fingerprints of god
When I look at you
I can see the fingerprints of god
And I know its true
You're a masterpiece
That all creation quietly applauds
And you're covered with the fingerprints of god
So look around you and see where YOU can see God's fingerprints. Is it in nature? Kids? Animals? Where do you see them?

So, where did I see God's Fingerprint this week?

Early in the week there were storms and for us hail is a huge concern. The wheat is just absolutely beautiful this year and hail is a huge fear. One field up northeast (Smith ground for those in the know) took a bit of a beating from some golf ball sized hail but by His grace we only lost about 10% of the wheat on that field. Fields north of there are rumored to have lost 80% or more of their crops. For those who don't know farming that is devastating. It is a harvest that won't happen. Bushels and bushels of grain were pounded into the earth by the ice, the stalks of wheat laid flat making it difficult to pick them up with a combine, and peoples incomes for the year were nearly erased. Of course crop insurance exists, but it doesn't replace the value of a lost crop. I've been thinking of those families this week, that lost their wheat. They have children, car payments, maybe they're expecting babies too. I prayed for them, but the hail was His will. Only by His grace was our field spared.

Last night a terrible storm blew in, one of the big limbs on our crab apple came down. The tree was planted in 1963 I think, this is the first time since we've owned the house that a limb has come down. It missed the garage and house. Luke and I were up checking the radar, the storm had a tornado vortex signature and the gusts were huge. There was also half dollar size hail reported west of here, we're waiting this morning to see how our wheat fields fared... Once again, in His hand and depending on His grace to save us.

This often makes me think of that bit in the Bible, because He sends the hail and it threshes the wheat. It's a good reminder I suppose, because when the day comes, I want to be wheat.

Luke 3:17 NIV
His winnowing fork is in his hand to clear his threshing floor and to gather the wheat into his barn, but he will burn up the chaff with unquenchable fire."


After all He makes the hail, but He can also make this:

Harvest 2007

Of course, every time I look at these two I see God' fingerprint. Josie is an explosion, I talk to her and look at her and am blown away at who she is. Yesterday she was kind enough to explain to me how countdowns work, where she got so smart, how to properly do a pedicure.... Amazing.

And then Rie, how can you not look at her and see God's fingerprint. She is His child, I'm only holding her and how blessed I am for that. Look at how good she's doing! Believe me, not a day goes by that Luke and I do not sing praises for that.
And of course there's this:

But mostly, I see God's Fingerprint in this.
In Luke and I. Just look at him. He is strong, he loves his girls, and he loves me for reasons I'm not entirely clear on but I know it's true, he tells me all the time. We've been through incredible highs and terrible lows and he still takes my breath away. He understands me like no one can, and the best part is that together we're showing our girls how a marriage should be, and I hope that's a lesson they take to heart and apply to their lives. He is an amazing father, and that's priceless. Luke has the strongest faith I've ever seen, and he places his family above all else. He makes me better by being around him and I'm so blessed that I've been given this husband to walk through life with. I really could not do without him, I want him and I need him and I could not ask for more.

There aren't words, except that Luke is more to me than the sky is wide, the ocean is deep, the mountains are tall. God's fingerprint is on us. The odds were against us making it, but here we are these years later and I love him more now than I ever did before. That is definitely God, He is love.

Catch up pictures

Josie when the iris' were blooming...

Marie in her NapNanny, her favorite place to sit:)

Preschool graduation, my Minnie Mouse.

Silly girls...

Is. Big! (She'd been eating something chocolate right before, please excuse the messy face.)

Moving, finally!

Yesterday I packed the first box and took it to the new house! This has been a long time coming. Carpets are cleaned, I need to finish washing kitchen and utility room cabinets and then we're done with cleaning. I'm going to work on slowly moving over small, non essential stuff. Like, Josie's entire closet. That kid has more clothes....

So, we're moving!

Yesterday I took Jo to swim lessons at 5 and Marie and I got in the pool too! This was Marie's first time in the swimming pool and she loved it. The moment we were in she started talking and yelling and didn't stop smiling the entire time. She got chilly after about 15 minuets so we weren't in long but she adored every minuet. As soon as she was warm again she wanted back in. Stinker.

Sunday we went to Home Depot and stopped at McDonald's for dinner after. Josie got to play on the play place and after she was done, Daddy helped Marie play too. They have a piano that kiddos can walk on and Daddy helped her "walk" her tiny feet across. She was so funny, and huge smiles the entire time.

I am so grateful for the moments we get to see her doing normal kid stuff. Its amazing how a trip to the pool or playing at McDonald's are such huge deals for Marie. She is after all a normal kid, and I'm grateful for Luke and for the opportunity to help her do regular kid things.

So, we're moving and I will be a busy Mama this week. This morning we need to get rolling because I'm going to the beauty shop to get my eyebrows done (finally, yay!) and then Jo has gymnastics and I'm going to try to fit a little cabinet scrubbing in there too!

It's been cooler and rainy here. This is perfect weather for filling the heads on the wheat, and it looks beautiful. If you can imagine, it's like the fields around the Emerald City. Miles and miles of emerald green. We've had a few more severe thunderstorms but luckily everything has missed us so far and we haven't seen the White Combine as Luke calls it (hail). Lord, please don't jinx us by my saying it out loud.

I had my two week checkup for Baby last Thursday and all is still looking good. We're 31 weeks today, 9 weeks until Baby arrives.

Ugh! I'd better get moving! Nothing like racing around like a crazy woman (truth be known I love every minuet and so does Rie, she loves being busy)!

Saturday, garage sale day.

So, tomorrow will be my very first ever garage sale experience. Me and my dear friend C are doing this together, thank goodness! Hopefully everything goes:) If you're in the area and are interested we have lots of kids clothes between us. 8:30 to whenever. Josie and her best buddy A will be selling raspberry lemonade.

To sum up my week:

New house, carpets cleaned.
Marie fights sleep. Nightly.
I've lost my feet somewhere below my belly.
Josie is so busy, to have that energy!
Fuzz from cottonwood trees everywhere. One word. Allergies.
Mmmmm, watermelon.
New house, old house, new house, old house, laundry, dinner... it's like some twisted merry go round.
Wondering why my petunias don't look as full and thriving as all the others I see....


Rie is finally asleep, I'm off to bed!

30 weeks.

That is kind of a milestone right? 30 weeks down, 10 to go and there will be a totally unexpected blessing in our lives.

Well, it's sort of already here. When Marie is in my arms (as she is most of the time) No. 3's favorite pastime is kicking her. Josie is obsessed with feeling the baby move, but isn't patient enough to sit still and wait so I think she rarely feels it's kicks and wiggles. The moment Luke puts his hand on my belly Baby stops and is quiet for Daddy. So, Baby is already much a part of our daily lives. Soon though, they will be here.

If I'm totally honest I'm a little scared about handling three. Jo is so independent that if I tried to do much for her I think she would just, like... totally loose it. Marie though, she is my shadow. If I'm not holding her she's close by. At night she falls asleep in my arms with a fistful of my hair or in her crib right beside me holding my hand. Marie and I are almost constantly touching in some way, and with a new baby coming in that's going to be an adjustment for her. An adjustment that my physical self will be compromised (I don't even want to think about what a night away from her when I deliver the baby will mean) but also that my time will be compromised.

Daily, I spend at least 4 hours totally devoted to Marie's care. Meds, feedings both oral and tube, massages, and add to that time spent playing because she cannot play independently, the time that goes into her is pretty much what I do. Housework, bookwork, all the other stuff is fit in when I can bear the time away. Then there's time spent a gymnastics or the swimming pool with Josie. How am I going to add the demands of a newborn baby to that? Lets face it, baby's are rather demanding. Still, I have a feeling it will fall into place and after a few initial bumps we'll probably be okay.

Still, we're excited. I know that we wouldn't be blessed with another if it was more than we could handle. I am looking forward to tiny baby feet. We're out of those in this house. I have five year old diva feet that are currently sporting day glow purple polish. I have tanned little toddler feet with hot pink toes... I don't have any baby feet. So those feet will be lovely.

I'm looking forward to the baby smell. There's a smell they have that other kids just don't. Marie does not even smell like a baby anymore. She smells like strawberries after a bath, syrup after breakfast, and sometimes she's so stinky... well, it's foul. Josie smells mostly like sunshine. Or strawberries, if it's right after bath time.

What if this baby is a boy? What do you do with little boys anyway? That really would be different, we know baby girls here. We deal with drama, Barbies, Sunday dresses, pedicures. A little boy would be all dirt, toads, and probably just as delicious in his own way. Still, that would be crazy different.

30 weeks. There's one more worry on my mind. Baby's health. Pregnancy without the safety net of ignorance is a totally different place. This time, I am so much more aware of miscarriage, late term loss, infant loss. Because, lets face it. Sometimes life does not follow the fairy tale and things go wrong. While genetic testing has been inconclusive they just don't know... I have one completely healthy child and one child who, while I cannot say she is unhealthy, has some serious burdens to bear. I try not to think of it, but in the back of my mind I worry about this baby. I know that God's plan is laid, I just hope that this child will thrive, and will not have to go through half of what sweet Marie has.

So, for my last ten weeks I ask that you join me in praying for Baby's health. Ask others to pray too. I cannot tell you how I covet prayers on this baby's behalf, as so many already pray for Rie. Pray Baby is healthy, that Baby thrives, that Luke and I are prepared (as big sister Josie already is, she is so ready for that baby to be here now!). Pray that Marie adjusts to a new sibling, and balance for me as I know I will try to hold both in my arms.

30 weeks. That went by fast! I leave you with my two beautiful girls:)

Landon's Hope, 2009

Saturday, May 30 was an absolutely beautiful day. The weather was perfect, the company was wonderful, and is my experience in all things that have to do with sweet Landon, God was there. We cannot wait for next year!

Our fundraising goal was $500 for our team "Our Miracle Marie". We raised a total of $1040. We have some truly awesome people who surround us!

Enjoy photos from our day, in no particular order:

UMDF banner and Marie in her "Cadillac"!

Spending time with Daddy afterward...

Face painting! Marie did not get hers done, she would have hated it but Josie was the most beautiful butterfly!

There was an awesome playset at the park. Marie loved checking it out with Daddy!

At the top of a very high slide!

All the way down!

And very excited to do it again!

Our family :)

My butterfly...

Marie never put her Landon's Hope t-shirt on that Saturday but has actually worn it a few times since, it's a little big so it makes a really good nightgown!

So, I've been playing around with digital scrapbooking kits... I might have found a new addiction.

Not Me Monday

I haven't done one of these in a long time. This morning, it might be good therapy. Here, in no particular order is my list of things I have absolutely, never, ever, have not done.



Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

• I did not make a conscious decision to stop advocating. I am taking a break from all that is CNA/medicaid/family support and other crap for a while. It did not require admitting that if I do not stop I might kill someone (and enjoy it).
• I would never start a sentence with, "Josie, if you......" and finish it with "I will give you a piece of candy". I would never, I don't bribe.
• I do not allow Luke to dress Marie and call her pajama shirt a t shirt for a day. My kids are always clean, matching, well mannered...
• I do not silently cringe when people touch Marie. I know they want to, she's so pretty, I just picture their hands covered with germs. It has nothing to do with the people, it's just hard for me to get past it.
• I did not do a happy dance on a sawhorse, with a paintbrush in my hand last night because it rained and now I don't need to water my flower pots. I have time for everything, so that wouldn't have been me.
• I don't just put Josie's hair up in a pony tail and call it good just to hid the fact that her hair is a rats nest and I've made no attempt to brush it. That wouldn't happen because her hair is always done, mine is too for that matter. We do not go days where we skip brushing our hair.
• I'm not totally freaked out that that baby ticker to the left says I have only 78 days until #3 is born. I'm not worried at all because I'm ready. That's right, rooms done, cribs up, clothes are washed, and emotionally I'm prepared to be the mother of three children. I'm also not lying.
  
• I'm not secretly proud every time Josie sasses back to me or argues. I would never foster an independent spirit in my child. I would never want her to question the powers that be. I would never encourage testing boundaries. I believe what I was raised, good children are seen and not heard...
  

Who am I kidding, I'm raising a child who will be a woman one day. I want her to be fierce. "Well behaved women rarely make history." Laurel Thatcher Ulrich; or if you prefer "Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is - His good, pleasing and perfect will." Romans 12:2

Wild Olive Tees

So, I added a new button to my sidebar. Wild Olive Tee's is having a contest and I'm entering and would love to win! Have you seen these? I found them because MckMama blogged about them and in checking out the website I have to say, they're about the coolest t-shirts. I actually caved and bought one, No. Thing. It's comfy and soft and covering my nearly 30 week baby belly pretty nicely. They're 100% organic, and while I don't go in for that sort of thing (we don't farm organic so I really find myself in a quandary about the whole organic debate) but I suppose that's a nice perk if you care about it.

I have more favorites picked out so here's hoping I win their contest!


Also, I have lots of pics from Landon's Hope on Saturday, I'll post about it and show off the pictures this afternoon (that's my plan anyway)!!!