Sunshine

Sometimes we don't do much of anything but still wind up having a really. good. day.

Fly

Strong

Smiles

Joy

Leaves

Laughing

Silly

Sweet

Messy

Curious

Me

October....?

Last Thursday it happened... it snowed! A big snow, the kind that keeps you inside, and the wind just howls and those fat white flakes drift all about.

Last Thursday was also Luke's birthday so we stayed home and spoiled him rotten.

His birthday was wonderful, and it was extra special I think because we spent that day in the hospital last year. This year, everything just seemed so much better, I spent the day being grateful.

Today I took Marie for her first RSV shot of the season. She didn't cry but did scowl and have a brief "episode" when she got the shot. Within moments though she wanted to nurse and smiled and talked to me while she waited. Stinker. The big news from today though, is that Marie has finally broken 19 lbs! She is now 19lbs, 4 oz. I am so proud of her. For some reason, she gets enough to eat, but it has been a struggle for her to gain weight. I believe I actually screamed and jumped up and down when the scale flashed the number, I was that happy.

Josie cannot wait for Halloween and her very first classroom party. I am bringing some goodies for that, and she's just over the moon. It makes me glad that it takes so little to make her happy, she's going to be the most beautiful butterfly in the world. Marie will be a monster, and she'll be helping Dad pass out candy that night. If you want to see her in her tights and onesie head over to our house;)

Not much going on here, we're just doing good, and I'll take it:) I'm feeling grateful for a lot of things lately... This is not the most organized post, and it's time to begin the bath time marathon here, so I had better run! Wishing everyone a wonderful week!

Those are the pumpkins from our garden, Josie is incredibly proud that she and her Daddy grew those!

German Apple Cake

We have a bit of a surplus here at the moment.

Today I was getting ready to make German Apple Cake, and wanted to pass the recipe along. It's one of my mom's recipes, from this ancient La Leche League cookbook with a copyright date of 1971. According to the front page this book cost $4. It's in tatters now, and a big red clip holds it together. Inside, there are recipes I grew up with. This is one that's carried over to my adult life.

German Apple Cake
1/2 cup butter
1/2 tsp baking powder
1 cup flour
pinch salt
1 cup sugar
1 lemon, juice and grated rind (or if you're Shannon one generous squirt from lemon juice bottle)
3-4 eggs, separated
4-6 apples, peeled and sliced (the long ways)

Cream butter and sugar, add yolks, lemon juice and rind. Continue creaming until smooth. Add flour, salt, baking powder, then fold in beaten egg whites. Pour into greased pie dish or 9x9 pan. Arrange apples on top, core side down (this is a job for Josie). Bake at 350 for 45 minuets.

We like it with cool whip or whipped cream on top, though growing up we always devoured it plain or with a little powdered sugar on top.

Caramel Apples

We made caramel apples for the first time today, it was goooood! Both girls helped:)

Getting ready to start!

Helping...

More helping...

Our masterpieces!

We were even happy about getting our face washed when it was all over!

Oh yeah, the other night we had a fairy over for dinner!

She brought her sidekick :)

P.S. Josie is currently LOVING the top song (she picked it)! It sounds like her doesn't it?

What we do with our days...

This photo is from last month, remember that Hannah Montana birthday party Josie went to? This is my Hannah Montana! Isn't she adorable? For the record this is the first time I've ever used the curling iron and given Josie "Rodeo Queen Hair".

We lick the spoon, almost anytime I make something that doens't have eggs in the batter. In this case it's melted chocolate from making chocolate covered pretzel rods (thanks again Lisa for a great idea!)

This is how we watch cartoons. The closer together the better.

Josie draws all the time. She's getting better and better at it. I can draw pretty well myself if I take the time, I think she can too. This is her most recent family portrait. I don't know what is up with her Daddy's hair (he is the brown person) but it cracks me up. He looks like a very young will Smith via the Fresh Prince days.

I loved that show!

We talk to our Monkey about everything.

On a more serious note, Marie is really struggling with this cold. She has so much congestion in her head it's miserable. She went through a really horrible coughing fit last night where she'd literally just heave because she couldn't cough anymore. It was one of the hardest things she's been through in a long time. I just sat and prayed that God help her, comfort her. We have been using little noses decongestant drops, and they really work. I recommend them. Last night, I know you're not supposed to, but I put Vick's on her chest and it helped a ton. Luke and I also tried putting it on the soles of her feet and putting warm socks on her. I have been told repeatedly that this works to calm a cough. I don't know for sure if it was that, or a combination of everything but when Marie finally fell asleep about 11:30 she was out for the night.

Josie is doing great, she's looking forward to her final soccer game on Saturday (I can't believe it's over already). She is going to be a purple butterfly for Halloween and keeps asking if Halloween is tomorrow.

Today is the 16, and it is beautiful and sunny outside. I woke up with a peace today. Thank you so much to everyone who's left kind words and prayers. Today is very different from this day last year and I feel blessed.

I was scared yesterday, we took Marie to the clinic and had to do some chest x rays. It felt like deja'vu. So similar to last year. Luke was with me though, and he gave me hugs when I needed them, he is so good. Yesterday, doing the things we did last year that terrified us makes me realize how far we've come. Last night, watching Marie cough I realized that she is a lot tougher than I give her credit for, Josie is too. I think that they do have a sort of Divine comfort that I am not aware of, I need to let go and let God more...

For now I'm going to enjoy the sunshine, and pray that this cough is just a cold and antibiotics help. It was suggested that this may be the progression of Leigh's and that terrifies me.

Thessalonians 5:17-18

• pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus.

Remember

Please take a moment today to remember, and offer a prayer for all our babies called home what feels like far too soon.

Remembering my own early miscarriage, October 2005. Remembering Landon, we love you! Remembering Q, I think of you nearly every day.

October 15 is the National Day of Remembrance for Pregnancy and Infant Loss.

And the rain came down

Starting Saturday night the rain came down. It pored, most of the night, and then all day Sunday. I was soaked at church Sunday morning, but we needed that rain so I can't complain. Ackerman's got over 2", just under 2" at Smith Ground, and here at the house we had an inch and 8/10, and it was about the same on the fields out on the 7 Mile Road. Luke said it's just what the wheat needed and it should take off now.

Marie is doing pretty well. It's like stuff just gets caught up in the back of her throat and she can't quite bring it up. Hospice came and checked her lungs Saturday and they were clear (thank you Jesus!). Our nurse actually thought the cough sounded a little croupy, I've never encountered that before, so she suggested getting the bathroom steaming and sitting with Marie in there. It helped so much! After we did it Saturday night she didn't cough again until mid morning Sunday, and we've been doing it every night since. Hopefully this passes, and it's not a new normal to adjust to. I really hate it when it happens when she's eating. It's like she needs to clear her throat but can't, and in the attempt it's scary that she could choke on and inhale her food in her mouth. She's choked really badly a few times, tonight after dinner I pulled her out of the high chair and thumped her back to try and help. Still, she's a fighter and a happy girl. Really, as long as she's happy what more could I ask for. She had vanilla pudding tonight and it made her day. I hope that we can continue things like that.

Josie and I had a tough talk today. I often worry about her, she just doesn't talk about anything that goes on much. Occasionally I'll get "Bunny says he's sick" or "my Bunny is sick like Marie" but that's about it. Tonight though, she opened up to me and it broke my heart.

She had a picture in her hands of Marie in her walker, taken over a year ago now. Her eyes are bright, she's holding a teething toy in her hand trying to get it in her mouth, and smiling at the camera. She is standing, she is holding, she was so much stronger then.

Josie looked at me and said "I miss when Marie could hold things in her hands, I want her back that way". I gave my standard answer, that Marie is the way God made her. She is beautiful, and perfect in her way, and our gift. Josie then said, "I will pray for her every night when she is in Heaven, I will miss her so much". I HATE that that is my little girls reality. This is something I struggle to wrap my mind around, and to have the responsibility to guide her through it, to try to comfort her... sometimes it's just too much.

Our conversation went on, but the part that stuck with me most was when Josie said "I don't like the choking, the slumping, the seizures, I don't like that stuff happening to Marie". "Bunny told me her medicine won't make her better, I don't like that she has to take medicine". I told Josie it was to keep Marie comfortable, that when her body doesn't work right it helps her to relax. Josie is such a good big sister, she just doesn't want to see Marie suffer. It's Luke and I'd biggest fear too. Josie then asked "The sickness in Marie's body, can we get that in our body too?". My heart breaks watching her struggle to understand, Marie's disease is so complex that I struggle to recall bio chem that I took in college so that I can understand.

Lord, I am so lost sometimes. There are times I don't know why you picked me for this job. I am struggling to understand, and I am trying to guide a child, and comfort one who is sick, and try to create a happy environment. I know I am never alone in this, but sometimes.... sometimes it just sucks that this is our reality. That my daughter is learning about death not because our dog died, but because her sister is so, so sick. My heart breaks, that Josie must go through this. That Paige is a big sister with a little brother in Heaven, that my sweet little cousin never got to rest in my arms. Sometimes I am very, very angry about it all.

October 16 is the day that we learned something was wrong with Marie's body. She had that tremor, we went for an EEG in Denver, it was normal. The neurologist was worried about her eyes twitching and ordered an x-ray. She came back after we sat in a tiny grey room forever waiting, starving because it was now 2pm and we had been in that office since 8am. She came in and said that we were to go to the main Children's Hospital in Aurora. She didn't tell us what was wrong, just that Marie had a serious problem and they would be waiting for us at emergency.

Do you know what we did next? We went to Taco Bell. After we left the clinic Luke and I were so shell shocked we had to regroup. We ate, although it tasted like cardboard, and we drove south. Sure enough, they were waiting. A full ER and they ushered us straight back like we had VIP reservations. At that moment I was terrified, the fact that whatever was going on with Marie was serious enough that we jumped the queue in the waiting room and went straight back was a completely frightening thing for me.

There we sat a few more hours, I begged to nurse her. She was starving, but everyone had told us not to feed her because they may be running tests. It was 6pm, I ignored them and nursed her anyway. She got an IV, we were so terrified and lost, and then the Oncologists came. They were 99.9 percent sure she had Neuroblastoma, a form of cancer. The prognosis was good if detected under one year of age, they had a very clear cut plan. The checked us in to the hospital.

The next evening we learned that's not what Marie had at all, and the day after that we learned what she did have was much worse, there was no chance of survival. My baby was 6 months old and they told us we'd be lucky if she lived to be 5.

Sometimes, its all to much. As October 16 approaches I'm trying not to think about it. That day I'll be busy. We have to see the accountant, I am snack mom at preschool. It will be just another day.

The truth is this, it is not just another day. It is the day some dreams died, they were replaced by new ones, and an appreciation for small things, seeing beauty where many probably don't. Optimism in the face of tragedy. That is the day that my life as I knew it was over, it was replaced by a newer one where the paths are not clearly marked. It was the day I stopped being so naive.

It's been a year... and as much as I hate it I cannot stop thinking of where I was a year ago. I'm terrified of where I could be a year from now.

Lord, please give me strength.




From "The Rain Came Down" by Steve Earl

And the rain came down
Like an angel come down from above
And the rain came down
It'll wash you away and there ain't never enough

Picklesticks!

That is what Josie says. She means "fiddlesticks" but it comes out "Picklesticks" all the time. That or she'll just say "Ah, Pickles!" when things are not going her way. I have no idea where that came from.

I say picklesticks today because both girls are sickies, again. Poor Josie woke up this morning with a stuffy head and cough, and Marie is still fighting that cough of hers. Hospice is coming this morning to check her out. Her chest is all rattly, but I can't tell if it's a back of the throat sound or a lung sound. We did finally get her meds straightened out, Praise God! She is now taking 3x the original dose we started with, and breaking it up three times a day. She got a good nap yesterday and slept well last night, but she woke up coughing at 6. I got up and sat in the recliner with her right next to the humidifier. I kept dozing off and on but she stayed up. She is a tired Mama now.

Josie loved the parade! It was cold and windy here, imagine that! Luke took her to the parade and I stayed home with Rie. She had a blast, and we got a video of her on the float but Daddy didn't take any pictures of her all dressed up. It was something, her green HHS Dragons tee that Christy made her, a gold bead necklace complete with football, and white ribbon in her hair. My Josie is so stinking cute. She even wore her Nike's, because they are green and white, and my child is nothing if not color coordinated.

Today we're laying low, we're skipping the soccer game, and it's damp and freezing out! Almost literally, last I checked it's only 39! I actually put socks on for the first time in months, and well, I don't like socks, so it must be cold!

Please pray with me that Marie's cough passes quickly, it was horrible to hear her this morning. She can cough once or twice and then just starts choking. Her little face was red and her eyes were watering. Poor little Mama...

I'm including my email devotion for today, often they hit home for me. Today, I thought I'd post it here because I have some dear frineds who are struggling with changes in their lives too. I hope it brings comfort to those who need it. This is from Lutheran Hour Ministries.

Daily Devotions from Lutheran Hour Ministries By Pastor Ken Klaus, Speaker of The Lutheran Hour®

"Solid Foundation" October 11, 2008 For no one can lay a foundation other than that which is laid, which is Jesus Christ. 1 Corinthians 3:11 As I talk with people, one of the things many of them complain about is feeling unsure. Their world and the things in which they put their confidence seem shaky. If that's true for you, maybe you might want to take a lesson from the natives of the Sapura plateau of India. On that plain, there is a primitive tribe of natives who have a unique custom. After an earthquake, the men of the tribe go around driving nails into the ground to make it firm again. Now, you know and I know pounding nails into the ground is not going to prevent another earthquake from happening. Pounding nails is a futile gesture, just like many of the ways we try to bring order into our lives. We try to stop our own personal earthquakes by running around and making everything secure and sound. Sadly, the passing of time shows all of our attempts just don't do the job. The truth is: we can't stop our earthquakes, but God can. God is powerful; God is consistent; most of all God is benevolent and cares about what happens to us. To those who have faith in Jesus as their Savior, Who have built their lives upon Jesus as their Foundation, God has given His personal guarantee. He has promised never to pull the rug out from under us or let the roof fall down about our ears. He, and His Son, our Savior, will always be there, ready to give us help, hope and a hand up. So, if you are troubled today, if you're shaken, or if your world is a'rockin' and a'rollin', don't go around pounding nails in the ground. No, trust the Savior Who gave Himself so you might be given a peace that the world cannot give. Let the Holy Spirit build you a solid foundation upon the Savior. From a devotion originally written for "By the Way" THE PRAYER: Dear Jesus, You are my solid Foundation. Through all life's quakes, grant that I rely on You. Let me be comforted in this world, as well as in the next. With a thankful heart I ask this in Your Name. Amen.

In Christ I remain His servant and yours, Pastor Ken Klaus Speaker of The Lutheran Hour Lutheran Hour Ministries

Far too early to be awake...

Sometimes, I am overcome by the desire to hire a nanny. They could change all the diapers, stay up late, but most importantly be the one to get up really. really. early. Then again, I'd probably hate it and fire them within 10 minuets because I was jealous of sharing my kids!

Yesterday we doubled the dose of Diazepam. Last night it seemed to work, Marie was really tired, having had a rough night before and then partied like a rock star all through nap time, and was out by 9:30. I put her to bed between Luke and I, and she did not cough all night long! I know that God heard everyone on that one! But, she woke up at 4am having episode after episode of stiffness. I gave her another dose of Diazepam and she's finally dozing now (it's 6:10)...

Thank goodness Luke will be home to help me this afternoon! Josie is going to ride on the preschool float in the homecoming parade today, and that little Mama is so excited it's not even funny. Christy is making her a Dragons t-shirt and she has all her green and yellow hair clips ready to go. I love that baby. She doesn't have to do anything and she just cheers me up.

So, as I mentioned, it's 6:10 and this would be easier to handle it the sun was up. Is it really that time of year already? We boxed our shorts and tank tops up, because well, we're from Colorado and if we don't put it away come a warm day in January we may be tempted to put them on. Josie and I could wear flip flops all year round if our feet wouldn't get wet...

I suppose it is that time of year though. Yesterday at soccer practice it was just cold, and we did get our Halloween decorations out yesterday (they're not up, but they are out!)... The last year went by way too fast.

So, anyway, I have a new look:) And Ragan over at Blogger Boutique made me a present! I now have my very own "button" that you can take and put on your blog if you pray for Marie! The button is located in the column to the right. It's perfect, it's flashy, and at the end it shows her sweet little face:) I experimented this morning and it works on pages other than blogger, so any place you can use html your all set! I think it's wonderful!

Switched

Last night was the first night on the new med, Diazepam. I think the dose it too low, it was not a good night. Every time Marie would fall asleep she'd have a leg/arm jerking, rapid breathing episode and would wake up. So I'd have to go through the process of putting her back down again (read, nursing her to sleep) and we didn't get to bed until after 12. Even then while sleeping her arms and legs would jerk and she didn't really settle down until after Luke left around 4am. Sugar beet harvest started today and he's driving a truck for a buddy of his.

Josie of course was up at 8 and hopped into my bed waking both Marie and I up. I see a lot of coffee in my future.

So, I need to call neuro, try to put away the mountains of laundry that are threatening to swallow my bedroom, take a nap, be my usual fabulous self, and get dinner in the crock pot. It's good to be me;)

Other than the jerks Marie is pretty happy, although I think she might be coming down with a little head cold. Josie is doing great and very excited about riding the preschool float in the Homecoming parade tomorrow!

Sugar beet harvest started today, and Luke will be driving a truck from 4am to 2pm. It kind of sucks for him but it's great for me! We're looking forward to hanging out with him the afternoons! This should go about two weeks is the estimate... we'll see.

Thanks for all the kind words and prayers, this meds changing business is scary! Last night sitting with Marie having such a rough time was no fun, but knowing that there are so many people praying for her is huge! Thank you!

Nervous....

I updated the Caring Bridge so you can hop over there for the full story. In short, Marie's episodes of jerkiness are not getting better, and they're actually becoming more frequent. The upped dose of Clonazepam isn't helping so we're going to completely switch meds to Diazepam in an effort to control these spells.

Please pray that Marie handles the meds change okay. It should be fine, they're very similar prescriptions, but a Mama can't help but worry. I'll keep you all posted...

Much love-

Hiatus?!

So... sometimes I say things and then I change my mind. In truth, I like my blog much, much better than the CaringBridge site. CB is so clinical... I prefer it here with my funky background and ability to put pictures with words.

Yesterday I was a little fried. It's been a long three weeks here. Luke's been gone a lot, I've been dealing with medicaid (I deleted that post, it was angry and political, two things I'd rather not have here). Sometimes I feel a little critiqued because I choose to share parts of my world here, and I was feeling uncomfortable with some people looking in. Then I thought about it and I figured, what the heck? People will think what they want to regardless of what I put in my public journal or not.

That and we have so many faithful prayer warriors, I cannot think of leaving all of you out of the loop. Your prayers have blessed us, it would be hard to do our thing without the support of so many, so I changed my mind. That and I'm a girl, I'm allowed to change my mind as often as I want ;)

Josie is doing great, no more fever! She's handling preK like a champ and though she was wimpy at soccer practice on Tuesday she did have fun so that counts for something. She is excited to go to her game on Saturday, excited to have her cousin's J and J visit us, and excited to have lunch with Uncle Mickey. She got a new t shirt with Strawberry Shortcake on it, old school, not the new look but the Strawberry Shortcake from when I was little. She loves it. She wants to wear it every day. It is dirty, guess how happy that makes her?
Marie is doing alright, she is trying to cut three molars at once. The bottom left came through end of last week but the other three haven't and they're hurting her. Yesterday she had a bad day, stiff a lot, no appetite, fussy, unable to settle down to nap or sleep until her Tylenol kicked in. She needed held a lot.

The past few nights Marie has had a few episodes that have alarmed Luke and I, adding to my overall neurosis. She will wake from a sound sleep stiff as a board, arching her back with a very rapid heart rate (too fast to count) and breathing almost as if she is hyperventilating. It's no good. It's so scary when she does things we've never seen before. I've got a call in to nuero, hopefully we figure it out. It seems like something really hurts, and I hate that.

She's also started to have more trouble eating by mouth. The act of swallowing is so complex, and she struggles with that. It's hard to see her choking more and more, and really be unable to help. It is nice to see that she still really enjoys food, so we'll make due. We have had to stop giving her bits of Hershey kisses, and dum dum's are sometimes a little scary because she will bite the sucker off the stick. If you have any ideas of a safe candy we could try please let me know!

Saturday will be a big day, I am going to go to S-town by myself with the girls. W e have to go to Wal Mart (ugh) and then soccer and lunch. It's the first time I've done this in over a year. I will be brave. I will have my baby sling, it is my security blanket (and Marie likes to hang out in there). Now all I need is some sort of neon sign letting strangers know "Don't Touch My Baby!".

So, please pray that Marie's new episodes stop, we're going to up her movement disorder med a little to hopefully stop it. Pray too that those teeth come through! Much Love-

Little Miss Sunshine and Little Miss Naughty.

Taking a break...

I'm taking a bit of a hiatus... I will update the Caring Bridge regarding Marie if anything changes with her. Otherwise, you can always email me!