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!

Quick update

So, I took Jo to the doc again today. This was the 9th day of her running a temp of over 100. She doesn't all the time, but it keeps coming back and I was starting to get concerned.

Guess what? She has an ear infection. A $&%*$&! ear infection. If you recall, she just had her ear tubes removed in May. Now we're on antibiotics and hopefully that will clear up the ear and take care of the fever. If the fever persists we'll be back at the doc next week. Still, I am just bent that her ears are acting up again! Poor girl.

Marie is still doing fantastic! She got to spend some one on one time with one of our favorite people today while I took Jo to the clinic. It made me so happy to hear that she talked with Andrea and was so interactive. I can just feel God in this...

Anyway, that's where we are. Mama still needs a cocktail... We did start picking up millet today though! We're getting there!

What we've been up to...

Let's see... no more seizure meds (have I mentioned that? I am thrilled!). Josie is still battling the fever, last night it was 101.6 at bedtime... today is going on the 8th day. All her tests came back negative and white cells are down so it's just sort of wait and see... she's acting better today. She even got sassy with me this morning.

Marie is fantastic, she's so busy, and started chewing on her paci again in the last few weeks. Also, yesterday she was chewing on my finger and the little stinker cut a molar! On the left bottom side it just broke skin. No wonder she's been a little fussy the last few days! I have been looking for eye teeth to come through, definitely not a molar. I suppose that Marie just likes to do things her own way silly girl!

Today is our anniversary. We were married by law January 14, 2004, right before Josie was born, but today is the day we had our wedding in church, September 25, 2004. Not at all confusing right? Would you believe that Luke has never forgotten either anniversary, but last year I forgot this one. Oops! He won't let me live it down!

In so few years we have come such a long way, I am so blessed to have him by my side. Things were not easy when we started, young, in college with new baby. When we came back to farm it was during some rough years, and in the last year especially we've come through a lot together. I don't think I'd make it without him.

So, I changed my song just for you. The whole moon and the stars.



Now, what we've been up to, in no particular order!

Chocolate pudding happened... do you think she enjoyed it?

Telling Daddy all about it...

Josie is so pretty, her hair is getting darker all the time.

This is what soccer girls wear before their game. Notice the ponytails complete with ribbons?

She's the green shirt furthest left, once again, look for those pony tails!

Pedicures always make us feel better!

Marie too!

Lovin' on the Bunny Man!

Marie and her Monkey. In the last week this has become one of her favorites, the funny part is, that monkey is nearly as big as she is!

Marie + Monkey= Friends 4 ever!

Doing better (fingers crossed!)

I took Josie for her re-check yesterday, and her white blood cells are lower! That means she's getting better:) Praise God!

We still need to lay low for another day or so I think, but last night she didn't seem to have a fever anymore and today she ate scrambled egg and grapes for breakfast. She has had very little appetite.

I'm hoping we've rounded the bend!

Luke is still in the field, 6 quarters to go, three of which still have millet on them so he'll be busy another week is my guess. Both girls are missing him a little bit. On a normal day he's gone by 6 not home till 8, and when he walks in the door you'd think a rock star just entered the building!

So far Rie is doing great, she's not showing any signs of a bug, and tomorrow will be her very last day on seizure medicine! We are nearly done weaning off that stuff and I could just dance! She is so much more alert, present, talking, just fun! I love spending my days with her.

So, that's where we're at:)

Can you believe its fall already??!

Mitochondrial Disease Awareness Week - September 21-27, 2008

Mitochondrial Disease affects 1 in every 4000 people. Mitochondria are tiny “engines” that live inside our cells and they are responsible for converting food and oxygen into energy. When the mitochondria aren’t working properly the cells don’t get enough energy to live, and they begin to die. Many parts of the body can be affected by deficient Mitochondria including the liver, kidneys, eyes, digestive system, brain, and the heart. Mitochondrial disease is not a simple disease, it can affect any organ, it is progressive, and to date has no cure, but with awareness comes power, and a cure.

For more information please go to MitoAction. Also, please copy and forward this to everyone you know. Our lives have been forever changed by Mitochondrial Disease, and more families struggle to understand the diagnosis everyday, part of the battle is that so many have never even heard of Mitochondrial Disease. Please join me in raising some awareness!

Where to begin?

Yesterday was a long day! Josie is home and doing alright now, but yesterday afternoon was a trip! She woke up from a nap around three and I checked her temp, 103.7. I gave Tylenol and Motrin and waited a half hour, 104.7! The highest fever she has ever had. So, I bundled her up and took her back to the hospital.

Long story short, they did every diagnostic test they could. She was still complaining that her tummy hurt so I think they thought appendicitis but her appendix is fine. In short, they cannot find a reason for the high white blood cell counts and fever. Her fever did break about 6 and they sent us home to watch her closely.

Today she's doing alright, fever of 100.9 at one point but nothing major and it's cooling off with Tylenol and Motrin. I think I'll keep her home from pre-school tomorrow no mater how good she acts like she feels.

The doc thinks maybe her body is just reacting really strongly to a common bug, I'm wondering if because we've been so good about being careful about being sick because of Marie, Josie just got slammed and didn't have the defenses to beat if off and her body over-reacted?

Who knows.

Long story short, Mama needs a cocktail. You can bet as soon as Luke gets that wheat in the ground I will be taking a break! Running between kids is tiring, and my mother in law had to go so I'm on my own again. Actually, it's not that bad, if they both are sleeping ;)

Thanks for the prayers, so far Marie's doing okay. Her temp when I checked earlier was 99.8 but that's actually about normal for her (possible temp regulation issues due to the Leigh's).

I have to take Jo back for a recheck tomorrow afternoon, so hopefully it's all good news (and her white count is lower)!

Josie-Jo...

Josie is feeling better today. Despite throwing up overnight she got up and asked for a waffle, and then she ate it :)

Luke's Mom is here helping with Marie, and I took Josie to the hospital at 10 for the recheck with the doctor. They did another blood draw and her white blood cell count is still really high. However, she has no temp, no more tummy aches, and is active and alert. He ordered two more blood draws and I asked what they're looking for. One of the nurses told me that they're culturing for bacteria in her blood, they'll have those results on Tuesday for us when I bring Jo back for yet another recheck. The doctor is concerned by the high white blood cell count so they're sort of just covering all their bases, making sure there's nothing to worry about, especially since we are so rural.

So for now, if we see Josie do anything that raises a question we bring her back in to the doc, otherwise we just watch her and bring her back for a recheck Tuesday. The thought is that her body just over-reacted to an infection and that's all this is. Once again, just being careful.

Josie doens't like blood draws. This morning was awesome considering there was a total of three done.

So far, Marie is doing just fine, she's napping right now (woohooo!). So, I've got to get some things done.

Thanks for all the prayers,

What the?!

So, yesterday I was thinking life was in control. The girls were rebounding well from their colds, and then... Josie complained that her tummy was hurting. Then I noticed Josie had a fever, then I decided to keep Josie home from preschool. All day she complained about her tummy, had a fever and didn't want to eat.

Last night she woke up around 1:30 still complaining about her stomach, and still with a fever. This morning she was nearly in tears about it so I took her to the clinic. Marie stayed home with a good friend. At the clinic Josie started throwing up, quite the feat considering she hadn't eaten all day. Her fever was at 101 and her heart rate and breathing were rapid/elevated. The doc sent us for chest x rays and blood work (just guess how much fun that was, really. My girl, she can scream). Apparently her lungs are okay, but her white cell count is really high indicating there's some sort of infection going on.

So.... I have to keep Marie and Josie in separate rooms away from each other. If I touch Josie I have to wash my hands before I can touch Marie. Josie is all set up in her bedroom with the portable DVD player and movies, I moved Marie's diaper stuff into Luke and I's room (she sleeps with us anyway). Until Josie's fever breaks and she's doing better I have to keep them separated. Sigh, there is no rest for the wicked.

To top it off, the cherry on my ice cream sunday of crappy luck, if Josie starts having trouble breathing or spikes a fever around 104 I have to bring her into the ER immediately. The doc mentioned pneumonia, but her lungs are okay, so he's a little confused. I also have to take her in tomorrow for blood work to see if her white cell count is still the same.

Luke is in the field, and will be, needs to be to get the wheat in and the millet out, so I'll be figuring this one out on my own... To add even more fun to the pile, Marie is refusing to nap again today, this is the third day in a row. Arg!

I checked Marie's temp when I gave her noon meds and she's got a low grade fever, around 99 or so. Hopefully tylenol kicks it and she is not getting whatever it is that Josie has. Please pray that Marie stays healthy.

I am so over cold and flu season, and it hasn't even really started yet.

Prayers for Matt

Please pray for little Matt. He's a friend we've made and is diagnosed with Mitochondrial Disease. He is currently in the PICU battling aspiration pneumonia (our biggest fear). His family is amazing, and his mother is so upbeat and a wonderful advocate for her son.

Click here to visit Matt's Caring Bridge Site. www.caringbridge.org/visit/mattheweakins

Much love-

Sowing Wheat

I don't have any pictures of us sowing wheat. I have photos of harvests, planting millet, sunsets, tractors, rainbows, but none of us sowing wheat. Maybe this year will be the year I get some... I think I'll wait until they're closer to the farm before I do that. I think the above picture is the field Luke is on today.

Luke started on I think the 5th quarter this morning (don't quote me on that I'm probably wrong), this is 3 days in. They'll be sowing for another week at least. It's crazy to think those tiny berries planted into the ground will sprout quickly, spend the winter under snow and wind, and in the spring we'll have fields of emerald green again.

It amazes me to think of that one seed will produce a plant that will produce so many more seeds, and together they fill semi's and giant grain elevators. The trains take it east and there's enough to feed a country with surplus...

It's long hours, hard work, dusty, hot, cold, worry about weather and storms, but in the end there's something to be terribly proud of. I have watched them work so hard, putting themselves into the crop they grow, and at the end of the day I have to say, I'm fiercely proud that I married a farmer.



Luke 8:8 NIV
Still other seed fell on good soil. It came up and yielded a crop, a hundred times more than was sown." When he said this, he called out, "He who has ears to hear, let him hear."

There were moments in the last week that I literally knew God was beside us. In the middle of the night an anxious prayer "God please, put Your hands on her, help her get some rest" was answered by a child going to sleep in moments peacefully (and without nursing!). The ability to say, "Lord, it's in Your hands" and sit back and be awash in peace instantly, these things are so incredibly comforting as we struggled through some of the roughest times in recent months.

But, she is better! Occasionally stuffy, but no cough, bright eyes. Talking more than we've heard in months. We're nearly off the seizure meds now and seeing such a difference in Marie. THANK GOD! He is as work here, if I can be good, and BE STILL, I can feel him. I can see His work. Marie is doing so well again, acting much like any other child. To see her alert, to grin when she does something she knows she shouldn't, to have a "conversation" with her again, there was a time when I honestly never thought these were things she'd be doing. Her smiles are just enormous right now, and I'm eating them up!

If you get a chance visit my friend Mindy's blog, One Day At A Time. Both of her children were very sick, both diagnosed with Mitochondrial Disease. In recent months they have both turned around. She firmly believes a miracle happened, and I think she's right.

While our miracle may not be on so grand a scale, Marie pulled through this cold without slowing down. She's smiling and doing so much better than she was in the spring, she's still sick, still fragile, but, she's doing so well. We're pretty grateful.

Josie, as always, is fantastic. She told me the other day, "Do you know that God lives next door to Cinderella?" Really. "Yes, He and Jesus live right next door to Cinderella's blue house. They live in a white house." How do you know that? "Because I've been there."

Children are totally amazing.

Thank you all for your prayers, and kind wonderful words.

Better today

Last night Marie slept pretty well, and this morning she's much less stuffy. Hopefully we're kicking this. Everyone seems to be doing a little better today even though we're still tired.

Marie is playing on the floor with Josie right now, and she ate all of her applesauce this morning. She seems to be more alert and less grumpy, a good indication I think that she's not feeling so crummy.

Thanks for all your words of support and prayers, I was a little gloomy yesterday when I posted, but today things are definitely looking up!

Good words for today.

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

"He Is There" September 14, 2008 ...I am with you always, to the end of the age. Matthew 28:20b He that goes a borrowing goes a sorrowing. There never was a good war or a bad peace. Never leave that till to-morrow which you can do to-day. Early to bed and early to rise, makes a man healthy, wealthy, and wise. All of those are expressions made famous by Ben Franklin. Thankfully, the ability to express truth in a simple way did not die with the patriot-printer. Recently, I heard such a statement. It reads this way: "Lots of people want to ride with you in the limo, but what you want is someone who will take the bus with you when the limo breaks down." Now, I don't want you to think I ride in a limousine. I don't. But I still understand what the expression is trying to say. Fair-weather friends surround all of us. When we have money, or are going to a party, or doing something exciting, they're there. But if we need help, or are sick, they disappear. Jesus, our Savior, is not that way. No matter what situation or circumstance we find ourselves, He is there. He Who gave His life on the cross so we might be given heaven, has shown us what it means to remain faithful. When He said, "I am with you always, to the end of the age", He meant it. In good times and bad, happy times and sad, He will be there. His is an example for us. Like the Lord, Christians need to be friends to those who have no friends; we need to help those who are helpless. In the limo, on the bus, or walking with shoes that have holes, we have been given the opportunity to reflect the Savior's love and be friends to someone. From a devotion originally written for "By the Way" THE PRAYER: Dear Lord, thank You for being an "any-weather" friend! I am comforted by the knowledge that You are there for me in any situation. Help me to be more like You in my friendships, so that others may know Your love. In Your Name. Amen.

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

Bad night.

I updated the Caring Bridge with last nights details, in short, it was long and crappy. Marie woke coughing at 12:30, and was struggling. She'd choke, gag, retch and had a hard time getting a breath in between. We called hospice who got the doc on call to call us, and we were reassured we were doing the right thing (keeping her upright etc.).

She was up from 12:30 to about 4, then woke again at 4:30. Luke took her then and I know at 7 she was sleeping in our bed. Hopefully I can get her to take a good nap today, and we can keep the coughing under control. At this point it's not chest congestion, just that nasal drip tickle. I know hospice will check in with us sometime today, and Dr B one of my favorite docs is on call.

Thanks for the continued prayers, you're all wonderful!

More of the same...

Marie is doing about the same today, happy and smiling but with lots of congestion. She napped well, from 2-4:30 or so but woke up and had to cough a lot. It's hard to listen to because she coughs a few times and then just starts choking.

To some it might seem like we're over-reacting, after all, it's just a cold. Unfortunately, there are so many children with mitochondrial disease who have lost their battle all due to a cold. Because Marie is so weak and cannot cough to bring anything up she would need to be suctioned (very unpleasant, and it would become something that would have to be done all the time) or her lungs will "fill up" with fluid (pneumonia like) and, well, you know what the outcome could be.

So, her having to cough at all is hard. But, like I said, we're holding steady. Still doing benedryl, and we did have a BM last night! Thanks again for all the prayers, we are blessed!

In other news, Josie had a great time at her first game! When she got home we hurried to change clothes and then she was off to a Hannah Montana birthday party. Don't worry, I took pictures, they rock ;)

Update

Marie's doing alright. Her lungs were good yesterday when we checked them, and she slept better last night than she has all week (yay!). I'm tentative about saying this, but I think we're on the rebound.

She's still really congested, so we're still on benedryl, and she's have a hard time with BM's but otherwise I see improvement.

We're still going to lay low, it's cold and rainy out today anyway.

I'm really grateful to my wonderful friend Christy, she's going to take Josie to her soccer game tomorrow (her son Aidyn is on the team too). That's a worry lifted.

Thanks for all your continued prayers!

I spoke too soon...

The coughing started last night, I don't know if it was drainage or what but you can hear it in Marie's lungs, she's all rattly. I'm going to try to get our hospice nurse out today, and hopefully some rest. I was up a lot listening to her breath, and I don't think she slept all that well either.

Josie also has a bit of a cough, but for the most part she's over this bug. Thank you God. I don't know what I'd do with myself if I had both kids sick right now. I have a slight feeling of a cold but so far it's not getting any worse... I was praying hard last night.

Marie tries to cough, and she can get one or two good ones out but it doesn't' seem to be enough to bring anything up if she needed to... Please keep praying!