Rant

I'm mad. Mad that my calls are not important enough to be returned. Mad that I get the feeling that sometimes, if you are outpatient, you are not considered to have as much medical necessity as inpatient. I'm mad that I made phone calls to doctors today about two relatively time sensitive issues and neither one saw fit to call me back.

Marie is dealing with chronic constipation. In the last two weeks she's managed to "go" six times. I'm worried that the issue is perhaps more serious than I had believed before, because, she's on Milk of Magnesia twice a day and still doesn't go. I'm scared that her bowels might be stopping working. It sounds like I'm a hypochondriac but I'm not. I don't believe that I am anyway... I have a child with a degenerative disease, I freak out about things. It's allowed.

Also, Marie has had 22 seizures today. Those are the major ones that we notice anyway. Our family doctor thinks she may be having more than I realize because she does this thing where her eyes go two different directions and he thinks that simple act could be a seizure unto itself. She is TIRED! She is pale, she makes moaning noises during her "episodes". She is non-verbal, she doesn't normally make any noise at all, but she moans during seizures. I feel her, I think they hurt. I am ticked that I feel like doctors do not listen to me. She's had her emergency extra dose of Clonazepam and they've slowed down, but come on! 22 is a lot!

I feel anxious because I feel like there's something more I should be doing to call attention to her issues that I'm not aware of. What? I think of things over and over again, what I could do differently but I'm stumped. I just hate that things are happening to her and I cannot stop them.

Ugh, just talked with the on call Neurologist... apparently the nurse at the clinic was supposed to call and never did. I will have her neck.... Marie is taking higher doses of all her drugs. This means in an effort to control her seizures she will be my little zombie for the next few days. Some days we cannot win for loosing. To top it off I called our hospital to leave a message for our family doctor so that he is aware Marie's meds have changed. The nurse I talked to there was rude to me. Don't these people know not to mess with Mommy?



On a lighter note, Matt, you make me smile. When I am excited about techie things I will make sure I use proper terminology in the future, it just makes it cooler:) Thanks for the heads up!

New look

Some of you might wonder what the heck I am doing. I figured out how fancy up my page is what! I'm sort of proud of myself, I'm sort of learning the whole "code" thing as I go, and this was a big assignment. I kind of like it, not sure I'm too keen on the text color but other than that, is nice.

Also, the song is Josie's choice. She loves this one... it's catchy, I'll say that. So, I'm proud of myself and I had to brag a little that I managed to alter my page this much. I have plenty of time since Marie has been sleeping in my arms and Josie is watching Sesame Street... that's right, still can't really lay Marie down for naps. Even if I could put her in the crib it makes me to nervous to leave her there since she doesn't cry. I'm terrified that something bad would happen and I'd have no idea. So, in my arms she stays. Spoiled, spoiled girl :)

Brave Little Soul

I found this and had to share... We made an unexpected trip to the clinic today, Marie's been having a tough time. Check her Caring Bridge page for more details. Please enjoy the story below.

Brave Little Soul
The Brave Little Soul By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world.
She approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?” God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused.
“What do you mean,” she asked.” God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.” The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love – to create this miracle - for the good of all humanity." Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. One of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. She has already chosen a name for you. God and the brave little soul shared a smile, and then embraced. In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.” Thus at that moment the brave little soul was born into the world, and through her suffering and God’s strength, she unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

Quiet....

It is so quiet here this morning. Luke took Josie to her Ear/Nose/Throat apt so it's just Marie and me here. Hopefully Josie's visit with the doctor goes okay. Her ear tubes have been in for too long, 3 years (!) so they're going to talk about surgery to remove them and patch the hole in her eardrum. This sucks, everyone else I've talked to had the tubes fall out on their own. Poor Josie, those who know her understand, this will be MAJOR DRAMA! She is also going to have a lunch date with Daddy on the way back and she's happy about that. I'm making Luke go to WalMart on his way home though.... he hates WalMart!

Marie and I are good, we're playing with seizure meds again to get hers back under control. I counted 15 yesterday, 5 were major, so hopefully this gets settled soon. It sucks for her, but she's so tough. She just grabs my finger and we get through it together. It's odd that I can talk about it so calmly, but it's become our day to day. We know how to cope, so we just do what needs done. Marie is so patient, it inspires me to be a little calmer about everything myself.

This week was an interesting one, I made a lot of new friends. I have discovered this entire group of women who are so strong, they are mothers to babies with special needs too. I think sometimes that I've got it hard, but in reality my story is nothing compared to a lot of them. There are some tough Mama's. It's good to have found them, to pull strength from their stories. It is amazing how we are able to find the people we need. It'd like to think that it's God's hand guiding me in the directions I need to be going. I'm a little clueless, so I have to thank Him for the help. I truly believe he introduced me to a few people this week for a reason.

My sister Annalee was supposed to come and visit yesterday, bummer that the snow came. She's coming today though and Josie is SO EXCITED! I'm looking forward to seeing her too. We don't get to hang out much, so this will be nice. I hope the roads are good for her to get here. I think we got about 8" of snow yesterday, it's hard to tell though since it mostly came down sideways on account of the wind. Can you believe last week I was actually online shopping for a pool for the backyard? I love wearing flip flops and snow boots in the same week!

Also, thank you to those who have made tributes in honor of Marie on her Caring Bridge site. I didn't notice they were there until Annalee pointed them out to me. Thank you:) I am feeling the good in the world. There is a lot of it, although they don't show it on the news. I'm sort of in awe of how many people Marie has touched. She's reached out to more people in her life than I ever have in mine. It's amazing. Thank you for caring about her!

The wind is still blowing here... I'm thinking I need to go to my beach with a big pitcher of margaritas... sadly that probably won't happen. Instead I should clean the bathroom, I am such a lucky girl!

I do have lots of soccer pics to put up too, they're just on the camera. I know, I am feeling lazy though. Josie's got another game tomorrow so I'll be taking more I'm sure. She really loves playing.

I'll leave you with a laugh and another installment of my Funny Things Josie Says:

"Soccer girls wear pony tails Mom, and I am a soccer girl"

"Eyelashes on boys means handsome". Heaven help us!!!

While talking on the phone to my cousin Renee "I'm going to hang up on you now"...

"I'm bored putting away my toys" "I'm bored eating dinner" "I'm bored getting dressed" Notice a theme here?

"Girls like green beans, and I am a girl!"

"When you wear glasses you don't look like my Mommy, you look like a weird Mommy" Thanks.

"Why does God take so long making is summer?"

"That took a long time, like eighty four hundred seconds!" I've know idea how long that actually is, but apparently it is a very... long... time....

Smiling....

Feeling good after the bath....

Daddy loves that baby so...
That tickles!
Pretty girl...

The view from my private beach....

Whew, we have had some busy days. Easter was wonderful! I was tentative, I was worried going into it. Last year, we baptised Marie on Easter. What an amazing day to do it, the church full of lily's, but I worried how I'd handle that this year. With God's grace, it was just fine! Church was nice, it's my favorite service of the year. I only teared up a few times, and once it was while we were singing The Lamb, and that always happens so it doesn't count:)

After church we went out to Marc and Gails for the annual Easter egg hunt. It was the best afternoon I have had in a long time. Marie was a trooper, she wasn't fussing at all and content in my arms. Josie had a blast, her and her cousin Nicole found tons of eggs and got some really fantastic Easter baskets. The meal was as always, really good. Luke played softball, and that game is always a lot of fun to watch. Josie actually batted and ran the bases a few times, she had a blast. Most importantly though, family kept me laughing and enjoying myself too much to get down. It was such a break from my day to day worries, I am grateful for that. It was such a beautiful day!

Other than that, we've been just doing the day to day. Marie is doing a lot better, she's slept through the night 5 days in a row now. Still in the middle though, truth be told, Luke and I like having her in bed with us too much to move her back to her crib. The weather has been so nice, yesterday Josie and I were outside for hours doing sidewalk chalk and blowing bubbles.

Here are some of our recent photos, Josie and I dyed eggs and they turned out awesome! It was a special dye kit for marbled eggs, and I think we'll do them this way from now on. Who knew that a few drops of vegetable oil in the dye could make them turn out so cool?


















Marie napping (on her own!!!) in the recliner. She is so beautiful, and her hair is getting so long!












My view from the sling... Marie in her favorite place:) She's still spending a few hours every afternoon in her pouch, she is my little Sling Thing.











Monday night Josie had her first soccer practice. She's the one in the pink coat and shorts. In this pick she's sitting down holding the ball. She had a blast and seemed to pick it up pretty quickly. I think she'll enjoy it. Also, since the weathers getting nicer and it's outside, her games are something that we can do as a family and bring Marie along. That, is priceless.










Josie kicking the ball during a drill. Just in case you wondered, her shin guards are pink, her soccer ball is pink. Her cleats are black, but they have pink stripes! I mean really, would you expect anything less? ;)

Birthday Ticker

So, I logged on this morning to update Marie's birthday ticker to the right. She needs the one that marches onwards towards the big TWO. I was on the site, I selected the design, then I proceed to the second step where you select the little figure. All of them show little children walking around. None are sitting even, definitely none lying down. All walking.... what the crap?

Am I the only mother of a "special needs" child who wants a ticker for the kids birthday? Why don't they have some for everyone? Sometimes, and trust me I try to be bigger than this, but it is like a knife in the side to see what Marie would be doing if she didn't have Leigh's. They should have a child that represents everyone. I am probably too sensitive I'm sure. I have issues just with the term "special needs". I see Marie as perfect, and dammit, I want everyone else to too.

I selected the tractor. This is relatively accurate since at some point I'm sure Marie will spend some time in one, and I made sure it was GREEN, not the RED tractor. I have a husband that would go ballistic if the tractor was red...

I was struck by this today. As my cousin would say "back when I was in the magic bubble" I would not have even noticed that they didn't have all sorts of children depicted as markers. I would have just picked the one that best matched and moved on. Never pausing. For that I am sorry. I am sorry I was so naive, I'm sorry that I was uncomfortable when confronted with disabled people before. I'm sorry that at the site of a sick child my first reaction was to look away. Thank you God for opening my eyes. There was this entire section of very special people I was missing. Because I'm being brutally honest I admit this, it also makes me sad that there are people who act the way I used to. They don't know what they're missing...

Tough Weeks...

The weeks since Marie turned one have been difficult. She is progressing to quickly, every week brings new things, never happy milestones. I struggle to find words when I speak out loud about all of this, how do you talk about it?

Days go by, and it's strange how normal continues to define itself. Luke mentioned that we are in this continuous mourning process. We are. First we mourned her when we discovered she was sick, then we mourned that she was loosing some skills, then we mourned that she seemed to be uncomfortable, we mourned her no longer being able to nourish herself, we mourned the loss of strength in her body, then we mourned the loss of her voice... we just loose things, bit by bit. What astounds me is this, regardless of how much we loose there is still so much left. I have discovered new things to rejoice in.

Marie does this thing, eyes wide she raises her eyebrows up, it looks like a surprised face. She gives it to Josie a lot. Marie loves to nurse, even now when she's not very good at it it is her favorite thing. I am her lovey, I love how that feels. She is still ticklish everywhere. Her forehead is ticklish, who has a ticklish forehead? Such tiny things, but they are so important. They are Marie. She is such a blessing.

My friend Sarah called yesterday, she is due to have a baby very soon. Together she and her husband have decided to do something wonderful. If they have a girl she will have the middle name Marie. I get choked up thinking about it. This is such a huge gift to Luke and Josie and I. What an amazing way to honor my girl... Of course, Sarah knows that now that I know this, if she has a boy I am never speaking to her again;)

My life has changed so much in the last year, I've been going over that a lot lately. I would not change it now though, even if I could. I have wonderful friends, wonderful family, and two beautiful girls, and Luke. I have a lot to be grateful for, I just need to be better at remembering all of it!

A Prayer in Spring by Robert Frost


Oh, give us pleasure in the flowers today;
And give us not to think so far away
As the uncertain harvest; keep us here
All simply in the springing of the year.

Oh, give us pleasure in the orcahrd white,
Like nothing else by day, like ghosts by night;
And make us happy in the happy bees,
The swarm dilating round the perfect trees.

And make us happy in the darting bird
That suddenly above the bees is heard,
The meteor that thrusts in with needle bill,
And off a blossom in mid air stands still.

For this is love and nothing else is love,
To which it is reserved for God above
To sanctify to what far ends he will,
But which it only needs that we fulfill.

Thank you all!!!

Marie's birthday party this Saturday was amazing! It was so wonderful to have so many people come and show how much they care about her. The cakes were beautiful, made by Aunt Lois so they were extra special. I have some good photos and I'll post them as soon as I get them uploaded. My brother Mickey videoed a lot of the party.

Marie enjoyed some vanilla ice cream, and most importantly, we raised a lot of money for Eli's Angels! What an amazing gift to give in Marie's name... THANK YOU ALL! We, as a family, are so very blessed!

My baby is 1 today!

I cannot believe how quickly the year went by... it seems only yesterday we brought our bundle home. I don't know if it's all the struggles we've faced, how amazing her spirit is, or how much I've learned, but I do know, we are so blessed to get to hold this BIRTHDAY GIRL!!!!

I believe...

I believe that God sends us things when we need them, be it people, sunny days, a friend with margaritas. I think he knows before I know what exactly I need. It was proven to me again today when I stumbled over the lyrics of an old song I used to love... the words knocked me down. This is me, all my thoughts and feelings, put so much more eloquently than I can...

I SPOKE AS A CHILD, Todd Snider

Everyone has days
Like I'm having
Holding onto to anything that I can
To keep myself
From anything but laughing
Looking back as far as I can stand

Out my window, winter is almost over.
I can almost see the sun behind the clouds
Looking back on where I was one year ago today,
laughing at the shape I'm in now.

When I was a child, I spoke as a child.
But all I heard was how I should get ahead.
Now growing up, it ain't anything but all this indecision
With these debts and doubts and worries
Hanging over my head.

When I was a child,I spoke as a child.
I wish I could remember what I said.

I'd like to find that old-time feeling
Somewhere in between what I've become
Somewhere down the line, it must have seemed appealing,
So I suppose that it must work for some.

But I wanna go back to going crazy,
believing every word that I was told.
You know, sometimes, growing up,
I think I'm getting wiser,
And then other times, I think I'm getting old.

When I was a child, I spoke as a child.
But all I heard was how I should get ahead.
Now growing up, it ain't anything but all this indecision
With these debts and doubts and worries
Hanging over my head.

When I was a child,I spoke as a child.
I wish I could remember what I said.
When I was a child,I spoke as a child.
God, I wish I could remember what I said.

PARTY TIME!!!

Marie's 1st birthday party is planned for Saturday, March 8 at 1pm. We will be holding it in the basement of Zion Lutheran Church here in Holyoke.

We'd like to ask that instead of gifts you make a donation in Marie's name instead. Donations can be made to Eli's Angels, http://home.comcast.net/~elis_angels/, or MitoAction, http://www.mitoaction.org/index.shtml . We'll have an offering basket there that day.

I hope that many of you can make it. Marie has touched so many lives, and we want to make sure that we give her the most wonderful birthday party we can, surrounded by all the people who love her! We hope that you can join us that day!

Home

We're back again. It's going to take a lot to settle back into any sort of routine. Marie is still sore, still crying a lot, still wants Mommy all the time. And she should... Josie wants me to play with her constantly, I wish I had 4 arms. It's like starting over from scratch again with a newborn, it is hard, I feel like I don't know how to feed my baby anymore...

Marie's surgery went well, they tell us she's doing fantastic. I hate seeing her like this, she is sore, she is tired, she gags on her spit because she cannot swallow like she used to. I hope that we did the right thing, time will tell. Being a parent is really hard, so much harder than I would have ever guessed. I am hurting with Marie right now...

Luke and I are sort of rocked by this. Her surgery was harder on us than we thought it would be. This is only the first stop down the path with Marie, I wish that we could stop walking sometimes and just stay right here. I'm afraid of whats around the bend.

We are being as positive as we can, and so many people tell us to be, it's just hard. Reality is hard. I just want to be pissed off. I'm tired of my baby having it so rough... I hope that she heals soon, I hope that she starts smiling more, I just hate seeing her not feeling well... I hate that Josie has to go through so much with her sister... still we're lucky to be surrounded by some really amazing people. God sends me just who I need whenever I need it, God makes it hard to stay mad at him...

A Cradle Song by William Butler Yeats

The angels are stooping
Above your bed;
They weary of trooping
With the whimpering dead.

God's laughing in Heaven
To see you so good;
The Sailing Seven
Are gay with His mood.

I sigh that kiss you,
For I must own
That I shall miss you
When you have grown.

LA Ink episode featuring Mitochondrial Disease

The verse he refers to is (totally appropriate)

Ecclesiastes 3:1-15
A Time for Everything

There is an appointed time for everything. And there is a time for every event under heaven
A time to give birth, and a time to die; A time to plant, and a time to uproot what is planted.
A time to kill, and a time to heal; A time to tear down, and a time to build up.
A time to weep, and a time to laugh; A time to mourn, and a time to dance.
A time to throw stones, and a time to gather stones; A time to embrace, and a time to shun embracing.
A time to search, and a time to give up as lost; A time to keep, and a time to throw away.
A time to tear apart, and a time to sew together; A time to be silent, and a time to speak.
A time to love, and a time to hate; A time for war, and a time for peace.

Music selection...

The current top song is Josie's favorite at the moment. We call it the Combine Song, she heard it in the combine with Daddy over the summer:) It's a little punk rock, but then, so is Josie.

And more pictures...

I fixed the photos!!!!

Finally, and in no particular order, here are some new pictures of our girls!!!

















Marie got new purple Robeez booties, she loves them and they keep her tootsies warm!



















Josie is getting to be quite the artist, here is one of her recent works. They're all done on dry erase board so I've been trying to get photos of the really good ones before she erases them. Daddy is blue, I am green and have no hair, that's Josie up by the sun and Marie down by the tree. No-one ever has any arms... I'm not sure why.















Marie snuggling underneath the prayer blanket we got from Aunt Peggy's church in Estes Park. It's our favorite!













This was just the other day, they were playing hide and seek under the quilt and completely pleased with themselves.

Our family.... this was the beginning of December...




















Christmas Eve, Josie and Marie had matching black velvet dresses...


















Marie and Mommy


















Josie feeding Marie. She does this often and it's a huge help. Marie still doesn't really care for her bottle but she takes it better from Josie than from Luke or I.










Happy girl...

ELI'S ANGELS BOOK DRIVE

Eli's Angels Book Drive!!!!

Please help us fill our bookshelves for 2008…
We need these items for ages 10 and under

NEW Books

Children’s DVDs

Music CD's

Gift cards to bookstores to purchase books!

Eli’s Angels is a 501 (c)(3) non-profit organization
for children affected with a Mitochondrial or Metabolic disease.

Each month every child in our program receives a book or small gift.
Our packages bring much deserved support and smiles
as these children and their families courageously struggle with illness.

At this time there are over 138 children in Eli’s Angels!

Please visit our website at: www.ElisAngels.org

Send donations to:Eli's Angels PO BOX 423Eastlake, CO 80614-0423

For questions: akurtz1974@msn.com

Funny Things Josie Says

So we're home, and glad to be here although Josie informed me she'd have been okay staying in the hotel longer. She loves it, and says home is boring. I'm glad that she enjoys our visits to Denver, I see more of them in our future.

It's been awhile since I did my list of funny things, and I want to write it down so that I don't forget. For your reading pleasure:

This is an old one. Before Christmas Josie was sitting in the corner on a little chair with a large pile of toys. Any of you with kids know that sitting quietly in the corner is not always a good thing, who knows what they're up to. So I asked Josie what she was doing. "I'm driving to Neverland." Oh, well, what's the pile of toys for. Josie replied, as though I am the biggest idiot in the world "Well, it's kind of a long drive". Of course it is. Why didn't I think of that?

Driving home from Denver Josie held up four fingers, "I am this old". Then she held up five fingers. "Next year I'll be this old, and I'm all out of fingers." She then held up her other hand, "It's okay because I've got more (fingers)!".

My cousin Renee filled me in on this one and it cracked me up. She watched Josie during our Metabolic apt. and they went check out the glass elevator at Children's. Josie crouched down behind the glass wall, Renee asked her what she was doing. "I'm hiding" Josie said. Only at 4 years old can you be invisible behind a glass wall!

There's more that I'm forgetting now, but, she did keep us smiling through our trip!

Gearing up for a long week!

I wanted to post quickly tonight, we're just getting ready to head for Denver tommorow afternoon. We will be staying at the Holiday Inn Express, and Luke and I will both have our cell phones.

Josie is excited, she really had fun last time we went to an appointment at Childrens, and my Mom is coming to stay and help us out Monday thru Tuesday. We also are going to have dinner with my friend Britt on Tuesday night and we're looking forward to that.

All in all, we're just getting ready. I'll have a lot to update you all on when we get home I'm sure. Right now the plan is to be home Wednesday evening, and I'll update the CaringBridge site then. Much Love- Shan

HOPE

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the
words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

Emily Dickenson

Rock me...

Ah, I think this is my new theme song. Rocking my baby seems to be about all I do, but I'm being careful to treasure this time. It is so nice when she is snuggly, all the crying I could do without.

I wanted to let everyone know I updated the CaringBridge site... Until later, Shan


Daffodils - a poem by by William Wordsworth
I wandered lonely as a cloud
That floats on high o'er vales and hills,
When all at once I saw a crowd,
A host, of golden daffodils;
Beside the lake, beneath the trees,
Fluttering and dancing in the breeze.

Continuous as the stars that shine
And twinkle on the milky way,
They stretched in never-ending line
Along the margin of a bay:
Ten thousand saw I at a glance,
Tossing their heads in sprightly dance.

The waves beside them danced, but they
Out-did the sparkling leaves in glee;
A poet could not be but gay,
In such a jocund company!
I gazed—and gazed—but little thought
What wealth the show to me had brought:

For oft, when on my couch I lie
In vacant or in pensive mood,
They flash upon that inward eye
Which is the bliss of solitude;
And then my heart with pleasure fills,
And dances with the daffodils.

THANK YOU!!!!

Luke and I are so touched by the overwhelming amount of support we have received in the last few days. Everyone is just so wonderful, I get all teary every time I think about how much everyone has done for us!

Thank you for the meals, I cannot tell you what a relief it is not to have to worry about what we'll have for dinner. To not have to worry about finding time to cook is a blessing. Marie is still having pain, which translates into crying fits and all I can do is hold her, almost all day. To have one less worry is such a relief. Thank you, thank you, thank you to the Women of Zion and the other's I know that have helped. You are all wonderful, Luke and I are deeply grateful.

Josie is enjoying all of this too. Thank you very much to Don and Jan for their gift of "tea party supplies" to Josie. It was wonderful of you to think of her. Also, Rita K- Josie said while eating your meatballs, "Max's Grandma made these? Max's Grandma is a beautiful cook".

We are just humbled by how much everyone has jumped to do for us, we are grateful. I hope that soon the doctors can help Marie to feel better (her surgery will help they tell me), and I look forward to having my arms free again.... It is so wonderful to have so many care for us when we need it though, thank you!

Help

Luke and I had mentioned that I would post this here. I don't want to detract from Josie's birthday post below (so please read that!) but we have hit a point where we have to accept that life has changed and we can no-longer pretend to be completely normal.

Marie is progressing, she is having a lot of pain now and we're working with the doctors to correct that (to read up on specifically what's new with Marie please go to the CaringBridge site). That said, I spend almost all my time holding her and on bad days that's all I do. I am struggling to find time to clean and make dinner and so I'm asking for help. This is difficult since I have the fault of being a little proud, and also, those who know me well can attest, I am a complete control freak. Ask Luke about it, he'll be glad to share stories on how crazy I can be.

Anyway, I know that there are a lot of you who have offered to help, and I'm always at a loss for what to say when asked. I am listing things here, please don't feel pressured to do anything, but if you'd like to help, this is what we need:

*casseroles for the freezer (on bad days this will help me so much!)

*someone willing to come play with the girls a few hours (on call) so that I can clean the house (this is on hold until Luke finishes the bathroom, I'm on a cleaning strike until then)

*when Luke starts farming again someone to take Josie to ballet at the Peereless at 4pm on Monday afternoons.

I'll probably have to add to this as time goes on, taking care of Marie takes up a lot of time and I know in the future it will only take more. I try to spend my free time with Josie, so I'm a little strapped.

Thank you so much to everyone who's helped us out so far, and to those who have offered (sorry I'm always at a loss when you ask me in person!)!
Much Love- Shan

4 years old...

Josie's birthday was awesome. She had her party on Saturday night at Schmidt's. She loved that we had pizza, and her cake looked wonderful (it was white and pink with tiny pink and yellow roses and a picture of Cinderella, Snow White, and Sleeping Beauty on it, I have pics but of course I still haven't fixed my computer so I can't post them yet). Anyway, she had a blast.

Everyone completely spoiled her, we are really lucky to be surrounded by such wonderful family and friends. She got to name a few things: a gift "ther-trif-ic-kit" to Inklings Book Store, a Little Spout Cabbage Patch Doll that went to church with us Sunday morning, a really beautiful necklace with a busy bee on it, just like Josie. She also got tons of coloring books, a big floor coloring/painting mat with Barbie from her friends Brittney and Kayla. I have to say "friends" because now that Josie is grown up and 4 she informed me that she doesn't need babysitters anymore.

Sunday morning the entire church sang happy birthday to Josie, then afterwards we got Chinese food and her Grandma Judy came from Greeley. Her Aunt Stacey and Uncle Glendon were already here with cousin Gavin, and together with Papa Steve we had a nice afternoon. Josie got a leap-pad from Grandma J that she loves, and I think we'll use her birthday money to buy a few more books when we're in Denver next week (back to Children's, hooray!).

All in all it was a really good weekend, Marie did good at the party and yesterday afternoon (Sunday morning was really rough for her though). I cannot believe my baby girl is 4! She tells me next week she'll be 5 and she'd really like another pizza party!

CaringBridge

I have created a new website, just for Marie. Please visit http://www.caringbridge.org/visit/marieschlachter. I will continue the blog, but I want to focus here on our entire family, not just on updating on Marie's disease. I look forward to "seeing" you over there! Much love- Shan

She shares!

This week Marie learned how to share. Well, she learned that it's lots of fun to share whatever you're eating by putting it in Mommy, Daddy, or Josie's mouth. This was a soggy fruit strip, and a soggy biter biscuit. She thinks it's pretty funny to put the food in our mouths for a change. It was lots of fun playing with her at that.

Marie also got her second synergis (RSV) shot yesterday. No complications, though last night was another horrible one sleep wise. Every half hour she woke and fussed, Luke and I gave her Tylenol every 4 hours... don't know if the shot bugged her or if it could have been something else. At any rate, naps will be mandatory in this house today.

Luke is plugging away, he's been remodeling the bathroom (like we don't have enough going on right?). It's looking good, he's hanging drywall. I can begin to see the finished product, it's going to be really nice.

Josie has been helping him a lot, she follows him, right on his heels most of the time. She has a lot of fun doing things with him. It's so much nicer having him home this winter as opposed to last winter when he was gone all the time hauling sugar beets.

I finally talked to our case worker at Children's Friday. They do not feel another MRI is needed at this time. They want to have our appts with cardiology and GI and opthamology to see if they can locate where Marie's pain is coming from. That's all well and good, but it is 2 weeks off before we have those appointments, if their test results even turn up anything at that time. Marie is still crying inconsolably and going stiff at least once a day, and now I'll have to wait longer before I can find out how to help her. I have a fear that there will be no answers about her pain from cardiology and GI, and then we'll have to wait longer for an MRI and while all of this drags on Marie will still be hurting sometimes. I feel like my hands are tied, I'm at the mercy of their bureaucracy and it pisses me off. I had started this year off with the idea that I should try to be more "zen" about things, they're screwing with my resolutions.

All in all we're good though. We march on, the girls play, Marie smiles and life is as good as it can be. This morning I read my daily devotional, my friend Betty got me a wonderful book of them last year. Now, I am not very good at this. In fact, most day's I don't get around to reading the devotion for the day. I skip whole weeks. This is a good thing though, since at this rate I'll be able to use this devotional book for about 10 years and keep finding new things. Anyway, today's really got me thinking. It is titled "Don't Chase Blessings":

Blessed (happy, fortunate, to be envied) is the man whom You choose and cause to come near, that he may dwell in Your courts! We shall be satisfied with the goodness of Your house, Your holy temple. (Psalm 65:4)

The author of the book then explains the passage stating:

"Instead of chasing after blessings, we need to chase after God. If we chase God, He will chase us with blessings. That is why the kingdom of God is sometimes called "the upside-down kingdom". God's economy doesn't work the way we think it would. First is last, and last is first. If we want more, we are to give away some of what we have. To be great in God's kingdom, we must serve the needs of others. And if we want blessings, we must get our mind off them. God knows what we want and what we need. He wants to give us blessings that we haven't even verbally asked for."

Such an interesting idea, I'd never thought of it that way before....

GI Appointment

This morning was our appointment with the Gastroenterologist at Children's. It was a good appointment. Dr Soden was very good at listening to our concerns, and he provided a lot of information. He had read Marie's chart prior to our visit so he was familiar with her history which was really nice.

From this appointment we have the following: an evaluation will be done in the Feeding Disorder's Clinic at Children's. They will provide occupational therapy for Marie in the business of eating as she struggles to suck and swallow.

Marie will have an upper GI x-ray in February. This will give them a "map" of her GI tract, and they need to know her anatomy there as a feeding tube (called a G-Tube) is going to be a necessity in the future. Right now Marie is doing alright, but she's not gaining weight in a normal fashion. They're calling this "failure to thrive". She's basically struggling to get her nutrition. As Marie looses the ability to eat as well on her own (this happens with the progression of Leigh's Disease) she will need help. Enter the g-tube. It will help her get additional nutrition, but she will still be able to eat by mouth if she wants to and still can.

The doctor switched Marie from Zantac to Prylosec. Prylosec is a little stronger, hopefully it will help her with the pain she suffers from reflux (vomiting).

We will also meet with the Pediatric Surgery Team at Children's in February. When the time comes, they'll be the one's performing Marie's surgery. We will take all our questions and concerns to them regarding the procedure. It's actually a fairly routine one for them, so our concern is not the surgery itself but how Marie will do following it. Kids with Leigh's often struggle to "bounce back" following sickness and surgeries.

When they do the surgery to put the tube in they will also do an anti-reflux procedure (fundoplication; this should basically stop the reflux by surgical means, to read more on that go here: http://www.webmd.com/heartburn-gerd/fundoplication-surgery-for-gastroesophageal-reflux-disease-gerd).

Once again, none of this is happening now, we're just preparing for it in the future. Three months ago I probably would have lost it talking about putting a tube in my babies stomach to help her eat. Today, it's just one of the things we'll have to do to make life better for Marie. She will still be able to eat orally, and taste food, which is important to me since I think that food is one of the best things about being here. It's just something we will have to do... Marie can handle it. She is remarkably resilient.

We also had a nice night in Denver last night, we went to eat at Joe's Crab Shack, Josie had a blast. It was nice to pretend we were normal, without any worries for an hour or so. I'm nervous taking Marie out being that it's cold and flu season, but it was so nice. A much needed break for us all.

And, since I've decided I like posting poetry here (I don't think that people read it enough anymore) here is my addition for this post. Enjoy:)

Heavenly Grass

My feet took a walk in heavenly grass.
All day while the sky shone clear as glass.
My feet took a walk in heavenly grass,
All night while the lonesome stars rolled past.
Then my feet come down to walk on earth,
And my mother cried when she give me birth.
Now my feet walk far and my feet walk fast,
But they still got an itch for heavenly grass.
But they still got an itch for heavenly grass.

Tennessee Williams

Anniversary

A little known fact about Luke and I.... 4 years today a very pregnant me, and a very scared Luke signed the papers making us legally husband and wife. Our wedding in the church didn't come until the following September... the result it that we have two anniversaries. Today is always special to me since it was our first big leap, the second big leap came 13 days later when Josie was born. It's crazy to think of all the things that have happened in our little world in 4 years. I know that we have a lot more years to come:)

I CARRY YOUR HEART, E. E. Cummings

i carry your heart with me (i carry it in my heart) i am never without it(anywhere i go you go, my dear; and whatever is done by only me is your doing, my darling)

i fear no fate (for you are my fate, my sweet) i want no world (for beautiful you are my world, my true) and it's you are whatever a moon has always meant and whatever a sun will always sing is you

here is the deepest secret nobody knows (here is the root of the root and the bud of the bud and the sky of the sky of a tree called life; which grows higher than the soul can hope or mind can hide) and this is the wonder that's keeping the stars apart

i carry your heart (i carry it in my heart)

Sick and tired...

Marie was up practically all night last night. This is the third night in a row like that. She can't seem to get comfortable. She tosses, turns, and cries out. I roll back and forth from side to side nursing her, doing nothing more than dozing all night long. I just am not getting any rest, and it's easy to get down when you're tired.

Luke and Josie went to church without Marie and I this morning. It's something I'm beginning to get used to, staying behind with Marie. There are days when I'm rocked by how much our lives have changed. I worry about bringing Marie out, I worry about where sick people are lurking, like zombies. I worry about every cough and sniffle and cranky mood in both my girls. I worry too much.

Gone are the days of going out to dinner with the kids, even going to the cry room at the movies is a worry. Who could have been there last? Did they have colds?

Also, we don't go outside for walks much. It's best to keep Marie out of the cold and wind, and well, that's what it's like outside since it's January. Cold and windy. So we stay in, and we try to make the best of it. I can't help but feel jealous of the people who just do whatever, and bring their kids along. We can't even get a sitter as Marie is so terrified of strangers, and she refuses a bottle still. I know it's not productive, jealousy is an ugly feeling. I really try not to go there if I can help it...

All of this I wouldn't trade though. I wouldn't trade anything for Marie... sometimes I am just hung up on how our life used to be. How hard everything seems now. Still, she's napping on my chest and very warm and snuggley. I have to be content with just that, and mostly that's enough.

I think I'm writing today to get these negative thoughts away....

"Sick and tired of being sick and tired.
Everything around you's growin' old.
The days drag on, the nights last forever,
Every day's tougher just to keep it together.
Forget everything you've ever known,
Except for home."
Cross Canadian Ragweed, Sick & Tired.

Ears and more....

This morning we met with the Ear/Nose & Throat (ENT) doctor for Josie's tubes. They looked good. Her last infection is cleared up and the right one appears that it may come out on it's own. This would be awesome because the alternative is another surgery for Josie to take the tubes out. Right now we'll leave them alone for cold/flu season and revisit in April. She was a champ being super still for the doc to check her ears.

I asked the ENT doc about Marie's "snorty" breathing. She's been breathing as though her nose is stuffed for the last month to month and a half. He listened two seconds and announced she's loosing control of her palate. For those of you (like me) not completely sure what a palate does check here: http://en.wikipedia.org/wiki/Palate. Basically, it's a muscle and as I'm learning with Leigh's Disease, the basal ganglia (part of the brain that's affected) pretty much controls all the muscle movements both intentional and unintentional in your body. The ENT doc said it's likely going to get worse, sleep apnea and snoring are concerns. She could have tracheal tube placed if it gets bad enough to help her breath. I'm glad I know, but hell, I sort of wish I'd never asked.

Long story short, hooray for me when I ignored the metabolic doctors lack of concern. It is important that she breaths snorty, and now I know why.

We also today had lunch with a new friend of mine. Her little boy is 7 months and has Leigh's also. The disease affects him a bit differently, but it's just as devastating. If you all would, include little baby "L" in your prayers. They are wonderful people, Luke and I are so glad to have met them. It's good to have someone who is going through this as well.

Marie actually slept most of the way to Ft Collins in the car, but she had a rough ride home. We continue are love/hate relationship with the car seat. Towards the end she was pretty uncomfortable, she seems to have some pain almost every afternoon now. I teared up in the car, no worries, Luke was driving.

That done, I am going to go and play with my girls. Everyone have a good night... we have not been sleeping well in, actually, I can't remember when we last slept well. Hopefully tonight is restful if nothing else... much love- Shan

Quick Update

I don't have a lot of time this morning, but I wanted to update everyone.

I managed to get our appointments with Cardiology and Opthamology scheduled. We'll be doing a marathon of appointments on February 4 & 5, but I'd rather that than have to go to Denver once a week. So, we have metabolic, opthamology, and cardiology squared away. We should also be able to get an MRI on the 5th, I'm going to call again and confirm that.

Josie has her Ear/Nose/Throat appt on Friday, we'll be talking ear tube removal and adenoid removal, tons of fun, but she needs those tubes out. She's been a really good girl lately, she's finally over her jealousy of Marie needing to sleep in our bed. She doesn't care much anymore. She also went through our toy boxes with me and we have a ton of toys to give away (if anyone knows a family that could use some girl toys please let me know). She finally seemed to grasp that there are kids who are not as fortunate as she is in the toy department, she was very giving. Pretty big deal for a three year old. I was proud of her for letting go of her toys.

Marie is doing okay. She's smiley still most of the time. We've had some more inconsolable crying spells and our doctor has put her on Zantac again. He thinks it sounds like reflux, and maybe it is... I'm willing to try the medicine in hopes that maybe it will make her more comfortable. Tylenol definitely does not seem to help it.

Marie also no longer takes the pacifier. She just can't suck well enough to keep it in her mouth so we've sort of given up. She's also having harder time standing, her feet turn in really badly. We are going to meet with the orthopedics guy at Children's to find out about bracing her ankles to help her. She's not close to walking at all but she enjoys standing and I'd like to see her be able to continue it for as long as she can.

We're still trying to keep her moving as much as possible, when I do yoga in the morning I put her into some of the poses with me just to keep her tendons loose. She's not rolling over as much now, I think it's just harder, but we're trying to figure out how to encourage her. The problem is that if she's content she's happy just to lay on her back. I almost need to make her mad a little bit to get her rolling.

She is also now 16lbs, 12 ounces! That means sweet Marie has gained 6 ounces in the last month. She's been vomiting a lot less so I think it can be attributed to that, either way, we're happy.

Hope every one's doing well and adjusting to the new year. I still keep writing '07 on everything... I probably will until July.

Thanks to everyone who's helped us out lately, and who's praying for us. Much love- Shan

Doctors....

Doctors annoy me. Not all of them, but a good many of them I'm beginning to learn just assume everyone else knows what they do. I have finally learned after a month of leaving messages that I must get our family doctor to get me the referrals to the cardiologist and opthamologist that Marie needs to begin monitoring her heart and eyes. Apparently it is not possible for the metabolic Dr's at Children's to make referrals to other parts of the hospital, my doctor here at home must do that. Stupid red tape....

So, I am on a mission to get these appointments scheduled now. I also am on a mission to get another MRI, something I feel is necessary as Marie seems to be having some pain now and I want to see that everything is known and being done to make her life as easy as possible. I am prepared to have a tantrum in order to get it. I have a very good teacher, Josie throws fantastic tantrums.

Happy news also, insurance has agreed to pay for Marie's RSV shots!!! Apparently we are really lucky in this, the doctor at Children's said a lot of people have not had any luck getting the shot covered for their kids. We really didn't have any trouble, and I'm so glad for that. She will get these shots once a month through May.

Marie herself is doing okay. New Years Day was wonderful, some good friends gave us the opportunity to take her out and I think she really enjoyed herself. We are so lucky to have good people and good family surrounding us.

Yesterday was okay, but in the evening she vomited again, hard this time. We were worried that she may have gotten a bit in her lungs, but she seems to be okay. She threw up twice, the second time her stomach seemed to contract and not release. It was horrible, she was in a lot of pain. As soon as it subsided though she was smiling again. She amazes me, I am constantly learning from her. This is one of the reasons though I feel compelled to really push for another MRI. I am no scientist, but I had enough in college to know that the stomach is smooth muscle, and that falls into the category of intestines, heart, etc. All these involuntary movements controlled by the brain... I explained this to our case worker today and am hopeful that when she takes it to the doctors they will see my concern as justifiable.

This is new to me, advocating for my child. I suppose I have before for Josie, just not as aggressively as I must for Marie. I feel very driven to be aggressive though, Luke refers to it as Mama Bear. Roarrrrrr ;)

Day to day

I just wanted to update everyone on how we're doing now since I haven't done that for awhile.

Things have found a groove of sorts I suppose. We have good days and bad, still trying to make the best of things. I've spent some time getting Marie set up with Easter Colorado Services. They're a government run program and basically they will help us with physical therapy, counselling, support etc. since we're so rural out here. It's funded by the Individuals with Disabilities Education Act which guarantees supports and services for children under three years of age which meet it's requirements. This is good, since I cannot find a good pediatric physical therapist out here. They have resources, they know where to find these people. I am happy, I need that help. Unfortunately, this has come with the realization that while I see Marie as a perfect, beautiful girl, the government and probably a large portion of the people we do not know see her as handicapped or disabled. This thought has been difficult to wrap my mind around.

Marie has been better with the vomiting, not every day anymore at least. She seems to have put on a few ounces, I hold my breath, I don't want to get my hopes up. Our appointment with the GI doctors is on January 16. She still smiles a lot, she's happy, and so easy going. She still sleeps in bed with us, but the upside to that is every morning I am greeted by her smile when I wake up. The downside is that she kicks.

We have had several alarming periods where she cries inconsolably. She gets stiff, arches back, throws her head back and screams. Her eyes are clamped shut and she breaks out into a sweat. It is horrible. All we can do is walk her and rock her and reassure her that we're right there. Often, when she calms again she will vomit... it sucks. We are really concerned by this and I've left message at the metabolic clinic with our "case worker" to see what can be done about this. It really seems as though there is pain with these episodes and I am worried about finding a way to help her. She seems to be a little weaker too, it's hard to hold her head up, and she struggles to sit while assisted without reclining. Still, she smiles, so to hell with the rest.

Josie is amazing. She is my sunshine. She really keeps us busy, and up, and doesn't allow for time to feel sorry for ourselves. She is also already looking forward to her birthday. I cannot believe my baby will be 4... her favorite things at the moment are princesses, reggae music, drawing, singing (there is forever a song being sung at our house)...

I think I forgot to post also, Marie got her 1st RSV shot on December 19. She will get one a month now until April. Insurance tells me as long as there is a medical necessity, they will cover the shot. We're praying for that...

Also, thank you to everyone who has put Marie on their prayer lists. I think she is on more than I realize... when I get down, this brings me a lot of comfort. That and I wrap her in that wonderful quilt from Aunt Peggy... I know that Marie has touched a lot of lives... much love- Shan

HEAVEN'S SPECIAL CHILD

HEAVEN'S SPECIAL CHILD
Author presently unknown

A meeting was held quite far from earth,
It’s time again for another birth.
Said the angels to the Lord above;
This special child will need much love

Her progress may be very slow,
Accomplishments she may not show.
And she’ll require extra care,
From the folks she meets down there,

She may not run or laugh or play,
Her thoughts may seem quite far away.
In many ways she won’t adapt, and she’ll
Be known as handicapped.

So let’s be careful where she's sent, we want
Her life to be content.
Please, Lord, find the good friends who, will
Do a special job for you.

They will not realize it right away, the leading
Role they’re asked to play.
But with this child sent from above, comes
Stronger faith and richer love.

And soon they will know the privileges given,
In caring for their gift from Heaven.
Their precious charge, so meek and mild, in
Heaven’s very special child.

Christmas

Christmas at our house was wonderful. Luke and I hosted Christmas Eve with his Dad and Grandparents and then we had Christmas Eve night following church all to ourselves. We videoed the whole thing, and took a lot of pictures. Once again, I have software issues and can't seem to post anything to the blog so as soon as I figure that out I'll be putting up a ton of pics.

Josie was really excited this year (finally!). She got two new Barbies (thank you to Laura for the barbie and clothes, you are wonderful, we love you). Jo also got a tea set, candy land game, several princess games, Bella Dancerella (a DVD, mat and wand that all comes together to be this ballet princess thing). She was really spoiled and has been playing non-stop.

Marie got a wonderful baby doll, a new ball, a soccer goal complete with ball (she's batting it around like crazy, hooray for toys that encourage her to work those little muscles). She also got a castle book, and a lot of other things.

I cooked my first turkey Christmas day and it actually turned out, it was a lot of work though.... it will probably take me a year to get up the nerve to do that again.

Marie had three wonderful days, from Sunday-Wednesday, but this afternoon was a rough one. She didn't nap well and this evening she had some inconsolable crying and then she vomited. No interest in food either. Her cries seem to Luke and I to indicate pain, so we're documenting everything to bring to the GI docs on the 16th. It's hard to not be able to do anything to comfort her during these tough spells, I cried a lot this evening.

All in all though, the last week has been a good one. We're really thankful that Christmas could be that way. Thank you to everyone who's supported us during the last month, and to everyone who spoiled our girls... like I said, I'll put pics up as soon as I can!

Side note

I don't want to detract from my Thank You posted below but I wanted to let you know I'm having a hard time with my photos software. I wanted to let you know this because I know some family is really looking forward to seeing my videos of Josie's Christmas pageant, but I have software issues and can't post them. As soon as I figure this out I promise I'll put them up. Grrrr, Microsoft... MERRY CHRISTMAS!!! Much love, Shan

Thank You

This week Luke and I received a really wonderful gift from our church family, and others. We just wanted to once again say thank you. The last months have been a challenge, but we were reminded that we are not going through this alone. Sometimes in the day to day it's easy to get wrapped up in our own little world, but this gift was an amazing reminder that everyone is affected by this, and so many people care about Marie and our family. We were so touched, thank you from the bottom of our hearts.

Luke, Shannon, Josie, and Marie

Blog Link

It has come to my attention that there are a lot more people reading this blog than I was ever aware of. Thank you all for your interest in our family, but I ask that you keep in mind that this site is very personal as well. I ask that you all please respect the content, as it was initially created to share only with friends and family. I ask that if you feel the need to share the blog link you take that into consideration. I feel in that creating this blog I invite you into our home, I ask that you not invite strangers into our home as well.

Thank you all for your thoughts and prayers, we appreciate it so much!
Luke, Shannon, Josie, and Marie

9 month check up

Just wanted to update everyone. Wednesday Marie had her 9 month check up. The weight we got at Children's must have been off because she weighed in at 16lbs 6 ounces. This is a releif, she's not as far behind as we thought. She's 27.25" long, so about 40% for height, 10% for weight.

She got the pneumovax vaccine which will guard agaist a type of bacteria found to cause ear infections. We also got everything together to begin giving her the RSV shots. This will protect against upper respiratory viruses, and while it's wildly expensive we feel that it's comepletely worth it. She'll get the first on Monday (I think).

Other than that we're just hanging out. My brother Mickey is here for the weekend, and Josie's X-mas program is Sunday. Much love- I hope that you are all feeling some of the positive feelings that I am today. Shan

Good News...

Hello all. I just wanted to share a bit of good news with all of you. We got some results back and Marie's white cell count, muscle health, and thryroid groups, are all NORMAL! So, this is good news. Though things seem bleak she is stable, and she is happy. Really, that's enough for now isn't it? Hope everyone is enjoying the snow, we are here. Jo is loving it, and her Papa got her a new sled so she's been a snowbunny. Enjoy the few photos I've posted, I have a lot more on the camera. We've been taking lots and lots of photos lately.


Been farming long?
























See, I knew I could do it "wink, wink"!






























Silly faces....

Results

I'm sure you're all holding your breath, so here at long last are our results.

The testing they did confirmed the diagnosis of Leigh's Disease, or as the metabolic Dr put it, a severe energy deficiency. Marie has a genetic mutation at 14459 (a location in her mitochondrial DNA). This affects Complex 1, a step in the process in the breakdown of glucose (food energy) to it's end product pure energy, or ATP. Complex 1 is one of the final steps in the cycle. This mutation is also present in nearly 100% of her cells in her blood. We knew there was no cure for Mitochondrial Disease, but this also means there are very few treatments.

We will begin giving her riboflavin again, the vitamin in large doses may help her cell function. We will also begin giving CoQ10 (I think it's an enzyme) that also may help to improve cell function. Neither of these will "cure" her, they just may help to slow the progression. We also will continue physical therapy, and we will begin monitoring her organs namely the brain, eyes, heart, liver and kidneys. These organs use the largest amount of energy and therefore as the disease progresses they are the most likely be affected. They can't say which will be affected or when, but through monitoring we'll have an idea and be better able to treat that as it comes up.

Basically, all we can do is make every day for Marie as wonderful as we can, and to enjoy our time with her as much as possible. The Dr's can't really say how long she has, only time will tell.

The major concern at the moment is her vomiting. She's lost a lot of weight, currently weighing in at 15lbs 9 oz, down from 16lbs 2 months ago. We have an "urgent referral" to meet with a gastroenterologist to determine what we can do to possibly curb the vomiting, and what we may need to do to help her gain weight again. The metabolic Dr's basically said Marie is suffering from a "failure to thrive".

So, sadly, I have no good news to post. We've explained to Josie what we can. She knows Marie's body is different and she may never do the things Josie can (crawl, walk) etc. She knows that God will probably call Marie home early.

Luke and I are doing okay. We broke down last night after the girls were asleep. It's really going to be day-to-day. Thank you all so much for the words of support and the thoughts and prayers that I know have been with us. We have needed that, and will continue to need that support so much. I know that Luke and I have been blessed with a very special child... We're still having a hard time talking about all of this. It was hard to type.

We will have to proceed with caution, we have to try to keep Marie from getting sick. It may set her back, and she most likely won't regain afterwards. The worry is that if she gets ill she doesn't have the energy to fight it so it will last longer and be worse for her. She may loose developmental skills that she's achieved. We're praying that she doesn't loose any cognitive abilities.

Once again, we'll need those who are sick to refrain from visiting, you'll have to wash your hands before you can hold her. Otherwise, please come and visit often! She's so special to us, but I know that she means so much to all of you as well.

I've got to run now... we're trying to be as "normal" as we can for Josie... thank you all for everything. Much love- Shan

Ears...

So, I'm finally grabbing a few minuets to update everyone on Jo's Ear/Nose/Throat appointment on Friday. First she had a hearing test, and her hearing is PERFECT!!! Hooray for that, but not a surprise really, everything about Josie is perfect;)

We then met with her Doctor who checker her ears under the microscope. Apparently the left tube is just fine, but there is scar tissue forming around the right tube (the one she always gets ear infections in). The scar tissue is catching all the nasty stuff, then getting infected. He said that after 2 and a half years her body is just reacting to the tube as a foreign body (tubes are only supposed to go a year to a year and a half then they normally fall out on their own). He gave us a new antibiotic to try, a drop called Cyphrodex (sp?). We will go back for a recheck on January 11 and if the drops cleared up the infection we will talk about scheduling surgery to remove her tubes and her adenoids (he believes they may be contributing to the problem). If the drops don't work and she still has an ear infection we will definitely schedule surgery to get the tubes out. Not ideal, but at least we know whats up now.

Marie did great on Friday going to Fort Collins. She was pretty happy all day and didn't get sick at all:) We got to have lunch with my dear friend Britt and we all really enjoyed that. We also swung by Grandma Judy's work and got to see where she spends her days (thanks for the tree, it's perfect!!!).

Saturday was another good day for Marie, we actually were able to pretend that we were "normal" for a little while. She was happy, and pretty strong for most of the day.

Sunday was not so good. After three days of not vomiting she spend the afternoon throwing up. The only thing she absorbed yesterday was breast milk, no interest in food of any sort (other than gnawing on those big hard pretzel sticks). I felt bad for her, she heaved really hard and all I can do is rock her when I know it hurts so bad. The appointment is Thursday and to say Luke and I are on edge is probably a bit of an understatement. We are so relieved to finally get some answers but terrified of what we may hear. I have my list of questions, namely what can we do to put some weight on her. I see now where she's getting thinner, the only real chub she has left is a bit of a double chin. That would at the moment be our largest concern.

I've been reading on Carepages.com other families who have children facing Mitochondrial Disease. It is an evil, vicious thing. All of them suffer so much. I don't really know how you could handle this if you didn't have faith. As strange as it sounds, this has strengthened my faith so much. I know that He must be here with me, otherwise I'm not sure I could handle this. I know that He is with Marie. Thank you all so much for your continued prayers, everyone is so wonderful.

Anyway, as you can see I'm a bit of a train wreck this morning so excuse the rambling. I know that you're all holding your breath for results along with us, so I'll update after Thursdays appointment as quickly as I can. Much Love- Shan