Thursday, January 31, 2008

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.

Tuesday, January 29, 2008


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!

Monday, January 28, 2008


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!

Thursday, January 24, 2008


I have created a new website, just for Marie. Please visit 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

Saturday, January 19, 2008

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....

Wednesday, January 16, 2008

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:

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

Monday, January 14, 2008


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 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)

Sunday, January 13, 2008

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.

Friday, January 11, 2008

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: 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

Thursday, January 10, 2008

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

Thursday, January 03, 2008


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 ;)