Happy Birthday Landon!!!

My friend Tami's little boy Landon is 1 today! He and Marie both have Leigh's, and their first year has been a whirlwind. Landon is one today though, and if there was ever cause for celebration that is it!

Happy birthday beautiful boy, thank you for letting us share in your life!

I love Barenaked Ladies. They make me think of college, when I drank too much beer, and mostly had a lot of fun. Now they do kids music which makes them rock even more I think! Check it out, this is fantastic:)

Names...

I'm fascinated with them. When I was pregnant, my favorite thing was picking out the girls names. Each one was so thought out. I'm also fascinated by what names mean...

Josephine: Hebrew origin, meaning "He will enlarge".
Ann: Hebrew origin, meaning "Grace; favour".

Marie: Hebrew origin, form of Mary. Meaning "Wished for child; rebellion; bitter"
Isabel: Hebrew origin, meaning "My God is a vow".

We did not intentionally choose names of Hebrew origin for the girls, but it ended up that all the names started there. I think their names definitely fit them.

Regular days...

This weekend was a regular weekend. By that, I mean we hung out. Saturday we were a lazy family, we didn't do chores, we took our girls to the park. Just like other people. I pulled Josie in the wagon, Luke pushed Marie in the stroller and we just went to the park. I sat and nursed Marie while Luke and Josie played. While I sat and watched I saw the wind blowing the grass, I saw a butterfly, I saw the clouds move in a sky that was so perfectly blue it matched the color of my babies eyes. We just were. There were no thoughts of feeding tubes, medicines, emotional turmoil, seizures, none of that. I sat and breathed in the air, and I am so grateful for the moment.

Yesterday, Luke and his cousin went to see the Rockies playing in Denver. They flew in his cousin's plane, and Luke had a great time. Josie, Marie and I did more bumming around. After I picked Josie up from Sunday school we came home and played, then went and got Subway for lunch. Sort of a luxury, I don't like to take Marie out much so Josie was excited. She got tuna, she loves tuna.

In the evening we went to Josie's friend Aidyn's 5th birthday party. He is the most handsome little boy, and he has the sweetest way about him. Not all the time, he is after all, all boy. But, there is something very sweet about Aidyn, he is a wonderful kid. Josie had a blast, and Marie enjoyed herself too.

It was nice to just hang out, again, a little vacation from day to day worries. It was so nice to watch Aidyn's mom Christy love on Marie. Christy is one of the best moms I know, and I adore how she is with Marie. Just as though she were any other baby, it's all cuddles and kisses. It feels so good for me to watch. Christy sees the beauty in Marie, just like I do. The wiggles of her fingers, the out of controll-ness of her hair, her little eyes watching streamers. I love watching her enjoy Marie, and I'm grateful for my friend.

As Marie gets bigger, it's sometimes hard for me. Because sometimes when others see her, I think it is apparent that there is something different about my girl. I've been asked a few times, while out and about, how old is she? When I say, nearly 15 months, I see shock on some faces. I know they must think her so much younger. It is inevitable that this will happen. That said, I am so happy to say "almost 15 months". There's some victory in that.

I am grateful we live in a small town. Here, Marie is just how Marie should be. People see her, they know her story, she is just how God meant her to be. No one questions, few ask. I am grateful to them, because it is hard to see that flash of what strangers see through their eyes.

Luke is outside planting a garden. I fought this idea, I'm afraid it will be too much work. He says we need to go on living as we normally would. He's right, as always.

A lot of people have told me they think I'm strong, that I cope so well, that I'm an inspiration. I don't think any of us can comprehend the mess I would be without my husband. My Luke is something special. He is so, so good. He loves all of his girls so well, and he listens to me; he repeatedly astounds me in that he just gets me. He is the place I run to, he's my refuge in the storm. He picks me up when I fall, he has the strongest faith, he pushes me when I need it, he comforts me when I have nothing left. In reading over this, I realize I am very luck to have two people in my life who are like this. The first is Luke, the second, my Father.

Without Luke, I could not be who I am. I am pretty blessed to have him. I see now why God put us together. He knew we'd need one another.

So many have people have told me how I inspire them, which is nice, but I have to admit, I don't think I'm that inspirational at all. I know so many other mothers who would do just what I do if they were in the same spot. Still, when you think of me, I hope that you all realize I'm only half of a whole, and my husband Luke is the one who inspires me.

Caring Bridge update

Ugh. We talked with Marie's metabolic doctor last night.
She called because we had asked them some questions, namely about trying the Ketogenic Diet for Marie's seizures, and secondly, what about her funky GI issues.
Regarding the ketogenic diet, apparently it is not as bad for Marie as we had thought. There is a theoretical possibility that the diet could provide Marie with more energy, the ketones could "feed" her brain, allowing her to be more alert. It could possibly cause slight improvment. On the other hand, if her body doesn't take it well it could be very dangerous and we'd have to stop breastfeeding. Nursing is Marie's absolutely favorite thing in the entire world. I mean, Josie comes in a close second.
So, Luke and I talked. If you know us, you probably know what we decided. We know Marie's time is short. We want her to enjoy it and be as comfortable as possible. We will not try the ketogenic diet. In our opinion, the risks are too high and the possible gain not large enough to justify it. That, and I don't want to wean her. She likes nursing so much she squeeks and flails her arms at me when she wants to. I can't take that away from her.
The funky GI issues are another story. Marie only has BM's (bowel movements) every three days or so and she has to work really hard to make it happen. Apparently this is something the doctors see. The part of Marie's brain that controls the GI tract, heart rate and body temperature is being damaged, we are seeing the results.
We're going to try Miralax first, and then try Little Tummies stimulants to see if we can get her going every other day or so. Hopefully it helps. There's not a lot we can do, just try to treat it as best we can.
The doctor said something I've known but sort of ignored, and that is that "Marie's progression to this point has been rapid". Hard to hear out loud.
So, that was the doom and gloom. On another note, Marie has recently tried bacon, peanut butter, spagghetti O's, and steak. She liked all of them. She can only gum the solids, but really enjoys to, so that's happy. Also the last three days her seizures have been so much better. Small blessings. Shan

Rapid Progression

That's what the doctor told me last night. "Marie's progression up to this point has been rapid". This is something I've know, something I've ignored, something I've understood, something I've feared. To have it said out loud is something I'm not handling well.

She is fighting.... as hard as she can. Her bowels are slowly moving beyond her control, her eyes wander, her hands don't work like they should. I watch her intend to move something to her mouth, instead the arms straightens and she struggles, bird mouth open, but cannot get the object in. She is so proud when I pry open her fists and put things in her hands, you can see on her face.

There was also talk about trying a diet that has huge risks, but could help Marie a tiny bit. The catch is, she must be weaned. Breast milk is too high in carbs to be part of that diet. I can't do it. I won't do it. It's funny, I've never considered myself one of those gung ho, breastfeed or else mama's. I figure, whatever works for you and your baby is fine. I've often wished that Marie took a bottle, it would take the pressure off me. But, I cannot, I will not wean this child. By the grace of God, if she lives to be two, three, four, I hope that I still nurse her. It is is her hugest comfort, the one thing I can give her, I can't take it away.

I'm struggling with this, the rapid progression. I had found a place this week where she's doing okay, Josie's doing okay too. I'm feeling competent, stronger even, our life has gained a bit of a routine and I was enjoying that. Then the wave smashes over me, rapid progression. The reality of how brief time is, how I cannot take a single sigh for granted, it smacks me like a truck. I have to remember, the doctors see only the disease, the don't see the perfect little girl. The don't see how beautiful her spirit is, the don't KNOW Marie, not like I do. They don't know everything.

I also, never have been an "out there" Christian. I was never comfortable quoting scripture, I felt very uncomfortable pushing my faith on others. Luke told me he was proud of the evangelism that I do with my blog. Imagine that, then I realized, I do. I find a lot of comfort in it now, and I have to share it. Because it's how I'm coping, it cannot be left out of what I say.

My friend Mindy posted this on her blog yesterday, and the verse is soothing. Isaiah, Chapter 44:2 "Thus says the Lord who made you and formed you from the womb, who will help you, 'Do not fear, O Jacob My servant; and you Jeshurun who I have chosen." He made and formed Marie, he knew the struggles she would face and yet he trusted me with her. We'll get through this. Like I said the other day, I am not diggin' this roller coaster.

This week

This week finds us "stable". Marie hasn't had a fever in a few days, the weekend was good. Luke stayed home and Josie and I got our flowers in. I hope I didn't bite of more than I can chew, I have about 15 pots spread around... lots of watering!

Luke's Aunt Peggy and Uncle Rick were here. Aunt Peg got some precious time with Marie, it was pretty special for me to watch.

Josie's recital is Friday night at 6pm at the High School Auditorium. We're excited for that. I think it will be chaos, I really don't think she'll know her dance without the teacher in front of her doing it too, but whatever, it will be fun. Her dress is purple, she is excited to wear it.



All in all, we're doing pretty good. This disease that Marie fights definitely has it's ups and downs. Its a roller coaster, but the thing is, I've never been a roller coaster girl. I'm more of a merry go round chick....

Hope everyone has a wonderful week! Much love~

Funny Things Josie Says...

"It's amazing, like a chrysalis". What?! You're 4! I actually had to look it up to remember what a chrysalis was. It's amazing what she picks up! If you're like me, you can read up on a chrysalis here: http://en.wikipedia.org/wiki/Pupa#Chrysalis

"Eeew, please stop that". Overheard while Luke kissed me good by.

"It was a kiss, and kissing means love". Josie on her friend Max, who kissed her over a month ago (and she's still talking about it).

"I LOVE SHOES"!!!!

"Stop it Marie, stop kicking me. Mom, Marie is being MEAN"! Josie tattles now, a lot.

"My tummy hurts, I need something to make it feel better. Something like jelly beans".

"I have gloves now, so I am a real gardener!" We actually found her size gardening gloves at WalMart, not only do they fit but they are purple and have Dora the Explorer on them. They are the most awesome gardening gloves that ever were.

"Mickey is my favorite friend". Overheard while she was happy with my younger brother.

"I called him, and called him! I called him six times, why didn't he answer his phone. I AM SO MAD! I'm going to call him and ask him why he won't answer his phone". Just let that last sentence sink in. This was overheard while she was mad at Mickey. She never got hold of him that morning, and when she finally did get him in the afternoon she was so mad about his not answering in the morning she called him a Dirty Hippie and hung up on him. I think he felt bad.

"Go pour yourself some wine from the frig-i-gator!" When Josie whines (it happens a lot) Luke and I tease her and tell her we'll get her a cup to pour that "wine" out in. She now uses this response, but, it gets her to stop whining. Mostly because she's annoyed and starts yelling.

"Mom, do not sing your songs, they are not funny. They are embarrassing." She told me this last night when I was singing her a silly song. I felt a little silly....

"You know what? We don't buy enough of jelly beans".

Better day...

So far today is better, I don't feel so filled with doom and gloom. Hospice will be here this evening and I have my list of questions... Luke is done spraying too, and while he won't be home for lunch he'll be home earlier today, and that makes me happy. I hope that everyone has a wonderful day! I'm off to play Barbies:)

Tough

I am having a tough week. I don't know why. Maybe it's the reminder of how horrible, horrible, horrible Mitochondrial Disease is. Their was a little girl, Josie's age, who lost her battle with Mito this week. It is a tough reminder. Sweet Landon, who has Leigh's like Marie has been suffering so much, I hurt for him, and at the same time, it is a tough reminder.

I found a fantastic description for what Mitochondrial Disease does to a body:

WHAT IS MITO?
Imagine a major city with half its power plant shut down, at best this would cause a major black out. Now imagine your body working only to one half, the brain is impaired, vision is dim, muscles twitch and you are to weak and muscles too fatigued to walk crawl or write. Your heart is weakened and you are not able to digest your food. For a large number of people especially children this is a fatal disease.

It is vicious. When Marie was first diagnosed with Leigh's we had gone through a brief period where we actually thought she had cancer. In the early days I often wished it had been cancer. The prognosis for both is poor, but at least people UNDERSTAND cancer. I could just tell people, she has cancer. Instead, I had to give a brief science lesson on what Mitochondria are, how they function, why its bad. IT IS SO FRUSTRATING! The closest comparison I can come up with, is that it's the same as Marie having been born with a defective heart. Her cells just don't work.

She's cooing again. It's so sweet to hear, still no crying, but she coo's. Still no smiling, but I see it in her eyes. It's hard to watch her sometimes though. Every tiny squeak is something she works so hard on. Her mouth works and works, nothing comes out. She tries so hard, fists balled up, neck stretched out, and finally, a coo. WHY MUST EVERYTHING BE SO HARD FOR HER!!!!!!!!!!!!! Why does she struggle so hard to make a noise, others take that for granted. I hate it. The only thing that brings me relief is knowing that she has God and Jesus on her side. I swear, she see's them. She looks over my shoulder and talks away, to what I'm not sure. I'd like to think that she's talking to Jesus, and he's comforting her. Because, honestly, sometimes I just don't know how.

My baby, my baby, MY BABY! My babies. This is so hard on Josie too. We talked yesterday morning about heaven. Josie was afraid that when she finally gets there Marie might be gone from heaven, that she might have left for some reason and not be there anymore. I told her that once we get to heaven we stay there, we don't leave. She struggles to understand. Her Bunny is sick a lot, he has seizures, he doesn't feel good. I hate that this is her reality, but I know it's making her a stronger, more compassionate person. Josie would like to be a doctor when she grows up. She humbles me.

Tami, this is for you. I haven't posted poetry for a long time, but it sums up how I feel, and how I know you feel.

Child by Sylvia Plath

Your clear eye is the one absolutely beautiful thing.
I want to fill it with color and ducks,
The zoo of the new

Whose name you meditate --
April snowdrop, Indian pipe,
Little

Stalk without wrinkle,
Pool in which images
Should be grand and classical

Not this troublous
Wringing of hands, this dark
Ceiling without a star.

Oops

Today I gave Luke a hair cut for the first (and last) time. He thinks it's pretty horrible, I keep telling him it's not that bad. I swear, we will crack up about it in 20 years (I already am).


* This is not Luke's hair cut, his is better. I feel that's important to note!

New Pictures!!! (please check out my previous entry for information about Take Steps for Crohn's and Colitis)

I finally downloaded pictures from my camera, I still have a lot on the handy cam though. Here are my favorites from this batch! Hopefully I stay motivated and get the handy cam downloaded sometime this week...

This morning Marie STILL has a fever, and is sleeping a lot. I'm tempted to say that she and Josie have some sort of bug, especially since their cousin Nicole is showing some of the same symptoms. Ugh! Marie was at 100.7 this morning and Tylenol didn't bring it down so she's now had some Motrin as well. Josie didn't feel good for soccer practice last night so I brought her home and she fell asleep on the couch at 6:45. She slept from then on, Daddy put her to bed, and she wasn't up until 7:30 or so this morning. She's laying on the couch watching cartoons right now, being a bit of a drama queen so I think somethings up...
I will be needing one of these after all this is over with! Enjoy the pics!!!

Hanging out in Josie's bed. Marie just lights up for Josie, she definitely loves her sister!
We love the kooky glasses! Thanks Charlee, Matt, Max and Ben!

Posing on the front steps :)
We got new sun hats for this year, Josie is blue plaid and Marie is funky pink flowers...
Watching cartoons...
Standing up big. This is one of the last times Marie was able to bear any weight on her legs. Doing so seems to trigger some of the more severe seizures so we've stopped now.

Josie still looks like a baby when she's sleeping...

On of her last smiles, I'm so grateful to have caught it on film.

My Cousin

My cousin is a brave, brave girl. She' actually the toughest chick I know. And, she's doing something completely awesome.

Renee is raising money through the Crohns & Colitis Foundation of America by doing a walk at the zoo in Denver this Saturday. She suffers from Crohns and is being so open about how this has affected her life. Rather than taking it lying down she's doing something, and raising money to try to find a cure. See, she rocks.

If you would head over here: http://www.active.com/donate/takestepsDN07/RCampbe389 to see what it's all about. If you can, make a donation to help her in her cause. Her goal is $1000 and I think that we could totally help her meet it!

So, Luke is back out in the field today. All the rain/snow and then nice warm sun means he's fighting weeds... the thing that sucks about when he's spraying is that he doesn't come home for lunch with us, so it's just me and the girls all day. That does sound a little spoiled doesn't it? I'm so used to him coming home for lunch that we miss him when he doesn't:)

Marie had her EEG yesterday, I posted about it on the CaringBridge site. I've got mixed feelings about it. On one hand, I feel like it was a waste of time. She had no seizures during the test, so I feel like we drug her to Denver for no reason, and the meeting we had with the neurologist basically was something I could have done in a phone call. Blegh. On the other hand, she didn't have any seizures all morning, which is a good thing. The neuro said her brain waves are "nearly normal". Yeah, and shes "almost a decent doctor". Almost. Did I mention I don't care for our Neuro? We switched as of yesterday, it's official. Don't let the door hit you on the way out :)

Our new neurologist was good when we were inpatient way back in the day, back in October when life was still relatively calm, I didn't cry daily, and I didn't understand the full scope of the impact that this would have on our life. I was so naive. Anyway, he's cool. He's efficient, seems to be pro-active, and he does outpatient about 40 miles from here, so hopefully NO MORE DENVER!

I so want to be done with Denver and Children's Hospital and all of it. I have complete confidence in our doctors here and I feel good about them taking care of Marie. That and we have hospice, and our hospice nurse is a gem. She is really one among a million and I am so glad we have her.

Other than Luke spraying not a lot going on here, I have laundry to do. It is the bane of my existence. Someday when I grow up and am rich I will hire someone to do all my laundry. Not the cleaning, because they wouldn't do it the way I want it done, but definitely the laundry.

Also, I will be monitoring Marie, who is running a low grade fever. We are praying that this is nothing, but with her it's hard not to worry about the tiniest things. Please pray that this is just her top teeth trying to break through and nothing more serious. I can tell that its affecting her a little, she's already had at least 5 seizures this morning, so hopefully its nothing and it passes quickly.

I'll keep everyone updated! Much love- Shan

Prayer request...

Good morning everyone. I wanted to ask you all for prayers. There's a little boy named Landon who is 3 months younger than Marie (making him 11 months old) and he also is fighting Leigh's Disease.

Landon is having a tough time, he has seizures like Marie and his family is struggling as we are to get them under control. Little Landon is the sweetest boy I have seen, and his family are wonderful people, and have become so important to Luke and I as we are so grateful to have them to travel down this bumpy road with us.

If you all could, please say a prayer for Landon that his meds work, and that he's more comfortable and content. Say a prayer for his parents too, as I know that this can be so draining.



Thank you all so much, for your prayers for Landon and your continued prayers for us! It is the most comforting thing to imagine when times are hard the sheer number of prayers that circle us.

Home Again

Josie's surgery went just fine! She did great, they did take her adenoids out because they were huge, and she was a little nauseous from the anesthesia but other than that, no problems.

It's snowing here today and I'm wondering when spring will show up. Marie did great with the trip to the front range, hopefully we can get some answers next week from yet another EEG. I'm getting tired of the doctors.

Luke is home today, so I'm going to clean the house and I think we'll have the family sausage and mac'n'cheese for dinner (me cook! I know, craziness).

I just wanted to let everyone know Josie's ear tube removal surgery went great and she's doing pretty good.

I'll leave you with some crab-apple blossoms, to celebrate my tree blooming:) These aren't mine, mine look a lot rougher than this all beaten by the snow and wind. I did brave it this morning in my pj's to cut some branches which are now in a vase in the dining room so that we can enjoy the flowers a little bit.... this is May.. what the heck. Anyway, enjoy:) They are so pretty! Have a great weekend~