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

This week...

Just to update you all on where we've been the last week. Marie finally had a good day yesterday. She has vomited at least once a day for the last 7 days, but yesterday she managed to keep both lunch and dinner down. She's still nursing primarily, we try to get what baby food we can down her but she's lost a lot of interest.

We had physical therapy this morning. The therapist is concerned about her legs, she wants us to ask about splints at our Dec 6 appointment. Marie's feet are turning in more severely than before, and she's worried about stress on the joints.

Marie is still happy, but there seem to be days now where she just doesn't feel well. Her slouchy-ness is becoming more pronounced, and she really is much like a newborn a lot now. When she is tired she looses head control, fists her hands like a newborn, and doesn't move her arms and legs much. She wants to be held almost all the time, and Luke and I give into that a lot. We also have sort of stopped using the high chair, she just doesn't sit well enough to use it. Of course the vomiting is discouraging because it's uncomfortable for her, and also because we're really concerned that she hasn't gained wait in nearly 3 months now. We're going to talk to our family Dr about some sort of food supplement, or if anything can be done to help her to gain.

She's sleeping in our bed every night now too. She nurses almost non-stop throughout the night, and the upside to that is that she's able to get a pretty good meal in. We're also wondering if maybe she has "night terrors" since she wakes screaming a lot, especially if she's not touching Luke or I.

There are some good things though. When she's well rested she's doing well with standing. She also can pull to sitting from a semi-reclined position and she is starting to use her arms to catch herself when she tilts.

Both Josie and Marie are finally over their colds, and Josie's ear infection has cleared up (though we still have the Ear/Nose & Throat appointment on Friday).

Josie had ballet yesterday and is really becoming quite the dancer. She knows so many moves now, and it's a ton of fun to watch her. She's also become a huge helper with Marie (helping her to stay sitting on the bed, helping her hold toys etc).

I'm taking a lot of pictures, though most are still on the camera... I need to get them posted soon.

That's really about all for us here, still doing day to day. We're looking forward to the appointment on the 6th but dreading it at the same time. Our days tend to be sort of a roller coaster, and I'm sure we're not always the best company, but we're still just trying to focus on the good things that happen (which is not to say that we don't get completely discouraged and loose it sometimes, we're just lucky enough that we don't do it at the same time).

Hopefully everyone had a really nice Thanksgiving, we did. Until later, xoxo.

Occupational Therapy and more

Last time I wrote we were meeting with the occupational therapist. We had that meeting, and he showed me some more exercises to work on with Marie. She seems to have a problem with her reflex to catch herself when she starts to tilt. She'll lean, but she doesn't reach out her arm to brace and catch herself. He was concerned about that simply because she could really hurt herself toppling from sitting to the hardwood floor. So, not only are we working on teaching her that reflex (extend arm, open hand, brace) but we have to be really careful with her. He also observed that she tends to leave her hands fisted up like a newborn would, so any exercise that forces her to open her hand fully is good. Plus side, when her hands are open, the work just fine. She can pick up all the tiny things and insert them into her mouth, so I'm still on tiny toy patrol (not that I would have stopped, but man, you'd think eventually I'd have collected them all. We seem to have an endless supply of things small enough to fit through a paper towel roll!)

Head control was discussed, as was posture, because sadly these are two things Marie is really struggling with. So, we'll continue to work on it. The Oc. Ther. says he'll probably just work with our Phys. Ther. rather than coming to see us weekly. I also found out we can get a lot of this through BOCES so I'm going to be calling on that. Our insurance only covers up to so much physical therapy and we'll be needing more than that so it was nice to learn that we can do that (thanks tons Jess for checking into it for us).

Marie, though her body doesn't work right, is still smiling all the time, and a happy happy girl. This is a huge comfort, as the physical things we can easily overcome or make modifications to get by. I'm so glad she's happy, because I am willing to carry her wherever she needs to go.

Josie's ear is getting better (I haven't seen any signs of infection for a few days). We will have to go up to Ft Collins to the Ear/Nose/Throat Doc though on Nov. 30. She'll have a hearing test, and then we'll look at why she continues to have infections. Britt, we should do lunch that day. I'll call you :)

Josie also was assigned a part in the church Christmas pageant this year. She will be Angel Number Three. The program is on December 16, so if you can, it will probably be a kick to see her perform!

Marie has been doing slightly better with vomiting. She made it 4 days without being sick, but got sick last night. I've been noting what she's been eating when, and the times, but am beginning to see a correlation between the severity of her tremors and her vomiting. It seems the worse she is shaking the more prone she is to getting sick. I've noted this and will be bringing it up on the 6th at our appointment.

All in all we're doing okay. We actually had a few days where all felt normal this week. One day Josie and I walked to the park with Marie in the sling, and yesterday we surprised Luke and Papa Steve with Subway while they were working. I just treasure those little moments, and try to create as many of them as we can. As my cousin said, we too have developed an appreciation for how terribly fragile life is. How grateful we have become for every day. We truly have been blessed, not only with Marie and Josie but with the amazing support of everyone in our circle of family and friends. I've been told how strong we are, but it is only because of the support we have that we are able to cope so well. Thanks to each and every one of you. Everyone have a wonderful Thanksgiving, much love- Shan