As most of you know by now, we are home again. We got home late Wednesday evening after they removed the pik line and sent us home. Marie slept most of the way, and we're currently just getting back to being in our little routines.
Tentatively, we have an appointment scheduled to get test results on December 6, though that may change. We've started doing the vitamines, frusterating and not going terribly well at this time. We have an appt on Nov 6 to set up physical therapy.
If you'd like to read up on Mitochondrial and Leigh's disease you can check out www.umdf.org. I warn you, this website is a bit of a downer.
That all said, we're happy to be home, and looking forward to Halloween on Wednesday. Luke and I will be escorting a ladybug and a dragon around to the usual places.
Sunday, October 28, 2007
Wednesday, October 24, 2007
Newest news....
Sadly, we no longer have use of a laptop, so updating hasn't been as easy. We can use the library here at the hospital, so I'm doing that now to post the latest news.
Saturday afternoon after 5 unsuccessful attempts to draw blood from Marie for blood tests we were discharged. We went to Greeley to Luke's Mom's house for Saturday afternoon and all of Sunday. Luke's sister Stacey took Josie with her to her house on Sunday afternoon and Josie is still there. She's having fun with her Aunt, Uncle Glendon, and cousin Gavin. Right now it really is the best place for her to be.
On Monday morning we came back down to Children's and met with the Metabolic Dr's. At this stage of the game more testing is needed for a definite diagnosis, but we do have a bit of a game plan. When we get home Marie will begin some physical therapy to keep her from falling any further behind physically (she'll need extra help learning to sit and walk as her body is weaker than the norm). We also will need to keep her out of situations where she's around a lot of young kids. This means no more coming with Josie and I to ballet, we need to sit up front in church not in back with the other families with young kids, no more using the cry room where lots of kids have been etc. This is because Marie really can't afford to get sick. So much of her energy goes to just functioning normally, if she gets sick it could really set her back. So, from this point on, if anyone has the sniffles or otherwise, though we'd love to see you we really have to ask that you only visit our home if you're well.
Monday evening we were re-admitted to the hospital, and yesterday (Tuesday) the put a pic-line in (line running from Marie's inner elbow to her heart) to do the "free flowing" blood draws required for most of her testing. She did well with the anesthesia and came out like a champ. We got some of the blood draws done last night, and another done this morning. Right now they can only do one more blood test today before they've drawn the maximum amount of blood Marie can give in a day (15cc is her max). So, for the additional testing needed we'll have to wait until tomorrow morning. This means another night in the hospital for us, and while it's the best place to be, every one's been as nice as possible, and given us just about everything we need I'm starting to hate it here. Luke and I are really missing Jo and would like to get home.
Also, yesterday was Luke's birthday (happy 27th!) and we'd really like to celebrate his birthday properly. Being without our Josie is definitely a trying thing. But, she's doing wonderful with Stacey and Glendon so I have to take comfort in that.
Marie's good, I think she gets bored easily here. They have toys available and so we've been using some of those, but I honestly think she misses her sister and the comfort of rolling around on the floor and just doing "our thing".
Right now that's all the news I have, hopefully we're home tomorrow (however, the way things have gone I'm hesitant to place my hopes on that). Thanks to all of you for your continued thoughts and prayers, we'll keep you posted. Much love- Luke & Shan
Saturday afternoon after 5 unsuccessful attempts to draw blood from Marie for blood tests we were discharged. We went to Greeley to Luke's Mom's house for Saturday afternoon and all of Sunday. Luke's sister Stacey took Josie with her to her house on Sunday afternoon and Josie is still there. She's having fun with her Aunt, Uncle Glendon, and cousin Gavin. Right now it really is the best place for her to be.
On Monday morning we came back down to Children's and met with the Metabolic Dr's. At this stage of the game more testing is needed for a definite diagnosis, but we do have a bit of a game plan. When we get home Marie will begin some physical therapy to keep her from falling any further behind physically (she'll need extra help learning to sit and walk as her body is weaker than the norm). We also will need to keep her out of situations where she's around a lot of young kids. This means no more coming with Josie and I to ballet, we need to sit up front in church not in back with the other families with young kids, no more using the cry room where lots of kids have been etc. This is because Marie really can't afford to get sick. So much of her energy goes to just functioning normally, if she gets sick it could really set her back. So, from this point on, if anyone has the sniffles or otherwise, though we'd love to see you we really have to ask that you only visit our home if you're well.
Monday evening we were re-admitted to the hospital, and yesterday (Tuesday) the put a pic-line in (line running from Marie's inner elbow to her heart) to do the "free flowing" blood draws required for most of her testing. She did well with the anesthesia and came out like a champ. We got some of the blood draws done last night, and another done this morning. Right now they can only do one more blood test today before they've drawn the maximum amount of blood Marie can give in a day (15cc is her max). So, for the additional testing needed we'll have to wait until tomorrow morning. This means another night in the hospital for us, and while it's the best place to be, every one's been as nice as possible, and given us just about everything we need I'm starting to hate it here. Luke and I are really missing Jo and would like to get home.
Also, yesterday was Luke's birthday (happy 27th!) and we'd really like to celebrate his birthday properly. Being without our Josie is definitely a trying thing. But, she's doing wonderful with Stacey and Glendon so I have to take comfort in that.
Marie's good, I think she gets bored easily here. They have toys available and so we've been using some of those, but I honestly think she misses her sister and the comfort of rolling around on the floor and just doing "our thing".
Right now that's all the news I have, hopefully we're home tomorrow (however, the way things have gone I'm hesitant to place my hopes on that). Thanks to all of you for your continued thoughts and prayers, we'll keep you posted. Much love- Luke & Shan
Friday, October 19, 2007
Todays updates
Last night about 1130 Marie had a spinal tap. They collected spinal fluid to evaluate for infections etc (they are still in the process of ruling out a lot of things). That said, they believe Marie has 1 of a group of about 200 metabolic diseases. We have been told that her MRI and symptoms indicated that her brain (specifically the part that controls movement) is not getting enough energy to operate properly.
They say this is a problem with her mitochondria in her cells. Glucose enters the blood stream, is converted to usable energy by a series of steps and is used by the various parts of the body. Marie's problem is that one of those steps along the journey is not functioning properly. So, they are doing some very intensive blood work and there will be a muscle biopsy to determine where along that process the problem lies. If it's at the beginning of the process that is more treatable, towards the end of the process, much less treatable.
Right now we are doing a series of 3 blood tests, and there will be another large draw that must be sent to the Mayo Clinic on Monday.
At this time I'm thinking we'll probably be here that long. My Mom and sister Marika are coming today, and Judy is bringing Josie to us from Greeley (I didn't see her at all yesterday and that really sucked). My cousin Renee came and gave us some much needed laughter yesterday, she made the afternoon fly by and it was so nice to hang out with her.
At this time, if we could, I'd like to ask all of you to focus your prayers on us getting a diagnosis of one of the more treatable diseases.
Sadly, mitochondrial diseases cannot be cured, but there is treatment for some. At this point we are looking at something that Marie will have for the rest of her life, and they've told us there will be certain developmental delays, though they can't say what or how severe at this time. Lets all just pray that it's treatable. Much love- Shan
They say this is a problem with her mitochondria in her cells. Glucose enters the blood stream, is converted to usable energy by a series of steps and is used by the various parts of the body. Marie's problem is that one of those steps along the journey is not functioning properly. So, they are doing some very intensive blood work and there will be a muscle biopsy to determine where along that process the problem lies. If it's at the beginning of the process that is more treatable, towards the end of the process, much less treatable.
Right now we are doing a series of 3 blood tests, and there will be another large draw that must be sent to the Mayo Clinic on Monday.
At this time I'm thinking we'll probably be here that long. My Mom and sister Marika are coming today, and Judy is bringing Josie to us from Greeley (I didn't see her at all yesterday and that really sucked). My cousin Renee came and gave us some much needed laughter yesterday, she made the afternoon fly by and it was so nice to hang out with her.
At this time, if we could, I'd like to ask all of you to focus your prayers on us getting a diagnosis of one of the more treatable diseases.
Sadly, mitochondrial diseases cannot be cured, but there is treatment for some. At this point we are looking at something that Marie will have for the rest of her life, and they've told us there will be certain developmental delays, though they can't say what or how severe at this time. Lets all just pray that it's treatable. Much love- Shan
Thursday, October 18, 2007
We talked to the Neurologists.
We've just finished speaking with the neurologists. Right now cancer is completely ruled out. Epilepsy is also a definite no.
The neurologists are leaning toward the tremors being the result of a metabolic problem. They believe that is may be that the mitochondria in her cells are not functioning as they should. The neurologist we spoke with has examined Marie's medical history and pointed out that developmentally Marie has been flatlined for the last month. She's still sitting supported but has been since the end of August and isn't progressing with it, that combined with her poor tone (Marie tends to slump her head and slouch quite a bit) along with the eye tremors and overall tremors lead them to believe that her cells may not be "feeding" her body as the should.
From here they will do a spinal tap, and they're going to draw quite a bit more blood. There will be some very intense blood work done, and the results for this will take up to 2 weeks to come in. They may also do some genetic testing, because if it is that, the family needs to be aware (this seeemed to be a minor concern at this time, so no-one worry too much on that front).
That means, that the latest we'll probably be at Childrens for now is Saturday. They'll send us home as soon as the testing is done and then we'll wait for the results. The spinal tap will require her to go under anethesia again, so that may not take place until tommorow, we'll see. Until later.... much love.
The neurologists are leaning toward the tremors being the result of a metabolic problem. They believe that is may be that the mitochondria in her cells are not functioning as they should. The neurologist we spoke with has examined Marie's medical history and pointed out that developmentally Marie has been flatlined for the last month. She's still sitting supported but has been since the end of August and isn't progressing with it, that combined with her poor tone (Marie tends to slump her head and slouch quite a bit) along with the eye tremors and overall tremors lead them to believe that her cells may not be "feeding" her body as the should.
From here they will do a spinal tap, and they're going to draw quite a bit more blood. There will be some very intense blood work done, and the results for this will take up to 2 weeks to come in. They may also do some genetic testing, because if it is that, the family needs to be aware (this seeemed to be a minor concern at this time, so no-one worry too much on that front).
That means, that the latest we'll probably be at Childrens for now is Saturday. They'll send us home as soon as the testing is done and then we'll wait for the results. The spinal tap will require her to go under anethesia again, so that may not take place until tommorow, we'll see. Until later.... much love.
UPDATES
As you most of you know, a lot is going on right now. For some time Marie has suffered from some tremors and we are now at Children's Hospital in Denver to determine the cause. On Tuesday we were admitted, she had x-rays, and then yesterday some more testing. At first the suspected a tumor in her chest (via Xray films) and her tremors were "textbook" for a particular kind of cancer, neuro-blastoma (be aware my spelling sucks, so please bear with me). The cat-scan last night did not find a tumor in her chest, so this is good news. However, we still don't know what's causing her tremors and the MRI showed "something unusual" so we will now be pursuing that. Marie did great with the tests, the put her under but when waking up they let her nurse and she smiled with us not long afterwards.
She's being such a trooper, really just rolling with the flow, playing and sleeping like a normal girl. It's amazing how resilient babies actually are.
I've just found out the will be moving us off the cancer floor later today, so we will be on a different floor in the hospital by this evening. The neurologists will be performing a lot more tests, and so far no one's said anything about discharging us so I'm guessing we'll be here a few more days.
In summation: Marie is good, she gets to have some baby food today (she hasn't the last two days). She's napping well and playing and generally doing pretty well with everything.
Luke and I are a little tired, a little overwhelmed, but we're coping. We're lucky to have each other.
Josie is with her Grandma Judy in Greeley and Judy's been bringing her down to be with us during the day. Josie is doing good, I think she's a little confused by all this and she's missing mom and dad at night. She's a tough cookie though. She wants to see her sister better and understands that this is necessary. To be honest, I'm worried more about Jo than Marie right now just because shes not with me all the time. Rest assured that the separation is harder on her Mama than her. Grandma Judy's been giving her chocolate, watching movies, and taking wonderful care of her. I just am not used to not being with Jo all the time.
I'll keep posting updates here rather than emailing so check back often. Love to you all and thank you so much for your prayers. We are blessed to have such wonderful friends and family. We also have a laptop here, so if you want you can always get me by email.
She's being such a trooper, really just rolling with the flow, playing and sleeping like a normal girl. It's amazing how resilient babies actually are.
I've just found out the will be moving us off the cancer floor later today, so we will be on a different floor in the hospital by this evening. The neurologists will be performing a lot more tests, and so far no one's said anything about discharging us so I'm guessing we'll be here a few more days.
In summation: Marie is good, she gets to have some baby food today (she hasn't the last two days). She's napping well and playing and generally doing pretty well with everything.
Luke and I are a little tired, a little overwhelmed, but we're coping. We're lucky to have each other.
Josie is with her Grandma Judy in Greeley and Judy's been bringing her down to be with us during the day. Josie is doing good, I think she's a little confused by all this and she's missing mom and dad at night. She's a tough cookie though. She wants to see her sister better and understands that this is necessary. To be honest, I'm worried more about Jo than Marie right now just because shes not with me all the time. Rest assured that the separation is harder on her Mama than her. Grandma Judy's been giving her chocolate, watching movies, and taking wonderful care of her. I just am not used to not being with Jo all the time.
I'll keep posting updates here rather than emailing so check back often. Love to you all and thank you so much for your prayers. We are blessed to have such wonderful friends and family. We also have a laptop here, so if you want you can always get me by email.
Friday, September 28, 2007
Things Josie said that made me smile this week...
"Lets stop and think about this" I told her it was bath time, apparently she was prepared to negotiate.
"Its a long long drive to my Grandma's house" heard repeatedly every time we get in the car, despite the fact that we have not been nor are we planning to go to Grandma's house.
"Marie smells, she smells a lot".
"Why do you nurse Marie ALL the time?"
And last night, totally made my day: "Thanks Mom for the food you made us". Schlachter sausage & mac-n-cheese makes everybody happy.
"Its a long long drive to my Grandma's house" heard repeatedly every time we get in the car, despite the fact that we have not been nor are we planning to go to Grandma's house.
"Marie smells, she smells a lot".
"Why do you nurse Marie ALL the time?"
And last night, totally made my day: "Thanks Mom for the food you made us". Schlachter sausage & mac-n-cheese makes everybody happy.
Friday, September 21, 2007
Marie
This is a pretty recent video, I took this Wednesday morning. She's really getting big, she loves being on her tummy. I think we'll have a crawler soon, she's almost better at rolling/scooting on the floor than she is sitting!
Josie the photographer....
.jpg)
Josie had the camera the other day and had a ton of fun taking some "shots". It's sort of fun to see the world from her viewpoint..jpg)
Ready for her closeup.....jpg)
Silly face...
Bigger and bigger....
Our girls are getting bigger and bigger all the time. It's amazing how fast the time goes! Some fun phrases heard this week from Josie: I need a popcicle to warm me up. Upon seeing a picture of a skeleton "That person has no skin, I have skin. I have lots and lots of healthy skin". "My tummy tells me that it's time for lunch".
.jpg)
She's starting to get the hang of sitting up, still not there but getting closer!
.jpg)
This is like one of those hidden image pictures, can you find the baby?
.jpg)
She's posing... still cute though.
.jpg)
Marie is getting better at scooting in her walker all the time. She get's very proud of herself!
.jpg)
"Look Mom, I'm doing it!!!!"
.jpg)
She's starting to get the hang of sitting up, still not there but getting closer!.jpg)
This is like one of those hidden image pictures, can you find the baby?.jpg)
She's posing... still cute though..jpg)
Marie is getting better at scooting in her walker all the time. She get's very proud of herself!.jpg)
"Look Mom, I'm doing it!!!!"
.jpg)
.jpg)
Sunday, September 02, 2007
More pics
.jpg)
Josie on the merry-go-round at Chase County Fair. She had a blast, lots of rides and way to much cotton candy. She's into this goofy smile phase too, hence that oddball smile in the pic :).jpg)
Playing together....jpg)
Josie hamming it up and modeling a bracelet my sister Marika made for her..jpg)
Marie sporting her bracelet... and her CSU t-shirt. Sadly, they let us down yesterday loosing to the dirty hippies down in Boulder....jpg)
Hanging out (one of the few photos where I actually caught Marie smiling).
August pics....
.jpg)
Saturday morning cartoons....jpg)
Marie's first taste of "real" food. She has been eating cereal (rice or oatmeal) for awhile, so we stepped it up and added some baby food. She's doing great. First she tried squash, since then we've done sweet potatos, peaches, green beans, carrots, pears, and applesauce..jpg)
A diva....jpg)
One day, just for fun, Josie and I made a princess cake. It was a chocolate chip cake with purple frosting, pink and purple sprinkles and chocolate chips. It was so sweet it made you sick, but, it looked good and we had fun making it!.jpg)
Josie "reads" to Marie a lot. This is a pretty common occurance, although sometimes Marie grabs the pages and Josie gets mad.
Friday, August 24, 2007
Josie "ism's" and more....
I haven't written to update on the girls stats much, so I thought I'd steal the time to do that today. This is partly so that I have things written down and when I look back I can remember. Summer is winding up for us here, Luke finished cutting millet yesterday so they'll start picking that up in a few days. I can't believe the summer is nearly over, it really flew by!
Josie is amazing. She really blows me away. Her grasp of things is continually evolving, and she understands things above what I think that she does. She also really thinks about things and it makes for some pretty funny statements from her at times. I have been told recently:
"Don't yell at me or you'll get in trouble with my Daddy." Apparently he is the White Knight. I was not aware of this, but I guess it is so. And here I thought he was the stricter disciplinarian out of the two of us....
"You try being the Josie, it's not easy Mommy!" Told to me when she was in trouble for not listening.
"I'm too tired to take a nap."
"We went to the doctor, and our baby just popped out." *sigh* if only it were actually so easy...
More and more often I also hear the phrase "When I was little..." She is getting so big! She also will watch a toy commercial and say "I wish I could have that" which is new. Before she didn't seem to notice, now she knows that we can go and get things that she sees on TV. Hooray.
Marie is doing great, eating cereal like a champ. She actually was going through 2 4oz feedings a day and nursing before and after so about 2 weeks ago (she was 5.5 months) I started including a little baby food with the cereal just to give her a bit more. She is so hungry all the time I'm having a hard time keeping up! So far, she's done squash, sweet potatoes, green beans, and apple sauce. She hasn't had any of it straight, I've been mixing it with cereal, but so far I haven't seen her having any trouble. She also doesn't seem quite as ravenous now, which is a good thing.
Josie's stats:
Fave toy- Bunny (still)
Fave color- purple (still)
Fave TV show- Dragon Tails
Fave Food- ice cream or German pancake
Fave Song- "Mother" by Danzig (totally blows me away)
Fave Book- Fancy Nancy
Marie's Stats:
Fave toy- whatever is soft and nearby
Fave color- green (because Josie asks me all the time what her favorite color is, so I keep telling her that's what it is)
Fave TV show- n/a
Food- so far she's liked the applesauce best
Fave Song- anything playing. She likes to be danced around with though.
Fave Book- whatever Josie is reading, so, it's probably Fancy Nancy.
Josie is amazing. She really blows me away. Her grasp of things is continually evolving, and she understands things above what I think that she does. She also really thinks about things and it makes for some pretty funny statements from her at times. I have been told recently:
"Don't yell at me or you'll get in trouble with my Daddy." Apparently he is the White Knight. I was not aware of this, but I guess it is so. And here I thought he was the stricter disciplinarian out of the two of us....
"You try being the Josie, it's not easy Mommy!" Told to me when she was in trouble for not listening.
"I'm too tired to take a nap."
"We went to the doctor, and our baby just popped out." *sigh* if only it were actually so easy...
More and more often I also hear the phrase "When I was little..." She is getting so big! She also will watch a toy commercial and say "I wish I could have that" which is new. Before she didn't seem to notice, now she knows that we can go and get things that she sees on TV. Hooray.
Marie is doing great, eating cereal like a champ. She actually was going through 2 4oz feedings a day and nursing before and after so about 2 weeks ago (she was 5.5 months) I started including a little baby food with the cereal just to give her a bit more. She is so hungry all the time I'm having a hard time keeping up! So far, she's done squash, sweet potatoes, green beans, and apple sauce. She hasn't had any of it straight, I've been mixing it with cereal, but so far I haven't seen her having any trouble. She also doesn't seem quite as ravenous now, which is a good thing.
Josie's stats:
Fave toy- Bunny (still)
Fave color- purple (still)
Fave TV show- Dragon Tails
Fave Food- ice cream or German pancake
Fave Song- "Mother" by Danzig (totally blows me away)
Fave Book- Fancy Nancy
Marie's Stats:
Fave toy- whatever is soft and nearby
Fave color- green (because Josie asks me all the time what her favorite color is, so I keep telling her that's what it is)
Fave TV show- n/a
Food- so far she's liked the applesauce best
Fave Song- anything playing. She likes to be danced around with though.
Fave Book- whatever Josie is reading, so, it's probably Fancy Nancy.
Monday, August 06, 2007
Swimming lessons
Josie did swim lessons this summer for the first time. They ran for three weeks, and she loved every day of it! I was sort of hoping that she would make friends with a few little girls through the process, but once again it was Josie and a bunch of boys. Out of the 5 kids in her class she was the only girl! She holds her own though:) .jpg)
.jpg)
.jpg)
.jpg)
.jpg)
.jpg)
.jpg)
.jpg)
.jpg)
Recent photos
.jpg)
Luke loves this picture.... Marie likes shiney things..jpg)
Marie, Luke, & Josie at wedding our good friends wedding. Josie was the flower girl and did an awsome job, she had a blast. Luke and I were in the bridal party (hence the John Deere tee, it was a themed wedding)..jpg)
Marie passed out in her crib and pulled the blanket over her face to sleep. It cracked me up, because, Josie used to do the exact same thing..jpg)
Josie and Max, the ringbearer. They were a lot of fun together..jpg)
Marie enjoying an ice cube. She's a huge fan of anything water, and will drink water from Jo's sippy or Luke's cup. Her favorite though is an ice cube!
Tuesday, July 31, 2007
Harvest 2007 cont....
Luke driving the combine...
Deer crossing the road by Webber's.
Storm rolling in from the west on Webber's.
Harvest 2007
As most of you know, this year was a blessing, wheat was much better than recent years. Josie loved riding in the combine, and Marie, well, she screamed a lot. Mostly because she hates her car seat. Luckily that seems to be passing. Here are some photos, though I can't take credit for them all. The man we hired to drive grain cart took some really beautiful shots so I thought I'd share them with all of you!
.jpg)
Beautiful Josie....
.jpg)
Daddy and Marie...
Happy girl on the grass at Steve's one night after I brought dinner out to the guys.
.jpg)
Old sprinkler just north of Dutton's.
The old red truck...
.jpg)
Beautiful Josie.....jpg)
Daddy and Marie...Happy girl on the grass at Steve's one night after I brought dinner out to the guys.
.jpg)
Old sprinkler just north of Dutton's.
The old red truck...
Updates, because I'm a slacker.... July pics of the girls
Wow, can you believe the summer is half over already? We're finished with harvest, and both girls are growing like crazy. Josie is awsome, really learning her letters right now, and into writing things down. Marie is teething, found her feet, and changing daily. They're both a ton of fun!
Napping in style, GO RAMS!
.jpg)
Marie is now on rice cereal, and finally starting to "chub" out a bit. She definately loves to eat, though that probably runs in the family!.jpg)
.jpg)
.jpg)
Watching movies in Mom & Dad's room.
.jpg)
Napping in style, GO RAMS!
.jpg)
Marie is now on rice cereal, and finally starting to "chub" out a bit. She definately loves to eat, though that probably runs in the family!
.jpg)
.jpg)
.jpg)
Watching movies in Mom & Dad's room.
.jpg)
Thursday, July 05, 2007
Rain, and then some more rain.
.jpg)
The angle highway....jpg)
7 mile road, just north west of Linhart's. This field sits about 4 feet lower than the road does, to give you an idea of how deep that water is..jpg)
I'm not completely sure where this is....jpg)
Dutton ground, Luke had a terrible time with this wash when we harvested off that field a few days ago. There was about a foot of debrie laying on top of the wheat on the edges of where the "crick" was..jpg)
Railroad tracks by Amherst, washed out underneath..jpg)
Smith ground, up by Amherst.
Subscribe to:
Posts (Atom)