Eck, at the hospital, can't get onto Facebook....yes I'm addicted, first step is admitting there is a problem right?? So, I can browse the net, look over blogs and now I just feel like crying. Not because I can't get on Facebook, not that addicted, or maybe I'm just not ready to admit I'm in that deep........
Anyway, for reasons I don't want to share publicly, I just feel like crying. Feel like something extremely special was taken from me and now I can never have it again. Trying to hold it together in front of all these nurses and care partners coming in and out. Talked to Kurt, nothing helps, I just want to cry. No one can say anything to make it better, I just have to suck it up and realize I can't do anything about it and move on. Just feel like part of my heart is missing, like it's been cut out. Eck....
Life sucks sometimes, doesn't it? :(
Thursday, March 19, 2009
Tuesday, March 17, 2009
Lukas' new quilt
YAY!!! FINALLY got some fabric so I could start using my Christmas present... a FABULOUS new sewing machine.
A friend of mine in KS taught me how to quilt and I loved doing it, but never had a good sewing machine, so I gave up. Low and behold, my husband knew I loved to quilt and got me the coolest sewing machine for Christmas, the only thing he forgot was fabric so I could make something!
Well, 2 1/2 months later and we finally make it to JoAnns. I got the fabric Saturday and cut, pieced and sewed the strips together Sunday after dinner. I sewed all the strips together and decided to make a border today and got the top all finished, added the lining and the backing and pinned it all up. Now all I need is a smaller quilting frame and I'll get it all quilted and post more pics.
A friend of mine in KS taught me how to quilt and I loved doing it, but never had a good sewing machine, so I gave up. Low and behold, my husband knew I loved to quilt and got me the coolest sewing machine for Christmas, the only thing he forgot was fabric so I could make something!
Well, 2 1/2 months later and we finally make it to JoAnns. I got the fabric Saturday and cut, pieced and sewed the strips together Sunday after dinner. I sewed all the strips together and decided to make a border today and got the top all finished, added the lining and the backing and pinned it all up. Now all I need is a smaller quilting frame and I'll get it all quilted and post more pics.
Wednesday, February 25, 2009
Vacation!!!
We are leaving Friday morning for Kansas City!!! I'm so excited, Kurt is taking me to a nice hotel and we'll spend the weekend visiting with some of our amazing friends we haven't seen in a few years!!!! I'm so excited!!! Can't you tell? I've overused the exclamation points!!!!
Will come back with lots of pictures :)
Will come back with lots of pictures :)
Thursday, February 12, 2009
Out with the old, in with the new
So I changed my background and the music. The boys are into dancing now... especially Theron. If you haven't seen him "shake his booty" you are missing out!!! It's hilarious, all I can say though is he sure didn't get his dancing abilities from me! White boy can dance!!!
So, anyway, I put some fun music on because Lukas likes to "heer a muusik on compooter" and Theron likes to shake his booty to it, so everyone wins :)
Life is still going fine for us, haven't decided on next round of medicines for Lukas, or if we'll do them at all. Clinic is next Thrusday, we'll go over it then. He's caught up cognatively, developementally, physically though and he keeps learning and showing how amazing he is every day.
Theron's learning to write his letters right now and is really good at drawing faces. We haven't shown him how to, he just started on his own, and of course he's a little sports player. He loves baseball, soccer ball, basketball, football, and likes to watch hockey now too.
Kurt's still working hard and loves his job and I'm trying to get my house all cleaned out. We've collected so much STUFF this last year that it's very much time to clean out.
I'll post some new pics later! Hope everyone else is doing fine.
So, anyway, I put some fun music on because Lukas likes to "heer a muusik on compooter" and Theron likes to shake his booty to it, so everyone wins :)
Life is still going fine for us, haven't decided on next round of medicines for Lukas, or if we'll do them at all. Clinic is next Thrusday, we'll go over it then. He's caught up cognatively, developementally, physically though and he keeps learning and showing how amazing he is every day.
Theron's learning to write his letters right now and is really good at drawing faces. We haven't shown him how to, he just started on his own, and of course he's a little sports player. He loves baseball, soccer ball, basketball, football, and likes to watch hockey now too.
Kurt's still working hard and loves his job and I'm trying to get my house all cleaned out. We've collected so much STUFF this last year that it's very much time to clean out.
I'll post some new pics later! Hope everyone else is doing fine.
Tuesday, January 20, 2009
Random babblings...
So I haven't had a real post in some time. I just get busy and mean to, but never get around to it.
Not much going on other than the normal and a couple of minor surgeries for Lukas. Our weeks consist of vision therapy on Monday's and then we usually have one doctors appointment or another at least once a month. Other than that, we are trying really hard to get back in the normal swing of things. Theron enjoys superheroes, any of them, but especially Spiderman and Ironman. Lukas likes playing superheroes with Theron and is really good at saying "piderman" and "i-urnman". They dote on each other too, Lukas wants to tell bubba "wake up" every morning and Theron is really good at holding Lukas hand or helping him navigate through any obstacles he might be walking towards. They both love the park, once it gets a little warmer we'll be at the park pretty often.
Theron started Sunbeams this year! I can't believe he's old enough to be a Sunbeam, but he loves it. When I got him from class Sunday, he had a CD the primary presidency had given all the kids with the songs for this year and told me "mommy, we learned songs about Jesus. I like my class"
And Lukas loves Nursery. As soon as we are out of the chapel from Sacrament, Lukas knows his way to his classroom! A few weeks ago, Kurt was walking him in there and as soon as Lukas was in the door, he shut it in Kurt's face without even telling him bye!
Kurt really loves his job and he's sure staying busy. He's up by 5am at the latest every morning and works until at least 5 or 6pm every night. His company has been so good to us this last year with everything we've dealt with. They want to help with our foundation too, which is huge for us to know they care that much.
Now we're at the point where we're just working to get a handle on Lukas vision. This month and February we are just working through all of the Neuro and Opthamological docs to see where to go from here. We finished the first, and least amount of side effects, drug to help his eyes stop dancing (opsoclonus-neurological disorder caused by cancer) and now we only have 2 more drugs to try, both with significant side effects, more hospital stays and possibly more neurological side effects. All on top of trying to resume a normal kind of life.
We're doing it though and we're happy. We're in a good place, we are moving forward, eyes on the prize!
Not much going on other than the normal and a couple of minor surgeries for Lukas. Our weeks consist of vision therapy on Monday's and then we usually have one doctors appointment or another at least once a month. Other than that, we are trying really hard to get back in the normal swing of things. Theron enjoys superheroes, any of them, but especially Spiderman and Ironman. Lukas likes playing superheroes with Theron and is really good at saying "piderman" and "i-urnman". They dote on each other too, Lukas wants to tell bubba "wake up" every morning and Theron is really good at holding Lukas hand or helping him navigate through any obstacles he might be walking towards. They both love the park, once it gets a little warmer we'll be at the park pretty often.
Theron started Sunbeams this year! I can't believe he's old enough to be a Sunbeam, but he loves it. When I got him from class Sunday, he had a CD the primary presidency had given all the kids with the songs for this year and told me "mommy, we learned songs about Jesus. I like my class"
And Lukas loves Nursery. As soon as we are out of the chapel from Sacrament, Lukas knows his way to his classroom! A few weeks ago, Kurt was walking him in there and as soon as Lukas was in the door, he shut it in Kurt's face without even telling him bye!
Kurt really loves his job and he's sure staying busy. He's up by 5am at the latest every morning and works until at least 5 or 6pm every night. His company has been so good to us this last year with everything we've dealt with. They want to help with our foundation too, which is huge for us to know they care that much.
Now we're at the point where we're just working to get a handle on Lukas vision. This month and February we are just working through all of the Neuro and Opthamological docs to see where to go from here. We finished the first, and least amount of side effects, drug to help his eyes stop dancing (opsoclonus-neurological disorder caused by cancer) and now we only have 2 more drugs to try, both with significant side effects, more hospital stays and possibly more neurological side effects. All on top of trying to resume a normal kind of life.
We're doing it though and we're happy. We're in a good place, we are moving forward, eyes on the prize!
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