Lois
Not all hope is gone.
December 28, 2010
December 16, 2010
It's Definitely December!
Yep, I always take the month of December off from homeschooling. We have so many other things to do that we'd go crazy otherwise. Recitals, parties, fun outings, helping friends, etc.
Last week we spent a night at Great Wolf Lodge in Williamsburg. They had a homeschool discount, and we had friends who were staying there too. It was lots of fun. We picked up Chris and his roommate for the evening and they had fun at the water park. Hannah and I were a bit wimpy--it was chilly in there! But we did go down a few waterslides.
(Hannah says, "Now THAT'S a Great wolf!")
She also asked what you call a bunch of wolves. I said, "A pack.". She said, "No. It's a gang, right?" She was being serious and I didn't understand where she came up with that. We talked about other animals: a herd of cattle, a gaggle of geese, a pod of dolphins, a pride of lions, etc. But she wouldn't let go of the "gang". Finally she said, "Mom. It's called a Wolfgang." Totally. cracked. me. up.
Here in Virginia we've already had three measurable snowfalls! And it's not even winter yet!
Hannah worked hard on the Gingerbread House. Mostly by telling me what to do. But she did do the roof, and added all the candy. And ate a good portion as well.
We picked Chris up from school last night. Tonight we decorated the tree, which was nice. We have a tall skinny tree this year. And Hannah wanted to put the angel on top, so she used a step ladder (she's a bit afraid of ladders--she doesn't trust them). We were proud of her for doing it!
There was just a little bit of time left before bed, so Hannah and Chris had an all-out dirty-sock war.
Hope your family is having fun, spending time together, preparing for holidays!
December 11, 2010
Sweet Lois, update
Today I received a Christmas card from Catherine. There is the cutest picture of a bald little girl, smiling. Her little brother is grinning with his bright eyes. So cute!
A few weeks ago I had the pleasure of spending the night at the hospital with Lois. I have to tell you how amazing this child is. She had an off-and-on fever, living in the hospital for 10 days or so, with no real end in sight. She was recovering from a strep infection which landed her in some serious danger--no immune system, so no easy recovery. When I was there, she was bouncing back. I couldn't believe how easy going she was! She was pleasant and friendly to everyone who passed by her door. She had the cutest little twist of her hand to wave to everyone. She never complained. She was gracious to all who entered, even though they were wrapped in disposable plastic gowns. masks and gloves.
This is an honorable child. She carries herself with dignity.
I had been a little worried since Lois doesn't really know me much at all. I've kept my physical distance through all these months of chemo treatments since I never wanted any of my potential germs (or Hannah's) to reach her. But she was just as pleased sitting in my lap as if we were old friends. Of course, I did bring a bribe. I didn't need it, but she did really enjoy the new Elmo book. We sang songs, read stories, talked about dogs (a favorite topic), we cuddled; she smiled! I tried to take a self-portrait with Lois (didn't come out so well, but at least you can see her sweet smile!).
It was bedtime, and she pleasantly snuggled down with her dolly and her blanket. Never made a peep. All through the night. The IV machine was beeping (VERY LOUDLY). Vitals had to be taken. Blood draw. Diaper change. Oral medication. Adjustments to the IVs. Plenty of interruptions, but Lois slept through nearly all of it. And when she was awake, she didn't fuss.
Totally amazing child.
She wore a t-shirt that said "Fight like a Girl" on the front. And on the back it said, "Win like a Woman".
A few days later she was well enough to go home.
The next week it was determined that the most recent chemo potion didn't do the trick. So now she's getting a new concoction--this time it's outpatient. The goal is to get Lois to remission, or close to it, so she can have her bone marrow transplant. Lois is still moving forward.
I am amazed at how much Lois has learned over this past year. She's signing, saying words. And she's mighty fond of medical equipment. The girl knows her way around pulse-ox monitors like nobody's business. She was working on taking my blood pressure when I was there. She's got a sense of humor, like her parents. She's got an easy smile. And an extra portion of love.
Leukemia is awful. There is nothing good about it.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Good news: There is something you can do!
Join the Bone Marrow Registry. You could save a life. It only takes a cheek swab to join the registry. Totally painless. Totally worth the 10 minutes it takes. Go here to order your swab kit!
If you're local to Richmond, you can join the registry on January 8th at our Save a Life Like Lois's bone marrow drive at Ginter Park Presbyterian Church.. You can volunteer there too, if you want! Hannah and I will lure you in with our baked goods...
If you won't, or can't, join the registry (you have to be 18-61 years of age), then please consider making a contribution to the registry.
Lois needs a bone marrow transplant. So many other children and adults need transplants. You really can make a difference. Honor this remarkable child. She's fighting hard and she could use some champions on her team.
A few weeks ago I had the pleasure of spending the night at the hospital with Lois. I have to tell you how amazing this child is. She had an off-and-on fever, living in the hospital for 10 days or so, with no real end in sight. She was recovering from a strep infection which landed her in some serious danger--no immune system, so no easy recovery. When I was there, she was bouncing back. I couldn't believe how easy going she was! She was pleasant and friendly to everyone who passed by her door. She had the cutest little twist of her hand to wave to everyone. She never complained. She was gracious to all who entered, even though they were wrapped in disposable plastic gowns. masks and gloves.
This is an honorable child. She carries herself with dignity.
I had been a little worried since Lois doesn't really know me much at all. I've kept my physical distance through all these months of chemo treatments since I never wanted any of my potential germs (or Hannah's) to reach her. But she was just as pleased sitting in my lap as if we were old friends. Of course, I did bring a bribe. I didn't need it, but she did really enjoy the new Elmo book. We sang songs, read stories, talked about dogs (a favorite topic), we cuddled; she smiled! I tried to take a self-portrait with Lois (didn't come out so well, but at least you can see her sweet smile!).
It was bedtime, and she pleasantly snuggled down with her dolly and her blanket. Never made a peep. All through the night. The IV machine was beeping (VERY LOUDLY). Vitals had to be taken. Blood draw. Diaper change. Oral medication. Adjustments to the IVs. Plenty of interruptions, but Lois slept through nearly all of it. And when she was awake, she didn't fuss.
Totally amazing child.
She wore a t-shirt that said "Fight like a Girl" on the front. And on the back it said, "Win like a Woman".
A few days later she was well enough to go home.
The next week it was determined that the most recent chemo potion didn't do the trick. So now she's getting a new concoction--this time it's outpatient. The goal is to get Lois to remission, or close to it, so she can have her bone marrow transplant. Lois is still moving forward.
I am amazed at how much Lois has learned over this past year. She's signing, saying words. And she's mighty fond of medical equipment. The girl knows her way around pulse-ox monitors like nobody's business. She was working on taking my blood pressure when I was there. She's got a sense of humor, like her parents. She's got an easy smile. And an extra portion of love.
Leukemia is awful. There is nothing good about it.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Good news: There is something you can do!
Join the Bone Marrow Registry. You could save a life. It only takes a cheek swab to join the registry. Totally painless. Totally worth the 10 minutes it takes. Go here to order your swab kit!
If you're local to Richmond, you can join the registry on January 8th at our Save a Life Like Lois's bone marrow drive at Ginter Park Presbyterian Church.. You can volunteer there too, if you want! Hannah and I will lure you in with our baked goods...
If you won't, or can't, join the registry (you have to be 18-61 years of age), then please consider making a contribution to the registry.
December 6, 2010
December 5, 2010
Back to earth
So...I'm really still here. I have approximately 8 half-written posts, none of which I expect to finish before spring...I just can't seem to to get up off my duff and move forward with them.
So, I'm moving on with light and fresh stuff!
This is our newest addition to our Christmas Cookie repertoire. Pretzels, mini-chocolate chips and a cinnamon red hot. Easy and fun!
(I'm adding instructions for all of Natalie's readers: Roll out sugar cookie dough. Cut free-hand or use a 3" biscuit cutter. Squeeze the sides together a little bit to shape the head. Add pretzel antlers. Bake for regular amount of time. While still hot on the cookie sheet, add the chocolate chips and red-hot (or M&M). Ta-dahh!)
Hannah and James went to see Yo Gabba Gabba Live a few weeks ago. They had a great time, and last week she was reminiscing about it, so she drew this picture.
Friday was Chris's last day of classes for the semester (2 weeks of exams coming up!). We helped him celebrate by going to Busch Gardens Christmas Town. It was FREEZING (at least, by Virginia standards), but we had a good time.
Yesterday Hannah performed in a concert, singing "Somewhere Over the Rainbow" with a choir. She has been taking music classes privately this fall, and she can *mostly* match pitch to familiar songs (this is a big deal to us, a family of musicians, and also an unusual skill in the Down syndrome population). Since she worked so hard, she was invited to join the choir for one song.
This video is of a rehearsal--the cameraman at the actual concert sort of forgot that there is a zoom feature on the camera, so Hannah is only about 3mm high in that video.
After a celebratory ice cream sundae, we went tree hunting! We found a nice tall skinny one, and will put it up in a couple weeks when Chris comes home.
Hope you're enjoying the start to the holiday season!
So, I'm moving on with light and fresh stuff!
This is our newest addition to our Christmas Cookie repertoire. Pretzels, mini-chocolate chips and a cinnamon red hot. Easy and fun!
Hannah and James went to see Yo Gabba Gabba Live a few weeks ago. They had a great time, and last week she was reminiscing about it, so she drew this picture.
Friday was Chris's last day of classes for the semester (2 weeks of exams coming up!). We helped him celebrate by going to Busch Gardens Christmas Town. It was FREEZING (at least, by Virginia standards), but we had a good time.
Yesterday Hannah performed in a concert, singing "Somewhere Over the Rainbow" with a choir. She has been taking music classes privately this fall, and she can *mostly* match pitch to familiar songs (this is a big deal to us, a family of musicians, and also an unusual skill in the Down syndrome population). Since she worked so hard, she was invited to join the choir for one song.
This video is of a rehearsal--the cameraman at the actual concert sort of forgot that there is a zoom feature on the camera, so Hannah is only about 3mm high in that video.
After a celebratory ice cream sundae, we went tree hunting! We found a nice tall skinny one, and will put it up in a couple weeks when Chris comes home.
Hope you're enjoying the start to the holiday season!
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