My platelets are now at 114! My PA said that I look "normal" on paper. I'm still struggling with a few minorish physical issues associated with GVHD, but these should level off with time.
We enjoyed a great family night with some good friends as the Harlem Globetrotters visited Waco. No, Cade, they will not play Baylor, but that wouldn't that be fun? We dolled up the kiddos in impromptu t-shirts, headbands and for sweet Avi, a red, white and blue hairbow and headed out the door. Avi sat in Daddy's lap and jammed to the music. That girl has some moves. It took awhile for Zane and Cade to realize that it was okay to laugh at people falling down, rebelling and (ahem) pulling down other people's shorts. When they saw us laughing, then they got in on the action and had a ball--get it?--a ball. The experience reminded me of how little my guys are. They're still wondering how some of the tricks are done, and Cade was oh, so relieved that the Globetrotters won the game. Van and I saw the Globetrotters in College Station while we were dating. Good times.
Yesterday morning, my boys including Van ran the Miracle Match 1 mile fun run. I am so proud of their willingness to be healthy and active. I'm also proud of all the work that goes into the toughest marathon in Texas that went on this morning and thankful for all the money and awareness raised for the Be the Match registry. I hope some folks decided to join the registry. I'm a recipient of an annonomous donor from this program, so we are especially grateful.
There is a massive pile of dirt in my back yard because I have a husband with a soft spot for dirt digging kids. It will eventually be put to use in another area of the yard, but for now there is a massive pile of dirt in my back yard because I have a husband with a soft spot for dirt digging kids.
We've all had "the virus" that's been going around. Snot, slight fever, cough...and crazy tired. I'm the last of the pack, so I skipped church this morning as to not infect my sweet senior friends. Normal activity can resume this evening without any risk, I think.
Sunday, January 29, 2012
Thursday, January 5, 2012
Little Helper
A little boy with 2 minutes to spare unlatched a child lock, found the wasp poison, sprayed it all into the bird house (which had a wasp nest) and covered the kitchen table. It didn't go well for the little boy, but we made it through without injury. He was "helping".
Otherwise, it has been a great couple of days! I just have to write this down so I won't get too sentimental when they are too old to spray poison on the kitchen table. :)
Otherwise, it has been a great couple of days! I just have to write this down so I won't get too sentimental when they are too old to spray poison on the kitchen table. :)
Monday, January 2, 2012
Good doc visit
Platelets are 85! We are thankful. I don't have to come back to the doctor for 3 weeks! I wonder what I'll do with all the spare time. :)
Friday, December 30, 2011
A good end to a long year
“Keep your eyes on the prince of peace, the one who doesn’t cling to his divine power; the one who refuses to turn stones into bread, jump from great heights, and rule with great power…; the one who touches the lame, the crippled, and the blind, the one who speaks words of forgiveness and encouragement….Keep your eyes on him who becomes poor with the poor, weak with the weak. He is the source of all peace.” I took this quote from Advent for Christmas, but it is originally from Henri Nouwen’s “Adam’s Story,” Weavings, March-April, 1988. (I’m on Day 11 of Advent for preparing my heart for the Savior’s birth.—ah, well.)
Van and I are between Leakey and Concan Texas just a few miles west of the thriving metropolis of Utopia celebrating our 12th anniversary while kids are with Mom and Dad. Van teases me that he married me for my hometown. I tell him that is fine as long as he keeps bringing me back. It has been a great end to his Christmas break. He worked Christmas Eve, but was able to join his mom’s side of the family at our house in the afternoon for a very enjoyable, low-key get-together. Our nephew Tye and I made a dent in the buttermilk pie that the kids and I made the day before. The big kids chased each other around like mad monkeys, and Addison, now two, was content to watch the maniacs with their new Christmas weapons and play with the bucket of balls and books. It was so good to spend time with everyone. The group gave me a cross necklace that I treasure. So beautiful.
Avi decided that because she turned three-years-old and was a big girl she should use a toilet, so she did. That was easy. I have no advice to give a new parent on toilet training. My three were so very different. Avi has also decided that big girls have stronger opinions and need more opportunity for independence. (read: meltdown on the kitchen floor) The other day, I had told her “no”, and she responded, “Well, Aunt Fisha (Tricia) will let me.” I had to laugh, but ooooh, girl. The initial sassy stubbornness has already starting to wane, though. I believe our “Most Reasonable Two-year-old-in-the-World” has turned into a joyful, confident three-year-old. She is singing even more, twirling and dancing and speaking to people that she has just met. It is really neat to watch. “I is a big girwl and a wittle girwl.”
Zane, oh, Zane. Man, that kid is a mess. We had gone on a lovely hike with my sister’s crew in which every child, save one, ended up falling in the creek to varying degrees. Zane was the first, and I do believe he aimed for it. He could care less about being cold and wet and continued zigging around the trail and finding all sorts of treasures in the forms of boulders, rocks and sticks. The kids played the game, “Who can find the biggest rock and throw it near to a cousin in an attempt to make it land in the water.” Great game. We really had a good time, and took the rag tag bunch to load up. Van stripped the wettest kid down to put him back in the car seat, but Zane found a way to entertain the parking lot. If it were appropriate, I would post a photo of him in his undies dancing atop Mom’s truck with the picturesque Lost Maple’s Park mountains in the background. He is a funny kid--so content and full of joy, but impossible!
I haven’t seen Cade this week. I’m pretty sure that he is still around, but the company of Carly-Daniel-Elise and Tye have engaged him quite well. Before my son disappeared, I had told him “no” to a request and explained my reasoning. He responded, “Well, I guess that makes sense, but not in my world.” It’s probably a good thing that the cousins stole him away. I’m looking forward to finding my son at some point tomorrow and enjoying his break with him. He’s compiled a list of things to do for fun, so we’re sure to have a good time. “Ice skating” is at the top, so unless we set up kiddie pools and let them freeze again this year, we might not complete the list because, um….we live in Waco. I’m hoping to break out the bread machine with him. When Zane was a baby, Cade and I used to use it while he was napping, and he still remembers. Warm bread is hard to forget, I suppose. Butter…mmmmm…….
Van worked his tail off the couple of weeks before Christmas, and now is getting a break. He spent yesterday near Canyon Lake (about 2.5 hours from Utopia) fishing for 6 hours straight. (I really think it is neat that he ties many of his own flies. Bzzzzz….) Today, we learned that Garner State Park where Van and I just hiked stocked trout this morning. We’ll keep that in mind next year! We might come back tomorrow so that he can fish with the kids, although he’s not feeling well.
We’ve had such a good week with family including a visit to my great Aunt Alice’s. Van and I confirmed several scenes from the movie 7 Days in Utopia (yep, finally saw it) and learned that Aunt Alice is also in the Methodist Church scene. That’s just fun. We had a good visit with Sid and Jacque. I like showing off my kids to the people that knew me when I was a kid and vise-versa. That is good stuff right there. Trish and I snuck away for a thrift store trip. You never know what you will find, and finding is so much more fun with a great sister. A Roomba is now charging at my parent’s house!!!! I hope it works!!!! We also had plenty of time for me to tease her about health foods, the age of the earth, conspiracy theories…anything that a little sister can think up to push a button—it was great. Mom spoiled us all with biscuits and gravy, and Dad has given lawn mower rides so much that now the kids play a game called,( you guessed it) “Lawnmower Ride”. We “goat” a lot of places. We “goat” the playground. We “goat” to the store to get milk. I never realized how much we “goat”. We “goat” to the bathroom most of all. Probably all 11 of us took turns taking Avi to the newly found bathroom. “I just kidding!” was her mantra if there was no product. I was able to do some little crafts with the kids, and I’m currently working on finding the cutest way to patch blue jean knees using Mom’s collections of various (and ‘sundry) crafting materials. With their love of bouldering and crawling on the ground like puppies, it looks like I might have a few to patch in the future! I also learned that Target carries slim jeans….it might come to that at this rate.
My health is doing very well. I’m hangin’ with the crew and have committed to actual exercise again. The platelets two weeks ago were good enough to have my central line removed. Woo-hoo! Praise God. Removal of it was good because the thing totally wigged me out. I felt part robot, even though I was thankful for it for IVs, transfusions and blood draws. After the removal, I was literally shaking because it messed with mind so much. By the grace of God, I pulled myself back together before driving back to Waco. I have an appointment on Monday for a good ol’ check-up, and Van is coming. I’m expecting to see a good platelet count, and I’m expecting that they will try to lower my steroid dose again. It has side effects like sleep problems, calcium depletion, muscle depletion….and they mess with my taste buds in an ugly, ugly way, and that just makes me ANGRY. We need to get it gone as soon as appropriate. My eye problems (another effect of GVHD) are much, much better and are responding to treatment. The kiddos will be with Van’s mom for the morning of the appointment, and maybe we can all do something fun in Dallas in the afternoon.
I may be one of the few people that like new year’s resolutions: abide in Jesus, exercise, slim down (self-control), and discipline of daily Bible study. Those are my goals for me. Hopefully, they will spill over into family and community in the process, or maybe someone will spill over onto me.
Van and I are between Leakey and Concan Texas just a few miles west of the thriving metropolis of Utopia celebrating our 12th anniversary while kids are with Mom and Dad. Van teases me that he married me for my hometown. I tell him that is fine as long as he keeps bringing me back. It has been a great end to his Christmas break. He worked Christmas Eve, but was able to join his mom’s side of the family at our house in the afternoon for a very enjoyable, low-key get-together. Our nephew Tye and I made a dent in the buttermilk pie that the kids and I made the day before. The big kids chased each other around like mad monkeys, and Addison, now two, was content to watch the maniacs with their new Christmas weapons and play with the bucket of balls and books. It was so good to spend time with everyone. The group gave me a cross necklace that I treasure. So beautiful.
Avi decided that because she turned three-years-old and was a big girl she should use a toilet, so she did. That was easy. I have no advice to give a new parent on toilet training. My three were so very different. Avi has also decided that big girls have stronger opinions and need more opportunity for independence. (read: meltdown on the kitchen floor) The other day, I had told her “no”, and she responded, “Well, Aunt Fisha (Tricia) will let me.” I had to laugh, but ooooh, girl. The initial sassy stubbornness has already starting to wane, though. I believe our “Most Reasonable Two-year-old-in-the-World” has turned into a joyful, confident three-year-old. She is singing even more, twirling and dancing and speaking to people that she has just met. It is really neat to watch. “I is a big girwl and a wittle girwl.”
Zane, oh, Zane. Man, that kid is a mess. We had gone on a lovely hike with my sister’s crew in which every child, save one, ended up falling in the creek to varying degrees. Zane was the first, and I do believe he aimed for it. He could care less about being cold and wet and continued zigging around the trail and finding all sorts of treasures in the forms of boulders, rocks and sticks. The kids played the game, “Who can find the biggest rock and throw it near to a cousin in an attempt to make it land in the water.” Great game. We really had a good time, and took the rag tag bunch to load up. Van stripped the wettest kid down to put him back in the car seat, but Zane found a way to entertain the parking lot. If it were appropriate, I would post a photo of him in his undies dancing atop Mom’s truck with the picturesque Lost Maple’s Park mountains in the background. He is a funny kid--so content and full of joy, but impossible!
I haven’t seen Cade this week. I’m pretty sure that he is still around, but the company of Carly-Daniel-Elise and Tye have engaged him quite well. Before my son disappeared, I had told him “no” to a request and explained my reasoning. He responded, “Well, I guess that makes sense, but not in my world.” It’s probably a good thing that the cousins stole him away. I’m looking forward to finding my son at some point tomorrow and enjoying his break with him. He’s compiled a list of things to do for fun, so we’re sure to have a good time. “Ice skating” is at the top, so unless we set up kiddie pools and let them freeze again this year, we might not complete the list because, um….we live in Waco. I’m hoping to break out the bread machine with him. When Zane was a baby, Cade and I used to use it while he was napping, and he still remembers. Warm bread is hard to forget, I suppose. Butter…mmmmm…….
Van worked his tail off the couple of weeks before Christmas, and now is getting a break. He spent yesterday near Canyon Lake (about 2.5 hours from Utopia) fishing for 6 hours straight. (I really think it is neat that he ties many of his own flies. Bzzzzz….) Today, we learned that Garner State Park where Van and I just hiked stocked trout this morning. We’ll keep that in mind next year! We might come back tomorrow so that he can fish with the kids, although he’s not feeling well.
We’ve had such a good week with family including a visit to my great Aunt Alice’s. Van and I confirmed several scenes from the movie 7 Days in Utopia (yep, finally saw it) and learned that Aunt Alice is also in the Methodist Church scene. That’s just fun. We had a good visit with Sid and Jacque. I like showing off my kids to the people that knew me when I was a kid and vise-versa. That is good stuff right there. Trish and I snuck away for a thrift store trip. You never know what you will find, and finding is so much more fun with a great sister. A Roomba is now charging at my parent’s house!!!! I hope it works!!!! We also had plenty of time for me to tease her about health foods, the age of the earth, conspiracy theories…anything that a little sister can think up to push a button—it was great. Mom spoiled us all with biscuits and gravy, and Dad has given lawn mower rides so much that now the kids play a game called,( you guessed it) “Lawnmower Ride”. We “goat” a lot of places. We “goat” the playground. We “goat” to the store to get milk. I never realized how much we “goat”. We “goat” to the bathroom most of all. Probably all 11 of us took turns taking Avi to the newly found bathroom. “I just kidding!” was her mantra if there was no product. I was able to do some little crafts with the kids, and I’m currently working on finding the cutest way to patch blue jean knees using Mom’s collections of various (and ‘sundry) crafting materials. With their love of bouldering and crawling on the ground like puppies, it looks like I might have a few to patch in the future! I also learned that Target carries slim jeans….it might come to that at this rate.
My health is doing very well. I’m hangin’ with the crew and have committed to actual exercise again. The platelets two weeks ago were good enough to have my central line removed. Woo-hoo! Praise God. Removal of it was good because the thing totally wigged me out. I felt part robot, even though I was thankful for it for IVs, transfusions and blood draws. After the removal, I was literally shaking because it messed with mind so much. By the grace of God, I pulled myself back together before driving back to Waco. I have an appointment on Monday for a good ol’ check-up, and Van is coming. I’m expecting to see a good platelet count, and I’m expecting that they will try to lower my steroid dose again. It has side effects like sleep problems, calcium depletion, muscle depletion….and they mess with my taste buds in an ugly, ugly way, and that just makes me ANGRY. We need to get it gone as soon as appropriate. My eye problems (another effect of GVHD) are much, much better and are responding to treatment. The kiddos will be with Van’s mom for the morning of the appointment, and maybe we can all do something fun in Dallas in the afternoon.
I may be one of the few people that like new year’s resolutions: abide in Jesus, exercise, slim down (self-control), and discipline of daily Bible study. Those are my goals for me. Hopefully, they will spill over into family and community in the process, or maybe someone will spill over onto me.
Saturday, December 10, 2011
41 and counting....
...nah, I'm just 35 years old. But my platelet count on Wednesday was 41. My optimistic PA (at my asking) went ahead and scheduled my central line removal for Dec. 16 believing that my count will be at 50 by then.
Tuesday, November 29, 2011
good news
Platelets are 37 and CMV negative for the 3rd time. So....when platelets reach 50, I can get my central line taken out! Woo-hoo! My next Dallas appointment isn't until December 16.
Still having troubles with my eyes. I tested 20/20, but my vision feels blurry when reading, and my eyes are swollen and super dry. Very annoying. I just started a new prescription today. It's all due to the silly GVHD.
Still having troubles with my eyes. I tested 20/20, but my vision feels blurry when reading, and my eyes are swollen and super dry. Very annoying. I just started a new prescription today. It's all due to the silly GVHD.
Monday, November 28, 2011
%!@#!*!!!!
We're working on expletives in our house. Every family has its parameters, and ours includes honoring God and people with our words. So even minor words like "gosh" aren't supposed to be uttered as well as "butt", "stupid", etc. The eldest child is trying to navigate the nuances of first grade, and we are trying to find some replacement words in his insistance. The middle child has happily settled into "Oh my cows!" Our baby has decided to get in on the action as well. During a diaper change, I let her know that I would be using medicine on her bottom because she had a diaper rash, and she said, "Dang it!" My grandmother taught me that if people used curse words (worse than these I suppose!)it was because they weren't smart enough to have a varied vocabulary. That stuck with me. In other words, she was saying they were STUPID. (hee-hee, get it?)
We traveled and had a ton of great family time over the thanksgiving break, and we even went out to the Homestead Heritage craft fair on Saturday. I ate a funnel cake for the first time in 20? years, and it didn't let me down. We enjoyed the Mission Waco toy drive at church with the Christian motor cycle group on Sunday. That is a highlight each year. Because I was having sleep issues anyway, I tackled JoAnn Fabric, ToysRUs, Walgreens and Mardel bookstore on Black Friday. That was actually very pleasant and fun. Waco people are nice. Because McDonald's didn't have their hot chocolate cranking, I had to settle for Starbucks ("at a lower temperature, please")and probably negated any savings from the sales! Totally kidding. It was worth every penny. I got back to the house a few minutes after everyone woke up with a specially-chosen donut for everyone and a coffee in hand for my husband. It was nice being the hero for a whole 5 minutes! Today, I'm in Dallas for hopefully my last drug infusion for CMV. I've had two negative test results, and I expect the same today. I've had to have fewer platelet transfusions over the last couple of weeks, and my PA is thinking that two week Dallas check-ups and one week Waco lab draws should suffice. Platelets seem to be holding steady at 37 today. Yea!
With Cade in school, timing can be tricky for Van's required medical conferences. This year it is a bit easier because we are stickin' to Texas (no lugging carseats onto airplanes!!!), and taking it easy. He'll be on the River Walk in San Antonio for 3 days learning about feet. Feet. Yep, feet. Because we only want Cade to miss one day of school, and because we don't want to have two vehicles, Van will be traveling by Greyhound. The bus, not the dog. He said they may even have wifi on the bus (the dog wasn't equipped). We'll see how that goes. We're planning on doing something with the kiddos on Friday afternoon with the kids in San Antonio (probably either the zoo or squeezing in one more trip to Sea World before our pass expires) and then handing them to grandparents so Van and I can have some River Walk fun. (I'll have Saturday morning to myself in a nice hotel--SWEET! I wonder if I should take my sewing machine?) Then, we'll all be in Utopia for a night when his conference winds down. That's a good plan. He's been tying flies in anticipation of a fishing venture--a nymph larvae--what in the world--but it doesn't look like it is the right time for that particular river and that particular trout. I'm learning way more about fishing than I thought I ever would!
Our house plans are coming along nicely. Van and I are going to look over a spec sheet with the builder while kiddos are at parent's day out on Tuesday. We're in a hard decision making stage about what is important to keep and what is not to keep costs reasonable. I've been praying for wisdom about this because I want to "have in mind the things of God, not the things of men." We hope to start building in January. Wow, January is coming up soon. We'd better get crackin'.
We traveled and had a ton of great family time over the thanksgiving break, and we even went out to the Homestead Heritage craft fair on Saturday. I ate a funnel cake for the first time in 20? years, and it didn't let me down. We enjoyed the Mission Waco toy drive at church with the Christian motor cycle group on Sunday. That is a highlight each year. Because I was having sleep issues anyway, I tackled JoAnn Fabric, ToysRUs, Walgreens and Mardel bookstore on Black Friday. That was actually very pleasant and fun. Waco people are nice. Because McDonald's didn't have their hot chocolate cranking, I had to settle for Starbucks ("at a lower temperature, please")and probably negated any savings from the sales! Totally kidding. It was worth every penny. I got back to the house a few minutes after everyone woke up with a specially-chosen donut for everyone and a coffee in hand for my husband. It was nice being the hero for a whole 5 minutes! Today, I'm in Dallas for hopefully my last drug infusion for CMV. I've had two negative test results, and I expect the same today. I've had to have fewer platelet transfusions over the last couple of weeks, and my PA is thinking that two week Dallas check-ups and one week Waco lab draws should suffice. Platelets seem to be holding steady at 37 today. Yea!
With Cade in school, timing can be tricky for Van's required medical conferences. This year it is a bit easier because we are stickin' to Texas (no lugging carseats onto airplanes!!!), and taking it easy. He'll be on the River Walk in San Antonio for 3 days learning about feet. Feet. Yep, feet. Because we only want Cade to miss one day of school, and because we don't want to have two vehicles, Van will be traveling by Greyhound. The bus, not the dog. He said they may even have wifi on the bus (the dog wasn't equipped). We'll see how that goes. We're planning on doing something with the kiddos on Friday afternoon with the kids in San Antonio (probably either the zoo or squeezing in one more trip to Sea World before our pass expires) and then handing them to grandparents so Van and I can have some River Walk fun. (I'll have Saturday morning to myself in a nice hotel--SWEET! I wonder if I should take my sewing machine?) Then, we'll all be in Utopia for a night when his conference winds down. That's a good plan. He's been tying flies in anticipation of a fishing venture--a nymph larvae--what in the world--but it doesn't look like it is the right time for that particular river and that particular trout. I'm learning way more about fishing than I thought I ever would!
Our house plans are coming along nicely. Van and I are going to look over a spec sheet with the builder while kiddos are at parent's day out on Tuesday. We're in a hard decision making stage about what is important to keep and what is not to keep costs reasonable. I've been praying for wisdom about this because I want to "have in mind the things of God, not the things of men." We hope to start building in January. Wow, January is coming up soon. We'd better get crackin'.
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