Babygirl has more than one nephrologist on board at CHOP. We truly like them all, but have the most experience with Dr. A and Dr. B. (Honest. That's who they are LOL.) Dr. B is the oldest of the team, and therefore most experienced. But, speaking as an aging doc, experience sometimes overrides progress. We get into an "If it ain't broke don't fix it" mentality. Dr. A is the youngest (I think. She looks incredibly young, but sometimes says things that make me guess she's about 10 years older than she looks). With young comes progress, sometimes at the expense of experience.
Each of us older docs have seen new meds work miracles. We've also seen Vioxx cause heart attacks, and a dozen other meds pulled from the market when dire side effects are eventually detected when larger populations stay on those meds long-term.
Babygirl's creatinine is 1.3 again. The bounce is frightening in many ways, especially since it seems to be accompanied by a mild buildup of acid in her system, a subtle sign that Jorge's kidney may not be working as well as it should. Her tacrolimus levels are bouncing as well.
There are a few choices. There's another anti-rejection drug that has been used in kids. It has some pros - less likely to damage a kidney long-term for example. It has some cons - fewer skin cancers but maybe some risk of other rare cancers? There is yet another that is untested in kids but very promising in adults. Pediatric trials will likely start in November. She qualifies for the study.
Obviously before we commit to either thing I need a lot of information. Fortunately, all the nephrologists meet together to discuss each case. Dr. A seems to be in favor of doing something. Dr. B is more conservative. And frankly, I have no way of telling which of them is right, and either of them would be more than willing to admit that the other one MIGHT be right.
I agree in that we need to do SOMETHING. I just have no idea what.
DeeDee
Monday, July 30, 2012
Sunday, July 29, 2012
Week Sixty-six - Re-entry......
Coming back into the "real world" after any kind of break can be a challenge. We used to see horrible behavior in our foster kids after home visits, something which Hubby and I referred to as "The Re-entry Phenomenon." Switching gears from one thing to another can lead to incredible glitches: The kind of can't-find-my-shoes-my-purse-my-KEYS crap that can make you arrive at work feeling like you've been shot out of a rocket.
Oddly, despite all of the above happening, and my arrival at work a bit late on Monday, the week feels as if it went fairly smoothly. Oh, it was a full-moon kind of week, despite the fact that the moon will be full NEXT week. At least MY keys didn't end up at the bottom of the elevator shaft (they had slipped through the lining of my purse and disappeared). And any week in which Babygirl has no blood work or hospital visits is a good week by definition.
Hubby and I decided that since we drive past an amusement park every single time we are on our way to and from CHOP, and since Babygirl worships 'coasters, that we'd invest in season passes. Babygirl and I broke them in today.
I can unequivocally say that, as much as I have adored roller coasters all of my life, my vestibular system no longer agrees with me. Sad as it is, I may make it through this season with Babygirl, but I'm never going to be able to ride with her like I did with her other sisters.
It was a good day anyway - it took six 'coaster rides before I felt like I was going to toss something, and by that time Babygirl was tired. We left about two minutes before it began to pour, so the timing was excellent!
Doctor visit and blood work in the morning. If it's hot, maybe we'll stop on the way home and use the water park!
DeeDee
Oddly, despite all of the above happening, and my arrival at work a bit late on Monday, the week feels as if it went fairly smoothly. Oh, it was a full-moon kind of week, despite the fact that the moon will be full NEXT week. At least MY keys didn't end up at the bottom of the elevator shaft (they had slipped through the lining of my purse and disappeared). And any week in which Babygirl has no blood work or hospital visits is a good week by definition.
Hubby and I decided that since we drive past an amusement park every single time we are on our way to and from CHOP, and since Babygirl worships 'coasters, that we'd invest in season passes. Babygirl and I broke them in today.
I can unequivocally say that, as much as I have adored roller coasters all of my life, my vestibular system no longer agrees with me. Sad as it is, I may make it through this season with Babygirl, but I'm never going to be able to ride with her like I did with her other sisters.
It was a good day anyway - it took six 'coaster rides before I felt like I was going to toss something, and by that time Babygirl was tired. We left about two minutes before it began to pour, so the timing was excellent!
Doctor visit and blood work in the morning. If it's hot, maybe we'll stop on the way home and use the water park!
DeeDee
Saturday, July 28, 2012
Mission Trip, Day Eight......
Saturday, July 21st
The journey home. Thirteen hours on the road, straight to the church. Lots of talk about what we did, why we did it, and why we want to keep on doing it. Returning to real life seems a little scary, but doable.
My final journal entry:
"I'm tired of talking about it. God's in there somewhere, but I'm tired of figuring out where."
And you know what? It's enough.
DeeDee
The journey home. Thirteen hours on the road, straight to the church. Lots of talk about what we did, why we did it, and why we want to keep on doing it. Returning to real life seems a little scary, but doable.
My final journal entry:
"I'm tired of talking about it. God's in there somewhere, but I'm tired of figuring out where."
And you know what? It's enough.
DeeDee
Friday, July 27, 2012
Mission Trip, Day Seven.....
Friday, July 20th
Final day of work. I cannot now remember what triggered this journal entry:
"How can I trust You again when you let my baby get so sick?"
There is not now, nor will there ever be, enough of an explanation for me. In the deep bedrock of my soul I know that the answer simply does not matter. I also know that the answer may not actually exist, any more than there is a sensible answer to "Is red round, or square?" For the Great Eternal, who stands outside of time, the answer is irrelevant. Outside of time, she is not sick, and her sickness will represent the briefest imaginable portion of her eternal life. Outside of time, my memory of her suffering and losses will only stand in contrast to what she REALLY is, for "it does not yet appear what we shall be, but we know that when he shall appear, we shall be like Him."
It's NOT enough. But it will have to do. We have work to finish. I manage to cry in private this time.
Heading to the home that we now all view as "ours," we map out the day: Young people, dig the trench. We'll figure out where. Sabrina has a board to install. Somehow yesterday she lost track of her skill with the drill, but by the end of the day, she's gonna have it or die trying. Adults, finish the danged backer board and start the tile. There is no way this can all be accomplished today, but we'll do all we can.
I took the younger folk (minus Sabrina, who was busy with a drill LOL), and we scoped out the land. Where does the water come from? And where would a trench successfully drain from and to? While we are staking out a potential pathway, a neighbor comes and tells us that it is partly on his property. We mark what he says is the line, and shift the trench route a couple of feet. Our homeowner returns and disputes the line, but we convince him that it doesn't matter - the trench will do very well in it's new location. ASP staff arrive, and concur with the location of the trench and we give the go-ahead for the digging.
The floor drags on. The kids FINISH the trench. There are only THREE of them digging, and it is 18 inches deep, 18 inches wide, and about 20 yards long. Sabrina installs her board and moves on to framing a window, refusing to let anyone else in on the job. The rest go to clean the van and sort tools into their owners' toolboxes. They all finish, and by this time we have laid the first four rows of tile, starting with 4 in the middle and working out concentrically.
At this point the home owner's daughter joins us. She sits in the middle, handing out tiles, managing tools: "I need a knife!" "Got it!" "Pencil?" "Here you go!" We are all so sticky from tile glue that we don't need to actually pick anything up, just slap a hand on it and it comes right along! Taking off a pair of scissors requires manually pulling fingers back apart. There is much, much much laughter.
It's time to leave, but there are eight people in that small room absolutely determined to finish even if it means no dinner.
And by some miracle, we do. We did everything on the list except painting a room (it was too full of the things from the room we just finished!) AND dug the trench. We laugh. We hug. We get stuck together. We'd clap, but we can only do one each.
Then it's time to leave them, Moody and Molly and Linda. It's like leaving family behind. They thank us for what we've done. But more than that, we thank THEM for letting us do it. We all feel like we've gotten so much more than we gave.
Back at the center, we make it (barely) in time to eat - many teams, like ours, stayed to go the distance, so they delayed dinner.
After dinner is the final EG. The one where we all share our "God Moments," the one most special moment of the week. Eighty-two people listen to each other's stories. No one is bored. No one wants to leave. I say that my God Moment was watching Ryan become a leader. And it's true - the transformation from boy to man has been a gift to observe. And I can say it without crying.
But my personal God Moments were all in the tears. God reached out His hands to me each time a teammate held me through the struggle, each time a total stranger from a far-away church hugged me, each time a kind word landed in my Warm Fuzzy bag, and especially in the moment when I realized Babygirl's name was up on the prayer request board, and I didn't put it there.
It is true that God has no hand but our hands. I went to lend my hands to God for a week. And I honestly went to escape my life. But I received love and support and relief from God through the hands of others.
Nothing has changed. Not God, not Babygirl, not life. Usually we return from these trips exhausted. But I feel lighter, rested. Relieved. Thankful.
DeeDee
Final day of work. I cannot now remember what triggered this journal entry:
"How can I trust You again when you let my baby get so sick?"
There is not now, nor will there ever be, enough of an explanation for me. In the deep bedrock of my soul I know that the answer simply does not matter. I also know that the answer may not actually exist, any more than there is a sensible answer to "Is red round, or square?" For the Great Eternal, who stands outside of time, the answer is irrelevant. Outside of time, she is not sick, and her sickness will represent the briefest imaginable portion of her eternal life. Outside of time, my memory of her suffering and losses will only stand in contrast to what she REALLY is, for "it does not yet appear what we shall be, but we know that when he shall appear, we shall be like Him."
It's NOT enough. But it will have to do. We have work to finish. I manage to cry in private this time.
Heading to the home that we now all view as "ours," we map out the day: Young people, dig the trench. We'll figure out where. Sabrina has a board to install. Somehow yesterday she lost track of her skill with the drill, but by the end of the day, she's gonna have it or die trying. Adults, finish the danged backer board and start the tile. There is no way this can all be accomplished today, but we'll do all we can.
I took the younger folk (minus Sabrina, who was busy with a drill LOL), and we scoped out the land. Where does the water come from? And where would a trench successfully drain from and to? While we are staking out a potential pathway, a neighbor comes and tells us that it is partly on his property. We mark what he says is the line, and shift the trench route a couple of feet. Our homeowner returns and disputes the line, but we convince him that it doesn't matter - the trench will do very well in it's new location. ASP staff arrive, and concur with the location of the trench and we give the go-ahead for the digging.
The floor drags on. The kids FINISH the trench. There are only THREE of them digging, and it is 18 inches deep, 18 inches wide, and about 20 yards long. Sabrina installs her board and moves on to framing a window, refusing to let anyone else in on the job. The rest go to clean the van and sort tools into their owners' toolboxes. They all finish, and by this time we have laid the first four rows of tile, starting with 4 in the middle and working out concentrically.
At this point the home owner's daughter joins us. She sits in the middle, handing out tiles, managing tools: "I need a knife!" "Got it!" "Pencil?" "Here you go!" We are all so sticky from tile glue that we don't need to actually pick anything up, just slap a hand on it and it comes right along! Taking off a pair of scissors requires manually pulling fingers back apart. There is much, much much laughter.
It's time to leave, but there are eight people in that small room absolutely determined to finish even if it means no dinner.
And by some miracle, we do. We did everything on the list except painting a room (it was too full of the things from the room we just finished!) AND dug the trench. We laugh. We hug. We get stuck together. We'd clap, but we can only do one each.
Then it's time to leave them, Moody and Molly and Linda. It's like leaving family behind. They thank us for what we've done. But more than that, we thank THEM for letting us do it. We all feel like we've gotten so much more than we gave.
Back at the center, we make it (barely) in time to eat - many teams, like ours, stayed to go the distance, so they delayed dinner.
After dinner is the final EG. The one where we all share our "God Moments," the one most special moment of the week. Eighty-two people listen to each other's stories. No one is bored. No one wants to leave. I say that my God Moment was watching Ryan become a leader. And it's true - the transformation from boy to man has been a gift to observe. And I can say it without crying.
But my personal God Moments were all in the tears. God reached out His hands to me each time a teammate held me through the struggle, each time a total stranger from a far-away church hugged me, each time a kind word landed in my Warm Fuzzy bag, and especially in the moment when I realized Babygirl's name was up on the prayer request board, and I didn't put it there.
It is true that God has no hand but our hands. I went to lend my hands to God for a week. And I honestly went to escape my life. But I received love and support and relief from God through the hands of others.
Nothing has changed. Not God, not Babygirl, not life. Usually we return from these trips exhausted. But I feel lighter, rested. Relieved. Thankful.
DeeDee
Thursday, July 26, 2012
Mission Trip, Day Six.....
Thursday, July 19th
Thursday is the day of the mission trip when you realize FOR SURE that you are not going to be able to finish everything you wanted to. It's sometimes a depressing day. We started the day with a big hole in the floor that needed to be filled with 3 layers of material cut in 3 different sizes, with no true right angles. This sort of thing takes patience. Once the hole was covered, the entire floor needed to be covered in backer board (a thin layer of concrete-like flooring). Before that could be done, areas of the floor with large gaps or uneven spots needed to be treated with self-leveling compound. At one point I suggested that a 50-gallon drum of the stuff would be helpful. Lynn suggested that it might not be enough.
While Ryan and Lynn fussed with floorboards and Morgan, Sabrina and Ezra fitted trim, Jackson and I went outside to organize tools, and to sort through the bin that each team gets as part of our standard equipment. It holds a couple of extra hammers and screwdrivers, nail aprons, gloves, a spare reusable water bottle or two, wasp spray, Clorox wipes, zipper bags and other miscellaneous useful stuff. Our goal was to inventory, make a replacement list and list things that we had wished we had that might be useful for next year. We were sitting under our group's pop-up shelter to do this.
We were pretty focused on the task at hand, when suddenly we heard our homeowner shouting at us. Turning, we saw him running toward the house hollering something about a tornado. At this same instant, the sky turned black and we got hit HARD by a sudden wind. "We have to get the shelter down!" I yelled a Jackson. We both grabbed the sides of the shelter to collapse it just as the wind gusted underneath it. There was a moment when we could easily have become airborne and joined the Flying Monkeys that I'm SURE had to have been around somewhere. A strut snapped, the structure more or less collapsed, and we ran for it.
Now, remember - this house has NO foundation. It's merely sitting on the side of a rather steep hill, and we have the inside scoop on just how unstable it might be. There is absolutely nowhere in this building that might offer adequate shelter in a severe storm, not even the bathtub. Trust me. The kids are coming out of the house to try and collect stuff from the backyard. I herd them back in and order them to stay inside just as the heavens open and drop all the water the entire Midwest has been praying for directly on the house. I go to the front of the house and our homeowner is calmly sitting on the front porch.
"Moody, don't you think you 'd be safer inside?" He told me of the one time there had been a tornado in the 'holler' below us. He and his wife had sat on that same porch and watched as it traveled down the valley. He said that that was the only other storm he'd ever seen that started at the speed and force this one did. I decided to go back inside, and had a Dorothy Moment when I was almost unable to open the front door against the wind.
We decide to keep working inside, and actually end up staying an extra hour until the rain ends. The backer board is almost all down, but there's still some to fit in the odd spots, and then we still have to tile. We are out of smaller jobs for the younger hands, so we'll be asking tonight if we can start some of next weeks' work.
Back at the center it was Culture Night, and we heard an excellent singer and teller of folk stories. Our church went to Dairy Queen (twenty twisty miles away), and our team came back to do our chore of the day - sweeping and mopping the main hallway, and grounds pick up. (All the teams do chores, every day - dishes, bathroom or shower cleanup, etc. It allows the center to operate more cheaply so more money goes to home repair.)
My journal for the day lists only a bunch of two-word phrases - just enough to jog my memory for this post. The only phrase I had trouble working in was "mouse poop."
DeeDee
Thursday is the day of the mission trip when you realize FOR SURE that you are not going to be able to finish everything you wanted to. It's sometimes a depressing day. We started the day with a big hole in the floor that needed to be filled with 3 layers of material cut in 3 different sizes, with no true right angles. This sort of thing takes patience. Once the hole was covered, the entire floor needed to be covered in backer board (a thin layer of concrete-like flooring). Before that could be done, areas of the floor with large gaps or uneven spots needed to be treated with self-leveling compound. At one point I suggested that a 50-gallon drum of the stuff would be helpful. Lynn suggested that it might not be enough.
While Ryan and Lynn fussed with floorboards and Morgan, Sabrina and Ezra fitted trim, Jackson and I went outside to organize tools, and to sort through the bin that each team gets as part of our standard equipment. It holds a couple of extra hammers and screwdrivers, nail aprons, gloves, a spare reusable water bottle or two, wasp spray, Clorox wipes, zipper bags and other miscellaneous useful stuff. Our goal was to inventory, make a replacement list and list things that we had wished we had that might be useful for next year. We were sitting under our group's pop-up shelter to do this.
We were pretty focused on the task at hand, when suddenly we heard our homeowner shouting at us. Turning, we saw him running toward the house hollering something about a tornado. At this same instant, the sky turned black and we got hit HARD by a sudden wind. "We have to get the shelter down!" I yelled a Jackson. We both grabbed the sides of the shelter to collapse it just as the wind gusted underneath it. There was a moment when we could easily have become airborne and joined the Flying Monkeys that I'm SURE had to have been around somewhere. A strut snapped, the structure more or less collapsed, and we ran for it.
Now, remember - this house has NO foundation. It's merely sitting on the side of a rather steep hill, and we have the inside scoop on just how unstable it might be. There is absolutely nowhere in this building that might offer adequate shelter in a severe storm, not even the bathtub. Trust me. The kids are coming out of the house to try and collect stuff from the backyard. I herd them back in and order them to stay inside just as the heavens open and drop all the water the entire Midwest has been praying for directly on the house. I go to the front of the house and our homeowner is calmly sitting on the front porch.
"Moody, don't you think you 'd be safer inside?" He told me of the one time there had been a tornado in the 'holler' below us. He and his wife had sat on that same porch and watched as it traveled down the valley. He said that that was the only other storm he'd ever seen that started at the speed and force this one did. I decided to go back inside, and had a Dorothy Moment when I was almost unable to open the front door against the wind.
We decide to keep working inside, and actually end up staying an extra hour until the rain ends. The backer board is almost all down, but there's still some to fit in the odd spots, and then we still have to tile. We are out of smaller jobs for the younger hands, so we'll be asking tonight if we can start some of next weeks' work.
Back at the center it was Culture Night, and we heard an excellent singer and teller of folk stories. Our church went to Dairy Queen (twenty twisty miles away), and our team came back to do our chore of the day - sweeping and mopping the main hallway, and grounds pick up. (All the teams do chores, every day - dishes, bathroom or shower cleanup, etc. It allows the center to operate more cheaply so more money goes to home repair.)
My journal for the day lists only a bunch of two-word phrases - just enough to jog my memory for this post. The only phrase I had trouble working in was "mouse poop."
DeeDee
Wednesday, July 25, 2012
Mission Trip, Day Five....
Wednesday, July 18th
One of the challenges of leading (okay, but I'm not the leader!) a team that is supposed to be at least half youth ages 14 - 18 is finding ways to keep the entire team productive. Sometimes it takes two or three experienced heads to puzzle out how to solve some tricky bit of construction, like "Can we support the entire house on this six foot long foundation?" While that puzzling is occurring, there are four (usually) inexperienced people trying to figure out what they are supposed to be doing with their time.
One of the hallmarks of good leaders in such a situation is that they figure out ahead of time what can be done by those inexperienced hands. One must also make sure that those inexperienced hands have and know how to use the tools they need for the job. It's almost guaranteed that it will take them twice as long to do something as it would us, but like those horrible word problems ("If one man can paint a room in 7 hours and another can paint it in 4, how long will it take if they work together?"), the answer always is, "Faster than either could do it alone." It's great to finish the puzzling and find that something else has already been finished as well.
One of the things I saw as my 'job' on this trip was to mentor Ryan in his first year as leader. Every now and then I'd ask, "What's that noise?" He'd answer, "I don't hear anything." "Me either. Go find out why your team isn't working!"
He gave me a note in my Warm Fuzzy bag that said, "Thanks for helping me be a fearless leader." I got all warm and fuzzy. That, in case you were wondering, is the purpose of the Warm Fuzzy bags. No Cold Pricklies, and NO Hot Spicies.
We had our picnic a day early this year. Our homeowners came, and our whole team had dinner with them. I'm proud to say that the whole team stayed with them for over two hours, listening to them tell stories and make jokes. My journal entry for that evening:
"She is 62. Oxygen, wrinkles, and comfortable in her skin. He's 68, up at 3 AM to deliver papers to earn $50/week. Together they raised six kids, have six grandkids, and six great-grandkids. They tell stories of their life together; good, bad, joys and sorrows. And they still look at each other with love and laughter in their eyes. He can still make her dance."
And Babygirl's numbers are better. No admission this week. It's a good day.
DeeDee
One of the challenges of leading (okay, but I'm not the leader!) a team that is supposed to be at least half youth ages 14 - 18 is finding ways to keep the entire team productive. Sometimes it takes two or three experienced heads to puzzle out how to solve some tricky bit of construction, like "Can we support the entire house on this six foot long foundation?" While that puzzling is occurring, there are four (usually) inexperienced people trying to figure out what they are supposed to be doing with their time.
One of the hallmarks of good leaders in such a situation is that they figure out ahead of time what can be done by those inexperienced hands. One must also make sure that those inexperienced hands have and know how to use the tools they need for the job. It's almost guaranteed that it will take them twice as long to do something as it would us, but like those horrible word problems ("If one man can paint a room in 7 hours and another can paint it in 4, how long will it take if they work together?"), the answer always is, "Faster than either could do it alone." It's great to finish the puzzling and find that something else has already been finished as well.
One of the things I saw as my 'job' on this trip was to mentor Ryan in his first year as leader. Every now and then I'd ask, "What's that noise?" He'd answer, "I don't hear anything." "Me either. Go find out why your team isn't working!"
He gave me a note in my Warm Fuzzy bag that said, "Thanks for helping me be a fearless leader." I got all warm and fuzzy. That, in case you were wondering, is the purpose of the Warm Fuzzy bags. No Cold Pricklies, and NO Hot Spicies.
We had our picnic a day early this year. Our homeowners came, and our whole team had dinner with them. I'm proud to say that the whole team stayed with them for over two hours, listening to them tell stories and make jokes. My journal entry for that evening:
"She is 62. Oxygen, wrinkles, and comfortable in her skin. He's 68, up at 3 AM to deliver papers to earn $50/week. Together they raised six kids, have six grandkids, and six great-grandkids. They tell stories of their life together; good, bad, joys and sorrows. And they still look at each other with love and laughter in their eyes. He can still make her dance."
And Babygirl's numbers are better. No admission this week. It's a good day.
DeeDee
Tuesday, July 24, 2012
Mission Trip, Day Four....
Tuesday, July 17th
Up at 7 for devotions at 7:15. Each group takes turns. Today's group uses "Call Me Maybe" to emphasize how Jesus' followers left immediately when called to follow him.
Today we are finished making forms for a partial foundation under 'our' room. We had brought nine 80 pound bags of concrete with us in the van (oh Lord please bless the Goose - her springs are FLAT), along with some OSB (3/4 inch thick rough plywood flooring material). We had to fit kids in over and under everything.
Our site has a cement mixer - very unusual. Usually when we do concrete we mix it bag by bag in a wheelbarrow, stirring with a rake or hoe. Since the only flat place to set this up is considerably downhill from the entrance to the house, we work as a bucket brigade. Ryan and I mix concrete and dump it into 5 gallon buckets (about 1/3 full is what everybody can carry). Lynn waits upstairs to make the concrete fit the mold. Everybody else has a bucket and just keeps running in circles. It takes us just over one hour to pour over 800 pounds of concrete.
I was, as always, wearing Mason's bracelet, in honor of baby Mason, who died of SIDS this past January. His picture pin was also with us in the van. Here's my journal entry for that day:
"Mason was with us today. He's young for a mission trip, but he's always here with me. His baby blue bracelet, along with Babygirl's Make-A-Wish band, got completely covered in concrete today as we worked to shore up a sinking room."
I also made note of my "clown fall." At 54, I assumed I was too old to do a backward 360 roll down a steep hill. I was mistaken. I can do it.
My only other note says, "Peace." My heart was truly peaceful all day.
DeeDee
Up at 7 for devotions at 7:15. Each group takes turns. Today's group uses "Call Me Maybe" to emphasize how Jesus' followers left immediately when called to follow him.
Today we are finished making forms for a partial foundation under 'our' room. We had brought nine 80 pound bags of concrete with us in the van (oh Lord please bless the Goose - her springs are FLAT), along with some OSB (3/4 inch thick rough plywood flooring material). We had to fit kids in over and under everything.
Our site has a cement mixer - very unusual. Usually when we do concrete we mix it bag by bag in a wheelbarrow, stirring with a rake or hoe. Since the only flat place to set this up is considerably downhill from the entrance to the house, we work as a bucket brigade. Ryan and I mix concrete and dump it into 5 gallon buckets (about 1/3 full is what everybody can carry). Lynn waits upstairs to make the concrete fit the mold. Everybody else has a bucket and just keeps running in circles. It takes us just over one hour to pour over 800 pounds of concrete.
I was, as always, wearing Mason's bracelet, in honor of baby Mason, who died of SIDS this past January. His picture pin was also with us in the van. Here's my journal entry for that day:
"Mason was with us today. He's young for a mission trip, but he's always here with me. His baby blue bracelet, along with Babygirl's Make-A-Wish band, got completely covered in concrete today as we worked to shore up a sinking room."
I also made note of my "clown fall." At 54, I assumed I was too old to do a backward 360 roll down a steep hill. I was mistaken. I can do it.
My only other note says, "Peace." My heart was truly peaceful all day.
DeeDee
Monday, July 23, 2012
Mission Trip, Day Three....
Monday, July 16th
This is the first trip I've taken where I did not go out to meet our family on Sunday evening. Two team members go out, assess the site, and try and guess what it might be possible to accomplish the first day on the job. ASP teams before us had already stripped a small bedroom to the studs, removed the floor, created a support system for the floor and then tiled it. They also rebuilt/added onto the back porch. The room was damaged because of runoff from the mountain behind the house. For us, ASP had a list of things to do:
Start to pull up the floor in the next bedroom and assess stability of the joists. Remove entire floor if necessary. Pour concrete footers as needed to support floor. Re-install floor, add backer board and tile. Paint the room the other team worked on last week and install wood trim at top of walls and around window. Dig a trench for a French drain to redirect water so there would be no new damage. Put up handrails on the porch steps (a full flight!).
Whew. There are only seven of us. Whenever we see one of these wish lists, we cringe. With a list this long we can safely imagine that we won't finish it all, which is always a discouraging thought. But hey, we're here to do what we can do, so we'll give it our best shot.
Every year everyone is mixed into groups that are likely to be substantially different than any group you've been in before. Our group this year was Lynn (adult), Ryan and Jackson (young adults), Morgan, Sabrina and Ezra (technically youth but all graduated high school this year) and me. I've worked with Ryan before as his team leader on other projects. I've never worked with the others, although I know all of them except Ezra. Ryan is now MY team leader, along with Lynn.
Sometimes it takes a couple of days to figure out how the group is going to function together, but it was clear from the start that this was an excellent group. Not once did anyone flinch from any task, beyond the occasional, "I will if you show me how first!" By the end of the day, the rails were up. The floor had been lifted in one corner and digging begun on a new partial foundation. Jackson, Sabrina, Morgan and Ezra had had lessons in the correct use of circular saws for both straight and angled cuts, power drills (for both placing screws and drilling holes), and a basic group of hand tools. Plans for the next days' work were in progress.
Back at the center we had showers (hot, thank God) and dinner, followed by EG.
But before I could do that, I needed to know: How were Babygirl's labs from the morning? We had no cell phone service at all, but there was a land line with a pile of calling cards next to it. I'd managed to lose myself in the work of the day, but not knowing what was going on was making me near to hysteria. So I called.
"Her creatinine is 1.3. They wanted me to bring her back tomorrow, but we're doing blood work here on Wednesday instead. There was something about her tac level but I didn't understand that part. They gave us new meds and I put them in the sorter."
1.3. That represents more than a 50% loss of function compared to when she got the transplant in February. I went back to my room - shared with seven other people. My teammates, my good great friends saw immediately that I was not okay.
At least this time I only cried in front of three people.
And then I felt better. The news was terrible, but at least I KNEW. And they weren't admitting her, mostly because Hubby stood firm and insisted on a repeat test. So now, I don't have to think about it again until Wednesday.
Let's see how that works.
DeeDee
This is the first trip I've taken where I did not go out to meet our family on Sunday evening. Two team members go out, assess the site, and try and guess what it might be possible to accomplish the first day on the job. ASP teams before us had already stripped a small bedroom to the studs, removed the floor, created a support system for the floor and then tiled it. They also rebuilt/added onto the back porch. The room was damaged because of runoff from the mountain behind the house. For us, ASP had a list of things to do:
Start to pull up the floor in the next bedroom and assess stability of the joists. Remove entire floor if necessary. Pour concrete footers as needed to support floor. Re-install floor, add backer board and tile. Paint the room the other team worked on last week and install wood trim at top of walls and around window. Dig a trench for a French drain to redirect water so there would be no new damage. Put up handrails on the porch steps (a full flight!).
Whew. There are only seven of us. Whenever we see one of these wish lists, we cringe. With a list this long we can safely imagine that we won't finish it all, which is always a discouraging thought. But hey, we're here to do what we can do, so we'll give it our best shot.
Every year everyone is mixed into groups that are likely to be substantially different than any group you've been in before. Our group this year was Lynn (adult), Ryan and Jackson (young adults), Morgan, Sabrina and Ezra (technically youth but all graduated high school this year) and me. I've worked with Ryan before as his team leader on other projects. I've never worked with the others, although I know all of them except Ezra. Ryan is now MY team leader, along with Lynn.
Sometimes it takes a couple of days to figure out how the group is going to function together, but it was clear from the start that this was an excellent group. Not once did anyone flinch from any task, beyond the occasional, "I will if you show me how first!" By the end of the day, the rails were up. The floor had been lifted in one corner and digging begun on a new partial foundation. Jackson, Sabrina, Morgan and Ezra had had lessons in the correct use of circular saws for both straight and angled cuts, power drills (for both placing screws and drilling holes), and a basic group of hand tools. Plans for the next days' work were in progress.
Back at the center we had showers (hot, thank God) and dinner, followed by EG.
But before I could do that, I needed to know: How were Babygirl's labs from the morning? We had no cell phone service at all, but there was a land line with a pile of calling cards next to it. I'd managed to lose myself in the work of the day, but not knowing what was going on was making me near to hysteria. So I called.
"Her creatinine is 1.3. They wanted me to bring her back tomorrow, but we're doing blood work here on Wednesday instead. There was something about her tac level but I didn't understand that part. They gave us new meds and I put them in the sorter."
1.3. That represents more than a 50% loss of function compared to when she got the transplant in February. I went back to my room - shared with seven other people. My teammates, my good great friends saw immediately that I was not okay.
At least this time I only cried in front of three people.
And then I felt better. The news was terrible, but at least I KNEW. And they weren't admitting her, mostly because Hubby stood firm and insisted on a repeat test. So now, I don't have to think about it again until Wednesday.
Let's see how that works.
DeeDee
Sunday, July 22, 2012
Mission Trip, Day One and Two.....
Our Mission Team arrived safe at home last evening, exhausted but content with the work accomplished. My plan is to try to write one post for each day of the trip, so although they will actually be a week out of sync, you might get a better feel for what the journey is like.
Day One (Saturday, July 14):
Despite last night's work on the vans, there is always a TON of stuff to load up in the morning. The goal is to be on the road by 8:30 AM. A few members of the congregation and our new pastor come to watch the three-ring circus that is our last minute preparation. We get a group photo, and then finish the "Three P's": Pack, Pee, and Pray. I give Babygirl and Hubby final hugs, and climb into the Green Goose.
I'm having a very hard time describing the ride from my perspective. This is the first time in all my mission trips (this is my seventh) that I have not been a team leader. I fully intend to take my non-leadership seriously. Every time someone has asked me a question requiring knowledge of our plans, anticipated work, or guidance, I have referred them to the "real" leaders. Now, in the van, I hog a whole seat, grab a pillow, and go to sleep. I'm not even driving.
Being without responsibility for the first time in over a year is overwhelming. Wave after wave of utter exhaustion sweep over me. I had no idea, truly NO idea, that I was this run down. I wake up weeping, more than once, with no specific cause.
Lunch is at Subway. Yum!
We drive through a spectacular rainstorm, seeing shelf clouds, massive cumulus clouds, clouds shaped like dolphins and bunnies and, umm, well, er.... one large vertical cloud formation that cannot be mistaken for ANYTHING but a penis. No one but me in my van sees this, but nearly every other adult in the other vans is still laughing about it when the trip is over. The youth sleep though it LOL.
We arrive in Greenville, VA, at 5:30, a bit earlier than anticipated, and enjoy their extravagant generosity: fried chicken, southern-style mac and cheese, dozens of types of salads, baked beans, and corn pudding. And we listen to the stories told by their just-returning mission team, and share ours a bit as well.
After dinner, some of us head to Walmart to pick up a few things forgotten: duct tape, wasp spray, and for me, a camera. I sit in the back of the van, and cry more. I can't say what I'm crying about - I feel a bit like a toddler who needs a nap - too exhausted to do anything BUT cry. Oddly, (and thank God) no one notices.
From there we go to the Dollar General and pick out silly things to put in the Warm Fuzzy bags. We return to the church, set up our cots and air mattresses and go to sleep.
Day Two (Sunday, July 15)
Up early (don't ask ME what time - I'm not a leader!). Breakfast on Little Debbie honey buns and donuts donated by our host church, pack up and hit the road. I share my bench in the van this time, but still spend a great deal of time sleeping. The crying, for the time being, seems to have stopped.
Lunch is at a truck stop with a wide variety of choices. I have a Whopper Junior. And a Cinnabon. It seemed like a good idea at the time.
After lunch, I take over driving the Goose. For the next hour we are on REAL West Virginia roads. The GPS makes it look like a long snake. On the ground it feels like a roller coaster with several 360 degree loops. We stop for ice cream. I decline. I'm barely hanging on to that Cinnabon.
We arrive at our center, unpack, make beds, set up our Warm Fuzzy bags, have dinner and attend Evening Gathering (EG). All of the EG's this week will follow the same format: read a passage of scripture, and discuss it. Among the scripted questions that guide the discussion is this one: "What do you not understand?" I burst into tears and bury my face in the T-shirt of the nearest teenager, who, bless him, simply holds onto me until the storm passes. So now, all 78 of the center's volunteers know that they have a grenade with the pin pulled among them. It's going to be a LOOONNNGGG week. My journal entry before bed that night reads:
"Lord, clear my mind. I'm angry - really angry. Angry."
DeeDee
Day One (Saturday, July 14):
Despite last night's work on the vans, there is always a TON of stuff to load up in the morning. The goal is to be on the road by 8:30 AM. A few members of the congregation and our new pastor come to watch the three-ring circus that is our last minute preparation. We get a group photo, and then finish the "Three P's": Pack, Pee, and Pray. I give Babygirl and Hubby final hugs, and climb into the Green Goose.
I'm having a very hard time describing the ride from my perspective. This is the first time in all my mission trips (this is my seventh) that I have not been a team leader. I fully intend to take my non-leadership seriously. Every time someone has asked me a question requiring knowledge of our plans, anticipated work, or guidance, I have referred them to the "real" leaders. Now, in the van, I hog a whole seat, grab a pillow, and go to sleep. I'm not even driving.
Being without responsibility for the first time in over a year is overwhelming. Wave after wave of utter exhaustion sweep over me. I had no idea, truly NO idea, that I was this run down. I wake up weeping, more than once, with no specific cause.
Lunch is at Subway. Yum!
We drive through a spectacular rainstorm, seeing shelf clouds, massive cumulus clouds, clouds shaped like dolphins and bunnies and, umm, well, er.... one large vertical cloud formation that cannot be mistaken for ANYTHING but a penis. No one but me in my van sees this, but nearly every other adult in the other vans is still laughing about it when the trip is over. The youth sleep though it LOL.
We arrive in Greenville, VA, at 5:30, a bit earlier than anticipated, and enjoy their extravagant generosity: fried chicken, southern-style mac and cheese, dozens of types of salads, baked beans, and corn pudding. And we listen to the stories told by their just-returning mission team, and share ours a bit as well.
After dinner, some of us head to Walmart to pick up a few things forgotten: duct tape, wasp spray, and for me, a camera. I sit in the back of the van, and cry more. I can't say what I'm crying about - I feel a bit like a toddler who needs a nap - too exhausted to do anything BUT cry. Oddly, (and thank God) no one notices.
From there we go to the Dollar General and pick out silly things to put in the Warm Fuzzy bags. We return to the church, set up our cots and air mattresses and go to sleep.
Day Two (Sunday, July 15)
Up early (don't ask ME what time - I'm not a leader!). Breakfast on Little Debbie honey buns and donuts donated by our host church, pack up and hit the road. I share my bench in the van this time, but still spend a great deal of time sleeping. The crying, for the time being, seems to have stopped.
Lunch is at a truck stop with a wide variety of choices. I have a Whopper Junior. And a Cinnabon. It seemed like a good idea at the time.
After lunch, I take over driving the Goose. For the next hour we are on REAL West Virginia roads. The GPS makes it look like a long snake. On the ground it feels like a roller coaster with several 360 degree loops. We stop for ice cream. I decline. I'm barely hanging on to that Cinnabon.
We arrive at our center, unpack, make beds, set up our Warm Fuzzy bags, have dinner and attend Evening Gathering (EG). All of the EG's this week will follow the same format: read a passage of scripture, and discuss it. Among the scripted questions that guide the discussion is this one: "What do you not understand?" I burst into tears and bury my face in the T-shirt of the nearest teenager, who, bless him, simply holds onto me until the storm passes. So now, all 78 of the center's volunteers know that they have a grenade with the pin pulled among them. It's going to be a LOOONNNGGG week. My journal entry before bed that night reads:
"Lord, clear my mind. I'm angry - really angry. Angry."
DeeDee
Friday, July 13, 2012
All Packed Up....
We went to church tonight and loaded the vans. We'll leave tomorrow at 8, arriving for a covered-dish supper at a church along the way. Babygirl came along, ostensibly to help, but mostly because she knows she'll miss me - and I her.
I love her for so many, many reasons. Her sweetness, her clumsiness, her generosity and her courage. I love her uncomplaining tolerance of the intolerable. I love her smile, her brown eyes, her gentle hands. I love her unfailing loyalty, her hugs, and her laughter.
But what I love the most is how much she loves me. How much she gives of herself to whomever she loves.
I'm going to miss her.
DeeDee
I love her for so many, many reasons. Her sweetness, her clumsiness, her generosity and her courage. I love her uncomplaining tolerance of the intolerable. I love her smile, her brown eyes, her gentle hands. I love her unfailing loyalty, her hugs, and her laughter.
But what I love the most is how much she loves me. How much she gives of herself to whomever she loves.
I'm going to miss her.
DeeDee
Thursday, July 12, 2012
I Expected Panic....
I've sorted my tools, making sure each has my color-coded tape mark so I can find them in the heap that develops as the mission projects get underway. I've done enough laundry that I'll be able to pack my suitcase tomorrow morning. I've spent extra time at the office, trying as best I can to get ahead and not leave anything loose ends for anyone else next week.
I'm thinking about themes for devotions, since we will have to be the leaders of at least one morning "devo" next week. I've given thought to which ladders should go, and which should stay. I've charged all the batteries on my new drill set, and checked to make sure I bought the right blades for my little power saw. I changed the razors in my knives. And to guarantee that I won't have to paint, I included two brand-new paintbrushes. (It's like how having an umbrella seems to prevent rain.)
I had the oil changed. Had the tires checked. Then we discovered that the AC on the big green van (fondly known as "The Green Goose" for heaven alone only knows what reason) is not working. It didn't respond to simple fluid resuscitation, so instead of putting Rhonda the Honda in at the AC place, the Goose went in instead.
The mechanic started the Goose with some difficulty. He pulled it into the garage, looked the AC over, decided what parts he needed to order, and then was unable to restart it to get it back OUT of his garage. Seems that the starter is no good, so he's getting a new one and installing it with the AC parts in the morning.
We know that God loves us. But there are times when it is easier to be sure than others. I was about to hop in that van with a load of teenagers and drive a thousand miles onto one lane country roads. If there was going to be a problem, it's nothing short of a miracle that it happened HERE. I mean, seriously, how often does your car break down WHILE IT'S IN the garage??
When I made the choice to (re)join the mission team, I figured that at some point I'd hit some sort of panicky wall. After all, things have not exactly been going smoothly.
But I'll take this as a sign: God is in control of the details, even when we aren't aware of it - even when we don't want to let go of our illusion of control over those details.
DeeDee
I'm thinking about themes for devotions, since we will have to be the leaders of at least one morning "devo" next week. I've given thought to which ladders should go, and which should stay. I've charged all the batteries on my new drill set, and checked to make sure I bought the right blades for my little power saw. I changed the razors in my knives. And to guarantee that I won't have to paint, I included two brand-new paintbrushes. (It's like how having an umbrella seems to prevent rain.)
I had the oil changed. Had the tires checked. Then we discovered that the AC on the big green van (fondly known as "The Green Goose" for heaven alone only knows what reason) is not working. It didn't respond to simple fluid resuscitation, so instead of putting Rhonda the Honda in at the AC place, the Goose went in instead.
The mechanic started the Goose with some difficulty. He pulled it into the garage, looked the AC over, decided what parts he needed to order, and then was unable to restart it to get it back OUT of his garage. Seems that the starter is no good, so he's getting a new one and installing it with the AC parts in the morning.
We know that God loves us. But there are times when it is easier to be sure than others. I was about to hop in that van with a load of teenagers and drive a thousand miles onto one lane country roads. If there was going to be a problem, it's nothing short of a miracle that it happened HERE. I mean, seriously, how often does your car break down WHILE IT'S IN the garage??
When I made the choice to (re)join the mission team, I figured that at some point I'd hit some sort of panicky wall. After all, things have not exactly been going smoothly.
But I'll take this as a sign: God is in control of the details, even when we aren't aware of it - even when we don't want to let go of our illusion of control over those details.
DeeDee
Tuesday, July 10, 2012
Week Sixty-four - Taking A Break......
Since Babygirl's diagnosis of kidney failure in April of 2011, I have really not taken a break from the situation. When I was supposed to be on a mission trip last July, I stayed home to wait for Boo to arrive, painted Babygirl's bedroom and worried about the heat at her camp (http://kidneedsakidney.blogspot.com/2011/07/week-thirteen-surviving-summer.html). When I was supposed to be enjoying our beach vacation, I had daily, fraught reminders of just how NOT normal life had become (http://kidneedsakidney.blogspot.com/2011/08/week-sixteen-beach.html).
We've had three hospitalizations spread out over four months. Since Beach Week I doubt I've worked more than two full weeks, but none of the days I took off (save Memorial Day and Indepence Day) were vacation days, and on each of THOSE days I was on the road to or from Philadelphia. We've put over 10,000 miles of medical travel since January. I'm tired - mentally, emotionally and spiritually empty.
Babygirl's labs this week are better. Not great, but better - so we aren't being readmitted this week for another biopsy. She has an appointment on Monday, and Hubby is going to take her. Me? I'm leaving town.
This Saturday at 8 AM our mission team leaves for Appalachia. I have no idea where we are going, what we are doing, or even who is on the team this year. I am GOING. Worst case? Babygirl's numbers tank and she's readmitted for another biopsy. It's Hubby's turn LOL. Best case? They go and come home with an appointment in two weeks. Either way, I'm shutting my brain off and going to the land of NoCellPhoneService. I went shopping last night and bought a drill, granny panties comfy Walmart jeans. I'm swinging hammers, tightening loose screws and installing insulation, or maybe digging a ditch. I don't care. I'm GOING.
I'm the only person I know whose life is so pathetic that I plan on resting my heart and mind while working myself into dehydration and muscle cramps.
This is AWESOME.
DeeDee
We've had three hospitalizations spread out over four months. Since Beach Week I doubt I've worked more than two full weeks, but none of the days I took off (save Memorial Day and Indepence Day) were vacation days, and on each of THOSE days I was on the road to or from Philadelphia. We've put over 10,000 miles of medical travel since January. I'm tired - mentally, emotionally and spiritually empty.
Babygirl's labs this week are better. Not great, but better - so we aren't being readmitted this week for another biopsy. She has an appointment on Monday, and Hubby is going to take her. Me? I'm leaving town.
This Saturday at 8 AM our mission team leaves for Appalachia. I have no idea where we are going, what we are doing, or even who is on the team this year. I am GOING. Worst case? Babygirl's numbers tank and she's readmitted for another biopsy. It's Hubby's turn LOL. Best case? They go and come home with an appointment in two weeks. Either way, I'm shutting my brain off and going to the land of NoCellPhoneService. I went shopping last night and bought a drill, granny panties comfy Walmart jeans. I'm swinging hammers, tightening loose screws and installing insulation, or maybe digging a ditch. I don't care. I'm GOING.
I'm the only person I know whose life is so pathetic that I plan on resting my heart and mind while working myself into dehydration and muscle cramps.
This is AWESOME.
DeeDee
Sunday, July 8, 2012
Cacophony.....
I value silence. When I adopted Curlygirl, I discovered that there are people who not only do NOT value silence but thrive on chaos. In order to maintain my sanity, I became a morning person, arising early to enjoy the paper or a book on the porch before the day got crazy. It is still very important to me to have at least a little quiet time each day.
Still, one doesn't survive mothering up to seven kids at one time without adjusting to a little hullabaloo. But what amazes me is that I've learned to love it, at least a little at a time.
So today, when Curlygirl and Boo'sMommy were playing the new version of Monopoly with the radio blaring; and Squeaker's dad in the next room with something loud on the TV; and Babygirl rattling pans from the dishwasher while I tried not to trip over Boo and prepped dinner; and hubby running some power tool in the basement to classic rock, I didn't feel stressed. I felt blessed.
Sometimes there is great peace in cacophony. If the noise means that most of the people you love are safe under one roof, enjoying each other's company without strife, it is enough.
DeeDee
Still, one doesn't survive mothering up to seven kids at one time without adjusting to a little hullabaloo. But what amazes me is that I've learned to love it, at least a little at a time.
So today, when Curlygirl and Boo'sMommy were playing the new version of Monopoly with the radio blaring; and Squeaker's dad in the next room with something loud on the TV; and Babygirl rattling pans from the dishwasher while I tried not to trip over Boo and prepped dinner; and hubby running some power tool in the basement to classic rock, I didn't feel stressed. I felt blessed.
Sometimes there is great peace in cacophony. If the noise means that most of the people you love are safe under one roof, enjoying each other's company without strife, it is enough.
DeeDee
Saturday, July 7, 2012
Vive la Reveal.......
It's PARIS!
Make-A-Wish threw a party for Babygirl today at a local museum. It was amazing! They decorated the room with framed photos of famous French landmarks, using Babygirl's room colors of red, black and white. They served cookies shaped and painted like French flags. They had chocolate fondue, pizza, and a three-tiered cake decorated with the Eiffel tower (a gift from a baker whose daughter was a Make-A-Wish recipient in the earliest years of the program). We all wore moustaches and berets (including Squeaker LOL) and listened to French music.
Citygirl and Babygirl, ready for France!
So we get to go to France, seven days, six nights, four people. When? We don't know. Medically she is not stable enough to take such a trip, but hopefully it will be within a year - maybe in the spring. Meanwhile they will continue to get us ready, getting passports, and letting Babygirl select an itinerary. Paris Disney? Eiffel Tower Tour? Day at the Louvre? Tour Notre Dame? Boat ride up the Seine? Wow.
The party included gifts - a French phrase book, room decor, and gift cards. They contacted Babygirl's favorite local restaurant, and they gave her a gift card. There are cards for JC Penny, Walmart, and a family pass to the museum that hosted our party. We have a LOT of thank-you cards to write!
When the time comes, we will be given a limo ride to the airport. They include a per diem so we don't have to spend any money at all. Make-A-Wish in France will meet us and act as our hosts and guides. And the limo will pick us up when we arrive home again.
There is no way to tell you how exciting it is, and how excited our Wish-granters are too! They brought in a photographer for the event, and I had to laugh - she is the nurse at our doctor's office. It was wonderful to see her there.
I was exhausted by the time I came home. Aren't naps the BEST?
DeeDee
Make-A-Wish threw a party for Babygirl today at a local museum. It was amazing! They decorated the room with framed photos of famous French landmarks, using Babygirl's room colors of red, black and white. They served cookies shaped and painted like French flags. They had chocolate fondue, pizza, and a three-tiered cake decorated with the Eiffel tower (a gift from a baker whose daughter was a Make-A-Wish recipient in the earliest years of the program). We all wore moustaches and berets (including Squeaker LOL) and listened to French music.
Citygirl and Babygirl, ready for France!
So we get to go to France, seven days, six nights, four people. When? We don't know. Medically she is not stable enough to take such a trip, but hopefully it will be within a year - maybe in the spring. Meanwhile they will continue to get us ready, getting passports, and letting Babygirl select an itinerary. Paris Disney? Eiffel Tower Tour? Day at the Louvre? Tour Notre Dame? Boat ride up the Seine? Wow.
The party included gifts - a French phrase book, room decor, and gift cards. They contacted Babygirl's favorite local restaurant, and they gave her a gift card. There are cards for JC Penny, Walmart, and a family pass to the museum that hosted our party. We have a LOT of thank-you cards to write!
When the time comes, we will be given a limo ride to the airport. They include a per diem so we don't have to spend any money at all. Make-A-Wish in France will meet us and act as our hosts and guides. And the limo will pick us up when we arrive home again.
There is no way to tell you how exciting it is, and how excited our Wish-granters are too! They brought in a photographer for the event, and I had to laugh - she is the nurse at our doctor's office. It was wonderful to see her there.
I was exhausted by the time I came home. Aren't naps the BEST?
DeeDee
Wednesday, July 4, 2012
Week Sixty-three - Letting It Go.....
Mindfullness. I remember that word - being fully where you are, focused on NOW and not the gajillion or so things that you coudn't possible have any impact on by moving your focus to them anyway.
I'm still not very good at it.
Last night was another essentially sleepless one. The insomnia feels somewhat random to me, although I notice that it seems to occur on nights when I know I have to be driving a lot the next day. But I suspect last night was simply leftover adrenaline. The mention of the possibility of another hospital stay definitely squeezed my adrenal glands. And the fact that I wasted time trying to explain my feelings to my older brother made me more wound up.
For the most part I have accepted where I can and cannot get support. I know that my mom's dementia is advancing, and no longer try to redirect her when she asks the same question a hundred times, and rarely update her on day-to-day data because she can remember feeling bad about things, but not WHY she feels bad. I have good friends, one brother who expresses empathy, and a wonderful hubby. But the fact of the matter is that we rarely come down here together, so we both face most of the processing without each other.
I think I needed to just have a good cry, and it happened that I needed to do it when I was with someone who couldn't respond to that need. So although I didn't actually feel like crying in the night, I would have been better off if I could have. Poor hubby - it will all fall on him later one way or another, but he is without question one of the most empathetic people I know, so it will all work out.
So for today, here is my goal: To let it go. It's the Fourth. I'm going to make an awesome fruit salad that Babygirl can actually eat. I'm going to take her and my niece and nephew to one of the coolest parades around, eat food that's deliciously bad for me and enjoy the company of people I don't get to see nearly often enough. I'm going to ogle the Bolivian dancers and laugh at the Mummers and the Librarian's Drill Team (yeah, seriously - librarians marching with book carts - they rock). I'm likely to have a drink in a red Solo cup. And I've downloaded a coupon for 20% off at Perkins for the home journey. And I've made the home journey on the night of the Fourth many a time - we'll see fireworks all the way home from the tops of the mountains.
You know, I think putting that plan into writing just dropped my blood pressure about 20 points.
DeeDee
I'm still not very good at it.
Last night was another essentially sleepless one. The insomnia feels somewhat random to me, although I notice that it seems to occur on nights when I know I have to be driving a lot the next day. But I suspect last night was simply leftover adrenaline. The mention of the possibility of another hospital stay definitely squeezed my adrenal glands. And the fact that I wasted time trying to explain my feelings to my older brother made me more wound up.
For the most part I have accepted where I can and cannot get support. I know that my mom's dementia is advancing, and no longer try to redirect her when she asks the same question a hundred times, and rarely update her on day-to-day data because she can remember feeling bad about things, but not WHY she feels bad. I have good friends, one brother who expresses empathy, and a wonderful hubby. But the fact of the matter is that we rarely come down here together, so we both face most of the processing without each other.
I think I needed to just have a good cry, and it happened that I needed to do it when I was with someone who couldn't respond to that need. So although I didn't actually feel like crying in the night, I would have been better off if I could have. Poor hubby - it will all fall on him later one way or another, but he is without question one of the most empathetic people I know, so it will all work out.
So for today, here is my goal: To let it go. It's the Fourth. I'm going to make an awesome fruit salad that Babygirl can actually eat. I'm going to take her and my niece and nephew to one of the coolest parades around, eat food that's deliciously bad for me and enjoy the company of people I don't get to see nearly often enough. I'm going to ogle the Bolivian dancers and laugh at the Mummers and the Librarian's Drill Team (yeah, seriously - librarians marching with book carts - they rock). I'm likely to have a drink in a red Solo cup. And I've downloaded a coupon for 20% off at Perkins for the home journey. And I've made the home journey on the night of the Fourth many a time - we'll see fireworks all the way home from the tops of the mountains.
You know, I think putting that plan into writing just dropped my blood pressure about 20 points.
DeeDee
Tuesday, July 3, 2012
The Merry-Go-Round.......
The labs are in. Creatinine is back up to 1.1, back to where it was when they decided to admit her for biopsy, back to where it was when she started rejecting the kidney. Neutrophils are down to 2,000, a functional count, but dropping each time we've measured it since late May.
So we will have blood work here at home on Monday after increasing her anti-rejection meds - you know, the ones that might be killing her neutrophils.
This is one ugly merry-go-round.
If the counts don't improve we are looking at another biopsy, another admission.
Yup. I DO hate the phone calls.
DeeDee
So we will have blood work here at home on Monday after increasing her anti-rejection meds - you know, the ones that might be killing her neutrophils.
This is one ugly merry-go-round.
If the counts don't improve we are looking at another biopsy, another admission.
Yup. I DO hate the phone calls.
DeeDee
Monday, July 2, 2012
One Good, Deep Breath......
As much as I hate the phone calls, I have to say I hate it more when they don't call.
Babygirl and her BFF and I came to Philly yesterday with my Mom. We all had dinner with my brother and his wife, and settled Mom in for the night there. We, as always, stayed with my sister-in-law. I actually fell asleep before she came home from work!
The car of the week is a Volkswagon Jetta diesel (thanks, Tom and Erica! You were the first to volunteer a car, and hopefully the last we'll need!). It's a great ride, comfy seats, though Babygirl has discovered that leather gets HOT.
We had our appointment as usual, visited the Philadelphia Zoo (awesome), and came 'home' again to spend a couple of more days. None of the lab reports were available yet when we left the office, and usually they aren't all available, so we waited for the call to fill us in. Since her kidney function was a bit worse last week, I am, admittedly, anxious.
It's after five, there's no call.
Remind me to shut up and stop complaining, because I whine when they call, and worry when they don't!
Ugh. When people ask how she's doing these days, my answer is, "Today is a good day." We've been living moment to moment for weeks now. But emotionally, each lab test has weight. Each result reassures, or frightens. Last week was not reassuring, and I was hoping for better. Hoping, honestly, for one good, deep breath.
DeeDee
Babygirl and her BFF and I came to Philly yesterday with my Mom. We all had dinner with my brother and his wife, and settled Mom in for the night there. We, as always, stayed with my sister-in-law. I actually fell asleep before she came home from work!
The car of the week is a Volkswagon Jetta diesel (thanks, Tom and Erica! You were the first to volunteer a car, and hopefully the last we'll need!). It's a great ride, comfy seats, though Babygirl has discovered that leather gets HOT.
We had our appointment as usual, visited the Philadelphia Zoo (awesome), and came 'home' again to spend a couple of more days. None of the lab reports were available yet when we left the office, and usually they aren't all available, so we waited for the call to fill us in. Since her kidney function was a bit worse last week, I am, admittedly, anxious.
It's after five, there's no call.
Remind me to shut up and stop complaining, because I whine when they call, and worry when they don't!
Ugh. When people ask how she's doing these days, my answer is, "Today is a good day." We've been living moment to moment for weeks now. But emotionally, each lab test has weight. Each result reassures, or frightens. Last week was not reassuring, and I was hoping for better. Hoping, honestly, for one good, deep breath.
DeeDee
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