No, not homeward bound.
Homebound.
That is the term for children who are too ill to go to school every day.
In our school district, a letter is required from the child's doctor. A letter that says in no uncertain terms that this child is unable to attend school due to his/her illness or infirmity.
It frightened me, the ease with which that letter was obtained. No argument from the doctor. No questioning her ability to sit, her level of pain. Instead, the doctor hung up the phone, dictated the letter, and less than 12 hours later, it was in my hands.
The counselor at the school is a remarkable woman. Her goal is, always has been, to help Twinks however she can. So that Twinks can go to school in as much comfort as is possible. Endlessly patient, she has adjusted Twinks schedule, worked with teachers and administration, and continues to encourage Twinks to work toward our goal of full-time days at school.
Now the counselor quietly takes the letter, clips it to a bundle of forms, lays it carefully into a folder that I surmise must have Twinks name on it. She has a small, sad smile - and promises to send out a teacher that loves cats and gerbils. We talk for a few moments more; does Twinks have everything she needs at home? Is there anything in her school locker that we need? She walks with me to the door; the secretaries and the school principal offer hugs and cheery messages for The Twinkie.
I walk into our home, seeing it suddenly through fresh eyes. We will need to reorganize the study area that we have created for The Twinkie to accommodate the presence of the teacher who will come to our house three days a week. Three hours a week - the rest of the time, we will be working "independently", on our own, between visits.
Our bright, vibrant girl is fading before our eyes. Body racked by pain, her legs weak, she is waiting for the diagnosis on Thursday. We feel suspended in time until then; our life once again divided artificially by an appointment. "After Thursday, we can plan your birthday party better, because we'll know what is going to happen." "After Thursday, we will know more, and we can decide about that." "Let's wait and see what the doctor says on Thursday, OK?" It is a terrible feeling, to want Thursday to come, so that you can move on with your life - and to dread it at the same time - because you are terrified of what the doctor might say.
Homebound is where we are now. It is what we are.
It is not what we will always be.
Monday, January 30, 2006
Friday, January 27, 2006
A gift from a friend...
I'm on the phone, talking to a long-time friend. The winter sun bravely streams through the kitchen window, and slips across the tiles. For a moment, my mind flashes back to a time 12 years ago, when I was still pregnant, and waiting for Twinks to be born. I sat in this same spot that day, talking to this same friend, watching the spindly, anemic January sunbeams skitter across the floor.
I remember that the conversation was high-spirited that day. We were laughing over some of the rejected baby names that The Wrench and I had decided would probably scar our child for life. She was, as always, cheerful and supportive. She is one of those rare, wonderful people who truly *listens* to you. When you talk with her, she is focused on you, nothing else. She gives you this gift of pure attention; friendship at it's finest.
We're catching up - the last time we spoke was not long before Christmas when we invaded her office with armloads of Christmas cheer in the form of homemade baked goods. We disrupted her business for a good half-hour, laughter punctuating our conversation time and time again.
Today, we talk about our kids, and cats, and gerbils. We laugh (we laugh a lot during these calls) about local politics and national tv and terrible in-laws. We commiserate with each other about children that grow up too fast, and wonder where the years are slipping away to so quickly.
Somehow, she knew that today I needed this conversation. Today, I needed a little bit of Normal. I needed to sit in the gentle, yellow afternoon light and put aside the worries that are ever-present now. For twenty minutes, her friendship surrounded me like a warm blanket. It flowed around me, easing the ache in my heart, and soothing away my worries. For twenty minutes, she gave me this gift of her time, her friendship, and her unwavering attention. She was *there* for me, in every sense of the word.
I needed this afternoon chat today. I needed it like I need air to breathe. I didn't know it at the time, but I needed it. I needed the laughter. I needed this little piece of the regular world to cling to for the next week or so. I needed the break that the call afforded me.
Thank you, my friend.
Thank you for the gift you gave me today.
I remember that the conversation was high-spirited that day. We were laughing over some of the rejected baby names that The Wrench and I had decided would probably scar our child for life. She was, as always, cheerful and supportive. She is one of those rare, wonderful people who truly *listens* to you. When you talk with her, she is focused on you, nothing else. She gives you this gift of pure attention; friendship at it's finest.
We're catching up - the last time we spoke was not long before Christmas when we invaded her office with armloads of Christmas cheer in the form of homemade baked goods. We disrupted her business for a good half-hour, laughter punctuating our conversation time and time again.
Today, we talk about our kids, and cats, and gerbils. We laugh (we laugh a lot during these calls) about local politics and national tv and terrible in-laws. We commiserate with each other about children that grow up too fast, and wonder where the years are slipping away to so quickly.
Somehow, she knew that today I needed this conversation. Today, I needed a little bit of Normal. I needed to sit in the gentle, yellow afternoon light and put aside the worries that are ever-present now. For twenty minutes, her friendship surrounded me like a warm blanket. It flowed around me, easing the ache in my heart, and soothing away my worries. For twenty minutes, she gave me this gift of her time, her friendship, and her unwavering attention. She was *there* for me, in every sense of the word.
I needed this afternoon chat today. I needed it like I need air to breathe. I didn't know it at the time, but I needed it. I needed the laughter. I needed this little piece of the regular world to cling to for the next week or so. I needed the break that the call afforded me.
Thank you, my friend.
Thank you for the gift you gave me today.
Wednesday, January 18, 2006
All tied up
So, we went to the Pediatric Neurologist today.
Specialists offices tend to scare the hoopy-doopers right out of me. I find it extremely unnerving to realize that we have surpassed the limits of care that can be provided by our "regular" Pediatrician. There I stand at the reception window, staring at stacks and stacks of patient files - all of them at least two inches thick - wondering how many trips to this doctor it will be before The Twinkie's file begins to look like those.
The nurse calls us back through the doors, and we slowly, painstakingly follow her. The Twinkie knows that the she has to try to continue to walk, but it isn't easy - everything from the hips down feels like it's made of Jell-O, and it hurts as well. She's tripping over her own feet, barely able to put one foot down in front of the other. It's horrifying for me to watch, remembering that less than three weeks ago she could run...
Twinks is weighed, and measured; her blood pressure is taken. We move further down the hallway, windowless rooms opening off both sides. The faces of the parents within these rooms must surely reflect my own; I wonder if I look as haggard, and as worried as they do.
The Wrench is not here - he is unable to take off work to be here today. So, Twinks and I are going this alone, and we sit together in the huge exam room, huddled against the glare of the fluorescent lights, trying to remain cheerful. We are in the middle of one of our silly exchanges when the PN walks in. I am mock-seriously threatening to feed The Twinkie to the pigs, and she is giggling and laughing at me, knowing full well that [a] the pigs wouldn't have her, and [b] I wouldn't let them.
The PN is a pleasant enough, if somewhat nondescript man. He is quiet, one might even say reserved, but long before the appointment is over he loosens up, teasing The Twinkie. He listens very carefully to her descriptions of how she feels, what happens when she tries to walk. He checks her reflexes, her ability to feel sensation, her ability to walk. All in all, it is nearly 45 minutes later that he rises from his chair, and tells us that he has a preliminary diagnosis that he wants to confirm with an MRI.
Tethered cord.
If the PN is correct, Twinks spinal cord is (literally) tied down, and is being stretched and pulled. The problem has likely been there since before she was born... but was likely triggered by one of her recent growth spurts. The symptoms match well enough, and because The Twinkie was born with feet and leg problems, it all fits together.
Now we wait - all tied up in knots - for the MRI. The MRI will tell the PN if he is correct - and will allow him to "see" exactly what is going on in and around her spinal cord.
All tied up, because something that shouldn't be - might be - tied down.
Specialists offices tend to scare the hoopy-doopers right out of me. I find it extremely unnerving to realize that we have surpassed the limits of care that can be provided by our "regular" Pediatrician. There I stand at the reception window, staring at stacks and stacks of patient files - all of them at least two inches thick - wondering how many trips to this doctor it will be before The Twinkie's file begins to look like those.
The nurse calls us back through the doors, and we slowly, painstakingly follow her. The Twinkie knows that the she has to try to continue to walk, but it isn't easy - everything from the hips down feels like it's made of Jell-O, and it hurts as well. She's tripping over her own feet, barely able to put one foot down in front of the other. It's horrifying for me to watch, remembering that less than three weeks ago she could run...
Twinks is weighed, and measured; her blood pressure is taken. We move further down the hallway, windowless rooms opening off both sides. The faces of the parents within these rooms must surely reflect my own; I wonder if I look as haggard, and as worried as they do.
The Wrench is not here - he is unable to take off work to be here today. So, Twinks and I are going this alone, and we sit together in the huge exam room, huddled against the glare of the fluorescent lights, trying to remain cheerful. We are in the middle of one of our silly exchanges when the PN walks in. I am mock-seriously threatening to feed The Twinkie to the pigs, and she is giggling and laughing at me, knowing full well that [a] the pigs wouldn't have her, and [b] I wouldn't let them.
The PN is a pleasant enough, if somewhat nondescript man. He is quiet, one might even say reserved, but long before the appointment is over he loosens up, teasing The Twinkie. He listens very carefully to her descriptions of how she feels, what happens when she tries to walk. He checks her reflexes, her ability to feel sensation, her ability to walk. All in all, it is nearly 45 minutes later that he rises from his chair, and tells us that he has a preliminary diagnosis that he wants to confirm with an MRI.
Tethered cord.
If the PN is correct, Twinks spinal cord is (literally) tied down, and is being stretched and pulled. The problem has likely been there since before she was born... but was likely triggered by one of her recent growth spurts. The symptoms match well enough, and because The Twinkie was born with feet and leg problems, it all fits together.
Now we wait - all tied up in knots - for the MRI. The MRI will tell the PN if he is correct - and will allow him to "see" exactly what is going on in and around her spinal cord.
All tied up, because something that shouldn't be - might be - tied down.
Monday, January 16, 2006
Moving at the speed of pain
We got home late late late Tuesday evening from Hospital City.
To say that things did not go as I had hoped would be a gross understatement.
The routine of the trip lulled both Twinks and I into a false sense of comfort. All the way down to Hospital City, whenever she hurt, whenever she thought she couldn't take another step, I would remind her that we were just hours away from seeing The Doctor. We both thought that he would have the answer to what was happening. He could explain the weakness in her legs that robs of the ability to walk further than a few steps. He would tell us why she is getting dizzy. He would know what to do about the fatigue, and most of all, the pain that never ends.
But he didn't.
Instead, he told us to go home and find a pediatric neurologist. No further explanation; there was not time. The Clinic was full, and he was literally being pulled in two directions at once by staff members. The Care Coordinators who came into the exam room to counsel us wore expressions of concern that seemed to me to be touched with pity. They made sure that I had all the necessary information, and then they left the room. We went back to the Clinic Waiting Rooms to listen for the page to Orthotics & Prosthetics. Big J checked over Twinks braces, making sure that they fit properly, that no repairs were needed. He made an adjustment, and made Twinks laugh and smile, and then we were... done.
We went to The Mall that is just down the street, and around the corner from The Hospital. We had a light snack, and tried to walk around a bit. We didn't get far; even going to the music store didn't last long. She limped out to the parking lot, and The Twinkie had fallen asleep before we even made the outskirts of Hospital City.
Once again, I found myself alone with my thoughts as I drove us home. I was not in the mood for the light jazz that I usually listen to; I didn't even bother jacking in the MP3 player. There was nothing on the radio, either - nothing fit my mood.
So, I turned everything over in my mind. Time and time again, I tried to make these pieces of the puzzle fit - to make sense of everything. Why a neurologist? What could The Doctor be thinking? Why wouldn't he at least tell us what prompted his recommendation? What could be causing these symptoms?
Naturally, as soon as I got home, I began to search The Internet for answers. When The Wrench arrived home from work, he joined in, and we kept our little home network buzzing, sending links back and forth, while we tried to figure out what could be going on. What we found left us with more questions than answers.
On Wednesday, I located a Pediatric Neurologist, and made an appointment for the first opening he had available. The PN is in The Greater Metro area, so we will drive about 20 minutes to get there, instead of 8 or 9 hours. We also had a bit of good news in the form of the Pediatric Orthopedist, who comes to The Greater Metro now twice a month, from The State Capital. The PO has been there all along, but when The Twinkie was born, his practice was closed to new patients, because he is the only board-certified PO in the state, he is typically overwhelmed. The Twinkie will now have a PO here at home that we can see, instead of driving 400 miles for a doctors appointment. The local PO can coordinate care with The Hospital; if it saves us even one trip a year, it will be well worth it. We have an appointment with him in February. It is just as well, for as of this writing, she would not be able to make the trip to Hospital City and back again.
Since Tuesday last, The Twinkie has continued to deteriorate. She has not been to school at all, and her symptoms seem to be getting worse. The Wrench scoops her up, and carries her around the house, to the minivan, from here to there, his strong arms temporarily supplanting her need for the wheelchair or walker.
I realize that tomorrow we likely won't be much closer to actual answers about what is going on. I know that tests will have to be performed, then the results analyzed. I know that it may take time to figure out what is going on with our sweet little girl. I understand that it may involve more than one "discipline"; that indeed, we may have several specialists before the final chapter is written.
Until then, we move at the speed of pain.
To say that things did not go as I had hoped would be a gross understatement.
The routine of the trip lulled both Twinks and I into a false sense of comfort. All the way down to Hospital City, whenever she hurt, whenever she thought she couldn't take another step, I would remind her that we were just hours away from seeing The Doctor. We both thought that he would have the answer to what was happening. He could explain the weakness in her legs that robs of the ability to walk further than a few steps. He would tell us why she is getting dizzy. He would know what to do about the fatigue, and most of all, the pain that never ends.
But he didn't.
Instead, he told us to go home and find a pediatric neurologist. No further explanation; there was not time. The Clinic was full, and he was literally being pulled in two directions at once by staff members. The Care Coordinators who came into the exam room to counsel us wore expressions of concern that seemed to me to be touched with pity. They made sure that I had all the necessary information, and then they left the room. We went back to the Clinic Waiting Rooms to listen for the page to Orthotics & Prosthetics. Big J checked over Twinks braces, making sure that they fit properly, that no repairs were needed. He made an adjustment, and made Twinks laugh and smile, and then we were... done.
We went to The Mall that is just down the street, and around the corner from The Hospital. We had a light snack, and tried to walk around a bit. We didn't get far; even going to the music store didn't last long. She limped out to the parking lot, and The Twinkie had fallen asleep before we even made the outskirts of Hospital City.
Once again, I found myself alone with my thoughts as I drove us home. I was not in the mood for the light jazz that I usually listen to; I didn't even bother jacking in the MP3 player. There was nothing on the radio, either - nothing fit my mood.
So, I turned everything over in my mind. Time and time again, I tried to make these pieces of the puzzle fit - to make sense of everything. Why a neurologist? What could The Doctor be thinking? Why wouldn't he at least tell us what prompted his recommendation? What could be causing these symptoms?
Naturally, as soon as I got home, I began to search The Internet for answers. When The Wrench arrived home from work, he joined in, and we kept our little home network buzzing, sending links back and forth, while we tried to figure out what could be going on. What we found left us with more questions than answers.
On Wednesday, I located a Pediatric Neurologist, and made an appointment for the first opening he had available. The PN is in The Greater Metro area, so we will drive about 20 minutes to get there, instead of 8 or 9 hours. We also had a bit of good news in the form of the Pediatric Orthopedist, who comes to The Greater Metro now twice a month, from The State Capital. The PO has been there all along, but when The Twinkie was born, his practice was closed to new patients, because he is the only board-certified PO in the state, he is typically overwhelmed. The Twinkie will now have a PO here at home that we can see, instead of driving 400 miles for a doctors appointment. The local PO can coordinate care with The Hospital; if it saves us even one trip a year, it will be well worth it. We have an appointment with him in February. It is just as well, for as of this writing, she would not be able to make the trip to Hospital City and back again.
Since Tuesday last, The Twinkie has continued to deteriorate. She has not been to school at all, and her symptoms seem to be getting worse. The Wrench scoops her up, and carries her around the house, to the minivan, from here to there, his strong arms temporarily supplanting her need for the wheelchair or walker.
I realize that tomorrow we likely won't be much closer to actual answers about what is going on. I know that tests will have to be performed, then the results analyzed. I know that it may take time to figure out what is going on with our sweet little girl. I understand that it may involve more than one "discipline"; that indeed, we may have several specialists before the final chapter is written.
Until then, we move at the speed of pain.
Sunday, January 08, 2006
...And the New Year is Here...
Sorry for the interruption.... We left off at New Years Eve, right? The New Year arrived a little more quietly at our house than it did other places, but with no lack of plans, and hopes, and wishes.
Twinks was out like a light before long - she kissed everyone, and fell asleep before the first hour of the New Year was gone. The Wrench and I sat quietly in the living room, surrounded by the flotsam and jetsam of the Holidays, watching as the rest of the world celebrated.
For our family, every new year is our time to take stock, and give thanks for our blessings. Perhaps it is because The Wrench and I were married on New Year's Eve 19 (!) years ago. Birthdays and anniversaries tend to make humans contemplative to begin with; when your special day falls on one that the entire world celebrates, it seems to add even more depth and meaning.
(Note to self: Check calendar. Count carefully. 19 years? Really? No way... )
The Wrench is a sentimental softy at heart. Every year, on our anniversary, at exactly 2:00 pm (the time our wedding ceremony started) he solemnly puts the videotape in the VCR, and we sit together, and watch our wedding again. To some, it may seem like a silly little ritual; to us, it is a yearly reminder of how we felt that day - of why we were there that day - of how happy we were to be together, to be married. The reminder carries us forward through the year. It shimmers in the air between us, it envelopes us, it embraces us. It has kept us together through times that were tougher than anything I would have ever imagined as a new bride; the promises made - and since kept - by us together at that altar still ring true each year.
This past year, as you may know, has been difficult. Our little family has struggled so hard against The Twinkie's pain. But we have never lost sight of that day, 19 years ago, when The Wrench and I "founded" our little family, standing in pools of gently colored sunlight that streamed through the stained-glass windows of the old stone church.
This new year is going to bring with it some new challenges. The Twinkie is growing fast, and so is her pain. I have a new contract, with a new client - and an opportunity to make more money than I have in years... if I can keep a handle on things. The Wrench is watching with some trepidation as the company he works for continues to struggle to remain competitive. The calendar is already crowded; the OFG alone could keep us busy all year, and there are dates for Girl Scouts, Church events, Shriner events and more.
And, as always, another trip to Hospital City looms on the horizon. Monday and Tuesday next, to be exact.
Because, through all of the Holiday Hoopla, through all of the misery of being sick at Christmas, through everything that has gone on in the last month or so... the pain remains.
And in just the last two days, things have taken yet another new turn. Now when Twinks stands up after prolonged sitting, she doesn't hurt - because her legs have gone numb. As in, poke-a-pin-in-me, I-feel-nothing numb. It terrifies her: She can't feel her legs at all, and although she can walk, she feels like at any moment her legs will collapse out from underneath her. If she remains upright - standing - long enough, the feeling, the sensation returns to her legs with a swift wave of pain that washes down her legs.
And so once again, we as parents, are helpless. All we can do is hold her, comfort her, remind her that on Tuesday - we only have to make it to Tuesday - we will see The Doctor, and he will help us find out what is going on. The same countdown, the same preparations for the trip to Hospital City. The routine, I believe, is a comfort to her - she knows that we wouldn't go see The Pin Man if we weren't really going to The Hospital. She knows that we wouldn't be gathering the toys, and getting out the suitcases if we weren't really going. So that is a small comfort - because she knows that these things mean we are just hours away from leaving.
Monday morning, The Twinkie and I will again drive to Hospital City. We will leave early, heading southwards through the cold January air towards the warmer climate that surrounds Hospital City. Once again, we will stay at the same little hotel, eat our dinner at the same steakhouse, and retire early. On Tuesday morning, we will rise early, in order to pack everything back into the van, and be at The Hospital before 7:00 am. We will eat our breakfast there, and visit our friends around The Hospital. We will wait for the call to the exam rooms; hoping and praying that The Doctor can help Twinks... again.
And Tuesday evening, I hope and pray that we are northward bound again - heading home safely, with answers, and solutions. And one pain-free Twinkie in the back seat.
Twinks was out like a light before long - she kissed everyone, and fell asleep before the first hour of the New Year was gone. The Wrench and I sat quietly in the living room, surrounded by the flotsam and jetsam of the Holidays, watching as the rest of the world celebrated.
For our family, every new year is our time to take stock, and give thanks for our blessings. Perhaps it is because The Wrench and I were married on New Year's Eve 19 (!) years ago. Birthdays and anniversaries tend to make humans contemplative to begin with; when your special day falls on one that the entire world celebrates, it seems to add even more depth and meaning.
(Note to self: Check calendar. Count carefully. 19 years? Really? No way... )
The Wrench is a sentimental softy at heart. Every year, on our anniversary, at exactly 2:00 pm (the time our wedding ceremony started) he solemnly puts the videotape in the VCR, and we sit together, and watch our wedding again. To some, it may seem like a silly little ritual; to us, it is a yearly reminder of how we felt that day - of why we were there that day - of how happy we were to be together, to be married. The reminder carries us forward through the year. It shimmers in the air between us, it envelopes us, it embraces us. It has kept us together through times that were tougher than anything I would have ever imagined as a new bride; the promises made - and since kept - by us together at that altar still ring true each year.
This past year, as you may know, has been difficult. Our little family has struggled so hard against The Twinkie's pain. But we have never lost sight of that day, 19 years ago, when The Wrench and I "founded" our little family, standing in pools of gently colored sunlight that streamed through the stained-glass windows of the old stone church.
This new year is going to bring with it some new challenges. The Twinkie is growing fast, and so is her pain. I have a new contract, with a new client - and an opportunity to make more money than I have in years... if I can keep a handle on things. The Wrench is watching with some trepidation as the company he works for continues to struggle to remain competitive. The calendar is already crowded; the OFG alone could keep us busy all year, and there are dates for Girl Scouts, Church events, Shriner events and more.
And, as always, another trip to Hospital City looms on the horizon. Monday and Tuesday next, to be exact.
Because, through all of the Holiday Hoopla, through all of the misery of being sick at Christmas, through everything that has gone on in the last month or so... the pain remains.
And in just the last two days, things have taken yet another new turn. Now when Twinks stands up after prolonged sitting, she doesn't hurt - because her legs have gone numb. As in, poke-a-pin-in-me, I-feel-nothing numb. It terrifies her: She can't feel her legs at all, and although she can walk, she feels like at any moment her legs will collapse out from underneath her. If she remains upright - standing - long enough, the feeling, the sensation returns to her legs with a swift wave of pain that washes down her legs.
And so once again, we as parents, are helpless. All we can do is hold her, comfort her, remind her that on Tuesday - we only have to make it to Tuesday - we will see The Doctor, and he will help us find out what is going on. The same countdown, the same preparations for the trip to Hospital City. The routine, I believe, is a comfort to her - she knows that we wouldn't go see The Pin Man if we weren't really going to The Hospital. She knows that we wouldn't be gathering the toys, and getting out the suitcases if we weren't really going. So that is a small comfort - because she knows that these things mean we are just hours away from leaving.
Monday morning, The Twinkie and I will again drive to Hospital City. We will leave early, heading southwards through the cold January air towards the warmer climate that surrounds Hospital City. Once again, we will stay at the same little hotel, eat our dinner at the same steakhouse, and retire early. On Tuesday morning, we will rise early, in order to pack everything back into the van, and be at The Hospital before 7:00 am. We will eat our breakfast there, and visit our friends around The Hospital. We will wait for the call to the exam rooms; hoping and praying that The Doctor can help Twinks... again.
And Tuesday evening, I hope and pray that we are northward bound again - heading home safely, with answers, and solutions. And one pain-free Twinkie in the back seat.
Saturday, January 07, 2006
Christmas has come, and gone...
Well, it appears that I have (yet again) been remiss in updating my blog. Not only that, but I have not even had a chance to read any of my favorite blogs in weeks. I am truly blog-deficient.
Life has been *just that much fun*.
Let's see... where did we leave off? Oh yes - I asked Santa not to bring something, but to take it away - Twinks pain, that is.
Sorry to say that the Jolly Old Elf himself was unable to comply this year.
The pediatrician finally called to say that the test results had come back negative. The Wrench and I had spent a week drenched in a terrible cold sweat, praying that it wasn't this or that, devouring huge chunks of medical websites in vain attempts to find the cause or cure for The Twinkies pain. We were relieved, but even more sad than before. We filled the prescription for the pain medication, and cajoled The Twinkie into taking it. It left her light-headed and giddy when she was awake; she moaned and cried out all through her sleep. She had a first-class hangover every morning, and as the days passed, so did the effectiveness of the drug. Before long, it was obvious that it wasn't sufficient to keep the pain at bay.
So, we called The Hospital. We are going back to Clinic on Tuesday.
But, to get back to our recap, there we were, just days away from Christmas. The Twinkie's pain was raging, and The Wrench and I were both nearly insane from the lack of sleep, and the inability to do much more than hold her, and cry with her. Merry Christmas, indeed. She missed days and days of school because of the pain; she couldn't concentrate at all, never mind getting comfortable. We were all miserable.
Then, she got sick.
Running a fever, dizzy, throat and chest ached from coughing, there was no place that was comfortable. Her fever would spike, and she would be incoherent. When she wasn't sleeping, she would lie listlessly on the couch, watching - but not really watching - television. This started on December 22. Her fever didn't break until Christmas Eve. Then, because our pediatrician said that she had to be fever-free for 24 hours before she could be considered no longer contagious, she had to miss the annual family Christmas (Eve) party at Grandma & Grandpa's house.
We dispatched Daddy with our presents, and best wishes for everyone, and waited. First he came home with heaping plates of turkey that Aunt L had roasted, and homemade mashed potatoes, and sweet potatoes and stuffing. There was even gravy, and hot rolls, and (of course!) pumpkin pie and pecan pie, and mincemeat too. Then, after La Twinks and I ate our Christmas Dinner, The Wrench went back over to the party and brought back the gifts. And, while she truly did get some wonderful and thoughtful presents, it would be days before she really felt up to *enjoying* them.
No Midnight Mass on Christmas Eve. Instead, we watched from home, on TV; Twinks snoozed through much of it.
She slept for a few hours, and then awoke in the wee hours of the morning. The Wrench and I had just finished helping Santa unload the sleigh, when she crept back down the hallway. We got her back to bed, and after a time she fell asleep again. Just as The Wrench and I thought that we might get an hour or two of sleep, she woke again, this time ready to dig into the pile of gifts that were waiting for her.
Christmas morning was a record-breaking early for us - 5:00 am! Luckily, I had the presence of mind to throw a roast into the CrockPot, so that we had that cooking while we slept the rest of the morning away. After we all got up again, I finished making our Christmas Day dinner, and we dined on "Roast Beast" and carrots and potatoes and green beans, and homemade cornbread, with brownies warm from the oven for dessert. And now I am hungry just remembering this...
Fast forward a week. (Yes, a week. My, how time flies regardless of the amount of fun involved...) The Twinkie is *still* sick - still coughing, although no longer running a fever. Because her immune system is still somewhat fragile, we limit our usual Holiday merriment to a brief (but delicious) foray to our favorite Tex-Mex cantina to celebrate our 19th wedding anniversary. The manager favors us with a huge chocolate fudge walnut dessert thing that includes ice cream and cheesecake. Sounds weird, tastes totally incredible. The three of us dig in; it is warm and cold and chewy and gooey all at the same time. We stagger out into the frosty Eve of the New Year, and ride home in a merry and noisy fashion - the three of us, our little family - closing out the year together. We plan and dream about 2006; wildly optimistic, and hopped up on hot fudge, we collapse on the living room furniture, and watch the rest of the world celebrate via the television. There will be no wild parties for us; no fireworks or champagne. But we welcome the New Year in our own way, and most importantly, together.
Through all of this, the pain has not stopped.
Neither has The Twinkie.
Now - we need to fast forward again... and see if we can get caught up before we leave for Hospital City again on Monday...
Life has been *just that much fun*.
Let's see... where did we leave off? Oh yes - I asked Santa not to bring something, but to take it away - Twinks pain, that is.
Sorry to say that the Jolly Old Elf himself was unable to comply this year.
The pediatrician finally called to say that the test results had come back negative. The Wrench and I had spent a week drenched in a terrible cold sweat, praying that it wasn't this or that, devouring huge chunks of medical websites in vain attempts to find the cause or cure for The Twinkies pain. We were relieved, but even more sad than before. We filled the prescription for the pain medication, and cajoled The Twinkie into taking it. It left her light-headed and giddy when she was awake; she moaned and cried out all through her sleep. She had a first-class hangover every morning, and as the days passed, so did the effectiveness of the drug. Before long, it was obvious that it wasn't sufficient to keep the pain at bay.
So, we called The Hospital. We are going back to Clinic on Tuesday.
But, to get back to our recap, there we were, just days away from Christmas. The Twinkie's pain was raging, and The Wrench and I were both nearly insane from the lack of sleep, and the inability to do much more than hold her, and cry with her. Merry Christmas, indeed. She missed days and days of school because of the pain; she couldn't concentrate at all, never mind getting comfortable. We were all miserable.
Then, she got sick.
Running a fever, dizzy, throat and chest ached from coughing, there was no place that was comfortable. Her fever would spike, and she would be incoherent. When she wasn't sleeping, she would lie listlessly on the couch, watching - but not really watching - television. This started on December 22. Her fever didn't break until Christmas Eve. Then, because our pediatrician said that she had to be fever-free for 24 hours before she could be considered no longer contagious, she had to miss the annual family Christmas (Eve) party at Grandma & Grandpa's house.
We dispatched Daddy with our presents, and best wishes for everyone, and waited. First he came home with heaping plates of turkey that Aunt L had roasted, and homemade mashed potatoes, and sweet potatoes and stuffing. There was even gravy, and hot rolls, and (of course!) pumpkin pie and pecan pie, and mincemeat too. Then, after La Twinks and I ate our Christmas Dinner, The Wrench went back over to the party and brought back the gifts. And, while she truly did get some wonderful and thoughtful presents, it would be days before she really felt up to *enjoying* them.
No Midnight Mass on Christmas Eve. Instead, we watched from home, on TV; Twinks snoozed through much of it.
She slept for a few hours, and then awoke in the wee hours of the morning. The Wrench and I had just finished helping Santa unload the sleigh, when she crept back down the hallway. We got her back to bed, and after a time she fell asleep again. Just as The Wrench and I thought that we might get an hour or two of sleep, she woke again, this time ready to dig into the pile of gifts that were waiting for her.
Christmas morning was a record-breaking early for us - 5:00 am! Luckily, I had the presence of mind to throw a roast into the CrockPot, so that we had that cooking while we slept the rest of the morning away. After we all got up again, I finished making our Christmas Day dinner, and we dined on "Roast Beast" and carrots and potatoes and green beans, and homemade cornbread, with brownies warm from the oven for dessert. And now I am hungry just remembering this...
Fast forward a week. (Yes, a week. My, how time flies regardless of the amount of fun involved...) The Twinkie is *still* sick - still coughing, although no longer running a fever. Because her immune system is still somewhat fragile, we limit our usual Holiday merriment to a brief (but delicious) foray to our favorite Tex-Mex cantina to celebrate our 19th wedding anniversary. The manager favors us with a huge chocolate fudge walnut dessert thing that includes ice cream and cheesecake. Sounds weird, tastes totally incredible. The three of us dig in; it is warm and cold and chewy and gooey all at the same time. We stagger out into the frosty Eve of the New Year, and ride home in a merry and noisy fashion - the three of us, our little family - closing out the year together. We plan and dream about 2006; wildly optimistic, and hopped up on hot fudge, we collapse on the living room furniture, and watch the rest of the world celebrate via the television. There will be no wild parties for us; no fireworks or champagne. But we welcome the New Year in our own way, and most importantly, together.
Through all of this, the pain has not stopped.
Neither has The Twinkie.
Now - we need to fast forward again... and see if we can get caught up before we leave for Hospital City again on Monday...
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