I am overdue in writing about a magical day, but I didn't want to let the story slip by without being told.
A week ago Sunday (8/16), Abbie and I, along with her nurse Leila, met my friend Nina at the ballet!
Ballet Hawaii has a 3-week summer intensive, combining local dancers with professionals from the mainland. At the end of that whirlwind 3 weeks, they stage a complete production, with this summer's offering being Peter Pan. Could be there be a more perfect first-time ballet for an adventurous girl like Abbie?
The ushers and fellow patrons were so kind, and we were easily seated and ready, complete with the light-up Tinkerbell wand Nina gave Abbie. I could not believe that Abbie was finally going to see real ballerinas, after wearing out so many DVDs watching them.
As the curtain rose to reveal an enormous, beautifully decorated stage I think the joy temporarily propelled me out of my body, to observe the whole thing from above. After a while, I noticed that Abbie, being seated at the end of the aisle, wasn't getting the best view. So, I moved her onto my lap and her experience really began.
Magical...truly, truly magical. I wanted to bottle those moments to keep forever. We were at the ballet, listening to lush, enveloping music, watching lithe, joyful bodies, and merry, rascally Lost Boys. It was a moment I envisioned the night Abbie was born -- a vision that had drifted away to the point of disintegration until Nina invited us to join her. How thankful I am for precious friends who restore lost hopes.
I was reminded that, although others may view her as limited, Abbie has a big life. During intermission, folks were filing past to go outside for refreshments. As one particular group of girls stepped by, one said, "Oh, hi Abbie!" I still don't know who she was, but my heart leapt that Abbie had a friend there. I was also reminded that we are never alone, even when we feel lonely. A gentleman approached just before the show started to let me know that he and his wife still pray for Abbie daily. Wow...how do you thank someone for that??
As Wendy and her brothers flew back through the bedroom window, I whispered in Abbie's ear, "They're HOME!" She grinned so broadly that Nina saw her dimples in the dark. Even adventurous girls realize that home is a very nice place to be!
I was still trying to process the whole event as we strolled outside to the stage door. Nina's good friend is the artistic director of the ballet, and we hoped that she would facilitate Abbie actually meeting some of the ballerinas. Since we were among the last to leave the theater there was already quite a throng gathered outside the door. But, there was Pam -- even amidst of the closing show hullabaloo -- outside looking for Abbie. As soon as she saw us she parted the crowd to usher Abbie inside. We met several of the Lost Boys, some of the fairies, and the hilarious, scene-stealing crocodile. And then, Pam escorted us onto the stage...
There she was, on the big stage, looking out at all those seats -- my amazing, brave ballerina. I could not stop the tears then.
A keepsake day, to be sure. And, a reminder that though the route of our dreams may change, they do not have to die.
Bless you, Nina, for making one of those dreams come true!
Monday, August 24, 2009
Monday, July 27, 2009
Another New Car
After the thrilling surprise of the power chair on Monday, I thought that would assuredly top the list of This Week's Highlights. Well, perhaps it's still tied for the lead, but there weren't any dull moments this week.
On Friday morning I awoke looking forward to digging into our last big box project, hoping to finally reclaim our living room from the Public Storage brown cardboard decor we had going on. Kyle awoke, with a terribly swollen throat, and changed those plans.
After seeing the doctor, we went to the lab for bloodwork. I waited just outside the lab door, by the elevator. I smiled when I saw him coming, looking rather pale. He said, "Oh, Mom, I don't feel so good" and gave me a hug. I love it when my big boys do that. Then, it became a really big hug. "Oh...he is so sweet!!!" I thought. Whoops...wait a minute, he wasn't showing me affection, he was passing out in my arms. Cold. I couldn't hold him up, but managed to break his fall to the floor. So, there he lay, completely out, right in front of the elevators. The poor folks trying to get off were quite shocked when the doors opened.
The hospital's rapid response team arrived very quickly, just as Kyle began to come around. A wheelchair ride to the ER, a wide-open IV of fluids and some steroids had Kyle feeling much better by the time we got the diagnosis: mononucleosis. Ugh. His pediatrician had suspected this, and warned that if he did have it she wouldn't clear him to play contact sports for three months, because of swelling in his spleen. There goes this year's water polo season!
He's been utterly miserable and in great pain. His throat is so swollen that eating solids is completely out, while even drinking is difficult. We would so appreciate your prayers for his comfort and healing!
On the upside, we met another of the cadre of wheelchair technician angels yesterday. Pete brought the new stroller that we had ordered and anxiously anticipated. During months of googling "reclining wheelchair" I found an amazing chair that has all the features I wanted. But there was more...it has an innovative design that may help Abbie's posture, muscle tone, and ability to work with her hands.
Here's our new "Thevo Twist"
One special feature is has is flexible lateral supports -- those black things sticking out midway up her seat. In normal wheelchairs that is exactly what they do...stick straight out to help keep the child sitting straight. But, often they end up getting is the way of the arms, and not being a good fit. These ones, while retaining some rigidity, wrap around Abbie's midsection and buckle together. What a difference this has made in keeping her back straight! And, after 5 years we finally have a head rest that works and keeps her head aligned with her body -- woo-hoo!
It reclines all the way back, and has already proven a GREAT place to change Abbie without having to transfer her. This means we can always keep her clean and comfortable no matter where we are at; important now that she has outgrown the changing stations in public restrooms.
This is what is so different about it:
The back of the chair is not solid, but is constructed of rows of these sensors. When Abbie's body moves, these respond, giving her input that helps her know where her body is in space. This specific type of input has always been very helpful to Abbie, and leads to her sitting up straighter, having more head control, and relaxing and moving more fluidly. The suspension on the stroller is also adjustable. With the pull of a pin, the shock system is locked, so that the Abbie will feel every bump and jiggle...leading to even more sensory input for her. I had high hopes for this stroller, and now, actually having it here with Abbie, it has far exceeded them.
We purchased a new car seat from the same company. It is very adjustable and supportive, but the coolest part is that it has an iPod plug at at the bottom of the seat that feeds to speakers situated within the head rest. I plugged my iPod into the seat and let Abbie listen. This is her response:
We purchased both of these items from a company called "Exomotion" www.exomotion.com. They are the only American importer for these, produced by Thomashilfen in Germany. Exomotion is located in Seattle, and I cannot say enough about their terrific customer service. If you have a child who may be in need of a new chair in the near future, I urge you to check out what they have. Getting this chair has been life-changing, and I know other wheelchair families will recognize that statement is not hyperbole.
As this week comes to a close, I just feel very, very blessed. I pray as you reflect on your life, that same sense comes over you!
On Friday morning I awoke looking forward to digging into our last big box project, hoping to finally reclaim our living room from the Public Storage brown cardboard decor we had going on. Kyle awoke, with a terribly swollen throat, and changed those plans.
After seeing the doctor, we went to the lab for bloodwork. I waited just outside the lab door, by the elevator. I smiled when I saw him coming, looking rather pale. He said, "Oh, Mom, I don't feel so good" and gave me a hug. I love it when my big boys do that. Then, it became a really big hug. "Oh...he is so sweet!!!" I thought. Whoops...wait a minute, he wasn't showing me affection, he was passing out in my arms. Cold. I couldn't hold him up, but managed to break his fall to the floor. So, there he lay, completely out, right in front of the elevators. The poor folks trying to get off were quite shocked when the doors opened.
The hospital's rapid response team arrived very quickly, just as Kyle began to come around. A wheelchair ride to the ER, a wide-open IV of fluids and some steroids had Kyle feeling much better by the time we got the diagnosis: mononucleosis. Ugh. His pediatrician had suspected this, and warned that if he did have it she wouldn't clear him to play contact sports for three months, because of swelling in his spleen. There goes this year's water polo season!
He's been utterly miserable and in great pain. His throat is so swollen that eating solids is completely out, while even drinking is difficult. We would so appreciate your prayers for his comfort and healing!
On the upside, we met another of the cadre of wheelchair technician angels yesterday. Pete brought the new stroller that we had ordered and anxiously anticipated. During months of googling "reclining wheelchair" I found an amazing chair that has all the features I wanted. But there was more...it has an innovative design that may help Abbie's posture, muscle tone, and ability to work with her hands.
Here's our new "Thevo Twist"
One special feature is has is flexible lateral supports -- those black things sticking out midway up her seat. In normal wheelchairs that is exactly what they do...stick straight out to help keep the child sitting straight. But, often they end up getting is the way of the arms, and not being a good fit. These ones, while retaining some rigidity, wrap around Abbie's midsection and buckle together. What a difference this has made in keeping her back straight! And, after 5 years we finally have a head rest that works and keeps her head aligned with her body -- woo-hoo!
It reclines all the way back, and has already proven a GREAT place to change Abbie without having to transfer her. This means we can always keep her clean and comfortable no matter where we are at; important now that she has outgrown the changing stations in public restrooms.
This is what is so different about it:
The back of the chair is not solid, but is constructed of rows of these sensors. When Abbie's body moves, these respond, giving her input that helps her know where her body is in space. This specific type of input has always been very helpful to Abbie, and leads to her sitting up straighter, having more head control, and relaxing and moving more fluidly. The suspension on the stroller is also adjustable. With the pull of a pin, the shock system is locked, so that the Abbie will feel every bump and jiggle...leading to even more sensory input for her. I had high hopes for this stroller, and now, actually having it here with Abbie, it has far exceeded them.
We purchased a new car seat from the same company. It is very adjustable and supportive, but the coolest part is that it has an iPod plug at at the bottom of the seat that feeds to speakers situated within the head rest. I plugged my iPod into the seat and let Abbie listen. This is her response:
We purchased both of these items from a company called "Exomotion" www.exomotion.com. They are the only American importer for these, produced by Thomashilfen in Germany. Exomotion is located in Seattle, and I cannot say enough about their terrific customer service. If you have a child who may be in need of a new chair in the near future, I urge you to check out what they have. Getting this chair has been life-changing, and I know other wheelchair families will recognize that statement is not hyperbole.
As this week comes to a close, I just feel very, very blessed. I pray as you reflect on your life, that same sense comes over you!
Tuesday, July 21, 2009
Powering Up
A lot has happened since the last post. Our "moving without moving" project has come quite a long way, as every closet, drawer, and shelf have been emptied and sorted through, while every piece of furniture we own has been moved to make way for the painters and carpeters. In the midst of this we had a slight complication, when a minor cut on Ray's finger became infected with MRSA and his hand swelled up like a softball. Part of the effort to keep him out of the hospital required him to constantly elevate that hand. This prevented him from helping much with the house projects, but, even worse, made him the victim of 12-year-old humor.
You know the kind: slightly funny, mostly annoying, relentless. "Dad, do you have a question?" "Excuse me sir, can I help with something?" Poor Dad just wanted to bring his hand down, if for no other reason than to cover the twins' mouths! They couldn't just say it once, or even three times. Oh no, they were certain it would finally make us laugh at repetition number fifty!
Ray did manage to avoid the hospital so that we could meet Chase in Santa Clara on Thursday for his college orientation. I have not been on that campus since I graduated. It was nice then, it is beautiful now! I wanted to ask whether they accept moms for a second go 'round. It was a blessed time as we learned where, how, and with whom Chase will be spending the next four years growing into a godly man.
We arrived home on Saturday to find our anxiously awaiting princess looking beautiful. Genevieve said she was sad while we were away, but the day she knew we were coming home she jumped at every sound, even from a dead sleep, looking for us.
Today, I learned that some angels wear green and drive big vans. One is named Derrick. This particular angel, a wheelchair technician, has been conspiring with Abbie's therapists for well over a year about how to get her into a power wheel chair. Today, we were blessed with the results of their behind-the-scenes planning. I had expected a wheelchair like she has now with a motor under it, not knowing that we would be speed warping into High Tech Land.
The power chair looks NOTHING like what she has now. It sits on a base that reminds me of the scooter chairs you see seniors zipping around in, although Abbie's chair has two front wheels. We seated her in it, and she fit very well. She was then able to use the toggle switch to control the chair: elevating her seat way up in the air -- to a position that will allow us to seat her without bending over, what a blessing for our backs! She could then move it all the way back down. She also learned how to recline the chair (it went wwwaaayyyyy back) and then incline it again. It took her a little while, and a change of the type of switch, for her to really get the hang of it, but she definitely conquered the recline move by the end of therapy today! Eventually, she will be able to use the switch to drive the chair around -- although I did ask about remote control brakes!
We will be working on the switch access at OT on Wednesday, and then perhaps we can bring the chair home. I am stunned by how remarkable a piece of equipment it is, and so overwhelmed that all of this planning went on without my even knowing it. Much of a special needs mom's mental energy goes to figuring out what her child needs and how to get it. To have this process go on without me, and result in such an amazing chair....I cannot put into words what this means to me. More importantly, I cannot imagine what having some control is going to mean to Miss Abbie.
I got a huge grin from her when I mentioned, "Abbie, you are going to be able to drive before your brothers are!!!" So, consider that fair warning...if you visit Kahala Mall or the surrounding neighborhood, be on the look out for a girl in pigtails speeding by in black blur. Once she gets going, I'm not sure there will be any slowing her down....in many, many ways!
You know the kind: slightly funny, mostly annoying, relentless. "Dad, do you have a question?" "Excuse me sir, can I help with something?" Poor Dad just wanted to bring his hand down, if for no other reason than to cover the twins' mouths! They couldn't just say it once, or even three times. Oh no, they were certain it would finally make us laugh at repetition number fifty!
Ray did manage to avoid the hospital so that we could meet Chase in Santa Clara on Thursday for his college orientation. I have not been on that campus since I graduated. It was nice then, it is beautiful now! I wanted to ask whether they accept moms for a second go 'round. It was a blessed time as we learned where, how, and with whom Chase will be spending the next four years growing into a godly man.
We arrived home on Saturday to find our anxiously awaiting princess looking beautiful. Genevieve said she was sad while we were away, but the day she knew we were coming home she jumped at every sound, even from a dead sleep, looking for us.
Today, I learned that some angels wear green and drive big vans. One is named Derrick. This particular angel, a wheelchair technician, has been conspiring with Abbie's therapists for well over a year about how to get her into a power wheel chair. Today, we were blessed with the results of their behind-the-scenes planning. I had expected a wheelchair like she has now with a motor under it, not knowing that we would be speed warping into High Tech Land.
The power chair looks NOTHING like what she has now. It sits on a base that reminds me of the scooter chairs you see seniors zipping around in, although Abbie's chair has two front wheels. We seated her in it, and she fit very well. She was then able to use the toggle switch to control the chair: elevating her seat way up in the air -- to a position that will allow us to seat her without bending over, what a blessing for our backs! She could then move it all the way back down. She also learned how to recline the chair (it went wwwaaayyyyy back) and then incline it again. It took her a little while, and a change of the type of switch, for her to really get the hang of it, but she definitely conquered the recline move by the end of therapy today! Eventually, she will be able to use the switch to drive the chair around -- although I did ask about remote control brakes!
We will be working on the switch access at OT on Wednesday, and then perhaps we can bring the chair home. I am stunned by how remarkable a piece of equipment it is, and so overwhelmed that all of this planning went on without my even knowing it. Much of a special needs mom's mental energy goes to figuring out what her child needs and how to get it. To have this process go on without me, and result in such an amazing chair....I cannot put into words what this means to me. More importantly, I cannot imagine what having some control is going to mean to Miss Abbie.
I got a huge grin from her when I mentioned, "Abbie, you are going to be able to drive before your brothers are!!!" So, consider that fair warning...if you visit Kahala Mall or the surrounding neighborhood, be on the look out for a girl in pigtails speeding by in black blur. Once she gets going, I'm not sure there will be any slowing her down....in many, many ways!
Friday, July 10, 2009
Gimme Five (Times Eleven)
Wow, I didn't realize it'd been so long since the last post. This summer schedule has been kicking my tail, and now we are in the midst of painting the whole interior of the house and moving rooms around -- a little extra chaos is always fun.
Abbie has been doing magnificently. During PT on Monday we sat her on a chair because we wanted to work on knee bending. She was doing it so well herself, that we decided to have some fun with her arms and hands. An easel was set on a desk in front of her, upon which we sprayed globs of the foamy soap she so loves to play with. Now understanding this was her chance to make a big mess, Abbie began moving her arms toward the middle on her own, something she's never done...back and forth she went. We would support her elbows to help with the weight of her arms, but she knew just what to do. Seeing new things makes therapy sessions fun!
On Wednesday we went to se a different therapist, who asked what we'd worked on in Monday's session. Abbie, laying on the floor, lifted her arms and moved them toward the middle. Wow! Working against gravity AND answering a question. We were quite impressed, but that was just her opening act. Soon after, still lying on her back, she started bending her knees and lifting her legs. She's never done it that way -- she would only lift a straight leg. Right leg, left leg, right leg, left leg...we were giggling by this point. We then sat her in a chair, so she could practice good knee-bending, as well as moving her leg to kick a ball. She worked hard for a solid 30 minutes, which prompted her nurse to say, "Abbie, I don't know what's changed, but it's all clicking inside you now...you know how to move your body." Another really fun day of therapy.
We recently took Abbie to one of RJ's allstar baseball games. It was more than a little hot that day, which I remedied by taking wet cloths in a cooler with an icepack, rotating them on her head to cool her. It's always a hard call. We so much desire to have her with us everywhere we go, but the reality is that some places, some events are just not good for her. This trip was worth it however, before the game even started.
We were sitting under a shade tent, up a little embankment behind our boys' dugout. I had just begun her feeding shortly before the game started, when Coach John asked if the team could come see Abbie before the game. I dumped that tube of food back into the bottle so quickly sparks may have flown. He coached the twins the summer Abbie got hurt, so the tender spot in his heart for her rivals the Pacific.
The players lined up in front of her wheel chair, and took turns giving her a high five. I spoke for her as I raised her hand..."Good luck Maka...good luck Jarrod...good luck Nohili....Noah...Eli..RJ...Austin..Kalehua.." At the end I couldn't even say the names because I was tearing up. For her presence to be recognized -- and valued -- by the team overwhelmed me with gratitude. Knowing she is such a precious gift gets us through even the hardest of days, having others see it too enriches even the brightest ones.
Abbie has been doing magnificently. During PT on Monday we sat her on a chair because we wanted to work on knee bending. She was doing it so well herself, that we decided to have some fun with her arms and hands. An easel was set on a desk in front of her, upon which we sprayed globs of the foamy soap she so loves to play with. Now understanding this was her chance to make a big mess, Abbie began moving her arms toward the middle on her own, something she's never done...back and forth she went. We would support her elbows to help with the weight of her arms, but she knew just what to do. Seeing new things makes therapy sessions fun!
On Wednesday we went to se a different therapist, who asked what we'd worked on in Monday's session. Abbie, laying on the floor, lifted her arms and moved them toward the middle. Wow! Working against gravity AND answering a question. We were quite impressed, but that was just her opening act. Soon after, still lying on her back, she started bending her knees and lifting her legs. She's never done it that way -- she would only lift a straight leg. Right leg, left leg, right leg, left leg...we were giggling by this point. We then sat her in a chair, so she could practice good knee-bending, as well as moving her leg to kick a ball. She worked hard for a solid 30 minutes, which prompted her nurse to say, "Abbie, I don't know what's changed, but it's all clicking inside you now...you know how to move your body." Another really fun day of therapy.
We recently took Abbie to one of RJ's allstar baseball games. It was more than a little hot that day, which I remedied by taking wet cloths in a cooler with an icepack, rotating them on her head to cool her. It's always a hard call. We so much desire to have her with us everywhere we go, but the reality is that some places, some events are just not good for her. This trip was worth it however, before the game even started.
We were sitting under a shade tent, up a little embankment behind our boys' dugout. I had just begun her feeding shortly before the game started, when Coach John asked if the team could come see Abbie before the game. I dumped that tube of food back into the bottle so quickly sparks may have flown. He coached the twins the summer Abbie got hurt, so the tender spot in his heart for her rivals the Pacific.
The players lined up in front of her wheel chair, and took turns giving her a high five. I spoke for her as I raised her hand..."Good luck Maka...good luck Jarrod...good luck Nohili....Noah...Eli..RJ...Austin..Kalehua.." At the end I couldn't even say the names because I was tearing up. For her presence to be recognized -- and valued -- by the team overwhelmed me with gratitude. Knowing she is such a precious gift gets us through even the hardest of days, having others see it too enriches even the brightest ones.
Friday, June 19, 2009
EEG
When they told me that Abbie needed to be awake for six hours prior to yesterday's EEG test, I promptly scheduled an afternoon appointment. I figured it would be a lot easier (on me) to keep her awake between 7am and 1 pm than between 3 and 9 am. We had a few moments of close-calls, but managed to keep her eyes open until we arrived at the hospital at 1:30.
They needed to hook her up, get some readings while she was awake, and then some after she'd fallen asleep. Piece of cake -- or not. We finally unhooked her at 4pm, without her ever having shut her eyes! That girl....every little sound from the hallway caught her attention. Water running through the pipes, a door closing, the boy next door in Xray wailing because he had a broken arm.
I asked the tech if we would need to come back to redo it to get sleep readings, and she said she didn't think so. Her answer basically told me the results of the test, but I thought I'd have to wait at least a week to hear the official results from the neurologist.
After returning home from my taxi-mom duties later that evening, there was already a message on the machine from Dr. Y, the neurologist, explaining that there was seizure activity noted on the EEG, and that we should not move forward with weaning Abbie off of her medication.
A couple years ago this news would have crushed me. From the beginning of this journey, getting off of medications, or not needing new ones, was a sign of progress, a way for Abbie to show she is worthy of the investment of time, energy, and yes - -money, that it takes to help a brain-injured person recover. She has many more ways to make her case now!
Every time she looked around to find the source of the sleep-stealing noise, as I watched her brows furrow in concern and empathy for the injured boy, and as I watched her grin at the tech who took the leads off her head I realized that THESE were the EEG results I was truly interested in. We hadn't been in that room for 3 years, and Abbie is a much different girl now. I can accept the seizure activity as new circuits in her brain bump up against the scarring that protected her brain after the injury. I can live with giving her a medication twice a day, and I will stomach writing its name on every medical document, if in exchange I get a happy, bright, smiley engaged girl. I think we've gotten a good deal.
To quote a dear friend: "Onward and Upward!!"
They needed to hook her up, get some readings while she was awake, and then some after she'd fallen asleep. Piece of cake -- or not. We finally unhooked her at 4pm, without her ever having shut her eyes! That girl....every little sound from the hallway caught her attention. Water running through the pipes, a door closing, the boy next door in Xray wailing because he had a broken arm.
I asked the tech if we would need to come back to redo it to get sleep readings, and she said she didn't think so. Her answer basically told me the results of the test, but I thought I'd have to wait at least a week to hear the official results from the neurologist.
After returning home from my taxi-mom duties later that evening, there was already a message on the machine from Dr. Y, the neurologist, explaining that there was seizure activity noted on the EEG, and that we should not move forward with weaning Abbie off of her medication.
A couple years ago this news would have crushed me. From the beginning of this journey, getting off of medications, or not needing new ones, was a sign of progress, a way for Abbie to show she is worthy of the investment of time, energy, and yes - -money, that it takes to help a brain-injured person recover. She has many more ways to make her case now!
Every time she looked around to find the source of the sleep-stealing noise, as I watched her brows furrow in concern and empathy for the injured boy, and as I watched her grin at the tech who took the leads off her head I realized that THESE were the EEG results I was truly interested in. We hadn't been in that room for 3 years, and Abbie is a much different girl now. I can accept the seizure activity as new circuits in her brain bump up against the scarring that protected her brain after the injury. I can live with giving her a medication twice a day, and I will stomach writing its name on every medical document, if in exchange I get a happy, bright, smiley engaged girl. I think we've gotten a good deal.
To quote a dear friend: "Onward and Upward!!"
Friday, June 12, 2009
Two Thumbs Way "UP"!
Yesterday brought another bonus of living in Hawaii: King Kamehameha Day. Ray had the day off, so we enjoyed it as a family. Abbie swam with her Daddy and I for about half an hour. By the end of our time in the pool, her body was moving through the water like a ballerina...all the muscle tone and restriction was gone. I momentarily wished we could grow tails and live in the water.
In the evening we decided to try to take Abbie to the movies again. It has been two-and-a-half years since our last attempt, during which she lasted five minutes. My heart was gladdened by the boys all cancelling their plans so that we could go as a family.
The movie "Up" proves that good, quality movies CAN be made today, and I was so relieved that it provided colorful adventure, good themes, and sweet comedy without any unwanted surprises or mature double entendres. Abbie was sitting in her wheelchair during the previews, but as it is a loaner chair, it doesn't fit her quite perfectly. "Why leave her there?" I wondered. So, I moved her onto my lap for the movie, which allowed us to have little conversations (me whispering, her squeezing my hand.)
She was attentive the whole time, and smiled at the funny parts. I relished having her sit, completely relaxed on my lap. I looked down the row, and saw our entire family...a very sweet time.
She fell asleep on the walk home, and had dreams of colorful balloons, a floating house and silly bird, I am sure.
In the evening we decided to try to take Abbie to the movies again. It has been two-and-a-half years since our last attempt, during which she lasted five minutes. My heart was gladdened by the boys all cancelling their plans so that we could go as a family.
The movie "Up" proves that good, quality movies CAN be made today, and I was so relieved that it provided colorful adventure, good themes, and sweet comedy without any unwanted surprises or mature double entendres. Abbie was sitting in her wheelchair during the previews, but as it is a loaner chair, it doesn't fit her quite perfectly. "Why leave her there?" I wondered. So, I moved her onto my lap for the movie, which allowed us to have little conversations (me whispering, her squeezing my hand.)
She was attentive the whole time, and smiled at the funny parts. I relished having her sit, completely relaxed on my lap. I looked down the row, and saw our entire family...a very sweet time.
She fell asleep on the walk home, and had dreams of colorful balloons, a floating house and silly bird, I am sure.
Saturday, June 06, 2009
Link for the news story
A big mahalo to Gina Mangieri, the KHON reporter who came to the house and edited a lengthy interview to produce a piece that I think turned out well. She made talking about a difficult subject very easy, and I am grateful that they frame the story in a very hopeful, positive way.
Here is the link to see the video:
http://www.khon2.com/news/local/story/UH-Gets-Brain-Injury-Resource-Distinction/oD4wA5vgvUOz1wYzZVax6g.cspx
Sorry that I couldn't get it to hyperlink, so you will have to cut and paste it into your browser.
Hope you are having a great weekend!
Here is the link to see the video:
http://www.khon2.com/news/local/story/UH-Gets-Brain-Injury-Resource-Distinction/oD4wA5vgvUOz1wYzZVax6g.cspx
Sorry that I couldn't get it to hyperlink, so you will have to cut and paste it into your browser.
Hope you are having a great weekend!
Friday, June 05, 2009
Abbie on the News Friday Evening
Just want to let all the local folks know that Miss Abbie and I will be in a piece that KHON, Channel 2, will be running at 5,6,and 11 tomorrow night (6/5). I found out around 10am today that they would be at the house at 11:30.
Hmmmm...no nursing help...a quick survey of the house - yikes. A quick look in the mirror - double yikes. We managed to get Abbie in the bath, dressed and looking great, the house put together, and me into the shower and at least dressed in clean clothes. No woman wants to be caught on camera without makeup and jewelery on, but it was more than I could fit into the whirlwind this morning. I suppose the viewing audience will be treated to reality TV, Vara-style. (triple yikes).
We will be part of a story announcing the selection of the Center for Disabilites Studies at UH as the Hawaii Center for Excellence for the Sarah Jane Brain Project for Pediatric Aquired Brain Injuries. Finally, there is hope of a national network collaborating to find solutions. I am hopeful the SJBP will give a voice to the millions of brain injury families currently without a ribbon, march, or national fundraiser. We've all been quietly struggling to achieve recovery in isolation. There is power, and there is renewed hope, in numbers. I am confident there will be much more to follow on this issue.
There have also been a couple more great things happen just since the last update. We visited Abbie's neurologist on Tuesday, so I was prepared for a scolding. You see, her medications have begun to make her very sleepy in the morning. I gave them separately a few times to see which one was the culprit. Surprisingly, it wasn't the spasticity med (Baclofen)but rather the seizure med (Trileptal)that was knocking her out. So, I started lowering her morning dose very slowly. Not generally something you should do without first consulting the neurologist, but I felt confident that Abbie could tolerate a slow weaning.
That is, I felt confident until I was sitting in Dr. Y.'s office and had to fess up. Instead of delivering a tongue-lashing, he broke into a grin and said, "Well, then let's do a proper weaning trial!" This involves a pre-wean EEG, then the weaning, followed by a post-wean EEG. I was thrilled by his support, but even more encouraged by what he said next. "If she fails this weaning attempt, then we will just try it again in a year. If that one doesn't work, we'll wait another year and then try again. I think that getting her off this med is the next big milestone we are shooting for." Oh...my....goodness. To have a neurologist commit to trying again and again -- blessing beyond measure!
In PT on Wednesday, her therapist turned to me at one point and said, "I don't know what you guys are doing lately, but just keep doing it. She is changing so much, getting stronger, having better vision....just keep it up!" Days like that are really fun.
Hmmmm...no nursing help...a quick survey of the house - yikes. A quick look in the mirror - double yikes. We managed to get Abbie in the bath, dressed and looking great, the house put together, and me into the shower and at least dressed in clean clothes. No woman wants to be caught on camera without makeup and jewelery on, but it was more than I could fit into the whirlwind this morning. I suppose the viewing audience will be treated to reality TV, Vara-style. (triple yikes).
We will be part of a story announcing the selection of the Center for Disabilites Studies at UH as the Hawaii Center for Excellence for the Sarah Jane Brain Project for Pediatric Aquired Brain Injuries. Finally, there is hope of a national network collaborating to find solutions. I am hopeful the SJBP will give a voice to the millions of brain injury families currently without a ribbon, march, or national fundraiser. We've all been quietly struggling to achieve recovery in isolation. There is power, and there is renewed hope, in numbers. I am confident there will be much more to follow on this issue.
There have also been a couple more great things happen just since the last update. We visited Abbie's neurologist on Tuesday, so I was prepared for a scolding. You see, her medications have begun to make her very sleepy in the morning. I gave them separately a few times to see which one was the culprit. Surprisingly, it wasn't the spasticity med (Baclofen)but rather the seizure med (Trileptal)that was knocking her out. So, I started lowering her morning dose very slowly. Not generally something you should do without first consulting the neurologist, but I felt confident that Abbie could tolerate a slow weaning.
That is, I felt confident until I was sitting in Dr. Y.'s office and had to fess up. Instead of delivering a tongue-lashing, he broke into a grin and said, "Well, then let's do a proper weaning trial!" This involves a pre-wean EEG, then the weaning, followed by a post-wean EEG. I was thrilled by his support, but even more encouraged by what he said next. "If she fails this weaning attempt, then we will just try it again in a year. If that one doesn't work, we'll wait another year and then try again. I think that getting her off this med is the next big milestone we are shooting for." Oh...my....goodness. To have a neurologist commit to trying again and again -- blessing beyond measure!
In PT on Wednesday, her therapist turned to me at one point and said, "I don't know what you guys are doing lately, but just keep doing it. She is changing so much, getting stronger, having better vision....just keep it up!" Days like that are really fun.
Wednesday, June 03, 2009
Joyful Whirlwind
The reality of parenting an "adult" hit me square in the face a couple days ago, when my eldest son approached me in the kitchen and said, "Hey mom, a few friends and I are going skydiving on Wednesday." Period. End of story. No groveling, no "pretty-please-I'll-take-out-the-garbage-for-a-month" requests. Not even a cheerful assurance of his survival. As the requisite motherly reproach rose in my throat, I realized that as an eighteen-year-old he can sign any consent form he wants. How did we go from permission to get out of bed for water, to skydiving on a whim...where did the time go???
That's been the theme of the last month, as we experienced together the joy of a sublime baccalaureate service, held at Central Union, the beautiful stone church next to the children's hospital. I watched Chase and his classmates file into their pews under the enormous, gilded proclamation "Love Never Faileth." I don't know how many times during the service I looked up at those words, replaying the nights I spent next door, looking at the light in the steeple, praying for our girl to survive. With each passing day back then I came to believe more fervently that Love Always Wins. I cannot say how, or when, but I do know why. We would whisper it to Abbie, and in the mirror to ourselves. So, when I discovered a couple of years later, that the same sentiment, in more proper language, was inside the church that had buoyed my spirit, I felt God saying, "You heard my heart." It seemed an exquisitely personalized gift from God to see Chase sit beneath those words in his white robe on such a spectacular evening.
The next day, we sat in the midst of Mid-Pacific Institute's beautiful campus, facing the verdant mountains standing guard, feeling the gentle breezes and occasional sprinkle that typify Manoa Valley, recalling the first time we stepped onto that field. It was the night of freshman orientation. We had applied very late for Mid-Pac, and Chase was accepted off the waiting list...an extraordinary blessing. My heart was grinding in my chest, as we came to terms with yet another loss as the result of Abbie's injury. I kept Chase home for a year more of homeschooling after she got hurt, but I knew that I could not do justice to a high school education given the demands of Abbie's care. The bittersweetness of his acceptance at Mid-Pac almost dimmed my sight that night...but not enough to prevent God from grabbing me on that field. A rainbow was shimmering through the mist above, flowers hung heavy on the trees, and the breeze gave me a much-needed hug. This was right where God wanted Chase, and Abbie had helped get him there. There are few moments that have held such clarity as that one, nor as much gratitude.
At the conclusion of the ceremony, Chase was draped in lei up to his chin. I approached him to give him one more, very special one. Fragrant pikake and innocent pink rosebuds. "This one is from your little sister, " I said, and drew him into a hug. He clung tightly and began to cry a bit...."It's because of her that I am here." I wasn't sure, on a night full of such emotions and endings, that he would recall the beginning as clearly as I. Her blessings are recognized and reverenced by her brothers, which makes me proud of all of them.
Chase's diploma framed by Abbie's lei
As far as Miss Abbie, she is just in a great place lately! She is enjoying getting in the pool each day, and does so well. If I hold her around her waist, she can control her upper body and head just fine. If I hold her under her arms we can "motorboat" around the shallow end. She will kick her legs a bit, when she is not shivering, and will hold her head up nicely when swimming on her stomach. She was laughing so loud the other day, that Kyle had to come see what was going on. That's when he snapped these pictures:
"Look at me hold my head up!!"
Abbie's laugh is infectious
God is great, and life is good!!
Abbie has grown four inches in the last six months! She is too big for her lovely purple wheelchair, so she's using a loaner. It's pink, but it also has the word "Precious" stitched on the seat -- her brothers thought that was very appropriate. We are in the midst of determining what her next chair will be, and the therapists agree that we should purchase a frame that will accommodate a motor, as they have been thinking about trying Abbie in a motorized wheelchair for a while. Abbie's vision and motor skills are improving to the point that we would like to give her a little independence when it comes to movement. Even if she could just drive herself around a bit in open spaces like the park, or gym or mall, that would be sweet indeed!
This morning she awoke with so many smiles that I finally said, "You must have had very sweet dreams last night!" Big grin. "What did you dream about?" I asked. Her legs started moving back and forth. "Did you dream about running around?" Big grin. Oh, that day is coming, I tell you, that day is coming....
Friday, May 08, 2009
School Days
Now that Abbie is recovered from her round of surgeries, and therapy is fun again instead of being painful, it has become apparent that it is time to return more focus to her academic progress. A couple of weeks ago I settled in my heart that while I hope the educational system in Hawaii will improve it's offerings for kids like Abbie, she and I can't wait for that to happen. So, I headed to the garage. Once a homeschooler, always a homeschooler -- with the boxes of books to prove it.
I pulled out a curriculum that I used with the twins when they were young. "Five in a Row" is perfect for Abbie, because each week is centered on one great piece of children's literature, which is read every day. All of the activities for the week are then based on the story. We've chosen "The Story of Ping" for our first adventure. It tells the story of a duck that lives with his large family on a houseboat on the Yangtze river. Part of the story describes how the last duck back to the boat each night gets a spank. The first time I read that to Abbie her eyes widened and she jumped.
This morning we did a science experiment to determine what kinds of things float, and what kinds of things don't. Another homeschooling souvenir, the Teaching Tank, allowed Abbie to see the experiment results up close. I place the plexiglass tank on her tray and then helped her drop each item into the water. Interestingly, as the experiment proceeded, her muscle tone dropped tremendously. I think all that girl really needs is stimulation.
Once we'd retrieved and dried our floaters (and non-floaters) we couldn't let all of that lovely water just go to waste. I decided that we should color it yellow like the "waters of the Yangtze river" in our story. But, this was school, so Abbie didn't get anything for free. She had her "yes" and "no" switches, so I asked her questions to decide what color of paint we should add to the water.
"Are the waters of the Yangtze river red?" I asked. "No, that's not right" came the answer from her switch.
"Are the waters of the Yangtze river green?"
"No, that's not right!"
"Are the waters of the Yangtze river yellow?"
She answered with her eyes, then her lips, then her body and finally her switch, "Yes."
So, I dumped a bunch of yellow paint into the tank. It may be the mom in me, but the yellow water reminded me a lot more of pee than of the Yangtze river. Fun for Abbie, all the same.
We are also using the story to build her literacy by choosing her "words for the week" from the book. These are the words we work on each day so that she will recognize them any time and anywhere she sees them. Her amazing speech therapist also spent untold hours converting the story into a computer format that Abbie can interact with electronically. We really are trying to use every channel of input possible, while keeping it fun and interesting for her.
We visited the orthopedic surgeon on Monday for a three month follow-up. He was very pleased with her surgery sites and with all of her joints (well, Mr. Elbow wasn't his fave, but that's OK). He thought that Abbie's feet were going to quickly return to the obstinate little critters they had been, pointed down and out with little range in her ankles. Miss Ballerina Feet really impressed him. She has a tiny curve in her back, but nothing even meriting an Xray. We are just going to keep an eye on it and work with it.
So many good things are happening at once, on so many fronts, that I feel like I'm standing outside Jericho. I've prayed for years for certain walls to fall, I just never imagined they'd all crumble at once. I'm closing in on publishing a book about blenderized diets -- so if there are any families out there blenderizing who would be willing to share your stories, please contact me at varasix@aol.com. We are seeing very new, and very real opportunities in brain injury research and therapy development, as well as possible openings for educational setting advancements.
But, with all this excitement, the thing that thrills me the most is sitting on the couch with a beautiful girl reading about a little yellow duck far away.
I pulled out a curriculum that I used with the twins when they were young. "Five in a Row" is perfect for Abbie, because each week is centered on one great piece of children's literature, which is read every day. All of the activities for the week are then based on the story. We've chosen "The Story of Ping" for our first adventure. It tells the story of a duck that lives with his large family on a houseboat on the Yangtze river. Part of the story describes how the last duck back to the boat each night gets a spank. The first time I read that to Abbie her eyes widened and she jumped.
This morning we did a science experiment to determine what kinds of things float, and what kinds of things don't. Another homeschooling souvenir, the Teaching Tank, allowed Abbie to see the experiment results up close. I place the plexiglass tank on her tray and then helped her drop each item into the water. Interestingly, as the experiment proceeded, her muscle tone dropped tremendously. I think all that girl really needs is stimulation.
Once we'd retrieved and dried our floaters (and non-floaters) we couldn't let all of that lovely water just go to waste. I decided that we should color it yellow like the "waters of the Yangtze river" in our story. But, this was school, so Abbie didn't get anything for free. She had her "yes" and "no" switches, so I asked her questions to decide what color of paint we should add to the water.
"Are the waters of the Yangtze river red?" I asked. "No, that's not right" came the answer from her switch.
"Are the waters of the Yangtze river green?"
"No, that's not right!"
"Are the waters of the Yangtze river yellow?"
She answered with her eyes, then her lips, then her body and finally her switch, "Yes."
So, I dumped a bunch of yellow paint into the tank. It may be the mom in me, but the yellow water reminded me a lot more of pee than of the Yangtze river. Fun for Abbie, all the same.
We are also using the story to build her literacy by choosing her "words for the week" from the book. These are the words we work on each day so that she will recognize them any time and anywhere she sees them. Her amazing speech therapist also spent untold hours converting the story into a computer format that Abbie can interact with electronically. We really are trying to use every channel of input possible, while keeping it fun and interesting for her.
We visited the orthopedic surgeon on Monday for a three month follow-up. He was very pleased with her surgery sites and with all of her joints (well, Mr. Elbow wasn't his fave, but that's OK). He thought that Abbie's feet were going to quickly return to the obstinate little critters they had been, pointed down and out with little range in her ankles. Miss Ballerina Feet really impressed him. She has a tiny curve in her back, but nothing even meriting an Xray. We are just going to keep an eye on it and work with it.
So many good things are happening at once, on so many fronts, that I feel like I'm standing outside Jericho. I've prayed for years for certain walls to fall, I just never imagined they'd all crumble at once. I'm closing in on publishing a book about blenderized diets -- so if there are any families out there blenderizing who would be willing to share your stories, please contact me at varasix@aol.com. We are seeing very new, and very real opportunities in brain injury research and therapy development, as well as possible openings for educational setting advancements.
But, with all this excitement, the thing that thrills me the most is sitting on the couch with a beautiful girl reading about a little yellow duck far away.
Monday, May 04, 2009
Five Years
Typing the title for this post was very surreal for me. Can it really be that long ago that Abbie was given back to us on a beautiful Monday afternoon in May? Thinking back over the minutes that blurred into hours, which melted into days, months...and now years...there are some things that absolutely amaze me.
First is how utterly brave, strong and stubborn our girl has been through this whole experience. There is not one ounce of quit in her, and she has not batted her lavishly-long eyelashes at obstacles that make grown men cower. I wish I could say that we have done our best to support her through this, but in the most difficult moments, it has been her light, her smile, her tenacity keeping us afloat.
It surprises and humbles me that Abbie still has so many faithful blog followers. I've heard from some families in similar situations that "after so many years no one cares any more." We are profoundly blessed by posts at this site, emails asking "where's an update?', and crossing paths at the supermarket with folks that already know all about our death-defying snowmachine outing or Abbie's latest accomplishment. Even more than the support and encouragement this gives us, the power of your prayers continues to change Abbie's life to this day. It saved her five years ago, and it is making a twisted path straight for her even now.
I am also acutely aware tonight of how many, many talented and compassionate professionals have come into our lives, and joined our team. I cannot imagine not having their expertise and guidance, but also cannot fathom not knowing them as people, as friends. This list is long, but I must recognize: Jayna, Lisa, Lynette, Patty, Drs. Lau, Tran, Yim, Burkhalter, Durkin and King, who are my "Honolulu Hui". I, of course, must give a special mahalo to Dr. Jerry Tennant -- doctor, innovator, friend -- we wouldn't be where we are with out you, Marilyn and your staff. And, Linda Kane, whose life truly is given to bringing "hope and a future" to families.
Five years ago I was worried about the survival not only of my daughter, but of my family. It was impossible for me to see how we were going to get from point A to point B -- some days, I couldn't even see the next step. God has been faithful and generous with his grace. When I pictured what my family would be like five years and one day ago, the portrait I imagined bears very little resemblance to today's reality. But, I can say that not only did we survive, we are thriving. Second only to Abbie's progress, this is the most profound evidence of God's presence and work in our lives.
Finally, as I stop reflecting and resume looking forward, I am startled to find that I am filled with anticipation and excitement. It is stunning to find such joy in a journey that logically should be so wearisome and sad. God doesn't waste pain and sorrow. I look forward to reaping what has been sown in tears, and am grateful that He has allowed us such an extraordinary adventure with Him.
Thank you for your friendship, fellowship, support and unceasing prayers -- a testimony of God's love poured out through people, of which we are the most grateful recipients.
First is how utterly brave, strong and stubborn our girl has been through this whole experience. There is not one ounce of quit in her, and she has not batted her lavishly-long eyelashes at obstacles that make grown men cower. I wish I could say that we have done our best to support her through this, but in the most difficult moments, it has been her light, her smile, her tenacity keeping us afloat.
It surprises and humbles me that Abbie still has so many faithful blog followers. I've heard from some families in similar situations that "after so many years no one cares any more." We are profoundly blessed by posts at this site, emails asking "where's an update?', and crossing paths at the supermarket with folks that already know all about our death-defying snowmachine outing or Abbie's latest accomplishment. Even more than the support and encouragement this gives us, the power of your prayers continues to change Abbie's life to this day. It saved her five years ago, and it is making a twisted path straight for her even now.
I am also acutely aware tonight of how many, many talented and compassionate professionals have come into our lives, and joined our team. I cannot imagine not having their expertise and guidance, but also cannot fathom not knowing them as people, as friends. This list is long, but I must recognize: Jayna, Lisa, Lynette, Patty, Drs. Lau, Tran, Yim, Burkhalter, Durkin and King, who are my "Honolulu Hui". I, of course, must give a special mahalo to Dr. Jerry Tennant -- doctor, innovator, friend -- we wouldn't be where we are with out you, Marilyn and your staff. And, Linda Kane, whose life truly is given to bringing "hope and a future" to families.
Five years ago I was worried about the survival not only of my daughter, but of my family. It was impossible for me to see how we were going to get from point A to point B -- some days, I couldn't even see the next step. God has been faithful and generous with his grace. When I pictured what my family would be like five years and one day ago, the portrait I imagined bears very little resemblance to today's reality. But, I can say that not only did we survive, we are thriving. Second only to Abbie's progress, this is the most profound evidence of God's presence and work in our lives.
Finally, as I stop reflecting and resume looking forward, I am startled to find that I am filled with anticipation and excitement. It is stunning to find such joy in a journey that logically should be so wearisome and sad. God doesn't waste pain and sorrow. I look forward to reaping what has been sown in tears, and am grateful that He has allowed us such an extraordinary adventure with Him.
Thank you for your friendship, fellowship, support and unceasing prayers -- a testimony of God's love poured out through people, of which we are the most grateful recipients.
Tuesday, April 14, 2009
A great Easter
Abbie and her "bubby", Kyle
Yesterday was just a good, good day. I don't know how many times Ray and I said that to each other, but it felt new and true each time. The realization that this is yet another last -- the last Easter I will have all my children with me, made it very sweet. Church was wonderful, and then we went to brunch where they had a special room set aside just for us. Quiet and most importantly, air-conditioned.
Abbie's brothers humored me as I led them to the Easter Bunny so I could have a picture with all the kids in it. Abbie was a little upset that we'd gotten there too late for the egg hunt. Actually, we were eating when the announcement for the egg hunt for 4-7 year olds rang out. She jumped in her stroller and looked at me. I felt a little sad for her, but told myself it was too hot and sunny anyway. Besides, the Easter Bunny had given each of the kids a basket, so naturally Abbie ended up with all of them!
She did marvelously, which is always a praise during a long outing. I don't know how she does it, but she seems to grow more beautiful each day. We are blessed.
The contents of my heart, all in one picture
Sunday, April 05, 2009
Where the Spirit of the Lord is....
I've been mulling over in my mind this week how to put words to our Spring Break adventure to the Cascade mountains in Washington. Of course, since this is Abbie's site, most of the news should be about her. She did wonderfully on the plane both ways. Managing to stay awake, not need oxygen, and keep me and Genevieve plenty busy, just until we began our descent, at which time she nodded off...BOTH WAYS.
We had been practicing snow angels in the weeks leading up to the trip, and were looking forward to seeing an Abbie angel in the snow. But, two conditions conspired against us. The snow was welcoming Spring, getting hard, icy and not good for angel-making. We also found that the dry, cold, thinner air was not Abbie's friend. Breathing was not easy for her up there, and she was on oxygen for at least part of every day. We did get to take her for a couple of walks on the nicer days, but most of her time was spent on a couch near a big fire place.
It's always difficult to relish the fun parts of a vacation if Abbie can't join us, but I committed to opening my heart to the joy of my boys, without being overwhelmed by missing our girl. So, we did have some adventures! Suffice to say, I feel fortunate to still be a mother of five. A snowmachine trip saw one boy crash into a parked truck 300 yards into our trip (he rode with me after that), another boy bury his machine in a ditch (requiring an hour of further misadventure to get it out), and yet a third boy send his machine sailing off a cliff...fortunately he heeded my screaming "JUMP" before it disappeared from sight.
(This is before Ray's machine landed upside down on Chase's trying to get it out, before we buried both of them with the tow rope pulled so tight between them we couldn't unfasten it, and before my wondering about how long of a hike down the mountain it might be...)
This picture was taken with the aforementioned cliff behind us, moments before that incident. I'm glad it's not the last one of all of us!!
Realizing that motorized snow vehicles may be dangerous for our progeny, we diverted to snowboarding. I hadn't skiied since I was a teenager, so I thought, "If I have to be bad at something, I might as well be bad at something new." Everyone warned me the first three times are tough. Oh my -- they didn't exactly spell out how hard the getting up was -- I knew about the falling down a lot, but the getting up about wore me out! The helmet earned it's price, but by Day Two, I was getting better. The older two boys had long since abandoned me for the blue and black runs, but it was a blessing to have quiet moments on the chair lift with the twins.
We got to see my mom and Auntie Hazel, my sister and her family, and some precious friends in Seattle. A heart-filling time!
But, even with all that good stuff, I couldn't get focused to write. Sometimes when that happens it means that the real subject of the post hasn't been revealed yet. That's what happened this time.
We visited a new church tonight, because we have a commitment tomorrow that will prevent us from attending in the morning. We knew many of the folks in attendance, so felt comfortable right away, and jumped right into the singing. A familiar song, but sung with such purpose that it came alive -- especially by the number of people dressed in white shirts. Being new, I had no clue what that was all about, and surmised they were a ministry group of some sort.
A special speaker came to the podium to address the group about a recent ministry trip, taken by the group in white, to a prison in Arizona where 2000 prisoners from Hawaii are held. Pastor Roy was special, not only because he strived for two years to make this vision a reality, but because he spoke to us as a former prisoner. Repeatedly he extolled the "God of miracles" who saved him from a life sentence to serve Him, and who removed every roadblock for the Arizona trip -- and there were many, like a fundraiser that ended up losing twenty thousand dollars, but saw many bikers come to Jesus.
As he spoke about insurmountable odds, stones in the path, and crying out to God, you can imagine the twinge of identification that began to grow in my heart. As he described the prison environment, I pictured Abbie's body. Hearing about the confined men, I saw Abbie's spirit. Moment by moment the emotion grew deeper; I didn't know we were still wading in the shallow end.
Then, there they were, on video: tough, hardened, stone-cold, abandoned, convicted, confined men, filing into the service. Slowly, faces softened, smiles came, tears followed. Heads lifted, bodies stood. And, then I heard it...the song we'd sung earlier with such gusto, but these men were shouting it. And, I thought, if they can sing that between those walls, then I can sing it over my girl with the same intensity, knowing that it is true. "Where the spirit of the Lord is, there is FREEDOM."
No razor wire, shackles, constricted muscles or weakened bones can change that fact. Praise God.
It wasn't over yet, though. I watched the folks in white weep during Pastor Roy's talk and the video, moved at how deeply they'd been affected by the trip. He called them forward, and introduced them not only as the prison ministry team, but as former prisoners, each of them. My jaw dropped. They wanted to sing and sign for us. "Lord I give you my heart, I give you my soul, I live for you alone...." More than thirty radiant faces and redeemed lives proclaimed the transformational power of the gospel. All shame had been washed away. The chains of bondage remained behind in a dust-covered past. They were free -- truly free. The God to whom I pray for my girl is the God who had freed and restored them. Big men with tattoos, older aunties, and lithe young women -- what was broken is now whole, and what was lost is found. This image will remain in my mind and soul when I pray to the Lord who has already done the same for Abbie.
We had been practicing snow angels in the weeks leading up to the trip, and were looking forward to seeing an Abbie angel in the snow. But, two conditions conspired against us. The snow was welcoming Spring, getting hard, icy and not good for angel-making. We also found that the dry, cold, thinner air was not Abbie's friend. Breathing was not easy for her up there, and she was on oxygen for at least part of every day. We did get to take her for a couple of walks on the nicer days, but most of her time was spent on a couch near a big fire place.
It's always difficult to relish the fun parts of a vacation if Abbie can't join us, but I committed to opening my heart to the joy of my boys, without being overwhelmed by missing our girl. So, we did have some adventures! Suffice to say, I feel fortunate to still be a mother of five. A snowmachine trip saw one boy crash into a parked truck 300 yards into our trip (he rode with me after that), another boy bury his machine in a ditch (requiring an hour of further misadventure to get it out), and yet a third boy send his machine sailing off a cliff...fortunately he heeded my screaming "JUMP" before it disappeared from sight.
(This is before Ray's machine landed upside down on Chase's trying to get it out, before we buried both of them with the tow rope pulled so tight between them we couldn't unfasten it, and before my wondering about how long of a hike down the mountain it might be...)
This picture was taken with the aforementioned cliff behind us, moments before that incident. I'm glad it's not the last one of all of us!!
Realizing that motorized snow vehicles may be dangerous for our progeny, we diverted to snowboarding. I hadn't skiied since I was a teenager, so I thought, "If I have to be bad at something, I might as well be bad at something new." Everyone warned me the first three times are tough. Oh my -- they didn't exactly spell out how hard the getting up was -- I knew about the falling down a lot, but the getting up about wore me out! The helmet earned it's price, but by Day Two, I was getting better. The older two boys had long since abandoned me for the blue and black runs, but it was a blessing to have quiet moments on the chair lift with the twins.
We got to see my mom and Auntie Hazel, my sister and her family, and some precious friends in Seattle. A heart-filling time!
But, even with all that good stuff, I couldn't get focused to write. Sometimes when that happens it means that the real subject of the post hasn't been revealed yet. That's what happened this time.
We visited a new church tonight, because we have a commitment tomorrow that will prevent us from attending in the morning. We knew many of the folks in attendance, so felt comfortable right away, and jumped right into the singing. A familiar song, but sung with such purpose that it came alive -- especially by the number of people dressed in white shirts. Being new, I had no clue what that was all about, and surmised they were a ministry group of some sort.
A special speaker came to the podium to address the group about a recent ministry trip, taken by the group in white, to a prison in Arizona where 2000 prisoners from Hawaii are held. Pastor Roy was special, not only because he strived for two years to make this vision a reality, but because he spoke to us as a former prisoner. Repeatedly he extolled the "God of miracles" who saved him from a life sentence to serve Him, and who removed every roadblock for the Arizona trip -- and there were many, like a fundraiser that ended up losing twenty thousand dollars, but saw many bikers come to Jesus.
As he spoke about insurmountable odds, stones in the path, and crying out to God, you can imagine the twinge of identification that began to grow in my heart. As he described the prison environment, I pictured Abbie's body. Hearing about the confined men, I saw Abbie's spirit. Moment by moment the emotion grew deeper; I didn't know we were still wading in the shallow end.
Then, there they were, on video: tough, hardened, stone-cold, abandoned, convicted, confined men, filing into the service. Slowly, faces softened, smiles came, tears followed. Heads lifted, bodies stood. And, then I heard it...the song we'd sung earlier with such gusto, but these men were shouting it. And, I thought, if they can sing that between those walls, then I can sing it over my girl with the same intensity, knowing that it is true. "Where the spirit of the Lord is, there is FREEDOM."
No razor wire, shackles, constricted muscles or weakened bones can change that fact. Praise God.
It wasn't over yet, though. I watched the folks in white weep during Pastor Roy's talk and the video, moved at how deeply they'd been affected by the trip. He called them forward, and introduced them not only as the prison ministry team, but as former prisoners, each of them. My jaw dropped. They wanted to sing and sign for us. "Lord I give you my heart, I give you my soul, I live for you alone...." More than thirty radiant faces and redeemed lives proclaimed the transformational power of the gospel. All shame had been washed away. The chains of bondage remained behind in a dust-covered past. They were free -- truly free. The God to whom I pray for my girl is the God who had freed and restored them. Big men with tattoos, older aunties, and lithe young women -- what was broken is now whole, and what was lost is found. This image will remain in my mind and soul when I pray to the Lord who has already done the same for Abbie.
Wednesday, March 11, 2009
The right motivation
I'm blaming this lapse on Abbie....hooo, boy, has that girl been keeping us busy!!
She is recovering so well from her trach surgery. Her throat looks beautiful and the scar is fading away quickly. Last night I kissed her all over her neck, and paused there as I realized how long it had been since I could do that. The last time was the day they took her into surgery, with an intubation tube in her mouth, plastered to her face with what seemed like yards of tape. When she came out of the trach surgery I was overjoyed to see her face and kiss her lips, but her neck became a "medical zone" for the next four-and-a-half years. So precious to be able to kiss that very soft skin and feel her breathing. God is faithful!
Physical therapy is also going well. Her standing program finds her standing more and more erect every day. As we get closer to vertical she starts wiggling, trying to move her legs. She is so anxious to begin learning to walk again! I remind her that we need to get those bones strong enough before we can stroll down the hall again. She is moving swiftly forward in that regard, and we are pleased.
But, we have discovered what is most motivating to her in therapy, which I believe is probably a universal motivator for little girls. She wants to talk, to chatter, to be HEARD! Jayna (one of her PTs) had her lying on the table and was holding her leg in air, asking her to bend her knee and bring her heel to the table. She did a couple times, but was unenthused. We then put her voice-output switch on the table so her heel could hit it when she brought it down. Wow! Talk about performance improvement!! Duh -- I don't like doing hard work for no reward, and neither does my girl.
Today we programmed sequential messages in the switch, so Abbie "said", "I did it!", "I did it again!", "Look at me go!", "I am SO good at this!", and "I am the best!" She did very, very well, and her movements were much smoother.
We have up days and down days, but try not to look at each dot on the chart, focusing instead on the general trend. (Sort of like the way we have to watch the stock market these days....) From that viewpoint, Abbie's line is rocketing right up the chart again, and it is a fun thing to watch!
She is recovering so well from her trach surgery. Her throat looks beautiful and the scar is fading away quickly. Last night I kissed her all over her neck, and paused there as I realized how long it had been since I could do that. The last time was the day they took her into surgery, with an intubation tube in her mouth, plastered to her face with what seemed like yards of tape. When she came out of the trach surgery I was overjoyed to see her face and kiss her lips, but her neck became a "medical zone" for the next four-and-a-half years. So precious to be able to kiss that very soft skin and feel her breathing. God is faithful!
Physical therapy is also going well. Her standing program finds her standing more and more erect every day. As we get closer to vertical she starts wiggling, trying to move her legs. She is so anxious to begin learning to walk again! I remind her that we need to get those bones strong enough before we can stroll down the hall again. She is moving swiftly forward in that regard, and we are pleased.
But, we have discovered what is most motivating to her in therapy, which I believe is probably a universal motivator for little girls. She wants to talk, to chatter, to be HEARD! Jayna (one of her PTs) had her lying on the table and was holding her leg in air, asking her to bend her knee and bring her heel to the table. She did a couple times, but was unenthused. We then put her voice-output switch on the table so her heel could hit it when she brought it down. Wow! Talk about performance improvement!! Duh -- I don't like doing hard work for no reward, and neither does my girl.
Today we programmed sequential messages in the switch, so Abbie "said", "I did it!", "I did it again!", "Look at me go!", "I am SO good at this!", and "I am the best!" She did very, very well, and her movements were much smoother.
We have up days and down days, but try not to look at each dot on the chart, focusing instead on the general trend. (Sort of like the way we have to watch the stock market these days....) From that viewpoint, Abbie's line is rocketing right up the chart again, and it is a fun thing to watch!
Monday, February 23, 2009
A Big Step
As I sit on the couch to finally write a more in-depth update about Abbie's surgery and recovery, I sigh and smile at all that has happened in the last few days. As usual, leading up the surgery I didn't realize that I was operating with a large weight on my back, and on my spirit -- my self-awareness is a work in progress. Now that it has been lifted, I can see in hindsight how very stressed I was, and now it feels that I am flying through each day!
This is a picture from my phone of Abbie in the pre-op area (sorry it's a little blurry). Can you tell she was ready for her hole to be closed?? For the first time they let me walk with her all the way into the OR and then talk to her while the anesthesiologist put her to sleep. What a challenging blessing. I was so happy to not have to leave her until the last second, but seeing the OR, the equipment, the staff, the very white walls made what was about to happen to her very, very real.
Dr. T, the ENT did a scope of her throat first to ensure there was not any blockage that would prevent closure of the hole. When I didn't hear anything from the OR for an hour, I knew they'd gone ahead with the surgery. Fortunately, my faithful friend Katie arrived in the cafeteria to wait through yet another surgery with me -- and she brought great food!!
A couple hours passed, and as Abbie moved from the ENT team to the GI/General Surgery team I was thrilled to see her ENT come into the cafeteria carrying photographs of the procedure. As I mentioned, this is a very new technique, so they took pictures to better describe how it's done. Looking at an open wound on my daughter's throat is not something I'd readily do every day, but I was thrilled to see how the closure of a large (3mm by 15mm) hole was done so beautifully.
We met the GI and surgeon in the recovery room, and they, too, had pictures -- again, none that we will frame and place on the piano, but interesting none the less. The endoscope showed some irritation on the esophagus, which we'd expected given her reflux lately. The stomach looked fine -- the area where there may have been an ulcer was caught up into the closure of her previous G-tube site, so we couldn't see anything there. But, then we saw lots of small bumps at the beginning of her small intestine, which the GI biopsied.
I have to admit, at seeing those, I thought, "Sheesh -- I really don't want to deal with abnormal intestinal growths, too. Can we just stick with the current buffet of challenges without adding more to our plate?" The results of the biopsies came in a couple days later, and are within the normal range - so for now we can just remain seated at the table, working through our entree of bone density/hip recovery, and the side portions of respiratory, spasticity, and diet issues.
We stayed in the hospital until Saturday morning, because after the trach surgery, Abbie had two little soft tubes sticking out of the incision, to drain air that may have collected in the area. One was removed on Friday, but the surgeon wanted to wait until Saturday to remove the second. Ray and our nurse, Rae, helped get Abbie settled at home while I went directly to the twins' school for a volunteer shift. I'd had to cancel my last one, so I didn't want to flake out twice in a row. As soon as I arrived home from the school, I changed clothes while Ray patiently paced, and then we headed out the door for Waikiki. We had a black tie event that evening, so he surprised me by booking a room in the hotel hosting the ball.
I felt like an almost-put-together grown-up wearing heels, jewelry AND make-up at the same time. We got to catch up with many good friends. It was especially encouraging to run into people who were completely up to date on Abbie -- one said, "I was in Cancun this week, but was able to check in after surgery...how is she doing now??" Amazing. Then, Ray and I both got to sleep all night. THAT was the real treat of the event. We came home completely refreshed, all the stress and worry of the week completely washed away.
Abbie is not needing any pain meds now, and slept through the night, satting 98-100 last night. It seems that she's turned the corner pain-wise. She is not hesitant to cough, and is no longer complaining when she does. We made it back to the beach this morning, for the first time since her surgery. God met us with the perfect weather -- we could see Haleakala on Maui, as well as Lanai and Molokai. The air was still, but cool, the mountains were unshrouded and it seemed, for those moments, that all was right in the world.
Thank you for praying our girl through yet another obstacle. Waiting in the pre-op area, I reminded her that she would never be alone, and that many, many people were praying for her. The smile you see on her face above matches the reaction she gave me to that reminder. Bless you all!!
This is a picture from my phone of Abbie in the pre-op area (sorry it's a little blurry). Can you tell she was ready for her hole to be closed?? For the first time they let me walk with her all the way into the OR and then talk to her while the anesthesiologist put her to sleep. What a challenging blessing. I was so happy to not have to leave her until the last second, but seeing the OR, the equipment, the staff, the very white walls made what was about to happen to her very, very real.
Dr. T, the ENT did a scope of her throat first to ensure there was not any blockage that would prevent closure of the hole. When I didn't hear anything from the OR for an hour, I knew they'd gone ahead with the surgery. Fortunately, my faithful friend Katie arrived in the cafeteria to wait through yet another surgery with me -- and she brought great food!!
A couple hours passed, and as Abbie moved from the ENT team to the GI/General Surgery team I was thrilled to see her ENT come into the cafeteria carrying photographs of the procedure. As I mentioned, this is a very new technique, so they took pictures to better describe how it's done. Looking at an open wound on my daughter's throat is not something I'd readily do every day, but I was thrilled to see how the closure of a large (3mm by 15mm) hole was done so beautifully.
We met the GI and surgeon in the recovery room, and they, too, had pictures -- again, none that we will frame and place on the piano, but interesting none the less. The endoscope showed some irritation on the esophagus, which we'd expected given her reflux lately. The stomach looked fine -- the area where there may have been an ulcer was caught up into the closure of her previous G-tube site, so we couldn't see anything there. But, then we saw lots of small bumps at the beginning of her small intestine, which the GI biopsied.
I have to admit, at seeing those, I thought, "Sheesh -- I really don't want to deal with abnormal intestinal growths, too. Can we just stick with the current buffet of challenges without adding more to our plate?" The results of the biopsies came in a couple days later, and are within the normal range - so for now we can just remain seated at the table, working through our entree of bone density/hip recovery, and the side portions of respiratory, spasticity, and diet issues.
We stayed in the hospital until Saturday morning, because after the trach surgery, Abbie had two little soft tubes sticking out of the incision, to drain air that may have collected in the area. One was removed on Friday, but the surgeon wanted to wait until Saturday to remove the second. Ray and our nurse, Rae, helped get Abbie settled at home while I went directly to the twins' school for a volunteer shift. I'd had to cancel my last one, so I didn't want to flake out twice in a row. As soon as I arrived home from the school, I changed clothes while Ray patiently paced, and then we headed out the door for Waikiki. We had a black tie event that evening, so he surprised me by booking a room in the hotel hosting the ball.
I felt like an almost-put-together grown-up wearing heels, jewelry AND make-up at the same time. We got to catch up with many good friends. It was especially encouraging to run into people who were completely up to date on Abbie -- one said, "I was in Cancun this week, but was able to check in after surgery...how is she doing now??" Amazing. Then, Ray and I both got to sleep all night. THAT was the real treat of the event. We came home completely refreshed, all the stress and worry of the week completely washed away.
Abbie is not needing any pain meds now, and slept through the night, satting 98-100 last night. It seems that she's turned the corner pain-wise. She is not hesitant to cough, and is no longer complaining when she does. We made it back to the beach this morning, for the first time since her surgery. God met us with the perfect weather -- we could see Haleakala on Maui, as well as Lanai and Molokai. The air was still, but cool, the mountains were unshrouded and it seemed, for those moments, that all was right in the world.
Thank you for praying our girl through yet another obstacle. Waiting in the pre-op area, I reminded her that she would never be alone, and that many, many people were praying for her. The smile you see on her face above matches the reaction she gave me to that reminder. Bless you all!!
Thursday, February 19, 2009
Abbie is Awesome!
Just got home to take a quick nap while Ray watches over Abbie, but wanted to give a quick update before I head off to sleep.
Abbie did amazingly well through the 3.5 hours of surgery, and even in the recovery room was coughing all the mucous and blood up herself. That allayed my only fear about closing her trach stoma. If she is willing and able to cough so strongly right after surgery, I have no doubt she will be more than able to take care of her airway independently when she is healed. HURRAH!
Her G-tube button was moved more towards the middle of her belly, and is already much more comfortable than her old site.
It seems now that she will be an inpatient until Saturday. But, she is comfortable, and doing well.
Thanks to all of you for your prayers -- they were powerful, and God just HAD to listen. Abbie was grinning in the pre-op area as we changed into the hospital gown. She knew it was time, and had no fear. Thanks to knowing all of you were praying for her, I didn't either.
God is good!
Abbie did amazingly well through the 3.5 hours of surgery, and even in the recovery room was coughing all the mucous and blood up herself. That allayed my only fear about closing her trach stoma. If she is willing and able to cough so strongly right after surgery, I have no doubt she will be more than able to take care of her airway independently when she is healed. HURRAH!
Her G-tube button was moved more towards the middle of her belly, and is already much more comfortable than her old site.
It seems now that she will be an inpatient until Saturday. But, she is comfortable, and doing well.
Thanks to all of you for your prayers -- they were powerful, and God just HAD to listen. Abbie was grinning in the pre-op area as we changed into the hospital gown. She knew it was time, and had no fear. Thanks to knowing all of you were praying for her, I didn't either.
God is good!
Friday, February 13, 2009
Perfect Timing
So many days when my heart is hurting or my spirit is weary I plead, "Hurry up, Lord...please." Yet, even while the petition is leaving my lips I am reassured that everything is happening at exactly the pace it is supposed to, even when that is to my disappointment.
We got a huge exclamation point to that thought today when we visited Abbie's ENT for her pre-op appointment. I was curious about how the surgeon was going to close a hole that is fairly big. I found out that normally it requires taking a piece of cartilage from the ribs (another incision...ugh), and then using it to fill in while the surgeon pulls both end of the hole together. The normal outcome is that a divot remains in the throat, and, even more importantly, the windpipe is often narrowed during the closure procedure, to allow both ends to meet. This narrowing can lead to respiratory distress either immediately after surgery, or down the line. Ugh again.
But, but, but...God's stopwatch for Abbie was beeping, "right time, right time" today. Finally. After scheduling this procedure four times in the last two years He showed us why we waited. Abbie's surgeon has recently begun using a resorbable material (meaning over time it disappears into the body) to do closure on large trach stomas. As far as she knows she is the first to use this material for this purpose. There are huge benefits for Abbie: no cartilage needed from the rib, no divot left in the neck -- it will be smooth with just a straight scar across it, and her windpipe will not be narrowed. It is likely that Dr. T. will publish an article in a medical journal after Abbie's surgery so that other surgeons could consider using this technique. All of the things that would have concerned me about this surgery vanished in an instant, thanks to the brilliance of Dr. T. I cannot explain how incredibly blessed I feel.
We'll plan on spending 2 days in the hospital (for her trach, not sure what the GI will say yet). So, perhaps at this time next week we'll be home with our ready-to-swim Abbie. I now that she'll be tremendously more comfortable. She cried in her carseat on the way to PT today, because her tummy just hurts so much. We had to lay her down the backseat on the way home. Please pray for her comfort for the next five days. It is stunning to watch one little girl endure so much, and yet smile and press on.
We got a huge exclamation point to that thought today when we visited Abbie's ENT for her pre-op appointment. I was curious about how the surgeon was going to close a hole that is fairly big. I found out that normally it requires taking a piece of cartilage from the ribs (another incision...ugh), and then using it to fill in while the surgeon pulls both end of the hole together. The normal outcome is that a divot remains in the throat, and, even more importantly, the windpipe is often narrowed during the closure procedure, to allow both ends to meet. This narrowing can lead to respiratory distress either immediately after surgery, or down the line. Ugh again.
But, but, but...God's stopwatch for Abbie was beeping, "right time, right time" today. Finally. After scheduling this procedure four times in the last two years He showed us why we waited. Abbie's surgeon has recently begun using a resorbable material (meaning over time it disappears into the body) to do closure on large trach stomas. As far as she knows she is the first to use this material for this purpose. There are huge benefits for Abbie: no cartilage needed from the rib, no divot left in the neck -- it will be smooth with just a straight scar across it, and her windpipe will not be narrowed. It is likely that Dr. T. will publish an article in a medical journal after Abbie's surgery so that other surgeons could consider using this technique. All of the things that would have concerned me about this surgery vanished in an instant, thanks to the brilliance of Dr. T. I cannot explain how incredibly blessed I feel.
We'll plan on spending 2 days in the hospital (for her trach, not sure what the GI will say yet). So, perhaps at this time next week we'll be home with our ready-to-swim Abbie. I now that she'll be tremendously more comfortable. She cried in her carseat on the way to PT today, because her tummy just hurts so much. We had to lay her down the backseat on the way home. Please pray for her comfort for the next five days. It is stunning to watch one little girl endure so much, and yet smile and press on.
Monday, February 09, 2009
Revolving door
A day full of fruitful phone calls resulted in us being all set for the surgery to close Abbie's tracheostomy stoma and move her G-tube button to a new site. She will be going to the OR at 2:30 pm next Wednesday, Feb. 18. I found it interesting that, this being Abbie's third surgery in four month, she had one on 10/20, 12/19, and now 2/18...I told Ray, "I sure hope nothing happens on 4/17..because obviously we have a little pattern going!" It seems the Recovery Room has a revolving door with Abbie's name on it. Rest assured, next week I am ripping it out and burning it!
Each part of the procedure should take about an hour. I know we'll be spending at least one night in the hospital, but am unsure of the plan after that. Abbie was thrilled when we told her that she won't have a hole in her throat any more, but was apparently hoping that stoma-closure was the Tooth Fairy's side job, because she was extremely upset to hear that this involved another surgery. I tried to reassure her that this time she won't be waking up with huge casts, and that the pain won't be anywhere near hip surgery or broken femurs. Little consolation to a pretty traumatized little girl. Please pray for her to be physically AND emotionally ready for this.
I am not sure how to feel, either. Life, particularly fun things like swimming and going to the beach, will be so much easier without an open stoma. I was so excited to get everything coordinated, but now that the process is complete I find myself in tears with that now too-familiar knot of fear and foreboding in my stomach.
Two things (well, actually one in two different packages) save me.
The first is that Abbie and I have been taking morning walks to the beach. The beauty astounds me afresh each time we visit.
These are some pictures from my phone this morning, all taken from one spot:
Aside from getting some perspective on just how huge God is, being at the beach reveals other lessons as well. Like how the morning sun always glints across the water to land right at our feet. As we walk down the beach it follows us like a spotlight, as if we are the only visitors, the only ones worthy of its attention. I'm sure every person on the beach feels that same way -- as somehow the sun manages to focus on each of us individually. God is like that. Just because another is basking in the glow of His love, or resting in the calm of His protection, does not mean that His eye is off us for one second. We are each the star of the show.
The waves on the shore are small and calm, as bigger waves hit breaks a little ways off the shore. I love hearing the distinct sound of both, and realized I am so grateful that God speaks to us in both tones of voice. When we are young, new in faith, weak, despairing or weary, He is gentle, allowing His love and lessons to lap at the edges of our hearts until we absorb them.
When we are ready, He calls us out to the deep - to the spray blowing from crests of waves as they fight their way down to the sea again, creating the roar that never ceases. I am so glad that He is both gentle and wild, and that these qualities exist on a continuum. Those little lapping waves lead my eye, and my heart, right out to their fierce brethren. I can wade or I can dive in, but either way I find Him.
Abbie loves the beach as much as I do, and the morning light is precious time for us to be together in the unquiet silence.
The second saving grace is just once again finding God in His Word. My favorite teacher, Beth Moore, is taking me on another adventure -- "Believing God" -- boy, is this appropriate timing for this study! One thing that's hit home again is the utter effectiveness of praying God's words right back to Him. So, if you know any scripture that you think would apply to Abbie in the next week or two, may I be so bold as to ask you to pray it over her?
We went to therapy today for the first time since she broke her legs. It went well, and she stood beautifully. It's just hard knowing we are going to have another hurdle before she can really zoom. I am hopeful, though, that once her belly and throat are comfortable, it will be even easier for her.
I feel sometimes lately that we are constantly asking for prayer. As I typed that with a sense of regret, I realized, "We ALL need constant prayer!!" So, I just want to remind you that Abbie does love to pray for people, so please email any requests you may have for us to varasix@aol.com, and then let us know how things turn out. Almost as much as praying, Abbie loves to hear " the rest of the story."
As this Valentine's Day approaches, please remember, it doesn't matter if you are married or not, engaged or not, in love with another person or not -- there is Someone who is madly in love with you. Trust me, He meets me at the beach every morning.
Each part of the procedure should take about an hour. I know we'll be spending at least one night in the hospital, but am unsure of the plan after that. Abbie was thrilled when we told her that she won't have a hole in her throat any more, but was apparently hoping that stoma-closure was the Tooth Fairy's side job, because she was extremely upset to hear that this involved another surgery. I tried to reassure her that this time she won't be waking up with huge casts, and that the pain won't be anywhere near hip surgery or broken femurs. Little consolation to a pretty traumatized little girl. Please pray for her to be physically AND emotionally ready for this.
I am not sure how to feel, either. Life, particularly fun things like swimming and going to the beach, will be so much easier without an open stoma. I was so excited to get everything coordinated, but now that the process is complete I find myself in tears with that now too-familiar knot of fear and foreboding in my stomach.
Two things (well, actually one in two different packages) save me.
The first is that Abbie and I have been taking morning walks to the beach. The beauty astounds me afresh each time we visit.
These are some pictures from my phone this morning, all taken from one spot:
Aside from getting some perspective on just how huge God is, being at the beach reveals other lessons as well. Like how the morning sun always glints across the water to land right at our feet. As we walk down the beach it follows us like a spotlight, as if we are the only visitors, the only ones worthy of its attention. I'm sure every person on the beach feels that same way -- as somehow the sun manages to focus on each of us individually. God is like that. Just because another is basking in the glow of His love, or resting in the calm of His protection, does not mean that His eye is off us for one second. We are each the star of the show.
The waves on the shore are small and calm, as bigger waves hit breaks a little ways off the shore. I love hearing the distinct sound of both, and realized I am so grateful that God speaks to us in both tones of voice. When we are young, new in faith, weak, despairing or weary, He is gentle, allowing His love and lessons to lap at the edges of our hearts until we absorb them.
When we are ready, He calls us out to the deep - to the spray blowing from crests of waves as they fight their way down to the sea again, creating the roar that never ceases. I am so glad that He is both gentle and wild, and that these qualities exist on a continuum. Those little lapping waves lead my eye, and my heart, right out to their fierce brethren. I can wade or I can dive in, but either way I find Him.
Abbie loves the beach as much as I do, and the morning light is precious time for us to be together in the unquiet silence.
The second saving grace is just once again finding God in His Word. My favorite teacher, Beth Moore, is taking me on another adventure -- "Believing God" -- boy, is this appropriate timing for this study! One thing that's hit home again is the utter effectiveness of praying God's words right back to Him. So, if you know any scripture that you think would apply to Abbie in the next week or two, may I be so bold as to ask you to pray it over her?
We went to therapy today for the first time since she broke her legs. It went well, and she stood beautifully. It's just hard knowing we are going to have another hurdle before she can really zoom. I am hopeful, though, that once her belly and throat are comfortable, it will be even easier for her.
I feel sometimes lately that we are constantly asking for prayer. As I typed that with a sense of regret, I realized, "We ALL need constant prayer!!" So, I just want to remind you that Abbie does love to pray for people, so please email any requests you may have for us to varasix@aol.com, and then let us know how things turn out. Almost as much as praying, Abbie loves to hear " the rest of the story."
As this Valentine's Day approaches, please remember, it doesn't matter if you are married or not, engaged or not, in love with another person or not -- there is Someone who is madly in love with you. Trust me, He meets me at the beach every morning.
Friday, January 30, 2009
Tummy Troubles
We met our new, wonderful Gastroenterologist on Wednesday afternoon. He spent a lot of time with us, listened well, and came to two reasonable conclusions. I was so relieved that an infection wasn't one of them!
Problem #1 is that it seems that the pain meds Abbie needed after she fractured her femurs (much more than she needed after hip surgery) slowed down the rate at which her stomach empties. This allowed for a build up of acid, which appears to have really targeted the irritated area inside her stomach where the balloon that keeps the G-tube button in places rests. It is also giving her reflux at this point which explains the extra secretions, the vomiting at the end of meals, and why she can't tolerate her usual feeding volumes or rate. He started her on 3 months of Prevacid to give the ulcers a chance to heal and deal with the reflux. I am not fond of acid-blockers because they hamper nutrient uptake, but in this case we don't really have a choice. I did confirm with him that this is a short-term option. After her dose this morning, her muscle tone just about disappeared. She was so relaxed on my lap in the rocking chair that I didn't want to move, ever. So, it seems the acid, the ulcers and the reflux have been greatly increasing her muscle tone lately.
Problem #2 is that, as she has grown, her G-tube button has ended up right under her ribs. You really can't touch her button without feeling ribs. This means it is likely that the stomach lining is getting rubbed between her ribs and the balloon each time she breathes, move, coughs etc. It is worse when she sits up, which explains why she cannot tolerate sitting at more than a 45 degree angle, and even that is difficult after a while. What a conundrum. People with reflux need to eat sitting straight up, but her button pain prevents this...leading to worse effects from the reflux. The button has to be surgically moved. Ugh. Can I just admit that I am REALLY weary of seeing the OR recovery room, and of having to put Abbie under anesthesia.
We decided to try another type of G-tube button in her tummy to see if that would buy us enough time to coordinate this surgery with the trach closure surgery I was planning on scheduling later ,in the Spring, thinking that her ENT would not close the stoma during the winter.
Abbie was in so much pain last night, I called the ENT's office to schedule "sooner rather than later", thinking it would mean March. Iwas shocked when her nurse said, "Oh! I have a hole in next Friday's OR schedule. Let me see if I can get the GI and surgeon coordinated for that time as well." Ummmmm - hold on, let me gather myself. Back to the OR in a week? Another groan. But, it would be great to get our girl through this and out the other side.
I am still waiting to see if the docs can work their schedules out for 2/6, but if not it seems that we will certainly do it sometime in Feb. Would you please pray for Abbie's comfort until then? She didn't tolerate her first feeding, and then couldn't even keep water down when she was in the stroller for her appointment.
On the very bright side: we saw her orthopedic surgeon today and he was pleased with the Xrays, saying her bone strength is sufficient to start standing and going to PT again. I put her in the stander tonight, just to see how she'd do. She stood for 10 minutes, which was longer than I'd expected, and she stood at a higher angle than I thought she'd tolerate. She was VERY relieved and happy to be standing. Many smiles. Afterward, she fell into a peaceful and contented sleep, even with four noisy brothers in her room.
I think that what I see as mountains or hurdles, Abbie just sees as "the next thing" and is willing and anxious to get on with it. She humbles me.
Problem #1 is that it seems that the pain meds Abbie needed after she fractured her femurs (much more than she needed after hip surgery) slowed down the rate at which her stomach empties. This allowed for a build up of acid, which appears to have really targeted the irritated area inside her stomach where the balloon that keeps the G-tube button in places rests. It is also giving her reflux at this point which explains the extra secretions, the vomiting at the end of meals, and why she can't tolerate her usual feeding volumes or rate. He started her on 3 months of Prevacid to give the ulcers a chance to heal and deal with the reflux. I am not fond of acid-blockers because they hamper nutrient uptake, but in this case we don't really have a choice. I did confirm with him that this is a short-term option. After her dose this morning, her muscle tone just about disappeared. She was so relaxed on my lap in the rocking chair that I didn't want to move, ever. So, it seems the acid, the ulcers and the reflux have been greatly increasing her muscle tone lately.
Problem #2 is that, as she has grown, her G-tube button has ended up right under her ribs. You really can't touch her button without feeling ribs. This means it is likely that the stomach lining is getting rubbed between her ribs and the balloon each time she breathes, move, coughs etc. It is worse when she sits up, which explains why she cannot tolerate sitting at more than a 45 degree angle, and even that is difficult after a while. What a conundrum. People with reflux need to eat sitting straight up, but her button pain prevents this...leading to worse effects from the reflux. The button has to be surgically moved. Ugh. Can I just admit that I am REALLY weary of seeing the OR recovery room, and of having to put Abbie under anesthesia.
We decided to try another type of G-tube button in her tummy to see if that would buy us enough time to coordinate this surgery with the trach closure surgery I was planning on scheduling later ,in the Spring, thinking that her ENT would not close the stoma during the winter.
Abbie was in so much pain last night, I called the ENT's office to schedule "sooner rather than later", thinking it would mean March. Iwas shocked when her nurse said, "Oh! I have a hole in next Friday's OR schedule. Let me see if I can get the GI and surgeon coordinated for that time as well." Ummmmm - hold on, let me gather myself. Back to the OR in a week? Another groan. But, it would be great to get our girl through this and out the other side.
I am still waiting to see if the docs can work their schedules out for 2/6, but if not it seems that we will certainly do it sometime in Feb. Would you please pray for Abbie's comfort until then? She didn't tolerate her first feeding, and then couldn't even keep water down when she was in the stroller for her appointment.
On the very bright side: we saw her orthopedic surgeon today and he was pleased with the Xrays, saying her bone strength is sufficient to start standing and going to PT again. I put her in the stander tonight, just to see how she'd do. She stood for 10 minutes, which was longer than I'd expected, and she stood at a higher angle than I thought she'd tolerate. She was VERY relieved and happy to be standing. Many smiles. Afterward, she fell into a peaceful and contented sleep, even with four noisy brothers in her room.
I think that what I see as mountains or hurdles, Abbie just sees as "the next thing" and is willing and anxious to get on with it. She humbles me.
Monday, January 26, 2009
Saying it out loud
I have to admit...I dragged myself to the computer to blog today. Nothing is dramatically wrong, but sometimes it's harder when things are just a little bit off, only slightly "not right." That's where it seem we are with our sweet girl. She still gives smiles by the buckets, is enjoying reading, painting, and her movies, but is just not herself.
I think it has to do with her tummy. We will see a new GI this Wednesday to see if together we can figure this out. To admit my paranoia, I must tell you that I've read of several families recently who've dealt with rather aggressive and totally unexpected infections around G-tube sites. One of the girls died. So....as she refuses to sit in her stroller, whimpers as she reaches for her knees, and cries sometimes when her feedings begin my mind rockets off the launching pad directly towards the darkest thoughts and worst scenarios. I am just hoping for answers. By now, I can deal with just about anything as long as it has a face and name.
We are rebounding from a tiring and emotional week. Ray was out of town, so of course the stomach flu came to visit. First RJ swooned, then Matt swayed, and by Friday afternoon I collapsed in a dysfunctional heap. Matt (recovered by then), stayed awake in Abbie's room until after midnight so that I could rest on the floor. He ended up sleeping in the recliner - my loving, caring hero that night.
Saturday brought to the fore the emotions Ray and I had been sorting through all week. That evening was a wonderful event celebrating Kapiolani hospital's 100th birthday. This is where Abbie's life was saved, and where Ray serves as CEO. The program was all about the impact of the hospital -- from being greeted by young children in t-shirts reading "Beating Leukemia" or "Born Under 2 pounds" (my tears started early), to vignettes from families who received life-saving care. It was finally Ray's turn. He usually only speaks as CEO, but this night he was also Abbie's dad, which required me to find photographs to accompany his short speech.
This task broke my heart. As I wrote to a friend, "Time has helped dull the razor edges of our loss, but seeing her pictures from before makes us think, once again, what could have/should have/would have been." Honestly, I was dreading seeing her bright, shiny, sassy picture on those giant screens.
Flash - there she was - brand new yellow sandals with white flowers, a dress with the connected panties unsnapped and hanging down, smile to light a stadium. Flash - on a ventilator, wearing her Elmo hospital gown. So small, so hurt, so helpless. One more flash brought our smiling girl back, in the pool in the arms of her Daddy. Older, different, but as beautiful and precious as ever. I held my breath through the whole speech.
In the darkness I sat in vulnerable silence, only crying on the inside. Then, the Mayor, who was sitting next to Ray's chair reached over and pulled me into a hug, at which point the tears came. After living this story for so long, I didn't know that it would be so hard to share, face-to-face, with that many people. It's hard even writing about it now -- being so exposed, I guess. Showing people, through the photographs, exactly what we lost, and what we have been given.
But, the last thought that comes to my mind is, "I couldn't be prouder of her."
I think it has to do with her tummy. We will see a new GI this Wednesday to see if together we can figure this out. To admit my paranoia, I must tell you that I've read of several families recently who've dealt with rather aggressive and totally unexpected infections around G-tube sites. One of the girls died. So....as she refuses to sit in her stroller, whimpers as she reaches for her knees, and cries sometimes when her feedings begin my mind rockets off the launching pad directly towards the darkest thoughts and worst scenarios. I am just hoping for answers. By now, I can deal with just about anything as long as it has a face and name.
We are rebounding from a tiring and emotional week. Ray was out of town, so of course the stomach flu came to visit. First RJ swooned, then Matt swayed, and by Friday afternoon I collapsed in a dysfunctional heap. Matt (recovered by then), stayed awake in Abbie's room until after midnight so that I could rest on the floor. He ended up sleeping in the recliner - my loving, caring hero that night.
Saturday brought to the fore the emotions Ray and I had been sorting through all week. That evening was a wonderful event celebrating Kapiolani hospital's 100th birthday. This is where Abbie's life was saved, and where Ray serves as CEO. The program was all about the impact of the hospital -- from being greeted by young children in t-shirts reading "Beating Leukemia" or "Born Under 2 pounds" (my tears started early), to vignettes from families who received life-saving care. It was finally Ray's turn. He usually only speaks as CEO, but this night he was also Abbie's dad, which required me to find photographs to accompany his short speech.
This task broke my heart. As I wrote to a friend, "Time has helped dull the razor edges of our loss, but seeing her pictures from before makes us think, once again, what could have/should have/would have been." Honestly, I was dreading seeing her bright, shiny, sassy picture on those giant screens.
Flash - there she was - brand new yellow sandals with white flowers, a dress with the connected panties unsnapped and hanging down, smile to light a stadium. Flash - on a ventilator, wearing her Elmo hospital gown. So small, so hurt, so helpless. One more flash brought our smiling girl back, in the pool in the arms of her Daddy. Older, different, but as beautiful and precious as ever. I held my breath through the whole speech.
In the darkness I sat in vulnerable silence, only crying on the inside. Then, the Mayor, who was sitting next to Ray's chair reached over and pulled me into a hug, at which point the tears came. After living this story for so long, I didn't know that it would be so hard to share, face-to-face, with that many people. It's hard even writing about it now -- being so exposed, I guess. Showing people, through the photographs, exactly what we lost, and what we have been given.
But, the last thought that comes to my mind is, "I couldn't be prouder of her."
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