Received a call Wednesday from the Alliance. They've reconsidered and approved Allie's power chair. The Director that phoned was very sorry for what had transpired. Yay! Having this chair will be huge for Al.
As always, thank you all for your support and love. You truly do make the difference:)
Allie
Friday, April 22, 2011
Sunday, April 17, 2011
Outraged!!!
Dear Family and Friends,
Mailed to Allie on April 1, 2011
from Central California Alliance for Health:
Notice of Action
About your treatment request
A Customized Power Wheelchair
This request is denied by the Alliance because:
On March 16, 2010 (think they meant 2011) the Alliance requested that National Seating & Mobility send more clincal documentation in regards to your medical history and your specific needs. Though National Seating & Mobility did send clincial information there are some parts of your history that the Alliance still needs clarification on in order to ensure your needs are met as appropriately as possible. Therefore, this power wheelchair request is currently denied.
To make a long and anger provoking story short, when Allie turned 21 the "pocket" overseeing payment of her medical supplies changed. So, although we have spent over a year working to get the necessary referrals and appointments in place so that she could trial the chair, and receive the correct prescription, so that it could finally be ordered...they now tell us we have to start over! They have no history on Allie she tells me. This is a very expensive chair, she tells me. We need her to see new doctors and new therapists in our area. Are you kidding me? The chair was prescribed by therapists at Valley Medical.....one of the leading spinal cord rehab facilities in the world. And I have boxes of medical reports and history I could send you describing my daughter's medical condition and history. Yeah, sorry my daughter's disability is such that her chair is a bit extreme compared to most. I guess that goes along with the fact that her injury is a bit extreme compared to most. In the latest conversation I had with this "case manager", I was informed that she could no longer talk with me, since Allie is an adult and apparently the POA I faxed to them was insufficient. I am completely outraged. I was wrong -- our health system is not broken -- it is criminal. My daughter has been sitting in an ill fitting manual chair for close to two years. Now they tell me, we have to start over. How is this cost effective? Sounds to me like somebody is spending a dollar to save a nickel. How can an entity that has "alliance for health" in its name, demonstrate such lack of compassion and concern for my daughter's physical as well as emotional state? How much longer will she be stuck in this dang chair! Isn't life tough enough?
On the upside Allie received the FES Bike she bought. After a few frustrating tries/adustments and a new seat cushion purchase, she is up and going. It's awesome to watch her legs move. The first time Auntie Vicky saw Allie using her bike, her reaction was the same as mine was when Al first used the bike at Valley Medical. Guess I'm not the only cry baby in the family :).We are excited at the positive impact this bike will have on her overall condition. Hopefully, soon she will have an opportunity to go to Dominican, to trial the upper body part of the bike.
We are enjoying the awesome weather. Allie passes her days by enjoying the sunshine, using her laptop, and now she has her bike to use. Her best times remain those spent when friends visit or the still all to rare occasion, when she gets to go out with them. She looks forward to the frequent visits from her uncle, aunts, and cousins. Connor, his mom and sister made it over for a visit a couple of weeks ago. It was great to see them. We wish they lived closer or that it was easier for Al to travel.
Allie and Marsha are getting along great. Once again I feel so lucky to have yet another awesome person in my daughter's life. It is comforting to know that Allie has someone we both respect and trust, not just as a caregiver, but as a friend to talk to, especially when my exhaustion, frustration and sadness get the best of me and my patience has run out (not to mention my back).
We continue to pray for Allie's breath. I visualize her walking. I dream of her laughing outloud. We believe in my daughter's recovery. We believe in the efforts of those working to find the cure. I just wish some things didn't have to be so difficult in the meantime.
Thank you for listening, for your prayers, for your love and support. Please continue to visualize my baby girl's recovery.
In closing, our thoughts and prayers go out to the family and friends of Kirsten Wetterhorn, a young woman from our valley who was just lost to us in an auto accident. I wish I knew words that could bring comfort in this their darkest time. Please know our hearts ache from your tragic loss.
Love, Peace & Happiness,
Deborah
Mailed to Allie on April 1, 2011
from Central California Alliance for Health:
Notice of Action
About your treatment request
A Customized Power Wheelchair
This request is denied by the Alliance because:
On March 16, 2010 (think they meant 2011) the Alliance requested that National Seating & Mobility send more clincal documentation in regards to your medical history and your specific needs. Though National Seating & Mobility did send clincial information there are some parts of your history that the Alliance still needs clarification on in order to ensure your needs are met as appropriately as possible. Therefore, this power wheelchair request is currently denied.
To make a long and anger provoking story short, when Allie turned 21 the "pocket" overseeing payment of her medical supplies changed. So, although we have spent over a year working to get the necessary referrals and appointments in place so that she could trial the chair, and receive the correct prescription, so that it could finally be ordered...they now tell us we have to start over! They have no history on Allie she tells me. This is a very expensive chair, she tells me. We need her to see new doctors and new therapists in our area. Are you kidding me? The chair was prescribed by therapists at Valley Medical.....one of the leading spinal cord rehab facilities in the world. And I have boxes of medical reports and history I could send you describing my daughter's medical condition and history. Yeah, sorry my daughter's disability is such that her chair is a bit extreme compared to most. I guess that goes along with the fact that her injury is a bit extreme compared to most. In the latest conversation I had with this "case manager", I was informed that she could no longer talk with me, since Allie is an adult and apparently the POA I faxed to them was insufficient. I am completely outraged. I was wrong -- our health system is not broken -- it is criminal. My daughter has been sitting in an ill fitting manual chair for close to two years. Now they tell me, we have to start over. How is this cost effective? Sounds to me like somebody is spending a dollar to save a nickel. How can an entity that has "alliance for health" in its name, demonstrate such lack of compassion and concern for my daughter's physical as well as emotional state? How much longer will she be stuck in this dang chair! Isn't life tough enough?
On the upside Allie received the FES Bike she bought. After a few frustrating tries/adustments and a new seat cushion purchase, she is up and going. It's awesome to watch her legs move. The first time Auntie Vicky saw Allie using her bike, her reaction was the same as mine was when Al first used the bike at Valley Medical. Guess I'm not the only cry baby in the family :).We are excited at the positive impact this bike will have on her overall condition. Hopefully, soon she will have an opportunity to go to Dominican, to trial the upper body part of the bike.
We are enjoying the awesome weather. Allie passes her days by enjoying the sunshine, using her laptop, and now she has her bike to use. Her best times remain those spent when friends visit or the still all to rare occasion, when she gets to go out with them. She looks forward to the frequent visits from her uncle, aunts, and cousins. Connor, his mom and sister made it over for a visit a couple of weeks ago. It was great to see them. We wish they lived closer or that it was easier for Al to travel.
Allie and Marsha are getting along great. Once again I feel so lucky to have yet another awesome person in my daughter's life. It is comforting to know that Allie has someone we both respect and trust, not just as a caregiver, but as a friend to talk to, especially when my exhaustion, frustration and sadness get the best of me and my patience has run out (not to mention my back).
We continue to pray for Allie's breath. I visualize her walking. I dream of her laughing outloud. We believe in my daughter's recovery. We believe in the efforts of those working to find the cure. I just wish some things didn't have to be so difficult in the meantime.
Thank you for listening, for your prayers, for your love and support. Please continue to visualize my baby girl's recovery.
In closing, our thoughts and prayers go out to the family and friends of Kirsten Wetterhorn, a young woman from our valley who was just lost to us in an auto accident. I wish I knew words that could bring comfort in this their darkest time. Please know our hearts ache from your tragic loss.
Love, Peace & Happiness,
Deborah
Monday, February 28, 2011
Ditching mom and loving it!
Dear Family and Friends,
The past month things have continued to move in the right direction for Allie. Ron and I watched with excitement, and I'd be fibbing if I didn't admit to a bit of fear, mixed with an incredible amount of pride in our daughter and her friends, as she went off with without either of us, for the first time in almost two years. The week prior we had a "trial run" when Ron, Anjel, Uncle Doug and I took Allie to meet a group of her friends at a restaurant. Allie went off with Jordan to meet the group and have dinner at one end of the place while we enjoyed our dinner on the other side. We didn't see her again until we'd finished dinner and went outside to find her safely loaded up in her van and ready to go. "My friends want to show you that they can safely take me places without you" she tells me, with a grin on her face. So, when later that night Allie shared with me her plans to go out with Jordan the following weekend, I responded with the non-commital "we'll see". My daughter responded with something about it being time and if she couldn't have even this small resembalance of her former life then what, she asked, was the point? "I love you mom but I'm ready to ditch ya."
So began the conversations with myself for the next few days. Allie's 21 and is a smart young woman, I told myself. She's a survior and does a good job of looking after those that are responsible for looking after her. She is extremely in tune with her body and is all to aware of the signs that warn her that something is going wrong. Jordan is a competent, sharp and loving friend. She's seen Al at the worst of times and is familiar with her care. Allie deserves whatever quality of life she can find for herself. So when Jordan, Josh and Melissa showed up that weekend ready to go, I told myself it was time for me to let go. Jordan and I went over a few things and they were off. Because, I trust Jordan as much as I do I wasn't quite as crazy with worry as I thought I might be. I did have directions to her house and will admit to having some errands to run near there for a couple of hours :) We kept in touch via texts and it was clear from the smart alec messages I was getting, that Allie was having a teriffic time. Allie felt so loved and lucky to have a friend like Jordan who was willing to step up and take on such responsibility. They delivered her home safe and sound with a giant smile on her face. Thank you guys you are the absolute best!
Another one of Allie's goals has been to make it back to Valley Medical for Physical Therapy and to finally try an FES bike. Like the true athlete my daughter is, she successfully passed her FES Bike trial and we have ordered her one of her own. Unfortunately, the wait for delivery is 4 - 6 weeks but knowing she's going to be able to exercise at home on a regular basis is a huge boost to her morale. The bike as I've mentioned before has many health benefits not the least of which is blood circulation and the ability to build and maintain muscle.
So most days are better. Nights are still more sleepless than restful -- but better. The nature of Allie's injury doesn't lend itself to long periods of sleep. Not with the constant suctioning and repositioning. Allie has given up wearing both the tubi grips and teds on her legs that had been used to help prevent the blood dropping to her feet and thus contributing to the possibility of her passing out when getting up for the day. Another sign that her body is adjusting well to its current condition.
Every day we count our many blessings, but still this life we are living is a hard one. Every member of my family feels deeply the difficult challenges in our everyday life. We still mourn for the way things use to be. The freedoms, the lightheartedness, the sort of safe and simple state of mind we enjoyed never having even imagined such an extreme change was in our future. But, mostly our hearts continue to just plain ache. For no matter how much things have changed for us personally, we know that Allie deals with a million times more.
And deal with it she does. The other night Allie confided in me that things aren't all bad anymore. Hearing your daughter tell you that things in her life aren't all bad isn't exactly a mother's dream come true. In Allie's case though, I think it's a huge step. Last week she posted on her Facebook for the second time a picture of herself post accident. She also included pics from the hospital when she was in her halo and xrays of her neck. She does and always has possessed a remarkable strength.
On Saturday Allie went for her first tattoo. Accompanied by her possee, "team Allie" consisting of Jordan, Ashley, Samantha, Anjel, John and me. She now has the word "Believe" on her right foot. I think that about says it all!
A couple special thank you's first to Sandra and the rest of the Jensen family for the thoughtful letter, prayers and gift card, and to Laurey Shumaker for the card, prayer and CD. Sista Monica has been a favorite of Ron and mine for a long time. How cool that you got to sing with her! The CD is awesome and it is very special to be able to share this music with Allie who does enjoy a wide variety. Thank you to Jessica R. for always remembering Allie with your notes and cards. And thank you to the best family and friends anyone could ever wish for.
Thanks for listening. Thanks for caring.
Love, Peace & Happiness,
Deborah
The past month things have continued to move in the right direction for Allie. Ron and I watched with excitement, and I'd be fibbing if I didn't admit to a bit of fear, mixed with an incredible amount of pride in our daughter and her friends, as she went off with without either of us, for the first time in almost two years. The week prior we had a "trial run" when Ron, Anjel, Uncle Doug and I took Allie to meet a group of her friends at a restaurant. Allie went off with Jordan to meet the group and have dinner at one end of the place while we enjoyed our dinner on the other side. We didn't see her again until we'd finished dinner and went outside to find her safely loaded up in her van and ready to go. "My friends want to show you that they can safely take me places without you" she tells me, with a grin on her face. So, when later that night Allie shared with me her plans to go out with Jordan the following weekend, I responded with the non-commital "we'll see". My daughter responded with something about it being time and if she couldn't have even this small resembalance of her former life then what, she asked, was the point? "I love you mom but I'm ready to ditch ya."
So began the conversations with myself for the next few days. Allie's 21 and is a smart young woman, I told myself. She's a survior and does a good job of looking after those that are responsible for looking after her. She is extremely in tune with her body and is all to aware of the signs that warn her that something is going wrong. Jordan is a competent, sharp and loving friend. She's seen Al at the worst of times and is familiar with her care. Allie deserves whatever quality of life she can find for herself. So when Jordan, Josh and Melissa showed up that weekend ready to go, I told myself it was time for me to let go. Jordan and I went over a few things and they were off. Because, I trust Jordan as much as I do I wasn't quite as crazy with worry as I thought I might be. I did have directions to her house and will admit to having some errands to run near there for a couple of hours :) We kept in touch via texts and it was clear from the smart alec messages I was getting, that Allie was having a teriffic time. Allie felt so loved and lucky to have a friend like Jordan who was willing to step up and take on such responsibility. They delivered her home safe and sound with a giant smile on her face. Thank you guys you are the absolute best!
Another one of Allie's goals has been to make it back to Valley Medical for Physical Therapy and to finally try an FES bike. Like the true athlete my daughter is, she successfully passed her FES Bike trial and we have ordered her one of her own. Unfortunately, the wait for delivery is 4 - 6 weeks but knowing she's going to be able to exercise at home on a regular basis is a huge boost to her morale. The bike as I've mentioned before has many health benefits not the least of which is blood circulation and the ability to build and maintain muscle.
So most days are better. Nights are still more sleepless than restful -- but better. The nature of Allie's injury doesn't lend itself to long periods of sleep. Not with the constant suctioning and repositioning. Allie has given up wearing both the tubi grips and teds on her legs that had been used to help prevent the blood dropping to her feet and thus contributing to the possibility of her passing out when getting up for the day. Another sign that her body is adjusting well to its current condition.
Every day we count our many blessings, but still this life we are living is a hard one. Every member of my family feels deeply the difficult challenges in our everyday life. We still mourn for the way things use to be. The freedoms, the lightheartedness, the sort of safe and simple state of mind we enjoyed never having even imagined such an extreme change was in our future. But, mostly our hearts continue to just plain ache. For no matter how much things have changed for us personally, we know that Allie deals with a million times more.
And deal with it she does. The other night Allie confided in me that things aren't all bad anymore. Hearing your daughter tell you that things in her life aren't all bad isn't exactly a mother's dream come true. In Allie's case though, I think it's a huge step. Last week she posted on her Facebook for the second time a picture of herself post accident. She also included pics from the hospital when she was in her halo and xrays of her neck. She does and always has possessed a remarkable strength.
On Saturday Allie went for her first tattoo. Accompanied by her possee, "team Allie" consisting of Jordan, Ashley, Samantha, Anjel, John and me. She now has the word "Believe" on her right foot. I think that about says it all!
A couple special thank you's first to Sandra and the rest of the Jensen family for the thoughtful letter, prayers and gift card, and to Laurey Shumaker for the card, prayer and CD. Sista Monica has been a favorite of Ron and mine for a long time. How cool that you got to sing with her! The CD is awesome and it is very special to be able to share this music with Allie who does enjoy a wide variety. Thank you to Jessica R. for always remembering Allie with your notes and cards. And thank you to the best family and friends anyone could ever wish for.
Thanks for listening. Thanks for caring.
Love, Peace & Happiness,
Deborah
Friday, January 7, 2011
Wow
Dear Family & Friends,
Wow, I know quite a bit of time has passed since my last post. Quite a bit has happened as well.
I guess the biggest news is that Allie now has a caregiver (other than mom). Marsha is an RN with hospital as well as homecare experience. She is smart, compassionate and Allie was comfortable with her right from the start. She's here every week day for a full eight hours. Marsha's a great addition to what my daughter, Anjel refers to as "team Allie". No more stressing over who is going to help me get Al up. No more stressing about who is going to hold her head when we go to appts. or on outings. But, even more importantly Allie has someone, other than her mother, to assist her in her daily routine. For Allie I think this is a huge step toward independence, and while this is somewhat of a major adustment for both of us, the help is so welcome. We feel very lucky that we found someone like Marsha. Her value was immediate when she helped us solve an extremely worrisome issue. You may recall in my last post, I shared my fear and frustration over our inability to get trachs for Al. Marsha knew of a website and with a prescription from Allie's doc we were able to purchase them ourselves!
Allie turned 21 last month and a small group of us celebrated with margaritas at El Palomar. When we returned home a few of Allie's friends came over with cake and presents and we celebrated some more! Allie also had a group of about 12 or 13 of her closest friends over for the "real party" on Saturday night. The couple of days prior she became pretty anxious. She shared with me some of her fears, excitement, and conflicting emotions in anticipation of the event. Determined though to show people how much she wants and can still be part of the parties, etc. she was committed. She continues to be the most courageous person I know.
The party appeared to be a success. Champagne toasts and beer pong (desiginated drivers in attendance of course) followed by a couple of rounds of Apples to Apples, where apparently my daughter kicked butt! Thank you to Whitney and Anjel for helping Al get ready. Thank you again to Anjel (I know it was tough staying up so late with the young ones :))for hanging out, so that Al and her friends didn't have to have us parental figures hovering the whole time.
Backtracking a bit in time..I hope you all had a wonderful Thanksgiving. Ours was good. Much better than last year. Allie was much more comfortable with the festivities and full house. When it was time to share what we were most grateful for, Allie went first. I don't think there was a dry eye at that table.
Christmas was a quiet lazy day for us. Our favorite kind. We did the secret santa thing again this year and drew names so each of us shopped for just one person in the family. Allie drew me, so the three of us went to the mall and with Marsha's help Allie was able to shop for the gift without my knowing what I was getting. This may not seem like a big deal to most but to Allie and me, it was.
The following week we hosted our extended-family's annual Christmas party. Unfortunately, it didn't go quite as well for Al as Thanksgiving did. Allie had only been up a couple of hours when she started to experience pain in her abdomen. It became increasingly worse and she finally asked to go to her room. For at least an hour things got worse and her symptoms made it difficult for us to figure out what was wrong. Uncle Doug, Auntie Pam, Ron and I stayed with her and although no word was spoken, I know we all feared the possiblity that the situation might escalate to an emergency. Fortunately, once she felt more stable we got her into bed and after another hour or so she was feeling better. She had been so looking forward to participating in the gift exchange/white elephant game that my family does every year. I felt very sad for her and to be honest for myself. I also was looking forward to her participation this year...things had been going so well. We ended up taking part remotely from her room and Allie focused on that. She was happy. We all were. Allie was home and we were all together.
Allie has yet to have her PT appointments which appears to be the direct result of human error. You would think that life is difficult enough for her without the constant frustration of dealing with the healthcare system. It is at times overwhelming. Vent circuits that take weeks to arrive only to be incorrect when they do. Suction catheters that are weeks late because someone is waiting for information they should already have.
She did recently get to trial a power chair which was very exciting. There was much concern surrounding which type of "drive system" would best work for her. Although, there are several to choose from, her limited head control narrows it down significantly. Because, she has no real voice having a sip and puff instrument (a likely choice for those with her level of disability) in her mouth all the time promised to make it even more difficult for her to communicate. The drive her OT thought might be best was the chin drive. In the gym at Valley Med we transfered her into the chair. The first concern was whether the chair would drive forward in the reclined position necessary for Al to hold her head up. It did. Allie asked a couple of questions about how it worked and off she went! To everyone's amazement she drove the chair all over the hospital unit while her vent still attached to her own chair was pushed behind her. Anyone watching would have thought she'd done this many times before. She was an instant pro. And if it sounds like I'm bragging......I am! I did my best not to be too obvious about the tears I felt welling up. Was this how I felt when my kids learned to ride a bike for the first time? No. That was a fantastic feeling. This was so much more.
So, begins the process of ordering the chair. Much involved. More to do with the healthcare system. I'll spare you all the details. Hopefully, she'll have the chair before Spring. In the meantime, expansion of the flagstone walkways in our yard which will create a much larger accessible area for her is underway. Thank you Dennis we are so glad you were available to do this project for us.
Allie has been getting out and about much more. The unavoidable drs. appts., of course, but also dinners, shopping, and movies. She tells me that while she isn't really feeling any more comfortable with the stares, etc., she is getting somewhat use to it. On occasion when we are out, someone that is familiar with her story will come up and introduce themselves and say hi. She is always genuinely touched by these meetings. We attended Stacey's annual xmas party again this year and Allie was much more comfortable and had an even better time this year than last. Thank you Stacey for including us once again.
Having friends home from school for the holidays was a special treat. Allie loved getting caught up with everyone in spite of the inevitable mixed emotions that come with hearing of her friends busy lives. She can't help but draw parallels thinking about where she would be and what she would be doing if it weren't for the events of that rainy day. Hearing about school activities, upcoming graduations, boyfriends and career plans....yet, I have never heard a word of resentment from her. Her sincere happiness at her friends accomplishments astounds me and makes me prouder than ever to be her mother.
A couple of weeks ago with me and dad along, she attended a concert at Don Q's in Felton. Her childhood friend, Kellen and his band (The Coffis Brothers and the Mountain Men) was performing and while she had been invited before, this was the first time that she really felt up to such an outing. She was able to hang out on the side of the stage away from the main hustle and bustle, but where her friends could keep her company and a constant stream of well wishers could come by and say hi. The music was great and it was incredibly fun to be out and to see so many people enjoying themselves. Thank you again to Kellen, Vicky and Jim for all your support. Allie confided in me, that this was by far the best night she'd had since her accident!
The overwhelming sad days are a bit fewer and further apart. Night anxiety attacks rare. Allie spends more time on her computer and is getting pretty darn fast at it. In fact, I keep telling her that it's about time she start writing these posts herself. Wendy gave her an amazing set of long paint brushes as a gift and so we went out and got some more paint and canvases. We are hoping to see more paintings from her soon.
So we wait. We wait for the cure that I know is coming. In the meantime we are grateful that the journey has been a bit less bumpy lately. The smiles more frequent.
Thank you for the love and support you continue to show my daughter and our family. A special thank you to Beth for your generosity to my family this xmas and to the Weisinstein's for the awesome gift cert. We all enjoyed the take out from Mama Mia's when just our immediate family got together to celebrate Al's b-day. Thank you to Bob L. for showering Allie with such remarkable b-days gifts. You certainly made her feel extra-special. And a personal thank you from me to my friend Nan for the generous gift to me. And as always...a huge thank you to my family for always being here for Allie, Adam, Ron and me.
We pray that 2011 brings you all nothing short of the most incredible joy.
Love, Peace & Happiness,
Deborah
Wow, I know quite a bit of time has passed since my last post. Quite a bit has happened as well.
I guess the biggest news is that Allie now has a caregiver (other than mom). Marsha is an RN with hospital as well as homecare experience. She is smart, compassionate and Allie was comfortable with her right from the start. She's here every week day for a full eight hours. Marsha's a great addition to what my daughter, Anjel refers to as "team Allie". No more stressing over who is going to help me get Al up. No more stressing about who is going to hold her head when we go to appts. or on outings. But, even more importantly Allie has someone, other than her mother, to assist her in her daily routine. For Allie I think this is a huge step toward independence, and while this is somewhat of a major adustment for both of us, the help is so welcome. We feel very lucky that we found someone like Marsha. Her value was immediate when she helped us solve an extremely worrisome issue. You may recall in my last post, I shared my fear and frustration over our inability to get trachs for Al. Marsha knew of a website and with a prescription from Allie's doc we were able to purchase them ourselves!
Allie turned 21 last month and a small group of us celebrated with margaritas at El Palomar. When we returned home a few of Allie's friends came over with cake and presents and we celebrated some more! Allie also had a group of about 12 or 13 of her closest friends over for the "real party" on Saturday night. The couple of days prior she became pretty anxious. She shared with me some of her fears, excitement, and conflicting emotions in anticipation of the event. Determined though to show people how much she wants and can still be part of the parties, etc. she was committed. She continues to be the most courageous person I know.
The party appeared to be a success. Champagne toasts and beer pong (desiginated drivers in attendance of course) followed by a couple of rounds of Apples to Apples, where apparently my daughter kicked butt! Thank you to Whitney and Anjel for helping Al get ready. Thank you again to Anjel (I know it was tough staying up so late with the young ones :))for hanging out, so that Al and her friends didn't have to have us parental figures hovering the whole time.
Backtracking a bit in time..I hope you all had a wonderful Thanksgiving. Ours was good. Much better than last year. Allie was much more comfortable with the festivities and full house. When it was time to share what we were most grateful for, Allie went first. I don't think there was a dry eye at that table.
Christmas was a quiet lazy day for us. Our favorite kind. We did the secret santa thing again this year and drew names so each of us shopped for just one person in the family. Allie drew me, so the three of us went to the mall and with Marsha's help Allie was able to shop for the gift without my knowing what I was getting. This may not seem like a big deal to most but to Allie and me, it was.
The following week we hosted our extended-family's annual Christmas party. Unfortunately, it didn't go quite as well for Al as Thanksgiving did. Allie had only been up a couple of hours when she started to experience pain in her abdomen. It became increasingly worse and she finally asked to go to her room. For at least an hour things got worse and her symptoms made it difficult for us to figure out what was wrong. Uncle Doug, Auntie Pam, Ron and I stayed with her and although no word was spoken, I know we all feared the possiblity that the situation might escalate to an emergency. Fortunately, once she felt more stable we got her into bed and after another hour or so she was feeling better. She had been so looking forward to participating in the gift exchange/white elephant game that my family does every year. I felt very sad for her and to be honest for myself. I also was looking forward to her participation this year...things had been going so well. We ended up taking part remotely from her room and Allie focused on that. She was happy. We all were. Allie was home and we were all together.
Allie has yet to have her PT appointments which appears to be the direct result of human error. You would think that life is difficult enough for her without the constant frustration of dealing with the healthcare system. It is at times overwhelming. Vent circuits that take weeks to arrive only to be incorrect when they do. Suction catheters that are weeks late because someone is waiting for information they should already have.
She did recently get to trial a power chair which was very exciting. There was much concern surrounding which type of "drive system" would best work for her. Although, there are several to choose from, her limited head control narrows it down significantly. Because, she has no real voice having a sip and puff instrument (a likely choice for those with her level of disability) in her mouth all the time promised to make it even more difficult for her to communicate. The drive her OT thought might be best was the chin drive. In the gym at Valley Med we transfered her into the chair. The first concern was whether the chair would drive forward in the reclined position necessary for Al to hold her head up. It did. Allie asked a couple of questions about how it worked and off she went! To everyone's amazement she drove the chair all over the hospital unit while her vent still attached to her own chair was pushed behind her. Anyone watching would have thought she'd done this many times before. She was an instant pro. And if it sounds like I'm bragging......I am! I did my best not to be too obvious about the tears I felt welling up. Was this how I felt when my kids learned to ride a bike for the first time? No. That was a fantastic feeling. This was so much more.
So, begins the process of ordering the chair. Much involved. More to do with the healthcare system. I'll spare you all the details. Hopefully, she'll have the chair before Spring. In the meantime, expansion of the flagstone walkways in our yard which will create a much larger accessible area for her is underway. Thank you Dennis we are so glad you were available to do this project for us.
Allie has been getting out and about much more. The unavoidable drs. appts., of course, but also dinners, shopping, and movies. She tells me that while she isn't really feeling any more comfortable with the stares, etc., she is getting somewhat use to it. On occasion when we are out, someone that is familiar with her story will come up and introduce themselves and say hi. She is always genuinely touched by these meetings. We attended Stacey's annual xmas party again this year and Allie was much more comfortable and had an even better time this year than last. Thank you Stacey for including us once again.
Having friends home from school for the holidays was a special treat. Allie loved getting caught up with everyone in spite of the inevitable mixed emotions that come with hearing of her friends busy lives. She can't help but draw parallels thinking about where she would be and what she would be doing if it weren't for the events of that rainy day. Hearing about school activities, upcoming graduations, boyfriends and career plans....yet, I have never heard a word of resentment from her. Her sincere happiness at her friends accomplishments astounds me and makes me prouder than ever to be her mother.
A couple of weeks ago with me and dad along, she attended a concert at Don Q's in Felton. Her childhood friend, Kellen and his band (The Coffis Brothers and the Mountain Men) was performing and while she had been invited before, this was the first time that she really felt up to such an outing. She was able to hang out on the side of the stage away from the main hustle and bustle, but where her friends could keep her company and a constant stream of well wishers could come by and say hi. The music was great and it was incredibly fun to be out and to see so many people enjoying themselves. Thank you again to Kellen, Vicky and Jim for all your support. Allie confided in me, that this was by far the best night she'd had since her accident!
The overwhelming sad days are a bit fewer and further apart. Night anxiety attacks rare. Allie spends more time on her computer and is getting pretty darn fast at it. In fact, I keep telling her that it's about time she start writing these posts herself. Wendy gave her an amazing set of long paint brushes as a gift and so we went out and got some more paint and canvases. We are hoping to see more paintings from her soon.
So we wait. We wait for the cure that I know is coming. In the meantime we are grateful that the journey has been a bit less bumpy lately. The smiles more frequent.
Thank you for the love and support you continue to show my daughter and our family. A special thank you to Beth for your generosity to my family this xmas and to the Weisinstein's for the awesome gift cert. We all enjoyed the take out from Mama Mia's when just our immediate family got together to celebrate Al's b-day. Thank you to Bob L. for showering Allie with such remarkable b-days gifts. You certainly made her feel extra-special. And a personal thank you from me to my friend Nan for the generous gift to me. And as always...a huge thank you to my family for always being here for Allie, Adam, Ron and me.
We pray that 2011 brings you all nothing short of the most incredible joy.
Love, Peace & Happiness,
Deborah
Thursday, September 9, 2010
Things you never want to hear
Dear Family & Friends,
Your daughter is a very sick girl....she has broken at least one vertebra in her neck, probably more...she has been unconscious since arriving....it does not look good....one of your daughter's vertebral arteries has been damaged beyond repair and unless we can stop the bleeding as soon as possible, your daughter will not make it....your daughter is paralyzed from the chin down....your daughter is unable to breathe on her own and is dependent on a ventilator....
The first few days after Allie's accident was truly the worst nightmare. To be honest, I have never even imagined anything as horrible happening to someone I love so much. And although we have had major ups and downs since then, I now have another string of just a few words that will forever be burned into that place in my heart and mind that come back to haunt me on a regular basis.
In my last post, I touched on some breathing issues that Allie was having. Unlike the trachea problems she's had in the past this new problem resembled asthma attacks.
We did our best to remove whatever might be triggering the episodes. We had an enhaler. We changed lotion, soap, laundry detergent, removed all feathers, flowers, down and anything we thought might harbor dust from her room. I began researching room filters.
The episodes would come and go. Some days she would be fine and some she'd have an "attack" two or three times in a day. One night the wheezing began and we could do nothing to eleviate it. It wasn't going away. Her chest pain was terrible and we couldn't properly vent her. It became increasingly more difficult for her to breathe in, and exhale. We called for an ambulance. While dad, Auntie Vicky and I took turns staying with Al and getting ready for yet another trip to the hospital, she passed out. When she "came to" shortly before the ambulance arrived she was pretty unaware of her surroundings and certainly not herself but her color was good and although she was confused, I could tell she was okay. Adam, Samantha and Ashley had all heard about the 911 call and had arrived at the house to see Allie briefly and tell her they loved her, as we wheeled her into the ambulance. During the ride to the hospital she told me she was going to pass out. While I assured her she was fine and to please just relax I saw her face freeze and drain of all color. I heard the medic riding with us say "beginning CPR" as she responded immediately. Actually, it could have been "starting CPR" I'm really not sure. All I know is I had to push away the feeling of doom. I was so scared. One of our friends from Felton fire had come along with us and she also got busy. I continued to give Allie breaths from the ambu bag while the medic did for her what Allie's body couldn't. This time Allie's heart had completely stopped. They tell me it was four minutes. By the time we arrived at Dominican ER Allie's heart had begun beating on its own but Allie was out of it.
So began an agonizing 5 or 6 hours in the ER. Upon my insistence a Pulmonologist was called in to see her and if not for him, I don't think Al would have made it. Then to ICU while we waited for a bed to open at Kaiser Santa Clara. It was probably about 24 hours or so before we knew that other than a very badly bitten tongue and once again no memory from about five hours or so before the episode began, thanks to the CPR Allie received, Allie was still our Allie. So after another stay in the hospital where she received massive doses of steroids and antibiotics, the wheezing seemed to be gone.
The valley lost one of its long time and popular residents this year, Al Rudy, Samantha's grandpa. We had only been out of the hospital for a day and a half when Allie found out that morning that his memorial service was to take place in a couple of hours. She was determined to go be there for her friend and her family...."it's important mom". That morning I happened to have a stiff neck, and absolutely no energy and saw no way we could do all we had to do to be up and out of the house in time. Kath came by to do Allie's range of motion and called in Talley to help. Between the two of them...Talley massaged the biggest knots out of my neck so that I could hold my head upright and Kath started to get Al ready. While I got myself ready, Talley did Allie's hair and makeup. Thanks ladies. You made the impossible, possible! And thanks to Adam for going along with us to help out. The outing exhausted Allie, but she was so glad she had gone and I was incredibly proud of her. The way she can rally strength for friends or to do the right thing, never ceases to amaze me.
Thank you also to Deb Mattson (my long-time friend *look for her office on HWY 9 in Felton if you are interested in an awesome massage*) for making a housecall, the following day (on a Sunday no less) to continue working on the knots in my neck. Also, thank you to my brother Douglas for adjusting my neck and back. You'd think I'd be use to those ICU "bed chairs" by now, but that visit really took a toll on me!
To make yet another long story short our time at home didn't last. Allie's wheezing began again. Dad, Auntie Sandi and I took her in to see her Pulmonologist and he admitted her back into ICU that afternoon. He had been on vacation during her last stay and his approach to her treatment was different. Another five days and we were home once again. The new meds seem to be working.
Thankfully the last couple of weeks have been pretty uneventful. Mostly, Allie still spends her afternoons sitting outside on her deck enjoying the beautiful weather as much as she can until the sun moves away and she gets chilly. We have to wait all over again for all the approvals to go through for her therapy and since the first week of her online cabrillo class was spent in the hospital, she decided to drop it for now. The boredom sometimes I think is unbearable for her, but still much better than the "excitement" of the emergent health issues she seems to be unable to move away from.
We get out of the house as much as Allie is willing, but she continues to be sad and uncomfortable when we venture out. Most people are great, but some people cannot seem to help but stare. We did attend a Candle Lite Party hosted by our friends Denise and Bianca. It was a great time spent with friends and family and also a fundraiser for Allie. Thanks Denise for such a generous and thoughtful gift and thank you to all of you that attended.
I guess that's about all for now. I continue to be thankful for our beautiful comfortable home in "paradise". We know we have the best family and friends anyone could ever have. Regular visits from my brother and sisters mean so much to all of us and keep us going. Kerry, Kathy, Wendy, Susan & Tricia (among others) are always here for us helping with the practical, the fun times, as well as moral support. Thank you to Matt and Auntie Pam for their recent and very generous donations to Allie's trust. A giant thank you to my sisters (especially Auntie Vicky) for all the meals while we were in the hospital so that Ron and I could enjoy an occasional dinner break together, outside the room in the hospital courtyard. Thank you to all of you that continue to bring us those awesome meals (in spite of my insistence that you've already done more than enough).
A special thank you to my brother-in-law, Douglas for the new dishwasher!! I could have done without, but am so happy not to have to.
Please continue to pray for Allie's physical as well as emotional strength and recovery. It seems increasingly clear that it is critical for her to be able to experience some significant improvement in her condition soon, in order for her to have any peace of mind.
Hopefully, next post I will have some good news to share!!!!!!!!!
Love, Peace & Happiness,
Deborah
Your daughter is a very sick girl....she has broken at least one vertebra in her neck, probably more...she has been unconscious since arriving....it does not look good....one of your daughter's vertebral arteries has been damaged beyond repair and unless we can stop the bleeding as soon as possible, your daughter will not make it....your daughter is paralyzed from the chin down....your daughter is unable to breathe on her own and is dependent on a ventilator....
The first few days after Allie's accident was truly the worst nightmare. To be honest, I have never even imagined anything as horrible happening to someone I love so much. And although we have had major ups and downs since then, I now have another string of just a few words that will forever be burned into that place in my heart and mind that come back to haunt me on a regular basis.
In my last post, I touched on some breathing issues that Allie was having. Unlike the trachea problems she's had in the past this new problem resembled asthma attacks.
We did our best to remove whatever might be triggering the episodes. We had an enhaler. We changed lotion, soap, laundry detergent, removed all feathers, flowers, down and anything we thought might harbor dust from her room. I began researching room filters.
The episodes would come and go. Some days she would be fine and some she'd have an "attack" two or three times in a day. One night the wheezing began and we could do nothing to eleviate it. It wasn't going away. Her chest pain was terrible and we couldn't properly vent her. It became increasingly more difficult for her to breathe in, and exhale. We called for an ambulance. While dad, Auntie Vicky and I took turns staying with Al and getting ready for yet another trip to the hospital, she passed out. When she "came to" shortly before the ambulance arrived she was pretty unaware of her surroundings and certainly not herself but her color was good and although she was confused, I could tell she was okay. Adam, Samantha and Ashley had all heard about the 911 call and had arrived at the house to see Allie briefly and tell her they loved her, as we wheeled her into the ambulance. During the ride to the hospital she told me she was going to pass out. While I assured her she was fine and to please just relax I saw her face freeze and drain of all color. I heard the medic riding with us say "beginning CPR" as she responded immediately. Actually, it could have been "starting CPR" I'm really not sure. All I know is I had to push away the feeling of doom. I was so scared. One of our friends from Felton fire had come along with us and she also got busy. I continued to give Allie breaths from the ambu bag while the medic did for her what Allie's body couldn't. This time Allie's heart had completely stopped. They tell me it was four minutes. By the time we arrived at Dominican ER Allie's heart had begun beating on its own but Allie was out of it.
So began an agonizing 5 or 6 hours in the ER. Upon my insistence a Pulmonologist was called in to see her and if not for him, I don't think Al would have made it. Then to ICU while we waited for a bed to open at Kaiser Santa Clara. It was probably about 24 hours or so before we knew that other than a very badly bitten tongue and once again no memory from about five hours or so before the episode began, thanks to the CPR Allie received, Allie was still our Allie. So after another stay in the hospital where she received massive doses of steroids and antibiotics, the wheezing seemed to be gone.
The valley lost one of its long time and popular residents this year, Al Rudy, Samantha's grandpa. We had only been out of the hospital for a day and a half when Allie found out that morning that his memorial service was to take place in a couple of hours. She was determined to go be there for her friend and her family...."it's important mom". That morning I happened to have a stiff neck, and absolutely no energy and saw no way we could do all we had to do to be up and out of the house in time. Kath came by to do Allie's range of motion and called in Talley to help. Between the two of them...Talley massaged the biggest knots out of my neck so that I could hold my head upright and Kath started to get Al ready. While I got myself ready, Talley did Allie's hair and makeup. Thanks ladies. You made the impossible, possible! And thanks to Adam for going along with us to help out. The outing exhausted Allie, but she was so glad she had gone and I was incredibly proud of her. The way she can rally strength for friends or to do the right thing, never ceases to amaze me.
Thank you also to Deb Mattson (my long-time friend *look for her office on HWY 9 in Felton if you are interested in an awesome massage*) for making a housecall, the following day (on a Sunday no less) to continue working on the knots in my neck. Also, thank you to my brother Douglas for adjusting my neck and back. You'd think I'd be use to those ICU "bed chairs" by now, but that visit really took a toll on me!
To make yet another long story short our time at home didn't last. Allie's wheezing began again. Dad, Auntie Sandi and I took her in to see her Pulmonologist and he admitted her back into ICU that afternoon. He had been on vacation during her last stay and his approach to her treatment was different. Another five days and we were home once again. The new meds seem to be working.
Thankfully the last couple of weeks have been pretty uneventful. Mostly, Allie still spends her afternoons sitting outside on her deck enjoying the beautiful weather as much as she can until the sun moves away and she gets chilly. We have to wait all over again for all the approvals to go through for her therapy and since the first week of her online cabrillo class was spent in the hospital, she decided to drop it for now. The boredom sometimes I think is unbearable for her, but still much better than the "excitement" of the emergent health issues she seems to be unable to move away from.
We get out of the house as much as Allie is willing, but she continues to be sad and uncomfortable when we venture out. Most people are great, but some people cannot seem to help but stare. We did attend a Candle Lite Party hosted by our friends Denise and Bianca. It was a great time spent with friends and family and also a fundraiser for Allie. Thanks Denise for such a generous and thoughtful gift and thank you to all of you that attended.
I guess that's about all for now. I continue to be thankful for our beautiful comfortable home in "paradise". We know we have the best family and friends anyone could ever have. Regular visits from my brother and sisters mean so much to all of us and keep us going. Kerry, Kathy, Wendy, Susan & Tricia (among others) are always here for us helping with the practical, the fun times, as well as moral support. Thank you to Matt and Auntie Pam for their recent and very generous donations to Allie's trust. A giant thank you to my sisters (especially Auntie Vicky) for all the meals while we were in the hospital so that Ron and I could enjoy an occasional dinner break together, outside the room in the hospital courtyard. Thank you to all of you that continue to bring us those awesome meals (in spite of my insistence that you've already done more than enough).
A special thank you to my brother-in-law, Douglas for the new dishwasher!! I could have done without, but am so happy not to have to.
Please continue to pray for Allie's physical as well as emotional strength and recovery. It seems increasingly clear that it is critical for her to be able to experience some significant improvement in her condition soon, in order for her to have any peace of mind.
Hopefully, next post I will have some good news to share!!!!!!!!!
Love, Peace & Happiness,
Deborah
Sunday, August 8, 2010
Transistions & Set-Backs
Hi Everyone,
When I write these posts I make an effort to pick a title that I feel is relevant to what is happening with Allie or where she is in her "progress" at the time of the post. A couple of weeks ago I realized it had been a while since I'd written and it was time to sit down and let you all know about the latest happenings. The title I thought would best fit the time was "Transisitions". Somehow I was distracted that day and never got past the title. Since then more has happened and I've had to once again acknowledge a temporary set-back. Hopefully, I will get the time today to bring you all up to date. Thanks for your patience.
My daughter's strengths are many and her sensitivity, confidence, competitive nature and intelligence had served her well before her accident. The one thing I felt she always struggled with though, since birth, was making transistions. While some thrive on change and the spontaneous, Allie seemed to strongly resent moving from one place or action to another, unless she was the one making or in some way controlling the move. So how does a personality that resented being put in and out of a car seat, having her hand held in the mall or going from the 2nd to the 3rd grade before she decided to, deal with a sudden and complete loss of control? In the last month or so I was beginning to see a change come over Allie. She was preparing for a transistion. She was beginning to think about and talk about letting go of what she had perceived to be her place or role in this world and her plans for the way in which she expected to participate in it. She was taking the first steps towards coming to terms with her current situation. I'm not trying to fool myself into thinking that she was happy about this and that it was going to come without tears, confusion, anger and resentment, but Allie is more than just a survivor. Allie has always tried to be the best at whatever it was she was doing and she was, I think, realizing that it was time to figure out what that was now going to be. She sees what her friends are up to. She hears about their jobs, boyfriends, colleges, parties and trips. All of these things she still can and will have if she so chooses, but the path for her has changed drastically. She still has so much to offer but how and where?
We've been pretty busy around here lately. Thanks to the hard work of my husband, brothers' inlaw, nephews and son, my horse is home! The family camp really feels complete now and Allie and I have Cash's antics to entertain us along with the dogs. Allie, Adam, Taylor and I attended a 4th of July bash at the Sander's. Allie had a chance to talk with several friends she hadn't seen in a while. Thanks to the Sanders for including us and thank you to Mike and the rest of the guys that helped me get Al and her chair safely through a couple minor obstacles to the festivities. She had a great time. Ron, Allie and I met up with Connor and his family for an early dinner down at the wharf a few weeks ago. We all had an awesome time. Allie always feels especially comfortable with Connor and his family since the action of suctioning, etc. is something they are so familiar with. We made it over to Wendy and Tanner's for a fun dinner date. Allie said it was really nice to just go and hang out with good friends somewhere different for a change. Michelle, Samantha and Dylan came over one weekend to barbeque for Allie and Wendy brought home made ice cream sandwiches to complete the menu. We had a visit from Auntie Sandi that was overdue since she had back surgery a while ago and has been unable to travel. Al had really missed her. Uncle Doug, Auntie Vicky and Auntie Pam's regular visits are always so comforting to Allie and give Ron and I a break (and Allie a break from us). On one of Uncle Doug's last visits Ron and I enjoyed a dinner out with our good friends, Rosalie and Doyal. Kerry continues to be a frequent visitor and always manages to make Allie (and me too) feel better. She helped for the first time with a transfer yesterday and did great. She says she's ready to try suctioning next! Kathi off from teaching for summer vacation is back to coming mornings to do Allie's range of motion and her company is always helpful and a great comfort in so many ways. We love seeing Annie, Julie and the kids and are very excited that soon they will be moving within walking distance! Susan's morning visits are always a welcome treat for me and Tricia and I actually made it into the park the other day for a ride through the redwoods on our "ponies". The best therapy for me and Al did fine hanging out with Dad and Adam.
Allie has her first PT appointment scheduled next week at Valley and as I've mentioned before, can't wait to try out the FES bike. I'm hoping they'll come up with some good ideas to help her strengthen her neck and in the meantime help her get more comfortable in her headrest, which is a constant source of frustration. The biggest news I guess is that Al and I spent our first night in over 16 months, apart from each other. It has been a tradition for over 20 years for me to go spend a weekend away with three of my favorite women friends. Last year was obviously not an option but I decided to give it a go for at least one night this year. My friends cheerfully agreed to change things a bit and we rented a cabin within a few minutes of home just in case. Auntie Vicky during her visits had become quite competent with all Al's care and so came to stay the days and night with she and Ron. I am very happy to say that overall things went great in my absence. I had a wonderful time relaxing with my friends, dining out, walking in the park and doing some local wine tasting! Allie genuinely enjoyed hanging out with Auntie Vicky and having a break from her ever-present mom! When I called to check in Kerry had dropped by and the three of them were laughing and having a fine time. All in all in spite of the daily ups and downs we felt pretty good with the direction things were moving in.
Just when things seemed to be falling into a if not entirely comfortable pattern, at least a less stressed one, the other night Allie began having trouble breathing. This did not mimick anything we had seen before. Her circuits (the tubes that deliver breathes from the vent to her trach) started making a loud wheezing sound. Allie began experiencing chest pains and she felt extremely short of breath. There was no indication of high pressure on her vent as I'd seen in the past. The first night it happened we got through it somehow but when the same thing happened the following night Allie passed out completely. She was out much too long while Ron, Adam and I desperately worked to bring her back. Get her on her back, head down, legs up, breaths from the ambu bag. A drill we know well by now, but still the fear and heart-clenching chill that this might be the time we can't do enough and the reality of how close we are to losing her, makes it a challenge to remain calm and focused. Slowly her color came back. By the time she was fully aware, she once again "woke" to her room full of concerned emergency personnel. Thanks again to our friends at the Felton Fire Dept! We opted not to go to the hospital that night as the worst seemed to have passed. I called her pulomonologist the next day and he agreed that he should see her asap. She went for chest xrays. We were all relieved that there was no indication of fluid or clots in her lungs. As an extra precaution one of her ENT docs came and scoped her to find a healthy looking trachea. We had packed for a hospital stay just in case and were thrilled to be going home later that same day. She was given a prescription for nose drops and an inhaler. Unfortunately, she has had several "episodes" since. Kathi was here to witness one and said that it sure resembles an asthma attack to her something Allie has no history of. While the inhaler does not give Al immediate relief it does seem to be helping. We hope whatever is going on will be shortlived and Allie can get back to the business of what I'm calling her "transistioning".
While Allie begins plans for a new path to travel there is amazing progress being made in the science of stem cell research and active trials. Either way, I hold onto the belief that her future like most 20 year olds is full of amazing promise and that any path she chooses will be remarkable.
This morning Allison came by for a surprise visit with her bright and bubbly personality and as I write this is helping Al eat the breakfast she prepared for her. She'll help me get her up and hang out for a while. There is no subsitute for good friends. Seeing my daughter's beautiful beaming smile when she heard the familiar voice coming through the door, is a gift I can treasure all day today. The love of our friends and family always the best medicine of all.
Thank you to all the incredibly special people we have been blessed enough to be surrounded with. Please remember how much you mean to us. Please continue your prayers that Allie breathe on her own soon and that she continue to heal. Your words of encouragement on this blog mean a lot to Allie and the rest of us. We do look forward to hearing from you.
We cannot fail with all of you behind us.
Love, Peace & Happiness,
Deborah
ps: thank you to Farrah for the picture and stuffed animal you made for Allie and to Luke for the cool horse picture you gave her (Auntie Deborah Loves her's too!).
When I write these posts I make an effort to pick a title that I feel is relevant to what is happening with Allie or where she is in her "progress" at the time of the post. A couple of weeks ago I realized it had been a while since I'd written and it was time to sit down and let you all know about the latest happenings. The title I thought would best fit the time was "Transisitions". Somehow I was distracted that day and never got past the title. Since then more has happened and I've had to once again acknowledge a temporary set-back. Hopefully, I will get the time today to bring you all up to date. Thanks for your patience.
My daughter's strengths are many and her sensitivity, confidence, competitive nature and intelligence had served her well before her accident. The one thing I felt she always struggled with though, since birth, was making transistions. While some thrive on change and the spontaneous, Allie seemed to strongly resent moving from one place or action to another, unless she was the one making or in some way controlling the move. So how does a personality that resented being put in and out of a car seat, having her hand held in the mall or going from the 2nd to the 3rd grade before she decided to, deal with a sudden and complete loss of control? In the last month or so I was beginning to see a change come over Allie. She was preparing for a transistion. She was beginning to think about and talk about letting go of what she had perceived to be her place or role in this world and her plans for the way in which she expected to participate in it. She was taking the first steps towards coming to terms with her current situation. I'm not trying to fool myself into thinking that she was happy about this and that it was going to come without tears, confusion, anger and resentment, but Allie is more than just a survivor. Allie has always tried to be the best at whatever it was she was doing and she was, I think, realizing that it was time to figure out what that was now going to be. She sees what her friends are up to. She hears about their jobs, boyfriends, colleges, parties and trips. All of these things she still can and will have if she so chooses, but the path for her has changed drastically. She still has so much to offer but how and where?
We've been pretty busy around here lately. Thanks to the hard work of my husband, brothers' inlaw, nephews and son, my horse is home! The family camp really feels complete now and Allie and I have Cash's antics to entertain us along with the dogs. Allie, Adam, Taylor and I attended a 4th of July bash at the Sander's. Allie had a chance to talk with several friends she hadn't seen in a while. Thanks to the Sanders for including us and thank you to Mike and the rest of the guys that helped me get Al and her chair safely through a couple minor obstacles to the festivities. She had a great time. Ron, Allie and I met up with Connor and his family for an early dinner down at the wharf a few weeks ago. We all had an awesome time. Allie always feels especially comfortable with Connor and his family since the action of suctioning, etc. is something they are so familiar with. We made it over to Wendy and Tanner's for a fun dinner date. Allie said it was really nice to just go and hang out with good friends somewhere different for a change. Michelle, Samantha and Dylan came over one weekend to barbeque for Allie and Wendy brought home made ice cream sandwiches to complete the menu. We had a visit from Auntie Sandi that was overdue since she had back surgery a while ago and has been unable to travel. Al had really missed her. Uncle Doug, Auntie Vicky and Auntie Pam's regular visits are always so comforting to Allie and give Ron and I a break (and Allie a break from us). On one of Uncle Doug's last visits Ron and I enjoyed a dinner out with our good friends, Rosalie and Doyal. Kerry continues to be a frequent visitor and always manages to make Allie (and me too) feel better. She helped for the first time with a transfer yesterday and did great. She says she's ready to try suctioning next! Kathi off from teaching for summer vacation is back to coming mornings to do Allie's range of motion and her company is always helpful and a great comfort in so many ways. We love seeing Annie, Julie and the kids and are very excited that soon they will be moving within walking distance! Susan's morning visits are always a welcome treat for me and Tricia and I actually made it into the park the other day for a ride through the redwoods on our "ponies". The best therapy for me and Al did fine hanging out with Dad and Adam.
Allie has her first PT appointment scheduled next week at Valley and as I've mentioned before, can't wait to try out the FES bike. I'm hoping they'll come up with some good ideas to help her strengthen her neck and in the meantime help her get more comfortable in her headrest, which is a constant source of frustration. The biggest news I guess is that Al and I spent our first night in over 16 months, apart from each other. It has been a tradition for over 20 years for me to go spend a weekend away with three of my favorite women friends. Last year was obviously not an option but I decided to give it a go for at least one night this year. My friends cheerfully agreed to change things a bit and we rented a cabin within a few minutes of home just in case. Auntie Vicky during her visits had become quite competent with all Al's care and so came to stay the days and night with she and Ron. I am very happy to say that overall things went great in my absence. I had a wonderful time relaxing with my friends, dining out, walking in the park and doing some local wine tasting! Allie genuinely enjoyed hanging out with Auntie Vicky and having a break from her ever-present mom! When I called to check in Kerry had dropped by and the three of them were laughing and having a fine time. All in all in spite of the daily ups and downs we felt pretty good with the direction things were moving in.
Just when things seemed to be falling into a if not entirely comfortable pattern, at least a less stressed one, the other night Allie began having trouble breathing. This did not mimick anything we had seen before. Her circuits (the tubes that deliver breathes from the vent to her trach) started making a loud wheezing sound. Allie began experiencing chest pains and she felt extremely short of breath. There was no indication of high pressure on her vent as I'd seen in the past. The first night it happened we got through it somehow but when the same thing happened the following night Allie passed out completely. She was out much too long while Ron, Adam and I desperately worked to bring her back. Get her on her back, head down, legs up, breaths from the ambu bag. A drill we know well by now, but still the fear and heart-clenching chill that this might be the time we can't do enough and the reality of how close we are to losing her, makes it a challenge to remain calm and focused. Slowly her color came back. By the time she was fully aware, she once again "woke" to her room full of concerned emergency personnel. Thanks again to our friends at the Felton Fire Dept! We opted not to go to the hospital that night as the worst seemed to have passed. I called her pulomonologist the next day and he agreed that he should see her asap. She went for chest xrays. We were all relieved that there was no indication of fluid or clots in her lungs. As an extra precaution one of her ENT docs came and scoped her to find a healthy looking trachea. We had packed for a hospital stay just in case and were thrilled to be going home later that same day. She was given a prescription for nose drops and an inhaler. Unfortunately, she has had several "episodes" since. Kathi was here to witness one and said that it sure resembles an asthma attack to her something Allie has no history of. While the inhaler does not give Al immediate relief it does seem to be helping. We hope whatever is going on will be shortlived and Allie can get back to the business of what I'm calling her "transistioning".
While Allie begins plans for a new path to travel there is amazing progress being made in the science of stem cell research and active trials. Either way, I hold onto the belief that her future like most 20 year olds is full of amazing promise and that any path she chooses will be remarkable.
This morning Allison came by for a surprise visit with her bright and bubbly personality and as I write this is helping Al eat the breakfast she prepared for her. She'll help me get her up and hang out for a while. There is no subsitute for good friends. Seeing my daughter's beautiful beaming smile when she heard the familiar voice coming through the door, is a gift I can treasure all day today. The love of our friends and family always the best medicine of all.
Thank you to all the incredibly special people we have been blessed enough to be surrounded with. Please remember how much you mean to us. Please continue your prayers that Allie breathe on her own soon and that she continue to heal. Your words of encouragement on this blog mean a lot to Allie and the rest of us. We do look forward to hearing from you.
We cannot fail with all of you behind us.
Love, Peace & Happiness,
Deborah
ps: thank you to Farrah for the picture and stuffed animal you made for Allie and to Luke for the cool horse picture you gave her (Auntie Deborah Loves her's too!).
Sunday, June 20, 2010
TMPRARY
Dear Family & Friends,
"Tmprary" that's what you'll read on the license plate of Allie's van. It may be considered an unnecessary expense to pay for a personalized plate, but somehow in this case, it seemed important for her to express not only her feelings about her current mode of transportation, but her current physical state. We've never considered Allie's condition to be permanent and still don't. I can tell you though as time goes on, I can see how easily it would be to go crazily discouraged when you hope and pray so hard and see such little, if any, improvement. A few weeks ago things seemed to me to be getting so tough around here, it almost seemed hopeless. The sadness and frustration was rising to a feverish pitch. Allie's pain had been especially bad for a few days straight. If she wasn't in terrible pain physically, she was increasingly bored and depressed as well. Adam was stressed registering and getting classes scheduled for college while taking finals and finishing up all he needed to do to graduate from high school. Ron was hobbling along best he could trying to do things around here and dealing with the disappointment of losing a couple of jobs because the people couldn't wait any longer for him to be over his injuries. So...I was feeling pretty close to my breaking point. Sometimes it doesn't take much to make you smile for days like the first time I saw a bird bathing in the beautiful ceramic bird bath my sister, Pam gave me for my birthday. But sometimes it doesn't take much to forget about the good stuff and get stuck focusing on the negative. How do people survive this? How can we live like this? This is too scary, too sad and too hard! Questions I have asked myself over and over. Something has got to get better. As often happens in life, (but unfortunately not always) just when you think you can't take it anymore something gets better. For us, this came in the form of a small but significant step toward independence for Allie. Her computer arrived fixed and like new. A couple days later the hardware and software we ordered arrived (thank you once again to Auntie Vicky & Marquerite for helping to make these things possible and to Uncle Doug for taking care of the external hard-drive).
Allie's first attempt to work her laptop ended with frustration and tears pretty quickly. Just the basic seemingly simple gesture of moving a cursor had become for her, a huge physical challenge. The system Allie has works with a camera mounted on the top of the screen. The camera tracks a "small paper dot" that sticks either to your forehead or glasses. It moves the cursor as you move. You use a sip and puff stick for right and left clicks. Because of Allie's limited head movement we've found the best place for the dot is on her chin. This is especially difficult. If you can, try and imagine keeping your chin still when you've finally got your cursor where you want it, but at the same time using your mouth to operate the sip and puff to click. I am happy to report though that the next couple of times she made remarkable progress (no big surprise knowing our girl). She's already been talking with friends, started a playlist for a new CD and even downloaded a ringtone for me. When she told me that the best part of working on the computer was the ability to finally do something by herself, I had to turn my head to hide my tears. Once again she makes me so proud and yet at the same time so ashamed. How dare I complain about my frustration with our situation when she continues to show such progress. Watching her tackle this latest challenge reminds me that while we may be missing out on some things that we once took for granted, that in ways never imagined, our new life gives us an opportunity to appreciate the "little" things that most let pass them by.
Adam is the fourth of our children to graduate from SLV High. Thank you Whitney for coming over in the morning to do Al's hair and help her get ready for the big event. It started at noon under a very hot June sun. Thank you, thank you, to the MacCallister's for sharing with us space under their easy-up. Without the shade I don't think Allie or Ron would have made it through. Thanks to Dennis for helping me get Al up the slope and across the lawn. Thanks to my son Alonzo for helping me get her back down the slope! They had a more accessible way to get to the festivities that did not include a slope, but we had parked as close to the tent as possible and so dealt with the slope instead of pushing her across more lawn than we had to, as it is a very bumpy ride for her. The ceremony was very nice and we all went out to the wharf afterwards to celebrate Adam's accomplishment.
Uncle Doug and I brought Allie for a trach change earlier this month. It went well and although there was a small amount of granulation present her docs were very pleased with the way her trachea looked. Al hates trach changes and it is a very stressful time for her. She did a great job though. She likes and trusts her ENT doctors and it gets a tiny bit easier each time.
Friday, Allie went back to Valley Medical for the first time. The minute we drove into the parking lot her stomach began to ache. Four extremely difficult months of her young life were spent here. Her whole life changed here. It was here that she was told she wouldn't walk or breathe on her own. She quickly pulled it together though and was really happy to see many of the wonderful people that had worked with her during her stay. Because Kaiser's rehab center is in Vallejo and really isn't as fully equipped for Al's needs, after many phone calls, discussions and emails, etc. she has approval to go to Valley for Occupational and Physical rehab. We aren't sure yet how many sessions she will get, but we will fight the good fight to get her the best and most we can. The occupational therapist talked with her about which power chair will be most appropriate for her, and will help her to get a much-needed shower chair as well. The consult with the physical therapist is on Monday. Our hopes are that they will work with her on developing some neck strength and Allie is really hoping to get a chance on the exercise equipment in the gym. More progress!
I want to send a special thank you to Tanner, Marguerite, Susan, and Samantha for helping with transfers. Thank you to my sister, Pam my brother-in-law, Rod and my nephews, Nick and Travis for all their work on the corral. Thank you to Ashley for helping Al pick out her new shades. Unlike you, I'm pretty sure I would have lost my patience after the 30th pair:)!
Thank you to all our friends and family that continue to be there for us in so many ways. Your meals, flowers, visits, prayers, love and support are incredible. Thank you to those of you that include us in your prayers even though we've never met. You are the best.
Love, Peace & Happiness,
Deborah
"Tmprary" that's what you'll read on the license plate of Allie's van. It may be considered an unnecessary expense to pay for a personalized plate, but somehow in this case, it seemed important for her to express not only her feelings about her current mode of transportation, but her current physical state. We've never considered Allie's condition to be permanent and still don't. I can tell you though as time goes on, I can see how easily it would be to go crazily discouraged when you hope and pray so hard and see such little, if any, improvement. A few weeks ago things seemed to me to be getting so tough around here, it almost seemed hopeless. The sadness and frustration was rising to a feverish pitch. Allie's pain had been especially bad for a few days straight. If she wasn't in terrible pain physically, she was increasingly bored and depressed as well. Adam was stressed registering and getting classes scheduled for college while taking finals and finishing up all he needed to do to graduate from high school. Ron was hobbling along best he could trying to do things around here and dealing with the disappointment of losing a couple of jobs because the people couldn't wait any longer for him to be over his injuries. So...I was feeling pretty close to my breaking point. Sometimes it doesn't take much to make you smile for days like the first time I saw a bird bathing in the beautiful ceramic bird bath my sister, Pam gave me for my birthday. But sometimes it doesn't take much to forget about the good stuff and get stuck focusing on the negative. How do people survive this? How can we live like this? This is too scary, too sad and too hard! Questions I have asked myself over and over. Something has got to get better. As often happens in life, (but unfortunately not always) just when you think you can't take it anymore something gets better. For us, this came in the form of a small but significant step toward independence for Allie. Her computer arrived fixed and like new. A couple days later the hardware and software we ordered arrived (thank you once again to Auntie Vicky & Marquerite for helping to make these things possible and to Uncle Doug for taking care of the external hard-drive).
Allie's first attempt to work her laptop ended with frustration and tears pretty quickly. Just the basic seemingly simple gesture of moving a cursor had become for her, a huge physical challenge. The system Allie has works with a camera mounted on the top of the screen. The camera tracks a "small paper dot" that sticks either to your forehead or glasses. It moves the cursor as you move. You use a sip and puff stick for right and left clicks. Because of Allie's limited head movement we've found the best place for the dot is on her chin. This is especially difficult. If you can, try and imagine keeping your chin still when you've finally got your cursor where you want it, but at the same time using your mouth to operate the sip and puff to click. I am happy to report though that the next couple of times she made remarkable progress (no big surprise knowing our girl). She's already been talking with friends, started a playlist for a new CD and even downloaded a ringtone for me. When she told me that the best part of working on the computer was the ability to finally do something by herself, I had to turn my head to hide my tears. Once again she makes me so proud and yet at the same time so ashamed. How dare I complain about my frustration with our situation when she continues to show such progress. Watching her tackle this latest challenge reminds me that while we may be missing out on some things that we once took for granted, that in ways never imagined, our new life gives us an opportunity to appreciate the "little" things that most let pass them by.
Adam is the fourth of our children to graduate from SLV High. Thank you Whitney for coming over in the morning to do Al's hair and help her get ready for the big event. It started at noon under a very hot June sun. Thank you, thank you, to the MacCallister's for sharing with us space under their easy-up. Without the shade I don't think Allie or Ron would have made it through. Thanks to Dennis for helping me get Al up the slope and across the lawn. Thanks to my son Alonzo for helping me get her back down the slope! They had a more accessible way to get to the festivities that did not include a slope, but we had parked as close to the tent as possible and so dealt with the slope instead of pushing her across more lawn than we had to, as it is a very bumpy ride for her. The ceremony was very nice and we all went out to the wharf afterwards to celebrate Adam's accomplishment.
Uncle Doug and I brought Allie for a trach change earlier this month. It went well and although there was a small amount of granulation present her docs were very pleased with the way her trachea looked. Al hates trach changes and it is a very stressful time for her. She did a great job though. She likes and trusts her ENT doctors and it gets a tiny bit easier each time.
Friday, Allie went back to Valley Medical for the first time. The minute we drove into the parking lot her stomach began to ache. Four extremely difficult months of her young life were spent here. Her whole life changed here. It was here that she was told she wouldn't walk or breathe on her own. She quickly pulled it together though and was really happy to see many of the wonderful people that had worked with her during her stay. Because Kaiser's rehab center is in Vallejo and really isn't as fully equipped for Al's needs, after many phone calls, discussions and emails, etc. she has approval to go to Valley for Occupational and Physical rehab. We aren't sure yet how many sessions she will get, but we will fight the good fight to get her the best and most we can. The occupational therapist talked with her about which power chair will be most appropriate for her, and will help her to get a much-needed shower chair as well. The consult with the physical therapist is on Monday. Our hopes are that they will work with her on developing some neck strength and Allie is really hoping to get a chance on the exercise equipment in the gym. More progress!
I want to send a special thank you to Tanner, Marguerite, Susan, and Samantha for helping with transfers. Thank you to my sister, Pam my brother-in-law, Rod and my nephews, Nick and Travis for all their work on the corral. Thank you to Ashley for helping Al pick out her new shades. Unlike you, I'm pretty sure I would have lost my patience after the 30th pair:)!
Thank you to all our friends and family that continue to be there for us in so many ways. Your meals, flowers, visits, prayers, love and support are incredible. Thank you to those of you that include us in your prayers even though we've never met. You are the best.
Love, Peace & Happiness,
Deborah
Subscribe to:
Posts (Atom)
