Dear Family & Friends,
I apologize for the long gap between postings. People have been asking for an update, and please believe us when we say how much we appreciate the loyalty of interest in Allie's progress.
Well at long last Allie's power chair arrived! Before she received full instruction on its operation, she was driving around the house as we followed behind. Wow. Very exciting stuff. As a mom, I can't describe what it feels like after two long years, to see her moving around without help from one of us. She can go out onto the deck or porch without our help, to her computer table or the dining table when she wants to. She can now look in the direction of her interest in stores or the yard without having to ask someone to do it for her. She can tilt back on her own for comfort or a weight shift. In addition to the newly found independence this chair is such a better fit for her and her shoulders no longer rest on bars! It's a pretty amazing thing to see her work this chair. With a "clicker" near her cheek she can change modes and a joystick near her chin she can drive. It's no surprise that she quickly became impatient with my attempts to work the attendant controls to get her in the van and in the right position to hook her chair to the tie downs. She can now do what took me ten minutes in about 3! In my defense....I am not of the joystick generation:)
Allie continues to be physically healthy and has gone out a couple more times on her own, with the help of Jordan and Aurezu. She also went on a lunch date with Christopher with Adam along to help. Like any typical young adult any time out spent with friends is the best time. We've attended a couple college graduation parties and another concert. She is much more relaxed than before at these events and really enjoys herself. Most of her time is still spent at home, but her friends often join us for the occasional shopping, movie, dining out or a trip to get a manicure. They visit when they can and she cherishes the visits. Confident that Allie's condition is so much more stable, I've begun to get out more. More time spent with my husband or out with friends. Thanks to Auntie Vicky, Marsha, Anjel and of course Ron covering for me, I was able to go horse camping with Tricia and company and enjoyed some awesome riding and relaxation. I also spent a weekend with some very special friends for our annual get together. We stayed only minutes away as we did last year, but this year I stayed for both nights. Baby steps maybe, but great progress for both Allie and me. She likes it best when I am home with her. She worries less and is more comfortable. I worry less too. We both know though that it is important to trust others. And we are so very fortunate to have such a wonderful support team. As difficult as it may be sometimes, we both need a breather from one another once in a while.
So many improvements. Life has begun to take on a more positive rythmm of sorts. Can't say the rythmm is quite upbeat maybe not worth dancing too yet. Weekly (sometimes daily) I fight the never-ending fight with the insurance companies, and the vendors, etc. to see that my daughter gets the medical attention and supplies she needs. Currently, the battle is with the company that supplies her vents and some other respiratory equipment. We've been trying to get a suction machine and two portable batteries replaced now for two weeks! Both these items are life sustaining. If her one working suction machine was to suddenly stop working it would mean an immediate trip in an ambulance to an ER. It seems there is no end to these battles.
We are doing all we can to maintain her current healthy state and we continue to see her strength grow slowly. She has a wonderful team of doctors that keep close tabs on her. At home we keep her joints flexible, see she makes it to appts., takes her meds. These things we can easily do for her. We can't give her the thing she wants more than anything though....to breathe on her own, the use of her hands, to walk, to run, to talk above a whisper, to hug. Allie has had too many days lately where she's questioned whether she wants to continue living like this. For Ron and I, hearing this from our child is excruiating. Allie and I fight (like most mothers and daughters do at one time or another). The subject matter however, is not like most mothers and daughters. I feel powerless. I don't do powerless well, so can only imagine how Allie not so unlike me in many ways, copes with her level of disability. She's a fighter, she's tough and stubborn, but still I worry when she gets this down. So I argue, lose my patience, encourage and console. Still, I feel powerless to change how she feels. I cannot give her what she wants right now. We can still...pray, hope, envision her walking and laughing. Send our positive energy to those working on the cure. Stay up to speed on their progress. We know you're getting close. Please hurry.
So we will wait. Her time will come. In the meantime all of us here will do our best to enjoy our spot in paradise, the sunny weather, each other, the love and support of our family and friends. While not quite ready to go back to the rigors of school, Allie is looking into some other ways she can pass some time. She wants so to be "useful" in some way again. She wants to find a way to contribute. I've no doubt she will.
A giant thank you to Uncle Doug P. for the incredible amount of time and attention to detail he spent searching for the right motorhome that could be converted for Allie. Only to then spend an enormous amount more getting all the necessary modifications done for her. It's an incredible vehicle. Without this mode of transportation vacations for her would be virtually impossible. Our family has done a couple successful trial runs. The first with full hook-ups and the second without. There is much to think about and plan for, when one of your family members is dependent on a ventilator and restricted to a wheelchair. The trips were not without their challenges. In the end all went okay and a good time was had. Allie and I even have plans for a girls trip this coming weekend (wish us luck). Ashley, Jordan, Samantha and my friend Rosalie are joining us. Thank you Rosalie for agreeing to be our driver! The RV is a 34 foot Hurricane and the bedroom is fully equipped with a special bed for Al and an overhead lift. The "living room" has a bump-out so there's plenty of room for her to move around inside. It's a really tall lift to get her in the RV but the ramp that was installed is strong and safe. Extra outlets were installed in her room and a closet was removed to allow for an easier transfer from her chair. She's still a bit reluctant because going places sometimes only reminds her of what she can't do instead of what she can. In time we hope as her confidence grows, this will allow her to enjoy many adventures. Thank you again Uncle Doug -- we would have never been able to pull this off without all your help!!! And thank you to Pat and Hank for your assistance as well.
Best wishes to Uncle Doug H. He had surgery today for a leg broken while wake boarding. We love you. Speedy recovery to you. We will miss your Tuesday visits. You are the best. Thank you to Marsha for being such an awesome addition to our Team Allie. Thank you to my sisters for being the most amazing women, supportive sisters, aunts, and sister-in laws. My family is so very thankful for all you do for us. Thank you to all our friends for always being there for us. We love you all.
Thank you for listening. Stay safe.
Love, Peace & Happiness,
Deborah
Allie
Monday, August 1, 2011
Friday, April 22, 2011
Powerchair/Cal. Alliance update since last post
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:)
As always, thank you all for your support and love. You truly do make the difference:)
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, November 11, 2010
Go Giants & hello time change
Dear Family & Friends,
I had hoped that scarey incidents, breathing issues and hospital stays would be absent in my next post, and I am relieved and so thrilled to say that they are!!! Things around here have been going pretty good (relatively speaking of course). Allie is mostly healthy and has put back on the weight she lost during her last two hospital stays. She gets a sterioid enhaler twice a day which is successfully keeping the wheezing away. Her pain seems to be less frequent and she is even thinking about another decrease in the dose of her nerve pain med.
The last month or so has been pretty quiet. Allie and I did have friends over for a little party one evening which was fun and as always a mixed bag for Al. It is difficult for her in a large group to keep feeling involved with her limited mode of communication. Having been an especially vocal and active person she is having to learn a completely different way to stay part of the conversation and activities. Her friends being the sensitive and special people they are seem aware of her feelings and it is fascinating to see how at all times she has the attention of at least one of them!
We celebrated twice last month as Anjel turned 30 and Adam 19. Ron was able to go on a 5-day lobster diving trip compliments of his good friend Mike and he brought us home lobster to enjoy for Anjel's b-day dinner. It was quite the feast.
Last month we also had a visit from Ian and his parents from Seattle. You may remember my talking of Ian in past posts. He came to meet Allie while she was still in Valley Hosp. His mom and I keep in touch via email and she is always a great source of information and emotional support. Ian also has a high injury and breathes on a ventilator. When we first met him he was practicing off the ventilator for a few minutes at a time and is now breathing completely on his own whenever he is awake. The doctors cannot explain why or how but he is living proof that it's possible. It was wonderful to see Ian doing so well and to hear his stories. He is a sensitive guy and great inspiration to Allie and they share a special connection.
Allie is much more of a sports fan than I am, (she especially loves pro-basketball) in fact, as I write this, she's watching her favorite team, the Celtics play. But, this baseball season the whole family (even me) caught Giants fever and really enjoyed cheering them onto victory. Uncle Doug is a huge sports fan and made sure that both Adam and Allie were "rockin" championship tee-shirts for good luck. The games were a welcome and enjoyable distraction for us all.
Halloween like most holidays put Al in a bit of a funk. I think missing out on a night where young adults get to explore their alter egos and express whatever facade they choose made her pretty sad not to mention the inevitable party with friends. Luckily, cousin Eric came and spent a couple days and they watched movies and talked to pass the time.
During Eric's visit Allie discovered another way to pass the time. With Eric's help she opened up a paypal account and made her first purchase on EBay. She loved the shopping and bidding and was very pleased with her accomplishment as well as the great deal she got on a purple Ipod she gave to Samantha as a b-day present. She was bursting with happiness in anticipation of giving such a nice gift to her good friend. As soon as the gift was opened Sam and I set up Allie's computer so that Al could download some music for her. She's getting pretty fast in spite of the challenging set-up and it is kind of mind boggling to watch her on her laptop.
The time change has kind of put us all out of whack (as I suspect it does with most people). It was pretty comical on Saturday night as I attempted to set my phone with the schedule of alarms for the nightly routine. For some reason, I was having the most difficult time adjusting for the hour back in the middle. Sometimes, I do think my mind is turning to mush! On the other hand Allie is as sharp as ever and is enjoying her winning strategy at Monopoly and Scrabble. It was her idea to play the board games and it is really nice to see her enjoy herself and feel capable. At this time of year she has a lot less sun on her deck which is a huge bummer. A future goal of ours is to make our property much more accessible to her, as there is usually some sunny spot somewhere if only we could get her in her chair to it.
I saw on Jerry's blog the video of him on his FES Bike. Go Jerry! The bike is so cool and they attribute much of his improved movement to the use of it. We are working on getting all the approvals through so that Allie can have an opportunity to try one out soon. Hopefully, OT and PT should start no later than early December.
To read of Jerry's journey see: followingjerry.com
Our anticipated life's journey took a major re-direction the day my daughter suffered such a life-altering injury. I know there are people who live their lives angry, vindictive, greedy, and jealous. I also know that they are drastically outnumbered by those that live with an open heart, are compassionate, caring, generous, loving, forgiving, and full of faith in themselves, each other, their God or the universe. For the last 19 months my daughter and these remarkable people some of them family some friends and some strangers have been my teachers. I guess that's the "silver lining" I cling to. My daughter's losses and burdens haven't lessened yet, but our believe that things will get better, remains strong. We are having more good days, most are still pretty tough and a few nearly unbearable, yet a day does not pass that I am not moved by a gesture, a comment, a letter, or a gift in some form. A friend recently told me that Allie will never know what an impact she has had on her life. I wish my daughter was not the instrument for our internal discoveries and new appreciations for what we have, but it is what it is. Allie's bravery at facing each new day with its challenges, and discomforts still amaze me. Her concern and love for friends and family in spite of her situation makes me so proud. It is easy for me to see why so many love her.
On a less positive note we have had an ongoing "situation" since being at Valley with obtaining the trachs that Allie needs/uses. You may remember an attempt to change to another type before she was released from Valley Medical because of our lack of DME coverage with Kaiser (durable medical equipment)and lack of availability from her medical supply vendor for the type she had. The result of the change was that she nearly died. We were able to leave the hospital with enough of the correct trachs to get by until now, but are down to her last two. She will have a trach change at the end of the month which will leave her with only one. When I think of what a seemingly impossible task it continues to be to get her this small piece of life-sustaining silicone which isn't even that expensive, I feel my head might spin off. Thanks for listening.
A special thank you:
To my husband Ron thank you for all you do. You are an awesome and loving dad and husband and find yourself too often last behind Allie, Adam, the horse, the dogs, dishes, laundry, etc.
To Adam for his daily assistance and to Anjel for coming to the rescue whenever we need you.
To Connor for your prayers during Allie's most recent breathing troubles and very close call. The concern you both show for each other with all you've got going on personally is inspiring. We miss seeing you guys and have to get together soon.
To read of Connor's journey: www.connorwatch.org
To Rick @ Caldwell Carpet Care for not only your generosity and my nice clean sofa, but mostly for reminding me that although we may not always hear it, that there are still so many of you out there pulling for us and praying for Allie's strength and recovery.
To David W. for your moving letter and donation to Allie's trust. You and your family have suffered so much pain and loss and yet you take the time to write to us and pray for Allie's increased comfort, function and peace. You are clearly a remarkable man and source of inspiration.
Mike S. for your generous donation
Linda F. for your generous donation
My sister Pam and my niece Jessica for your generous donation
To my sisters Sandra, Victoria and Pamela, my brother Douglas, Kerry, and Kathi.
What an exceptional group of adults Allie is so fortunate to have as friends and life models.
To cousins Eric and Latasha for your uplifting visits
To those of you providing us with the yummy meals!
To those friends of Allie's that still include her and visit when they can
To all of you that give us encouragement through comments on this blog
To all of you that pray and hope for Allie's continued improved health and ultimate recovery
Thank you. Have a wonderful and safe Thanksgiving holiday.
Love, Peace & Happiness,
Deborah
I had hoped that scarey incidents, breathing issues and hospital stays would be absent in my next post, and I am relieved and so thrilled to say that they are!!! Things around here have been going pretty good (relatively speaking of course). Allie is mostly healthy and has put back on the weight she lost during her last two hospital stays. She gets a sterioid enhaler twice a day which is successfully keeping the wheezing away. Her pain seems to be less frequent and she is even thinking about another decrease in the dose of her nerve pain med.
The last month or so has been pretty quiet. Allie and I did have friends over for a little party one evening which was fun and as always a mixed bag for Al. It is difficult for her in a large group to keep feeling involved with her limited mode of communication. Having been an especially vocal and active person she is having to learn a completely different way to stay part of the conversation and activities. Her friends being the sensitive and special people they are seem aware of her feelings and it is fascinating to see how at all times she has the attention of at least one of them!
We celebrated twice last month as Anjel turned 30 and Adam 19. Ron was able to go on a 5-day lobster diving trip compliments of his good friend Mike and he brought us home lobster to enjoy for Anjel's b-day dinner. It was quite the feast.
Last month we also had a visit from Ian and his parents from Seattle. You may remember my talking of Ian in past posts. He came to meet Allie while she was still in Valley Hosp. His mom and I keep in touch via email and she is always a great source of information and emotional support. Ian also has a high injury and breathes on a ventilator. When we first met him he was practicing off the ventilator for a few minutes at a time and is now breathing completely on his own whenever he is awake. The doctors cannot explain why or how but he is living proof that it's possible. It was wonderful to see Ian doing so well and to hear his stories. He is a sensitive guy and great inspiration to Allie and they share a special connection.
Allie is much more of a sports fan than I am, (she especially loves pro-basketball) in fact, as I write this, she's watching her favorite team, the Celtics play. But, this baseball season the whole family (even me) caught Giants fever and really enjoyed cheering them onto victory. Uncle Doug is a huge sports fan and made sure that both Adam and Allie were "rockin" championship tee-shirts for good luck. The games were a welcome and enjoyable distraction for us all.
Halloween like most holidays put Al in a bit of a funk. I think missing out on a night where young adults get to explore their alter egos and express whatever facade they choose made her pretty sad not to mention the inevitable party with friends. Luckily, cousin Eric came and spent a couple days and they watched movies and talked to pass the time.
During Eric's visit Allie discovered another way to pass the time. With Eric's help she opened up a paypal account and made her first purchase on EBay. She loved the shopping and bidding and was very pleased with her accomplishment as well as the great deal she got on a purple Ipod she gave to Samantha as a b-day present. She was bursting with happiness in anticipation of giving such a nice gift to her good friend. As soon as the gift was opened Sam and I set up Allie's computer so that Al could download some music for her. She's getting pretty fast in spite of the challenging set-up and it is kind of mind boggling to watch her on her laptop.
The time change has kind of put us all out of whack (as I suspect it does with most people). It was pretty comical on Saturday night as I attempted to set my phone with the schedule of alarms for the nightly routine. For some reason, I was having the most difficult time adjusting for the hour back in the middle. Sometimes, I do think my mind is turning to mush! On the other hand Allie is as sharp as ever and is enjoying her winning strategy at Monopoly and Scrabble. It was her idea to play the board games and it is really nice to see her enjoy herself and feel capable. At this time of year she has a lot less sun on her deck which is a huge bummer. A future goal of ours is to make our property much more accessible to her, as there is usually some sunny spot somewhere if only we could get her in her chair to it.
I saw on Jerry's blog the video of him on his FES Bike. Go Jerry! The bike is so cool and they attribute much of his improved movement to the use of it. We are working on getting all the approvals through so that Allie can have an opportunity to try one out soon. Hopefully, OT and PT should start no later than early December.
To read of Jerry's journey see: followingjerry.com
Our anticipated life's journey took a major re-direction the day my daughter suffered such a life-altering injury. I know there are people who live their lives angry, vindictive, greedy, and jealous. I also know that they are drastically outnumbered by those that live with an open heart, are compassionate, caring, generous, loving, forgiving, and full of faith in themselves, each other, their God or the universe. For the last 19 months my daughter and these remarkable people some of them family some friends and some strangers have been my teachers. I guess that's the "silver lining" I cling to. My daughter's losses and burdens haven't lessened yet, but our believe that things will get better, remains strong. We are having more good days, most are still pretty tough and a few nearly unbearable, yet a day does not pass that I am not moved by a gesture, a comment, a letter, or a gift in some form. A friend recently told me that Allie will never know what an impact she has had on her life. I wish my daughter was not the instrument for our internal discoveries and new appreciations for what we have, but it is what it is. Allie's bravery at facing each new day with its challenges, and discomforts still amaze me. Her concern and love for friends and family in spite of her situation makes me so proud. It is easy for me to see why so many love her.
On a less positive note we have had an ongoing "situation" since being at Valley with obtaining the trachs that Allie needs/uses. You may remember an attempt to change to another type before she was released from Valley Medical because of our lack of DME coverage with Kaiser (durable medical equipment)and lack of availability from her medical supply vendor for the type she had. The result of the change was that she nearly died. We were able to leave the hospital with enough of the correct trachs to get by until now, but are down to her last two. She will have a trach change at the end of the month which will leave her with only one. When I think of what a seemingly impossible task it continues to be to get her this small piece of life-sustaining silicone which isn't even that expensive, I feel my head might spin off. Thanks for listening.
A special thank you:
To my husband Ron thank you for all you do. You are an awesome and loving dad and husband and find yourself too often last behind Allie, Adam, the horse, the dogs, dishes, laundry, etc.
To Adam for his daily assistance and to Anjel for coming to the rescue whenever we need you.
To Connor for your prayers during Allie's most recent breathing troubles and very close call. The concern you both show for each other with all you've got going on personally is inspiring. We miss seeing you guys and have to get together soon.
To read of Connor's journey: www.connorwatch.org
To Rick @ Caldwell Carpet Care for not only your generosity and my nice clean sofa, but mostly for reminding me that although we may not always hear it, that there are still so many of you out there pulling for us and praying for Allie's strength and recovery.
To David W. for your moving letter and donation to Allie's trust. You and your family have suffered so much pain and loss and yet you take the time to write to us and pray for Allie's increased comfort, function and peace. You are clearly a remarkable man and source of inspiration.
Mike S. for your generous donation
Linda F. for your generous donation
My sister Pam and my niece Jessica for your generous donation
To my sisters Sandra, Victoria and Pamela, my brother Douglas, Kerry, and Kathi.
What an exceptional group of adults Allie is so fortunate to have as friends and life models.
To cousins Eric and Latasha for your uplifting visits
To those of you providing us with the yummy meals!
To those friends of Allie's that still include her and visit when they can
To all of you that give us encouragement through comments on this blog
To all of you that pray and hope for Allie's continued improved health and ultimate recovery
Thank you. Have a wonderful and safe Thanksgiving holiday.
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 improvals 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 improvals 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
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