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 sisters-in law. 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
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