Dear Friends & Family,
An incredibly wonderful thing happened yesterday. Allie's halo vest was removed. She is wearing a neck brace since the muscles in her neck have weakened so much. We are fondly referring to her as our "bobble head". In time, the muscles will be able to once again support her head, but for the next three months she will wear the neck brace at all times. It was pretty scary for Al (and me) as they removed the screws from her head. But she handled it like a champ and in fact went out for a ride on the freeway today and then to Hobee's for lunch with Jordan, Brianna, her nurse Merlyn, Scott from Rec therapy, and me. She's a bit sore and learning to move her and get her comfortable is a new challenge and experience. Another piece of good news....our discharge date is Wednesday.
The not so great news is that Allie is on a course of medicine to resolve some granulation she has in her throat which is preventing her from voicing and can make a trach change dicey. That is our biggest concern right now. Other than that she is making great progress physically and emotionally. She's eating all three meals now and is taking most of her meds by mouth. We are going to start working on her Doc. to see if we can get him to agree to remove her stomach tube. That will be the next great milestone.
Her smile when friends visit is priceless and although her nights continue to be without sleep and her sadness is at times overwhelming, her coping skills and outlook is beyond my greatest hope. Her friends continue to amaze me with their compassion, dedication and overall love for her.
Recently Allie attended peer support group although she remains the most "disabled" in the unit. She attends skills group and plays poker, blockus and other games with the competitive edge we all know her best for.
We cannot wait to be back among our friends. We miss you all so much and are forever grateful for all the love, prayers, support, meals, help with pets, visits, donations, etc. I can't wait for Al to see her new room. I haven't seen it yet myself, but hear it is perfect. Bamboo floors and pretty green walls. We hope to have a van this weekend to bring her home in.
See you all soon.
Love, Peace & Happiness,
Deborah
Allie
Friday, July 31, 2009
Tuesday, July 21, 2009
Quick Update
Hi Everyone,
Thank you for your well wishes and support and concern over Allie's powerchair issues. The good news is that Bob Ludlow has come through for Al once again and has loaned her a chair, until we can obtain one for her. Thank you Bob!! You have been awesome beyond words and we love you.
The not so good news is that our discharge date has been delayed once again. Several issues have yet to be resolved. CCS has not committed officially to take Allie's case and help with expenses such as her vent (3K per month), wheelchair, as well as the many other items required. The bed that was provided is ancient and unacceptable as it is semi-electric and does not have the feature that allows her head to drop quickly. When Allie's BP drops it is critical that we lower her head or quickly raise her feet within seconds. Without this feature, it is not safe to have Allie come home to that bed. We have purchased a bed with a special mattress with some of Al's fundraiser money but that will not arrive for several weeks.
Anyway, we were both pretty bummed yesterday as we were counting the nights left sleeping in the hospital. We both miss our home, family, friends, pets and the redwoods so much! It is difficult for Allie to get her head ready for the big transisition and then find out it isn't happening yet. On the positive side though this gives her more time to work with her Doc that is back from vacation. She's eating three meals a day now and is weaning off some meds, which is incredibly wonderful.
Now that she is eating the next milestone is for her to talk. She will be working with the doctor's over the next couple of days to find out what's up with her trach. She has been unable to sleep for several nights. We are both getting pretty cranky as a result. Still, we continue to enjoy some fresh air on the patio every day and visits from friends are a huge treat.
We look forward to hearing from her surgeon soon (hopefully) for an idea as to when the halo comes off.
Thank you so much for your support. We really appreciate the response to Allie's need for a chair. I was so surprised to get offers just from the mention on her blog. It continues to amaze me how wonderful our community is.
Allie's strength of character and ability to get through each day is beyond my comprehension. She is truly my beautiful hero as are all of you for your love and support.
Love, Peace & Happiness,
Deborah
Thank you for your well wishes and support and concern over Allie's powerchair issues. The good news is that Bob Ludlow has come through for Al once again and has loaned her a chair, until we can obtain one for her. Thank you Bob!! You have been awesome beyond words and we love you.
The not so good news is that our discharge date has been delayed once again. Several issues have yet to be resolved. CCS has not committed officially to take Allie's case and help with expenses such as her vent (3K per month), wheelchair, as well as the many other items required. The bed that was provided is ancient and unacceptable as it is semi-electric and does not have the feature that allows her head to drop quickly. When Allie's BP drops it is critical that we lower her head or quickly raise her feet within seconds. Without this feature, it is not safe to have Allie come home to that bed. We have purchased a bed with a special mattress with some of Al's fundraiser money but that will not arrive for several weeks.
Anyway, we were both pretty bummed yesterday as we were counting the nights left sleeping in the hospital. We both miss our home, family, friends, pets and the redwoods so much! It is difficult for Allie to get her head ready for the big transisition and then find out it isn't happening yet. On the positive side though this gives her more time to work with her Doc that is back from vacation. She's eating three meals a day now and is weaning off some meds, which is incredibly wonderful.
Now that she is eating the next milestone is for her to talk. She will be working with the doctor's over the next couple of days to find out what's up with her trach. She has been unable to sleep for several nights. We are both getting pretty cranky as a result. Still, we continue to enjoy some fresh air on the patio every day and visits from friends are a huge treat.
We look forward to hearing from her surgeon soon (hopefully) for an idea as to when the halo comes off.
Thank you so much for your support. We really appreciate the response to Allie's need for a chair. I was so surprised to get offers just from the mention on her blog. It continues to amaze me how wonderful our community is.
Allie's strength of character and ability to get through each day is beyond my comprehension. She is truly my beautiful hero as are all of you for your love and support.
Love, Peace & Happiness,
Deborah
Sunday, July 12, 2009
Coming Home!!!!!!!!!!
Dear Friends & Family,
We have a discharge date of 7/22. Yea!!! Personally I can't wait to be home. Of course there is a bit of fear and concern for the unknown, but I feel ready. For Allie however, there is much fear and great sadness. Although she is happy to be going home at the same time she knows she will not be going back to the life she knew and loved. Naturally she is fearfull that if something happens, she will not have the hospital staff to help, since I am the only one that has had enough time to be trained. She worries that she's "ruined" all our lives. The other evening she apologized again for my losing my job. She worries about the money required as a result of her injury. She grieves for the person she was and will never be again. I try my best to assure her that the way she is now is temporary, and that although she will never be the same person she was, that her life can still be full and the person she will become will be more than she was. I know she wants to, but I don't think she believes me.
Medically Allie still struggles with the daily ups and downs of her blood pressure. My biggest worry right now is that her trach cuff has been deflated for the last four days and she has no air leak and no voice. Her regular doctor is on vacation. This could mean her throat has swollen around her trach or the trach is mis-positioned.
Things at the house are moving along. My family really came through this weekend and a lot of progress was made on Allie's room and bathroom. Not to mention that they cleaned, packed and switched the furniture upstairs and downstairs. We still have a ways to go on the construction but are getting there! Allie and I miss our evening visits with Ron but he has been too busy with the house to come much.
On the positive side.....the best news of all is that Allie is eating. Her appetite comes and goes but she is eating some real food every day. In fact, she has managed as much as 3 pieces of pizza (compliments of Kerry & Brianna) a large bowl of spaghetti (compliments of my sister Sandra) sandwiches, and cereal from her hospital meals and ice cream (compliments of Kathi & Iz).
She is doing better driving her chair via sip & puff although she really does not like it. She's worked a little on the computer using the "quad joy stick" although this seems to make her more sad than capable.
My daughter is currently a mixture of agony, impatience, frustration, determination and unbearable sadness. She tells me everyday that she cannot live like this that it is too much and not worth it. Then when something scary happens like passing out or the problems with her throat (she knows a bleed in her throat is untreatable and fatal) she tells me she does not want to die. Those are the words that give me hope.
Thank you all for the continued hope, support, and prayers. The visits are wonderful and the best part of Allie's day. Once again thank you for the fundraiser. The money raised has made the re-model possible.
The hospital has been unable to secure a power chair for Allie's home coming. She is bummed about having only a manual chair. If anyone knows of a chair available for a borrow, please let us know. For some stupid reason they will not let me rent one. Some BS about Medical, and insurance. She will eventually get a chair of her own, but not until the halo comes off and then it will be several months until it is ready. Also, we are still looking for a van. We want one with a lowered floor, raised roof and under the vehicle lift that can support 600 pounds.
We love you all. Thanks so much. Gotta go my daughter is calling.
Love, Peace & Happiness,
Deborah
We have a discharge date of 7/22. Yea!!! Personally I can't wait to be home. Of course there is a bit of fear and concern for the unknown, but I feel ready. For Allie however, there is much fear and great sadness. Although she is happy to be going home at the same time she knows she will not be going back to the life she knew and loved. Naturally she is fearfull that if something happens, she will not have the hospital staff to help, since I am the only one that has had enough time to be trained. She worries that she's "ruined" all our lives. The other evening she apologized again for my losing my job. She worries about the money required as a result of her injury. She grieves for the person she was and will never be again. I try my best to assure her that the way she is now is temporary, and that although she will never be the same person she was, that her life can still be full and the person she will become will be more than she was. I know she wants to, but I don't think she believes me.
Medically Allie still struggles with the daily ups and downs of her blood pressure. My biggest worry right now is that her trach cuff has been deflated for the last four days and she has no air leak and no voice. Her regular doctor is on vacation. This could mean her throat has swollen around her trach or the trach is mis-positioned.
Things at the house are moving along. My family really came through this weekend and a lot of progress was made on Allie's room and bathroom. Not to mention that they cleaned, packed and switched the furniture upstairs and downstairs. We still have a ways to go on the construction but are getting there! Allie and I miss our evening visits with Ron but he has been too busy with the house to come much.
On the positive side.....the best news of all is that Allie is eating. Her appetite comes and goes but she is eating some real food every day. In fact, she has managed as much as 3 pieces of pizza (compliments of Kerry & Brianna) a large bowl of spaghetti (compliments of my sister Sandra) sandwiches, and cereal from her hospital meals and ice cream (compliments of Kathi & Iz).
She is doing better driving her chair via sip & puff although she really does not like it. She's worked a little on the computer using the "quad joy stick" although this seems to make her more sad than capable.
My daughter is currently a mixture of agony, impatience, frustration, determination and unbearable sadness. She tells me everyday that she cannot live like this that it is too much and not worth it. Then when something scary happens like passing out or the problems with her throat (she knows a bleed in her throat is untreatable and fatal) she tells me she does not want to die. Those are the words that give me hope.
Thank you all for the continued hope, support, and prayers. The visits are wonderful and the best part of Allie's day. Once again thank you for the fundraiser. The money raised has made the re-model possible.
The hospital has been unable to secure a power chair for Allie's home coming. She is bummed about having only a manual chair. If anyone knows of a chair available for a borrow, please let us know. For some stupid reason they will not let me rent one. Some BS about Medical, and insurance. She will eventually get a chair of her own, but not until the halo comes off and then it will be several months until it is ready. Also, we are still looking for a van. We want one with a lowered floor, raised roof and under the vehicle lift that can support 600 pounds.
We love you all. Thanks so much. Gotta go my daughter is calling.
Love, Peace & Happiness,
Deborah
Sunday, June 28, 2009
Back Upstairs Again
Hi Everyone,
First an update on the good news...the construction at the house is progressing well. And by the way...........I have no idea how we would be making these changes if it weren't for the fundraiser! Ron with the help of family and friends has Allie's new room and bathroom downstairs framed in. They are waiting on me to get some tile samples to run by Allie for approval. I planned to go out Friday to Dal Tile (they have generously offered to donate everything she needs) but Allie had a visitor and I ended up staying for the visit and never made it to the shop.
Allie's visitor, Ian is one year post injury. He is ventilator dependent and came by to meet Allie. It was an emotional visit for all. Turns out we have actually met Ian as he was a friend of our daughter Anjel. He use to live in S.C. but moved to Washington after his accident and was out here for a wedding. Although he continues to struggle physically and emotionally with his injury on a daily basis, we were thrilled to see that he is able to breathe on his own for up to an hour at a time.
Last Saturday Allie and I were out on the patio reading. It was a beautiful day and Allie was getting a break from her pretty busy schedule. Allie's trach had been changed the day before (never make major changes in a hospital on a Friday) to a different kind (I'll spare the details of why). Allie did not like the feel of the trach tube and since the ventilator settings hadn't been adjusted the darn thing was constantly alarming which is a very loud and piercing sound. Also, disconcerting since the alarm is meant to let you know there is something wrong. However, everyone kept assuring us that things were fine.
Allie's Aunt Pam came by for a visit and then Dad showed up. The alarm kept going off so we decided we'd better get back inside. While Allie's nurse helped us to bring up any secretions that Allie might be having, all of a sudden Allie turned grey, and passed out. Once again I stared into my baby girl's unnaturally colored face with her eyes fixed open, frozen, in a blank stare. While we bagged her she was quickly moved to her bed and her head was lowered. Code Blue was called. Something was different about the episode this time. I didn't think it was a mucous plug blocking her airways. The room filled with people. This time when Allie's color finally came back, she didn't. Allie was unresponsive. She was given a shot to minimize damage in the event she was having a seizure (difficult to see in a paralyzed person in a halo). Her pulse was barely there. Her dad and I called her name and tried to get her to acknowledge us. More than ten minutes or so passed and we thought (hoped and prayed) she was trying to respond but maybe she was just too tired or in shock and couldn't. Her eyes and mouth were moving a little. Allie couldn't talk or focus and really didn't look at us. Her vest was opened and she was given an EKG. We went with her while she had a CT Scan of her neck and head. By this time she was asleep from the med. she had been given for the possible seizure, so we knew nothing of her condition. Every thing had been going so good. But once again the state of our world was altered in a second.
Back up in her room in the Trauma Center, Ron and I waited for her to wake up and talk to us. I got a strong feeling from those around us that they were prepared for the worst. Her pupil response was at best sluggish in one eye and not responding in the other. Sometime in the early am Allie woke up and asked where was she and why wasn't she in her regular room. We answered her questions and she went back to sleep. We were elated. She was okay. She woke again and asked the same thing. That happened a few times and we began to worry again. Late that morning slowly but surely Allie began to be herself again. She had an EEG later and the test was negative for seizure or any negative brain wave activity. There are a couple of possibilites of what caused Allie's episode but we will never know for certain. Such are the complexities of a spinal cord injury.
Allie has been struggling with some blood pressure issues and a couple episodes of something called Autonomic Dysreflexia which is life threatening and can be triggered by something as simple as an overfilled bladder or an irritant in her shoe. She passed out again on Tuesday for a minute, so we are still up in RTC. Hopefully we will be back downstairs by Tuesday or so.
When Allie is not in terrible pain or anxious about being short of breath or having fluctuating blood pressure her mood is amazingly good. She does have what her Dad and I refer to as her "bewitching hour" when it seems for a couple of hours in the early evening she is anxious, inconsolable and it is impossible to get her comfortable. In spite of this I've seen a huge change come over Allie. She is participating more and more in her care. She is learning when her pressure is low and when it is high. She knows when to tell us to check her pressure or to coughalate or bag her because she is not getting enough air. She is getting along better with her nurses and other caregivers although Allie being Allie, the helplessness and lack of control I think is even more difficult for her than it might be for most. Still while her strong natural ability/need for directing can be at times frustrating for us all, this natural trait and skill will ultimately be to her advantage. She listens to her Doctors (most of the time) and asks many questions. She is getting an education in her body, people and life that no college could ever offer.
Allie misses her friends and misses her old life terribly. She continues to say she is not depressed but she is sad and sometimes questions the value in living this way. We tell her it will get better. Sometimes she'll just roll her eyes at me and say yea that's what you told me yesterday and then look what happened. I have no argument for that. But when we are lucky enough to see her smile it is as bright as it has ever been.
In spite of the ups and downs I know Allie is getting better and I look forward to getting back to our home in the Valley. The one common thing I hear from other families like Jerry, Connor and Ian's is that it gets better when you are home. I like to think that Allie is having her scares now, to get them all out of the way.
However, I am not totally dense and realize more each day how complicated an injury Allie has.
For the first time in a very long time I am now a stay-at-home mom. Well, I will be when I get home anyway. My boss has left the door open for me and even offered opportunites for me to stay in contact with my accounts and work from home. Right now my place is with my daughter with no other distractions. I feel at peace with that decision. Fortunately, Ron has work for the next month or so. While our lives may have forever changed, with everyone's help our family can do this and will. Allie will continuously recover and meantime we will all find an inner peace of a new kind, in our new life.
From 3:00 am to 4:30 am Allie was in distress over her feeling of not getting enough breath. I continue to ask that she be given back the gift of breathing on her own asap.
Thank you for listening and for all the love and support. Through this thanks to you all, there has never been a second where Ron and I have felt totally alone.
Love, Peace & Happiness,
Deborah
First an update on the good news...the construction at the house is progressing well. And by the way...........I have no idea how we would be making these changes if it weren't for the fundraiser! Ron with the help of family and friends has Allie's new room and bathroom downstairs framed in. They are waiting on me to get some tile samples to run by Allie for approval. I planned to go out Friday to Dal Tile (they have generously offered to donate everything she needs) but Allie had a visitor and I ended up staying for the visit and never made it to the shop.
Allie's visitor, Ian is one year post injury. He is ventilator dependent and came by to meet Allie. It was an emotional visit for all. Turns out we have actually met Ian as he was a friend of our daughter Anjel. He use to live in S.C. but moved to Washington after his accident and was out here for a wedding. Although he continues to struggle physically and emotionally with his injury on a daily basis, we were thrilled to see that he is able to breathe on his own for up to an hour at a time.
Last Saturday Allie and I were out on the patio reading. It was a beautiful day and Allie was getting a break from her pretty busy schedule. Allie's trach had been changed the day before (never make major changes in a hospital on a Friday) to a different kind (I'll spare the details of why). Allie did not like the feel of the trach tube and since the ventilator settings hadn't been adjusted the darn thing was constantly alarming which is a very loud and piercing sound. Also, disconcerting since the alarm is meant to let you know there is something wrong. However, everyone kept assuring us that things were fine.
Allie's Aunt Pam came by for a visit and then Dad showed up. The alarm kept going off so we decided we'd better get back inside. While Allie's nurse helped us to bring up any secretions that Allie might be having, all of a sudden Allie turned grey, and passed out. Once again I stared into my baby girl's unnaturally colored face with her eyes fixed open, frozen, in a blank stare. While we bagged her she was quickly moved to her bed and her head was lowered. Code Blue was called. Something was different about the episode this time. I didn't think it was a mucous plug blocking her airways. The room filled with people. This time when Allie's color finally came back, she didn't. Allie was unresponsive. She was given a shot to minimize damage in the event she was having a seizure (difficult to see in a paralyzed person in a halo). Her pulse was barely there. Her dad and I called her name and tried to get her to acknowledge us. More than ten minutes or so passed and we thought (hoped and prayed) she was trying to respond but maybe she was just too tired or in shock and couldn't. Her eyes and mouth were moving a little. Allie couldn't talk or focus and really didn't look at us. Her vest was opened and she was given an EKG. We went with her while she had a CT Scan of her neck and head. By this time she was asleep from the med. she had been given for the possible seizure, so we knew nothing of her condition. Every thing had been going so good. But once again the state of our world was altered in a second.
Back up in her room in the Trauma Center, Ron and I waited for her to wake up and talk to us. I got a strong feeling from those around us that they were prepared for the worst. Her pupil response was at best sluggish in one eye and not responding in the other. Sometime in the early am Allie woke up and asked where was she and why wasn't she in her regular room. We answered her questions and she went back to sleep. We were elated. She was okay. She woke again and asked the same thing. That happened a few times and we began to worry again. Late that morning slowly but surely Allie began to be herself again. She had an EEG later and the test was negative for seizure or any negative brain wave activity. There are a couple of possibilites of what caused Allie's episode but we will never know for certain. Such are the complexities of a spinal cord injury.
Allie has been struggling with some blood pressure issues and a couple episodes of something called Autonomic Dysreflexia which is life threatening and can be triggered by something as simple as an overfilled bladder or an irritant in her shoe. She passed out again on Tuesday for a minute, so we are still up in RTC. Hopefully we will be back downstairs by Tuesday or so.
When Allie is not in terrible pain or anxious about being short of breath or having fluctuating blood pressure her mood is amazingly good. She does have what her Dad and I refer to as her "bewitching hour" when it seems for a couple of hours in the early evening she is anxious, inconsolable and it is impossible to get her comfortable. In spite of this I've seen a huge change come over Allie. She is participating more and more in her care. She is learning when her pressure is low and when it is high. She knows when to tell us to check her pressure or to coughalate or bag her because she is not getting enough air. She is getting along better with her nurses and other caregivers although Allie being Allie, the helplessness and lack of control I think is even more difficult for her than it might be for most. Still while her strong natural ability/need for directing can be at times frustrating for us all, this natural trait and skill will ultimately be to her advantage. She listens to her Doctors (most of the time) and asks many questions. She is getting an education in her body, people and life that no college could ever offer.
Allie misses her friends and misses her old life terribly. She continues to say she is not depressed but she is sad and sometimes questions the value in living this way. We tell her it will get better. Sometimes she'll just roll her eyes at me and say yea that's what you told me yesterday and then look what happened. I have no argument for that. But when we are lucky enough to see her smile it is as bright as it has ever been.
In spite of the ups and downs I know Allie is getting better and I look forward to getting back to our home in the Valley. The one common thing I hear from other families like Jerry, Connor and Ian's is that it gets better when you are home. I like to think that Allie is having her scares now, to get them all out of the way.
However, I am not totally dense and realize more each day how complicated an injury Allie has.
For the first time in a very long time I am now a stay-at-home mom. Well, I will be when I get home anyway. My boss has left the door open for me and even offered opportunites for me to stay in contact with my accounts and work from home. Right now my place is with my daughter with no other distractions. I feel at peace with that decision. Fortunately, Ron has work for the next month or so. While our lives may have forever changed, with everyone's help our family can do this and will. Allie will continuously recover and meantime we will all find an inner peace of a new kind, in our new life.
From 3:00 am to 4:30 am Allie was in distress over her feeling of not getting enough breath. I continue to ask that she be given back the gift of breathing on her own asap.
Thank you for listening and for all the love and support. Through this thanks to you all, there has never been a second where Ron and I have felt totally alone.
Love, Peace & Happiness,
Deborah
Friday, June 12, 2009
Forever touched by the Rally for Allie
Dear Friends,
What words can I possibly put here to show the feelings in my heart? For such an outpouring of love and support I think only a poet could respond with anything close to expressing how my family and I feel.
Ron, Adam and Anjel were totally blown away by the hugs, kisses, and well wishes of the crowd. The rest of my family was completely in awe of our community and the good feelings being generated in that skate rink. Unbelievable turn-out to say the least.
I have given much thought to different ways to offically thank first off the organizers who put in an incredible amount of hours, creativity and love. Unfortunately, I have come up empty. Stacey, Samantha, Crystal, Laureen, Kim, Cheri and Deb. All I can say is YOU ROCK. The event from what everyone has told me was expertly executed. Having been an events manager in a former life, I know what it takes. You all did this while working other jobs, managing families, etc. THANK YOU. You are an amazing group of compassionate powerful women. I wish for you only the greatest gifts life has to offer! I look forward to a time where we can get together and talk about Allie's inspiring recovery and what a part you played in it.
Thank you to all the other people that helped in any way including those at the door, selling tickets, collecting donations, putting up posters, etc.
Thank you to all who participated in the event, bought raffle tickets and bid on the incredible donated items.
Thank you to all who donated items making this event such a huge $$ success. Unbelievable!!!!!!!
A special giant thank you again to Stacey for starting the process. What an angel Allie found when she went to work for you!
Thank you always to Katie MacCallister for all her support in making the online communication possible and for being a source of information and inspiration.
I also want to give a huge thank you to Robert Ludlow for his guidance, insight, legal advice and assistance throughout this process. Another angel my family has been blessed with.
Thank you to all of Allie's friends who continue to visit and assure her by their presence and conversation that she is the same person in their eyes and that she still has a place in their lives. What an incredible group of young adults we have in the valley. We are a lucky group of parents.
Thank you to all my friends that continue to care for my pets, provide my family with meals, prayers and visits.
Thank you to my sisters for all their love, support, visits, and shopping trips. Thank you to my sister and brother in law for the use of their motor home which has been invaluable to me.
Thank you to my brother Doug for his faithful night visits that allow Ron and I some time for dinner together once or twice a week, but mostly for the soothing effect he has on Allie when he is here.
The adjustments that Allie and the rest of my family continue to make are life altering to say the least. You all are making them so much more doable (is that a word?).
So, I could go on and on thanking the people that are helping, but I'd better get to how Al is doing or the thank you's could go on forever.
We moved down to rehab yesterday! Yaaaaay. Now the work begins. The schedule will be much more agressive and demanding down here. Allie will be expected to be up and ready to start the day early. She will attend more therapy sessions and also be expected to participate in some peer group and education classes.
Allie has made some huge accomplishments in the last few days. Thursday we took her out to the parking lot and her Occupational Therapist, Kathi showed her the hospital van. She then asked if she wanted to try and go up on the lift. Allie was pretty scared but said she wanted to try. Before we knew it Allie was loaded in and she Brianna and I along with Kathi were taking a ride around the parking lot. If this doesn't sound like much you've never seen someone go up on a ramp in a wheelchair load in, get the chair strapped to the floor and go over speed bumps for the first time!! I'm not sure who was more nervous Al or me. The look on Allie's face during the ride was akin to the fear and determined smile that you see on someone's face during a roller coaster ride.
Yesterday Allie, Brianna, and her therapist Mira and I loaded up again and went to Jamba Juice. The smile on Al's face when she took the first sip was priceless. She drank almost a third of it.
Allie is slowly getting use to the valve that will allow her to talk, eat and drink. She will be expected to use it for longer periods of time starting on Monday. She will get to go to the gym (which she is looking forward to). Her new doctor told her yesterday that she will love him and hate him. It's his job to push her forward. He is extremely knowledgeable with injuries such as hers, and seems like a personable and straight forward guy.
She continues to have pain and some stomache issues. I think her body is negatively responding to all the meds and way in which she is being fed. I'm hoping with some new eyes reviewing her condition, things will improve soon.
Allie's road is a long and bumpy one. But a road, I believe toward recovery. She is strong, and otherwise healthy. She has an unbelieveable support group in all of you. She has the intelligence and determination (not to mention the fact she is a bit on the particular side) to see her through this.
Construction is under way at the house. Allie will have a new bedroom and bath downstairs. We are looking forward to the day we get to go home. It will be a bit scary, I'm sure, but we'll be as prepared as we can be.
I pray daily for Allie and Jerry's full recovery. My hope is that Allie's first sign of recovery will be her ability to breathe on her own. She lives in fear every second. My heart breaks that she must endure such a challenge.
Peace, Love & Happiness,
Deborah
What words can I possibly put here to show the feelings in my heart? For such an outpouring of love and support I think only a poet could respond with anything close to expressing how my family and I feel.
Ron, Adam and Anjel were totally blown away by the hugs, kisses, and well wishes of the crowd. The rest of my family was completely in awe of our community and the good feelings being generated in that skate rink. Unbelievable turn-out to say the least.
I have given much thought to different ways to offically thank first off the organizers who put in an incredible amount of hours, creativity and love. Unfortunately, I have come up empty. Stacey, Samantha, Crystal, Laureen, Kim, Cheri and Deb. All I can say is YOU ROCK. The event from what everyone has told me was expertly executed. Having been an events manager in a former life, I know what it takes. You all did this while working other jobs, managing families, etc. THANK YOU. You are an amazing group of compassionate powerful women. I wish for you only the greatest gifts life has to offer! I look forward to a time where we can get together and talk about Allie's inspiring recovery and what a part you played in it.
Thank you to all the other people that helped in any way including those at the door, selling tickets, collecting donations, putting up posters, etc.
Thank you to all who participated in the event, bought raffle tickets and bid on the incredible donated items.
Thank you to all who donated items making this event such a huge $$ success. Unbelievable!!!!!!!
A special giant thank you again to Stacey for starting the process. What an angel Allie found when she went to work for you!
Thank you always to Katie MacCallister for all her support in making the online communication possible and for being a source of information and inspiration.
I also want to give a huge thank you to Robert Ludlow for his guidance, insight, legal advice and assistance throughout this process. Another angel my family has been blessed with.
Thank you to all of Allie's friends who continue to visit and assure her by their presence and conversation that she is the same person in their eyes and that she still has a place in their lives. What an incredible group of young adults we have in the valley. We are a lucky group of parents.
Thank you to all my friends that continue to care for my pets, provide my family with meals, prayers and visits.
Thank you to my sisters for all their love, support, visits, and shopping trips. Thank you to my sister and brother in law for the use of their motor home which has been invaluable to me.
Thank you to my brother Doug for his faithful night visits that allow Ron and I some time for dinner together once or twice a week, but mostly for the soothing effect he has on Allie when he is here.
The adjustments that Allie and the rest of my family continue to make are life altering to say the least. You all are making them so much more doable (is that a word?).
So, I could go on and on thanking the people that are helping, but I'd better get to how Al is doing or the thank you's could go on forever.
We moved down to rehab yesterday! Yaaaaay. Now the work begins. The schedule will be much more agressive and demanding down here. Allie will be expected to be up and ready to start the day early. She will attend more therapy sessions and also be expected to participate in some peer group and education classes.
Allie has made some huge accomplishments in the last few days. Thursday we took her out to the parking lot and her Occupational Therapist, Kathi showed her the hospital van. She then asked if she wanted to try and go up on the lift. Allie was pretty scared but said she wanted to try. Before we knew it Allie was loaded in and she Brianna and I along with Kathi were taking a ride around the parking lot. If this doesn't sound like much you've never seen someone go up on a ramp in a wheelchair load in, get the chair strapped to the floor and go over speed bumps for the first time!! I'm not sure who was more nervous Al or me. The look on Allie's face during the ride was akin to the fear and determined smile that you see on someone's face during a roller coaster ride.
Yesterday Allie, Brianna, and her therapist Mira and I loaded up again and went to Jamba Juice. The smile on Al's face when she took the first sip was priceless. She drank almost a third of it.
Allie is slowly getting use to the valve that will allow her to talk, eat and drink. She will be expected to use it for longer periods of time starting on Monday. She will get to go to the gym (which she is looking forward to). Her new doctor told her yesterday that she will love him and hate him. It's his job to push her forward. He is extremely knowledgeable with injuries such as hers, and seems like a personable and straight forward guy.
She continues to have pain and some stomache issues. I think her body is negatively responding to all the meds and way in which she is being fed. I'm hoping with some new eyes reviewing her condition, things will improve soon.
Allie's road is a long and bumpy one. But a road, I believe toward recovery. She is strong, and otherwise healthy. She has an unbelieveable support group in all of you. She has the intelligence and determination (not to mention the fact she is a bit on the particular side) to see her through this.
Construction is under way at the house. Allie will have a new bedroom and bath downstairs. We are looking forward to the day we get to go home. It will be a bit scary, I'm sure, but we'll be as prepared as we can be.
I pray daily for Allie and Jerry's full recovery. My hope is that Allie's first sign of recovery will be her ability to breathe on her own. She lives in fear every second. My heart breaks that she must endure such a challenge.
Peace, Love & Happiness,
Deborah
Tuesday, June 2, 2009
Fear, Progress, Smiles & Tears
Dear Family & Friends,
Time passes in a hospital like it does in no other place. Some minutes pass like hours like when you are waiting for your loved one to get out of a surgery or undergo a treatment or test they find painful. Other times whole days pass by without your really noticing.
Things were going along pretty well (relatively speaking of course). I guess you could say we were experiencing a false sense of comfort. Allie is sleeping at night. She is getting much better with the bed to chair and back transfers. Pain meds have been adjusted. She was doing well with her speech and swallow therapies.
On Tuesday we had enjoyed some fresh air on the patio. We were back in her room and she was still up in the chair. She had been transferred over from the portable vent to the one in her room. All of a sudden she said she wasn't getting enough air. She told me she was going to pass out and her color changed. I looked at the dial and could see that the needle wasn't moving as far as it should have been indicating there was a leak some where. Allie began passing out. I grabbed for the ambu bag. Most of you probably know what that it is or have seen one on TV. I removed the tubing from her trach tube and began pumping air into her with the bag. Her eyes were blinking rapidly and she was not able to respond. Her nurse and I got her out of the chair and onto the bed (quickest transfer ever and not as graceful as usual). I continued to bag her but began to feel some resistance indicating a blockage of some sort. The room filled with people. My daughter lay on the bed. Her face was completely white. Her eyes were fixed open. It was what is referred to as a code blue situation. She was non-responsive. For a few brief seconds my never-ending faith that she would pull through all this, faltered. To look at her you would have been sure that she was already gone. We continued to call her name and pump air into her lungs. Time passed. It was taking too long. This could not be happening!
All of a sudden the color began to come into her face. She woke up. She asked what happened and told us she couldn't see. I could not believe that life was going to throw blindness her way now on top of everything else. Weren't things bad enough. Another five minutes or so passed and she was able to see.
So much for the false sense of comfort. Allie's tie to life is about as fragile as it can be. In spite of that she is meant to be here.
That was Tuesday. Today is Monday. Yesterday she practiced driving her wheel chair with the sip and puff. She did her best to have a positive attitude and smile and say thank you. Today she swallowed a tiny bit of yogurt. Today she got up in her chair twice for the first time. Today she smiled.
We are scheduled to move downstair to rehab on Monday. Her day will be very busy. Target date for Allie to come home is 4 weeks from now.
Please pray for God to give Allie the ability to breathe on her own before too much more time passes.
Thank you for your love, support, prayers, visits, meals, pet sitting, help with Adam, use of the motor home, etc. THANK YOU THANK YOU ALL
I am now among the unemployed. In spite of insurance problems, loss of income, etc. we know that with the love and support of our family and friends we will get through this.
Love, Peace & Happiness
Deborah
Time passes in a hospital like it does in no other place. Some minutes pass like hours like when you are waiting for your loved one to get out of a surgery or undergo a treatment or test they find painful. Other times whole days pass by without your really noticing.
Things were going along pretty well (relatively speaking of course). I guess you could say we were experiencing a false sense of comfort. Allie is sleeping at night. She is getting much better with the bed to chair and back transfers. Pain meds have been adjusted. She was doing well with her speech and swallow therapies.
On Tuesday we had enjoyed some fresh air on the patio. We were back in her room and she was still up in the chair. She had been transferred over from the portable vent to the one in her room. All of a sudden she said she wasn't getting enough air. She told me she was going to pass out and her color changed. I looked at the dial and could see that the needle wasn't moving as far as it should have been indicating there was a leak some where. Allie began passing out. I grabbed for the ambu bag. Most of you probably know what that it is or have seen one on TV. I removed the tubing from her trach tube and began pumping air into her with the bag. Her eyes were blinking rapidly and she was not able to respond. Her nurse and I got her out of the chair and onto the bed (quickest transfer ever and not as graceful as usual). I continued to bag her but began to feel some resistance indicating a blockage of some sort. The room filled with people. My daughter lay on the bed. Her face was completely white. Her eyes were fixed open. It was what is referred to as a code blue situation. She was non-responsive. For a few brief seconds my never-ending faith that she would pull through all this, faltered. To look at her you would have been sure that she was already gone. We continued to call her name and pump air into her lungs. Time passed. It was taking too long. This could not be happening!
All of a sudden the color began to come into her face. She woke up. She asked what happened and told us she couldn't see. I could not believe that life was going to throw blindness her way now on top of everything else. Weren't things bad enough. Another five minutes or so passed and she was able to see.
So much for the false sense of comfort. Allie's tie to life is about as fragile as it can be. In spite of that she is meant to be here.
That was Tuesday. Today is Monday. Yesterday she practiced driving her wheel chair with the sip and puff. She did her best to have a positive attitude and smile and say thank you. Today she swallowed a tiny bit of yogurt. Today she got up in her chair twice for the first time. Today she smiled.
We are scheduled to move downstair to rehab on Monday. Her day will be very busy. Target date for Allie to come home is 4 weeks from now.
Please pray for God to give Allie the ability to breathe on her own before too much more time passes.
Thank you for your love, support, prayers, visits, meals, pet sitting, help with Adam, use of the motor home, etc. THANK YOU THANK YOU ALL
I am now among the unemployed. In spite of insurance problems, loss of income, etc. we know that with the love and support of our family and friends we will get through this.
Love, Peace & Happiness
Deborah
Friday, May 22, 2009
Swallowing & Hallucinations
Dear Friends (old and new) & Family,
The past week or so has been a mixed bag. The nights are better due to the use of a new sleeping medication. Other than a few requests for water (small sponge to wet her tongue) Allie's been getting a pretty deep sleep until about 5 am. We hate the use of the strong stuff, but at this point sleep is crucial to her physical as well as emotional well being. It's always a toss up. The mornings continue to be rough. Allie wakes up every morning to find that her "condition" is not just a bad dream but real. She's sad and then complains of a stomach ache. She and I are talking more about the sadness. She refers to herself as broken and that she will never be normal. I tell her that it will get better and that it already has (although she has no memory of the first few weeks and can't imagine anything worse than right now). We both shed a couple tears and then talk about the goals for the day.
The last couple of days have been better than the week or so before. On Saturday morning she was complaining of pain and was agitated. So she was given a new medication (Klonopin). Her reaction to the med. was to have scary hallucinations for the next five hours. In spite of this she managed to let us get her into her wheelchair for some time outside in the fresh air.
Yesterday she had a swallow test. She went down to have a scan video taken while given fluids with dye in them. She did pretty good. She was cleared for small ice chips, teaspoons of juice and 7up. Her swallow is not quite strong enough yet and there is some residuals getting hung up, so a bit more work before she can sip from a cup or straw. She was less than pleased about that. She wants to drink a glass of water something fierce. I think a lot of the stomach pain is due to her only source of nourishment being liquid through a feeding tube directly into her stomach. It will be a day for celebration when she can drink and eat like the rest of us!!
She continues to have pain, though not quite as bad. She is on several pain medications including Neurontin for the "nerve pain" (thank you Katie for the heads-up-she's actually be on it for quite a while but I always appreciate anything you have to offer, just in case). Her time up out of bed and in the wheelchair is up to 3 hours now, which is awesome.
We saw a few smiles this last couple of days which is what keeps me going. She's been pretty bleak but sometimes when friends show up or she finds out one of her two favorite nurses is coming on shift, she'll show us that beautiful smile.
Ron, Adam and I continue to be incredibly touched by the support and help of our friends and family (not to mention the prayers from people we don't even know!!). Anjel went by the preschool and was blown away by the incredible baskets that have been donated for the Rally for Allie fundraiser (again thank you Stacy for putting this together). The generosity is not something I can even begin to adequately thank you all for. A special thank you to my boss, Curtis who has been incredibly supportive. As some of you know, I started a new job in February.
I feel in my heart and soul that Allie is healing. In time she will overcome her current disabilities. As always thank you all for the prayers, visits, meals, cards, donations, posters, pet care, wishes of strength, etc.
Love, Peace & Happiness
-Deborah
The past week or so has been a mixed bag. The nights are better due to the use of a new sleeping medication. Other than a few requests for water (small sponge to wet her tongue) Allie's been getting a pretty deep sleep until about 5 am. We hate the use of the strong stuff, but at this point sleep is crucial to her physical as well as emotional well being. It's always a toss up. The mornings continue to be rough. Allie wakes up every morning to find that her "condition" is not just a bad dream but real. She's sad and then complains of a stomach ache. She and I are talking more about the sadness. She refers to herself as broken and that she will never be normal. I tell her that it will get better and that it already has (although she has no memory of the first few weeks and can't imagine anything worse than right now). We both shed a couple tears and then talk about the goals for the day.
The last couple of days have been better than the week or so before. On Saturday morning she was complaining of pain and was agitated. So she was given a new medication (Klonopin). Her reaction to the med. was to have scary hallucinations for the next five hours. In spite of this she managed to let us get her into her wheelchair for some time outside in the fresh air.
Yesterday she had a swallow test. She went down to have a scan video taken while given fluids with dye in them. She did pretty good. She was cleared for small ice chips, teaspoons of juice and 7up. Her swallow is not quite strong enough yet and there is some residuals getting hung up, so a bit more work before she can sip from a cup or straw. She was less than pleased about that. She wants to drink a glass of water something fierce. I think a lot of the stomach pain is due to her only source of nourishment being liquid through a feeding tube directly into her stomach. It will be a day for celebration when she can drink and eat like the rest of us!!
She continues to have pain, though not quite as bad. She is on several pain medications including Neurontin for the "nerve pain" (thank you Katie for the heads-up-she's actually be on it for quite a while but I always appreciate anything you have to offer, just in case). Her time up out of bed and in the wheelchair is up to 3 hours now, which is awesome.
We saw a few smiles this last couple of days which is what keeps me going. She's been pretty bleak but sometimes when friends show up or she finds out one of her two favorite nurses is coming on shift, she'll show us that beautiful smile.
Ron, Adam and I continue to be incredibly touched by the support and help of our friends and family (not to mention the prayers from people we don't even know!!). Anjel went by the preschool and was blown away by the incredible baskets that have been donated for the Rally for Allie fundraiser (again thank you Stacy for putting this together). The generosity is not something I can even begin to adequately thank you all for. A special thank you to my boss, Curtis who has been incredibly supportive. As some of you know, I started a new job in February.
I feel in my heart and soul that Allie is healing. In time she will overcome her current disabilities. As always thank you all for the prayers, visits, meals, cards, donations, posters, pet care, wishes of strength, etc.
Love, Peace & Happiness
-Deborah
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