Rally For Allie

Power Wheels

2011-08-01T22:25:00.000-07:00

Dear Family & Friends,

I apologize for the long gap between postings. People have been asking for an update, and please believe us when we say how much we appreciate the loyalty of interest in Allie's progress.

Well at long last Allie's power chair arrived! Before she received full instruction on its operation, she was driving around the house as we followed behind. Wow. Very exciting stuff. As a mom, I can't describe what it feels like after two long years, to see her moving around without help from one of us. She can go out onto the deck or porch without our help, to her computer table or the dining table when she wants to. She can now look in the direction of her interest in stores or the yard without having to ask someone to do it for her. She can tilt back on her own for comfort or a weight shift. In addition to the newly found independence this chair is such a better fit for her and her shoulders no longer rest on bars! It's a pretty amazing thing to see her work this chair. With a "clicker" near her cheek she can change modes and a joystick near her chin she can drive. It's no surprise that she quickly became impatient with my attempts to work the attendant controls to get her in the van and in the right position to hook her chair to the tie downs. She can now do what took me ten minutes in about 3! In my defense....I am not of the joystick generation:)

Allie continues to be physically healthy and has gone out a couple more times on her own, with the help of Jordan and Aurezu. She also went on a lunch date with Christopher with Adam along to help. Like any typical young adult any time out spent with friends is the best time. We've attended a couple college graduation parties and another concert. She is much more relaxed than before at these events and really enjoys herself. Most of her time is still spent at home, but her friends often join us for the occasional shopping, movie, dining out or a trip to get a manicure. They visit when they can and she cherishes the visits. Confident that Allie's condition is so much more stable, I've begun to get out more. More time spent with my husband or out with friends. Thanks to Auntie Vicky, Marsha, Anjel and of course Ron covering for me, I was able to go horse camping with Tricia and company and enjoyed some awesome riding and relaxation. I also spent a weekend with some very special friends for our annual get together. We stayed only minutes away as we did last year, but this year I stayed for both nights. Baby steps maybe, but great progress for both Allie and me. She likes it best when I am home with her. She worries less and is more comfortable. I worry less too. We both know though that it is important to trust others. And we are so very fortunate to have such a wonderful support team. As difficult as it may be sometimes, we both need a breather from one another once in a while.

So many improvements. Life has begun to take on a more positive rythmm of sorts. Can't say the rythmm is quite upbeat maybe not worth dancing too yet. Weekly (sometimes daily) I fight the never-ending fight with the insurance companies, and the vendors, etc. to see that my daughter gets the medical attention and supplies she needs. Currently, the battle is with the company that supplies her vents and some other respiratory equipment. We've been trying to get a suction machine and two portable batteries replaced now for two weeks! Both these items are life sustaining. If her one working suction machine was to suddenly stop working it would mean an immediate trip in an ambulance to an ER. It seems there is no end to these battles.

We are doing all we can to maintain her current healthy state and we continue to see her strength grow slowly. She has a wonderful team of doctors that keep close tabs on her. At home we keep her joints flexible, see she makes it to appts., takes her meds. These things we can easily do for her. We can't give her the thing she wants more than anything though....to breathe on her own, the use of her hands, to walk, to run, to talk above a whisper, to hug. Allie has had too many days lately where she's questioned whether she wants to continue living like this. For Ron and I, hearing this from our child is excruiating. Allie and I fight (like most mothers and daughters do at one time or another). The subject matter however, is not like most mothers and daughters. I feel powerless. I don't do powerless well, so can only imagine how Allie not so unlike me in many ways, copes with her level of disability. She's a fighter, she's tough and stubborn, but still I worry when she gets this down. So I argue, lose my patience, encourage and console. Still, I feel powerless to change how she feels. I cannot give her what she wants right now. We can still...pray, hope, envision her walking and laughing. Send our positive energy to those working on the cure. Stay up to speed on their progress. We know you're getting close. Please hurry.

So we will wait. Her time will come. In the meantime all of us here will do our best to enjoy our spot in paradise, the sunny weather, each other, the love and support of our family and friends. While not quite ready to go back to the rigors of school, Allie is looking into some other ways she can pass some time. She wants so to be "useful" in some way again. She wants to find a way to contribute. I've no doubt she will.

A giant thank you to Uncle Doug P. for the incredible amount of time and attention to detail he spent searching for the right motorhome that could be converted for Allie. Only to then spend an enormous amount more getting all the necessary modifications done for her. It's an incredible vehicle. Without this mode of transportation vacations for her would be virtually impossible. Our family has done a couple successful trial runs. The first with full hook-ups and the second without. There is much to think about and plan for, when one of your family members is dependent on a ventilator and restricted to a wheelchair. The trips were not without their challenges. In the end all went okay and a good time was had. Allie and I even have plans for a girls trip this coming weekend (wish us luck). Ashley, Jordan, Samantha and my friend Rosalie are joining us. Thank you Rosalie for agreeing to be our driver! The RV is a 34 foot Hurricane and the bedroom is fully equipped with a special bed for Al and an overhead lift. The "living room" has a bump-out so there's plenty of room for her to move around inside. It's a really tall lift to get her in the RV but the ramp that was installed is strong and safe. Extra outlets were installed in her room and a closet was removed to allow for an easier transfer from her chair. She's still a bit reluctant because going places sometimes only reminds her of what she can't do instead of what she can. In time we hope as her confidence grows, this will allow her to enjoy many adventures. Thank you again Uncle Doug -- we would have never been able to pull this off without all your help!!! And thank you to Pat and Hank for your assistance as well.

Best wishes to Uncle Doug H. He had surgery today for a leg broken while wake boarding. We love you. Speedy recovery to you. We will miss your Tuesday visits. You are the best. Thank you to Marsha for being such an awesome addition to our Team Allie. Thank you to my sisters for being the most amazing women, supportive sisters, aunts, and sister-in laws. My family is so very thankful for all you do for us. Thank you to all our friends for always being there for us. We love you all.

Thank you for listening. Stay safe.

Love, Peace & Happiness,
Deborah

Powerchair/Cal. Alliance update since last post

2011-04-22T18:09:00.000-07:00

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:)

Outraged!!!

2011-04-17T18:14:00.000-07:00

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

Ditching mom and loving it!

2011-02-28T21:11:00.001-08:00

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

Wow

2011-01-07T18:29:00.000-08:00

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

Go Giants & hello time change

2010-11-11T17:59:00.000-08:00

Dear Family & Friends,

I had hoped that scarey incidents, breathing issues and hospital stays would be absent in my next post, and I am relieved and so thrilled to say that they are!!! Things around here have been going pretty good (relatively speaking of course). Allie is mostly healthy and has put back on the weight she lost during her last two hospital stays. She gets a sterioid enhaler twice a day which is successfully keeping the wheezing away. Her pain seems to be less frequent and she is even thinking about another decrease in the dose of her nerve pain med.

The last month or so has been pretty quiet. Allie and I did have friends over for a little party one evening which was fun and as always a mixed bag for Al. It is difficult for her in a large group to keep feeling involved with her limited mode of communication. Having been an especially vocal and active person she is having to learn a completely different way to stay part of the conversation and activities. Her friends being the sensitive and special people they are seem aware of her feelings and it is fascinating to see how at all times she has the attention of at least one of them!

We celebrated twice last month as Anjel turned 30 and Adam 19. Ron was able to go on a 5-day lobster diving trip compliments of his good friend Mike and he brought us home lobster to enjoy for Anjel's b-day dinner. It was quite the feast.

Last month we also had a visit from Ian and his parents from Seattle. You may remember my talking of Ian in past posts. He came to meet Allie while she was still in Valley Hosp. His mom and I keep in touch via email and she is always a great source of information and emotional support. Ian also has a high injury and breathes on a ventilator. When we first met him he was practicing off the ventilator for a few minutes at a time and is now breathing completely on his own whenever he is awake. The doctors cannot explain why or how but he is living proof that it's possible. It was wonderful to see Ian doing so well and to hear his stories. He is a sensitive guy and great inspiration to Allie and they share a special connection.

Allie is much more of a sports fan than I am, (she especially loves pro-basketball) in fact, as I write this, she's watching her favorite team, the Celtics play. But, this baseball season the whole family (even me) caught Giants fever and really enjoyed cheering them onto victory. Uncle Doug is a huge sports fan and made sure that both Adam and Allie were "rockin" championship tee-shirts for good luck. The games were a welcome and enjoyable distraction for us all.

Halloween like most holidays put Al in a bit of a funk. I think missing out on a night where young adults get to explore their alter egos and express whatever facade they choose made her pretty sad not to mention the inevitable party with friends. Luckily, cousin Eric came and spent a couple days and they watched movies and talked to pass the time.

During Eric's visit Allie discovered another way to pass the time. With Eric's help she opened up a paypal account and made her first purchase on EBay. She loved the shopping and bidding and was very pleased with her accomplishment as well as the great deal she got on a purple Ipod she gave to Samantha as a b-day present. She was bursting with happiness in anticipation of giving such a nice gift to her good friend. As soon as the gift was opened Sam and I set up Allie's computer so that Al could download some music for her. She's getting pretty fast in spite of the challenging set-up and it is kind of mind boggling to watch her on her laptop.

The time change has kind of put us all out of whack (as I suspect it does with most people). It was pretty comical on Saturday night as I attempted to set my phone with the schedule of alarms for the nightly routine. For some reason, I was having the most difficult time adjusting for the hour back in the middle. Sometimes, I do think my mind is turning to mush! On the other hand Allie is as sharp as ever and is enjoying her winning strategy at Monopoly and Scrabble. It was her idea to play the board games and it is really nice to see her enjoy herself and feel capable. At this time of year she has a lot less sun on her deck which is a huge bummer. A future goal of ours is to make our property much more accessible to her, as there is usually some sunny spot somewhere if only we could get her in her chair to it.

I saw on Jerry's blog the video of him on his FES Bike. Go Jerry! The bike is so cool and they attribute much of his improved movement to the use of it. We are working on getting all the approvals through so that Allie can have an opportunity to try one out soon. Hopefully, OT and PT should start no later than early December.

To read of Jerry's journey see: followingjerry.com

Our anticipated life's journey took a major re-direction the day my daughter suffered such a life-altering injury. I know there are people who live their lives angry, vindictive, greedy, and jealous. I also know that they are drastically outnumbered by those that live with an open heart, are compassionate, caring, generous, loving, forgiving, and full of faith in themselves, each other, their God or the universe. For the last 19 months my daughter and these remarkable people some of them family some friends and some strangers have been my teachers. I guess that's the "silver lining" I cling to. My daughter's losses and burdens haven't lessened yet, but our believe that things will get better, remains strong. We are having more good days, most are still pretty tough and a few nearly unbearable, yet a day does not pass that I am not moved by a gesture, a comment, a letter, or a gift in some form. A friend recently told me that Allie will never know what an impact she has had on her life. I wish my daughter was not the instrument for our internal discoveries and new appreciations for what we have, but it is what it is. Allie's bravery at facing each new day with its challenges, and discomforts still amaze me. Her concern and love for friends and family in spite of her situation makes me so proud. It is easy for me to see why so many love her.

On a less positive note we have had an ongoing "situation" since being at Valley with obtaining the trachs that Allie needs/uses. You may remember an attempt to change to another type before she was released from Valley Medical because of our lack of DME coverage with Kaiser (durable medical equipment)and lack of availability from her medical supply vendor for the type she had. The result of the change was that she nearly died. We were able to leave the hospital with enough of the correct trachs to get by until now, but are down to her last two. She will have a trach change at the end of the month which will leave her with only one. When I think of what a seemingly impossible task it continues to be to get her this small piece of life-sustaining silicone which isn't even that expensive, I feel my head might spin off. Thanks for listening.

A special thank you:

To my husband Ron thank you for all you do. You are an awesome and loving dad and husband and find yourself too often last behind Allie, Adam, the horse, the dogs, dishes, laundry, etc.

To Adam for his daily assistance and to Anjel for coming to the rescue whenever we need you.

To Connor for your prayers during Allie's most recent breathing troubles and very close call. The concern you both show for each other with all you've got going on personally is inspiring. We miss seeing you guys and have to get together soon.

To read of Connor's journey: www.connorwatch.org

To Rick @ Caldwell Carpet Care for not only your generosity and my nice clean sofa, but mostly for reminding me that although we may not always hear it, that there are still so many of you out there pulling for us and praying for Allie's strength and recovery.

To David W. for your moving letter and donation to Allie's trust. You and your family have suffered so much pain and loss and yet you take the time to write to us and pray for Allie's increased comfort, function and peace. You are clearly a remarkable man and source of inspiration.

Mike S. for your generous donation
Linda F. for your generous donation
My sister Pam and my niece Jessica for your generous donation

To my sisters Sandra, Victoria and Pamela, my brother Douglas, Kerry, and Kathi.
What an exceptional group of adults Allie is so fortunate to have as friends and life models.

To cousins Eric and Latasha for your uplifting visits

To those of you providing us with the yummy meals!

To those friends of Allie's that still include her and visit when they can

To all of you that give us encouragement through comments on this blog

To all of you that pray and hope for Allie's continued improved health and ultimate recovery

Thank you. Have a wonderful and safe Thanksgiving holiday.

Love, Peace & Happiness,
Deborah

Things you never want to hear

2010-09-09T20:50:00.000-07:00

Dear Family & Friends,

Your daughter is a very sick girl....she has broken at least one vertebra in her neck, probably more...she has been unconscious since arriving....it does not look good....one of your daughter's vertebral arteries has been damaged beyond repair and unless we can stop the bleeding as soon as possible, your daughter will not make it....your daughter is paralyzed from the chin down....your daughter is unable to breathe on her own and is dependent on a ventilator....

The first few days after Allie's accident was truly the worst nightmare. To be honest, I have never even imagined anything as horrible happening to someone I love so much. And although we have had major ups and downs since then, I now have another string of just a few words that will forever be burned into that place in my heart and mind that come back to haunt me on a regular basis.

In my last post, I touched on some breathing issues that Allie was having. Unlike the trachea problems she's had in the past this new problem resembled asthma attacks.

We did our best to remove whatever might be triggering the episodes. We had an enhaler. We changed lotion, soap, laundry detergent, removed all feathers, flowers, down and anything we thought might harbor dust from her room. I began researching room filters.

The episodes would come and go. Some days she would be fine and some she'd have an "attack" two or three times in a day. One night the wheezing began and we could do nothing to eleviate it. It wasn't going away. Her chest pain was terrible and we couldn't properly vent her. It became increasingly more difficult for her to breathe in, and exhale. We called for an ambulance. While dad, Auntie Vicky and I took turns staying with Al and getting ready for yet another trip to the hospital, she passed out. When she "came to" shortly before the ambulance arrived she was pretty unaware of her surroundings and certainly not herself but her color was good and although she was confused, I could tell she was okay. Adam, Samantha and Ashley had all heard about the 911 call and had arrived at the house to see Allie briefly and tell her they loved her, as we wheeled her into the ambulance. During the ride to the hospital she told me she was going to pass out. While I assured her she was fine and to please just relax I saw her face freeze and drain of all color. I heard the medic riding with us say "beginning CPR" as she responded immediately. Actually, it could have been "starting CPR" I'm really not sure. All I know is I had to push away the feeling of doom. I was so scared. One of our friends from Felton fire had come along with us and she also got busy. I continued to give Allie breaths from the ambu bag while the medic did for her what Allie's body couldn't. This time Allie's heart had completely stopped. They tell me it was four minutes. By the time we arrived at Dominican ER Allie's heart had begun beating on its own but Allie was out of it.

So began an agonizing 5 or 6 hours in the ER. Upon my insistence a Pulmonologist was called in to see her and if not for him, I don't think Al would have made it. Then to ICU while we waited for a bed to open at Kaiser Santa Clara. It was probably about 24 hours or so before we knew that other than a very badly bitten tongue and once again no memory from about five hours or so before the episode began, thanks to the CPR Allie received, Allie was still our Allie. So after another stay in the hospital where she received massive doses of steroids and antibiotics, the wheezing seemed to be gone.

The valley lost one of its long time and popular residents this year, Al Rudy, Samantha's grandpa. We had only been out of the hospital for a day and a half when Allie found out that morning that his memorial service was to take place in a couple of hours. She was determined to go be there for her friend and her family...."it's important mom". That morning I happened to have a stiff neck, and absolutely no energy and saw no way we could do all we had to do to be up and out of the house in time. Kath came by to do Allie's range of motion and called in Talley to help. Between the two of them...Talley massaged the biggest knots out of my neck so that I could hold my head upright and Kath started to get Al ready. While I got myself ready, Talley did Allie's hair and makeup. Thanks ladies. You made the impossible, possible! And thanks to Adam for going along with us to help out. The outing exhausted Allie, but she was so glad she had gone and I was incredibly proud of her. The way she can rally strength for friends or to do the right thing, never ceases to amaze me.

Thank you also to Deb Mattson (my long-time friend *look for her office on HWY 9 in Felton if you are interested in an awesome massage*) for making a housecall, the following day (on a Sunday no less) to continue working on the knots in my neck. Also, thank you to my brother Douglas for adjusting my neck and back. You'd think I'd be use to those ICU "bed chairs" by now, but that visit really took a toll on me!

To make yet another long story short our time at home didn't last. Allie's wheezing began again. Dad, Auntie Sandi and I took her in to see her Pulmonologist and he admitted her back into ICU that afternoon. He had been on vacation during her last stay and his approach to her treatment was different. Another five days and we were home once again. The new meds seem to be working.

Thankfully the last couple of weeks have been pretty uneventful. Mostly, Allie still spends her afternoons sitting outside on her deck enjoying the beautiful weather as much as she can until the sun moves away and she gets chilly. We have to wait all over again for all the improvals to go through for her therapy and since the first week of her online cabrillo class was spent in the hospital, she decided to drop it for now. The boredom sometimes I think is unbearable for her, but still much better than the "excitement" of the emergent health issues she seems to be unable to move away from.

We get out of the house as much as Allie is willing, but she continues to be sad and uncomfortable when we venture out. Most people are great, but some people cannot seem to help but stare. We did attend a Candle Lite Party hosted by our friends Denise and Bianca. It was a great time spent with friends and family and also a fundraiser for Allie. Thanks Denise for such a generous and thoughtful gift and thank you to all of you that attended.

I guess that's about all for now. I continue to be thankful for our beautiful comfortable home in "paradise". We know we have the best family and friends anyone could ever have. Regular visits from my brother and sisters mean so much to all of us and keep us going. Kerry, Kathy, Wendy, Susan & Tricia (among others) are always here for us helping with the practical, the fun times, as well as moral support. Thank you to Matt and Auntie Pam for their recent and very generous donations to Allie's trust. A giant thank you to my sisters (especially Auntie Vicky) for all the meals while we were in the hospital so that Ron and I could enjoy an occasional dinner break together, outside the room in the hospital courtyard. Thank you to all of you that continue to bring us those awesome meals (in spite of my insistence that you've already done more than enough).

A special thank you to my brother-in-law, Douglas for the new dishwasher!! I could have done without, but am so happy not to have to.

Please continue to pray for Allie's physical as well as emotional strength and recovery. It seems increasingly clear that it is critical for her to be able to experience some significant improvement in her condition soon, in order for her to have any peace of mind.

Hopefully, next post I will have some good news to share!!!!!!!!!

Love, Peace & Happiness,
Deborah

Transistions & Set-Backs

2010-08-08T10:29:00.000-07:00

Hi Everyone,

When I write these posts I make an effort to pick a title that I feel is relevant to what is happening with Allie or where she is in her "progress" at the time of the post. A couple of weeks ago I realized it had been a while since I'd written and it was time to sit down and let you all know about the latest happenings. The title I thought would best fit the time was "Transisitions". Somehow I was distracted that day and never got past the title. Since then more has happened and I've had to once again acknowledge a temporary set-back. Hopefully, I will get the time today to bring you all up to date. Thanks for your patience.

My daughter's strengths are many and her sensitivity, confidence, competitive nature and intelligence had served her well before her accident. The one thing I felt she always struggled with though, since birth, was making transistions. While some thrive on change and the spontaneous, Allie seemed to strongly resent moving from one place or action to another, unless she was the one making or in some way controlling the move. So how does a personality that resented being put in and out of a car seat, having her hand held in the mall or going from the 2nd to the 3rd grade before she decided to, deal with a sudden and complete loss of control? In the last month or so I was beginning to see a change come over Allie. She was preparing for a transistion. She was beginning to think about and talk about letting go of what she had perceived to be her place or role in this world and her plans for the way in which she expected to participate in it. She was taking the first steps towards coming to terms with her current situation. I'm not trying to fool myself into thinking that she was happy about this and that it was going to come without tears, confusion, anger and resentment, but Allie is more than just a survivor. Allie has always tried to be the best at whatever it was she was doing and she was, I think, realizing that it was time to figure out what that was now going to be. She sees what her friends are up to. She hears about their jobs, boyfriends, colleges, parties and trips. All of these things she still can and will have if she so chooses, but the path for her has changed drastically. She still has so much to offer but how and where?

We've been pretty busy around here lately. Thanks to the hard work of my husband, brothers' inlaw, nephews and son, my horse is home! The family camp really feels complete now and Allie and I have Cash's antics to entertain us along with the dogs. Allie, Adam, Taylor and I attended a 4th of July bash at the Sander's. Allie had a chance to talk with several friends she hadn't seen in a while. Thanks to the Sanders for including us and thank you to Mike and the rest of the guys that helped me get Al and her chair safely through a couple minor obstacles to the festivities. She had a great time. Ron, Allie and I met up with Connor and his family for an early dinner down at the wharf a few weeks ago. We all had an awesome time. Allie always feels especially comfortable with Connor and his family since the action of suctioning, etc. is something they are so familiar with. We made it over to Wendy and Tanner's for a fun dinner date. Allie said it was really nice to just go and hang out with good friends somewhere different for a change. Michelle, Samantha and Dylan came over one weekend to barbeque for Allie and Wendy brought home made ice cream sandwiches to complete the menu. We had a visit from Auntie Sandi that was overdue since she had back surgery a while ago and has been unable to travel. Al had really missed her. Uncle Doug, Auntie Vicky and Auntie Pam's regular visits are always so comforting to Allie and give Ron and I a break (and Allie a break from us). On one of Uncle Doug's last visits Ron and I enjoyed a dinner out with our good friends, Rosalie and Doyal. Kerry continues to be a frequent visitor and always manages to make Allie (and me too) feel better. She helped for the first time with a transfer yesterday and did great. She says she's ready to try suctioning next! Kathi off from teaching for summer vacation is back to coming mornings to do Allie's range of motion and her company is always helpful and a great comfort in so many ways. We love seeing Annie, Julie and the kids and are very excited that soon they will be moving within walking distance! Susan's morning visits are always a welcome treat for me and Tricia and I actually made it into the park the other day for a ride through the redwoods on our "ponies". The best therapy for me and Al did fine hanging out with Dad and Adam.

Allie has her first PT appointment scheduled next week at Valley and as I've mentioned before, can't wait to try out the FES bike. I'm hoping they'll come up with some good ideas to help her strengthen her neck and in the meantime help her get more comfortable in her headrest, which is a constant source of frustration. The biggest news I guess is that Al and I spent our first night in over 16 months, apart from each other. It has been a tradition for over 20 years for me to go spend a weekend away with three of my favorite women friends. Last year was obviously not an option but I decided to give it a go for at least one night this year. My friends cheerfully agreed to change things a bit and we rented a cabin within a few minutes of home just in case. Auntie Vicky during her visits had become quite competent with all Al's care and so came to stay the days and night with she and Ron. I am very happy to say that overall things went great in my absence. I had a wonderful time relaxing with my friends, dining out, walking in the park and doing some local wine tasting! Allie genuinely enjoyed hanging out with Auntie Vicky and having a break from her ever-present mom! When I called to check in Kerry had dropped by and the three of them were laughing and having a fine time. All in all in spite of the daily ups and downs we felt pretty good with the direction things were moving in.

Just when things seemed to be falling into a if not entirely comfortable pattern, at least a less stressed one, the other night Allie began having trouble breathing. This did not mimick anything we had seen before. Her circuits (the tubes that deliver breathes from the vent to her trach) started making a loud wheezing sound. Allie began experiencing chest pains and she felt extremely short of breath. There was no indication of high pressure on her vent as I'd seen in the past. The first night it happened we got through it somehow but when the same thing happened the following night Allie passed out completely. She was out much too long while Ron, Adam and I desperately worked to bring her back. Get her on her back, head down, legs up, breaths from the ambu bag. A drill we know well by now, but still the fear and heart-clenching chill that this might be the time we can't do enough and the reality of how close we are to losing her, makes it a challenge to remain calm and focused. Slowly her color came back. By the time she was fully aware, she once again "woke" to her room full of concerned emergency personnel. Thanks again to our friends at the Felton Fire Dept! We opted not to go to the hospital that night as the worst seemed to have passed. I called her pulomonologist the next day and he agreed that he should see her asap. She went for chest xrays. We were all relieved that there was no indication of fluid or clots in her lungs. As an extra precaution one of her ENT docs came and scoped her to find a healthy looking trachea. We had packed for a hospital stay just in case and were thrilled to be going home later that same day. She was given a prescription for nose drops and an inhaler. Unfortunately, she has had several "episodes" since. Kathi was here to witness one and said that it sure resembles an asthma attack to her something Allie has no history of. While the inhaler does not give Al immediate relief it does seem to be helping. We hope whatever is going on will be shortlived and Allie can get back to the business of what I'm calling her "transistioning".

While Allie begins plans for a new path to travel there is amazing progress being made in the science of stem cell research and active trials. Either way, I hold onto the belief that her future like most 20 year olds is full of amazing promise and that any path she chooses will be remarkable.

This morning Allison came by for a surprise visit with her bright and bubbly personality and as I write this is helping Al eat the breakfast she prepared for her. She'll help me get her up and hang out for a while. There is no subsitute for good friends. Seeing my daughter's beautiful beaming smile when she heard the familiar voice coming through the door, is a gift I can treasure all day today. The love of our friends and family always the best medicine of all.

Thank you to all the incredibly special people we have been blessed enough to be surrounded with. Please remember how much you mean to us. Please continue your prayers that Allie breathe on her own soon and that she continue to heal. Your words of encouragement on this blog mean a lot to Allie and the rest of us. We do look forward to hearing from you.

We cannot fail with all of you behind us.

Love, Peace & Happiness,
Deborah

ps: thank you to Farrah for the picture and stuffed animal you made for Allie and to Luke for the cool horse picture you gave her (Auntie Deborah Loves her's too!).

TMPRARY

2010-06-20T10:29:00.000-07:00

Dear Family & Friends,

"Tmprary" that's what you'll read on the license plate of Allie's van. It may be considered an unecessary expense to pay for a personalized plate, but somehow in this case, it seemed important for her to express not only her feelings about her current mode of transportation, but her current physical state. We've never considered Allie's condition to be permanent and still don't. I can tell you though as time goes on, I can see how easily it would be to go crazily discouraged when you hope and pray so hard and see such little, if any, improvement. A few weeks ago things seemed to me to be getting so tough around here, it almost seemed hopeless. The sadness and frustration was rising to a feverish pitch. Allie's pain had been especially bad for a few days straight. If she wasn't in terrible pain physically, she was increasingly bored and depressed as well. Adam was stressed registering and getting classes scheduled for college while taking finals and finishing up all he needed to do to graduate from high school. Ron was hobbling along best he could trying to do things around here and dealing with the disappointment of losing a couple of jobs because the people couldn't wait any longer for him to be over his injuries. So...I was feeling pretty close to my breaking point. Sometimes it doesn't take much to make you smile for days like the first time I saw a bird bathing in the beautiful ceramic bird bath my sister, Pam gave me for my birthday. But sometimes it doesn't take much to forget about the good stuff and get stuck focusing on the negative. How do people survive this? How can we live like this? This is too scary, too sad and too hard! Questions I have asked myself over and over. Something has got to get better. As often happens in life, (but unfortunately not always) just when you think you can't take it anymore something gets better. For us, this came in the form of a small but significant step toward independence for Allie. Her computer arrived fixed and like new. A couple days later the hardware and software we ordered arrived (thank you once again to Auntie Vicky & Marquerite for helping to make these things possible and to Uncle Doug for taking care of the external hardrive).

Allie's first attempt to work her laptop ended with frustration and tears pretty quickly. Just the basic seemingly simple gesture of moving a cursor had become for her, a huge physical challenge. The system Allie has works with a camera mounted on the top of the screen. The camera tracks a "small paper dot" that sticks either to your forehead or glasses. It moves the cursor as you move. You use a sip and puff stick for right and left clicks. Because of Allie's limited head movement we've found the best place for the dot is on her chin. This is especially difficult. If you can, try and imagine keeping your chin still when you've finally got your cursor where you want it, but at the same time using your mouth to operate the sip and puff to click. I am happy to report though that the next couple of times she made remarkable progress (no big surpise knowing our girl). She's already been talking with friends, started a playlist for a new CD and even downloaded a ringtone for me. When she told me that the best part of working on the computer was the ability to finally do something by herself, I had to turn my head to hide my tears. Once again she makes me so proud and yet at the same time so ashamed. How dare I complain about my frustration with our situation when she continues to show such progress. Watching her tackle this latest challenge reminds me that while we may be missing out on some things that we once took for granted, that in ways never imagined, our new life gives us an opportunity to appreciate the "little" things that most let pass them by.

Adam is the fourth of our children to graduate from SLV High. Thank you Whitney for coming over in the morning to do Al's hair and help her get ready for the big event. It started at noon under a very hot June sun. Thank you, thank you to the MacCallister's for sharing with us space under their easy-up. Without the shade I don't think Allie or Ron would have made it through. Thanks to Dennis for helping me get Al up the slope and across the lawn. Thanks to my son Alonzo for helping me get her back down the slope! They had a more accessible way to get to the festivities that did not include a slope, but we had parked as close to the tent as possible and so dealt with the slope instead of pushing her across more lawn than we had to, as it is a very bumpy ride for her. The ceremony was very nice and we all went out to the wharf afterwards to celebrate Adam's accomplishment.

Uncle Doug and I brought Allie for a trach change earlier this month. It went well and although there was a small amount of granulation present her docs were very pleased with the way her trachea looked. Al hates trach changes and it is a very stressful time for her. She did a great job though. She likes and trusts her ENT doctors and it gets a tiny bit easier each time.

Friday, Allie went back to Valley Medical for the first time. The minute we drove into the parking lot her stomach began to ache. Four extremely difficult months of her young life were spent here. Her whole life changed here. It was here that she was told she wouldn't walk or breathe on her own. She quickly pulled it together though and was really happy to see many of the wonderful people that had worked with her during her stay. Because Kaiser's rehab center is in Vallejo and really isn't as fully equipped for Al's needs, after many phone calls, discussions and emails, etc. she has approval to go to Valley for Occupational and Physical rehab. We aren't sure yet how many sessions she will get, but we will fight the good fight to get her the best and most we can. The occupational therapist talked with her about which power chair will be most appropriate for her, and will help her to get a much-needed shower chair as well. The consult with the physical therapist is on Monday. Our hopes are that they will work with her on developing some neck strength and Allie is really hoping to get a chance on the exercise equipment in the gym. More progress!

I want to send a special thank you to Tanner, Marguerite, Susan, and Samantha for helping with transfers. Thank you to my sister, Pam my brother-in-law, Rod and my nephews, Nick and Travis for all their work on the corral. Thank you to Ashley for helping Al pick out her new shades. Unlike you, I'm pretty sure I would have lost my patience after the 30th pair:)!

Thank you to all our friends and family that continue to be there for us in so many ways. Your meals, flowers, visits, prayers, love and support are incredible. Thank you to those of you that include us in your prayers even though we've never met. You are the best.

Love, Peace & Happiness,
Deborah

First Concert, May Flowers, Sunshine & Hope

2010-05-13T10:31:00.000-07:00

Dear Family & Friends,

May has always been a favorite month of mine. It marks the beginning of days spent in the sun, my wedding anniversary, mother's day and my birthday. This is the first May since the kids were babies that I will be at home all week during the day. While the circumstances are tragic and most days are still filled with sadness and frustration, something about the season brings renewed hope, or at least the promise of a lot of outside time. It's been tough for Allie being a sunworshipper like her mom, to struggle with just how much sun is okay and how much is not. She can go in minutes from having the chills to being badly overheated. In spite of the sometimes drastic and scary temp changes she is looking healthier every day and has a beautiful sun-kissed look.

Allie and I have been planting flowers. She directs of course and I pull weeds, dig and plant. The dogs have been especially entertaining lately as they also are enjoying the warm weather and time outside with us. They both can hear Allie's whisper and kiss noises and will come to her when she calls to them. We are venturing out a bit more but Allie is still only up for about six hours and most days are spent at home.

In April Scotty called and asked me if he could take Allie to the Brooks & Dunn concert. Allie was pretty excited at the prospect and I very nervous. A big group of friends was going and she had her heart set on joining them. There was no way I was letting her go without me but, I did hope we could find a way that would allow her some feeling of independence. So began the plans, frustrations, tears, more plans and then change of plans. Going places isn't easy anymore. Nothing is taken for granted anymore. If getting Al in and out of bed is stressful and takes two of us imagine what going to a concert entails. To complicate things further, all her friends had plans to purchase tickets to sit on the lawn. Well, to get to the lawn there are stairs and the lawn is slanted and crowded (not ideal for a wheelchair especially one with a life supporting vent attached). So we attempted to get seats near the accessiblity section for a few friends and found out she could have only one attendant! Several attempts were made by me, Kerry and Scotty to get an exception made but, no luck. Scotty and Clinton came over to see if they could carry her up the stairs to the lawn and decided that with four of them it would be an option (I figured I'd have a heart attack for sure but Allie was determined). Well, to make a very long story short it turned out that Auntie Vicky had tickets to the same concert. Auntie Pam and cousin Travis decided to go as well. They planned to arrive early to grab a flat area for us in the front of the lawn. After meeting with the management they were told that there was no way that they would allow Al to be carried up the stairs (although we had been assured on the phone that it is done all the time). The concert was packed and country concerts have a reputation of being rowdy. Allie when she heard the news, (we had just arrived and were in the parking lot) was heartbroken and wanted to go home. Ashley and Samantha talked her into staying. The venue's management with the help of my sister's proding were very nice (especially Kara) and secured us four seats in the accessibility area and would allow Allie's friends to switch off tickets to visit her. She even escorted us through the crowds when we arrived. The concert was awesome and Allie had a blast. Allie had a chance to have several of her friends come and go and our spot was a lot more comfortable and the view a whole lot better than the lawn seats. I was glad it all turned out for the best but it is so disheartening to watch Allie go through the emotional turmoil. Going to a concert when you are twenty should be so easy...you buy your ticket, hop in the car with your friends and go enjoy the music. For my girl nothing is easy anymore.

Overall, Al is doing pretty well physically. No problems with high pressures which is a relief. I think she looks great but she says that coming from me, since I'm her mom, that doesn't mean much. I have to admit that there are times when I am so frustrated with her. I want her to be more optimistic. I want to see more smiles, and have fewer sad times. What it comes down to though is that the frustration I'm feeling is about me. Like all moms I want my baby girl to be happy. Right now in addition to seeing to Al's daily physical needs, as her mom, it's my job to keep her moving forward to try and find that balance between allowing her to grieve her losses and still manage to focus on the positive. I tell her that she is who she is because of her heart and her mind not her body. Easy for me to say. The losses they are so personal and intimate, so constant. They bring feelings of such loneliness and dread. The balance between empathy and "pushing forward" such a tightrope walk for me. Through all this it is actually Allie that is and will set the pace. She always has. She will master things when she is ready. Her fears are justified and will diminish with time. This I know. Her sadness is another story.

We are in the process of getting Al's computer fixed. She is registering for an online english class and has even done a couple of paintings my mouth. She continues to be a source of compassionate and sound advice for friends that share with her life's ups and downs. Her favorite times are those spent with her friends. She also really enjoys spending time with her brothers and sister of course, her cousins, uncle and aunts. It is a welcome break for her when she gets a chance to hang out with someone other than her mom! From my standpoint, in spite of the circumstances, I feel so lucky to have had this time to spend with my daughter. As I've said before I always knew she was special. I just didn't realize how special. I am a better person for having the privilige of watching how she copes, how much she still gives, how she struggles and how hard she tries.

I want to give a huge thank you to Jake and Howard for the Roku box they donated to Allie. She is truly enjoying it. Thank you so much to Keenan and Marquerite for coming to our rescue at the last minute to help transfer Al. If it wasn't for your help she would have had to spend those days in bed. You both did an amazing job and it was a first time for both of you! Allie felt very safe with your help.

Thank you to Randy Smith. He sent Allie a book that we haven't read yet but are looking forward to. I am continuously amazed at how generous and thoughtful people are. We don't know Randy, yet he took the time to write Allie a card and send her a book!

This past few weeks has been especially trying on our family. As many of you already know, Ron had a bad fall working in my soon to be corral area. As a result, he broke his ankle in two places and his arm was so badly broken that after four attempts to set it, he required surgery. Adam has stepped up big time. Helping me with Allie much more than usual, helping his dad when I'm busy with Al, shopping, working around the house and just basically helping to keep our house functioning. Thank you Adam. I am so incredibly proud of you! Thank you to Jim Z., Anjel, my sisters and brother for the extra help since Ron's been down and out (well as much as we can keep him down anyway:).

Thank you to Bianca for your desire and help in exploring the possibities of getting Allie an FES Bike.

Thank you to all our friends far and near for the love, encouraging comments on the blog, and practical as well as emotional support that you give on a regular basis. It means so much. It keeps us going. Take care.
Thank you. Thank you.

Gotta go.

Love, Peace & Happiness,
Deborah

One Year

2010-04-07T08:10:00.001-07:00

Dear Family & Friends,

I told myself that I wasn't going to even acknowledge this day. As it approached, chances were that I wouldn't even know what day it was, as I usually pay little attention to the date these days anyway. Allie expressed to me her anxiety as it came close. I assured her that it was nothing more than a meaningless measure of time. If we have to think of that day then we will think of it as the day we could have lost you and didn't.

That day one year ago today is forever burned into my memory. From the first call. The disbelief again and again as people told me things that could not be possible. That I did not want to hear. The pain. The fear. Then the joy when I walked into a hospital room whispered my daughter's name and watched as she opened her eyes and looked at me. Sure she was scared beyond belief. She looked horrible. She was barely recognizable. But it was Allie that looked back at me and I knew at that moment that she was going to, against all odds, survive. And survive she did.

There is no way that any of us could have possibly anticipated or prepared for anything like this ever happening. Coming from a large family, we have always felt very fortunate that all our kids were as healthy, happy, smart and as beautiful as they all are. You prepare for your kids going away to college, you think about how you will feel when you find yourself with empty nest syndrome you even prepare for earthquakes. You do not prepare for paralysis.

This past year, the first 12 months of this journey, have been filled with a stronger mix of emotions that I could have ever imagined experiencing. Everything in our lives has indeed changed forever. It has been a constant roller coaster ride of frightful as well as uplifting turns and bumps. Because of all of you, we have made it. Allie has had the love and support of her family, friends and the whole community (close and extended). So, in spite of all the hell and torture she has had to endure both physically and emotionally, she has never given up. I honestly don't know how anyone less fortunate they we have been, gets through something like this. Thank you all so so much!

Since my last post Allie has been making great progress in getting out more and planning for her immediate future. We took a trip over to Morgan Hill to visit with Connor and his family. Jordan came along to help hold Al's head over bumps and turns. Connor, is not only in a wheelchair but like Allie, also dependent on a ventilator. His injury was a result of a diving/swimming accident at camp. He and Allie are very close in age and he has been a great source of comfort and inspiration and Allie is very fond of him. We first met Connor and his family when they visited us at Valley Med and since, they've visited here at our home a couple of times and met us in SV for sushi dinner. The more I get to know Connor and his mom and dad, the more I like them. I am very thankful for their friendship as we share day to day trials and fears that most parents could never understand. We also enjoyed a visit with Jerry and Katie last month. It's the first time that Allie and Jerry have seen each other since their accidents. Having gone to the same school but, having been in different grades and traveling in different crowds they never knew each other much. The visit went really great and we look forward to more get-togethers. Jerry brought his computer set-up for Al to see. She's also seen Connor at work on his, so she now has two to compare. She actually had an opportunity to use Jerry's and caught on very quickly. We are in the process of getting her a set-up now, thanks to a generous donation from Marquerite. I sent a letter to Apple in hopes of their donating a computer but never heard back. There is a possiblity of having her old laptop fixed and so I am pursuing that today. She is now more than ever, very eager to get online. That same day, while Jerry was here we had a visit from Levi and his dad, Bill. Levi has spent the last ten years in a wheelchair as a result of a broken neck. He is a great source of information and keeps in great shape with the use of a specially equipped bike (unfortunately very expensive). One of the things that bothers Allie most of all is the loss of muscle as a result of no real exercise. We can give her range of motion to keep her joints from locking up but, we can do nothing to maintain or develop muscle. Allie's cousin Latasha visited for a day and night recently and joined Allie, Ashley, Tanner, Vince & Daniel for a picnic in the park. Al even made it to watch one of Adam's Lacrosse games. It was a bit frustrating for her though since she can't move her head side to side to watch the action.

As it seems is the case for Allie more often than not, with steps forward so come those backward. A couple of weeks ago Al went in for a check-up with her ENT. We were very excited to find out that he was able to acquire the smaller trach that we hoped would allow Allie to voice. The trach went in and at first Allie was able to have enough of a leak to have a bit more than a whisper. Going home we all hoped that over the next couple of days the leak would increase and she'd be talking. As the night went on things rapidly began going in the other direction. Her whisper became quieter and her peak presures (the amount required to fill her lungs to the set capacity on the vent) began rising. By morning it was very difficult for her to breathe. We made some adjustments on her vent and called her doc. To make matters worse I had broken one of my own rules and allowed such a big change to take place on a Friday. It was Saturday morning and her doctor was out of town. We got one of his associates on the phone and since it was a Saturday our choices were to bring her to the ER or change the trach back to the larger size ourselves. Trach changes are done at home all the time and it is a relatively safe procedure. Allie opted for us to change her trach. We've seen it done several times and she would agree to almost anything to avoid going to the hospital. So, with the doc on the phone to walk me through it and for moral support, we got started. Ron was right there with me and we felt fairly confident. At some point during the procedure Kerry came so she was there with us also. I removed the trach and inserted the new one but, it would not go all the way in. I asked the doctor how much resistance should I expect. She said there would be some and that I should go ahead and push it in. It remained sticking out of her stoma about one centimeter even with the gentle pressure. I switched back and gave Allie a few breaths. We tried again. It would not go in and granted this was my first time doing this but, the resistance seemed to be too much and I was not willing to push any harder to get it seated. Allie said she was going to pass out. We told her that her sat was 98 not to worry. I am not positive of all the details. One second she was okay and the next she was passed out. Her face immediately drained of color her face and her eyes rolled back and then fixed straight ahead in a blank stare. Okay, I know you have heard this story before but the times it happened we were in the hospital. Code blue could be called and within seconds the room would fill with trained people that could help bring her back. They had the tools and the training. Scary beyond belief but at least we knew she had the best chance possible. This time, we were at home alone. I pulled the new trach out and Ron inserted the smaller one. It went in easily. We began giving her breaths with the ambu bag. There was no change. I saw Kerry standing at the end of Al's bed. Her horrified expression and eyes full of tears. For a flash of a second, I thought I had killed my daughter. Ron told me no way we would get her back. At some point, during the trach change I'm not sure when, Kath had showed up to do ROM. She called 911. It was a good three or four minutes before we began seeing color come back into Allie's face. Once again our buddies at the Felton Fire showed up. Allie's heart rate was terribly slow but she was awake and talking. She refused to go in an ambulance and we headed over the hill to Kaiser ER. Kerry came along to help. The ENT doc promised to meet us there. After talking with the doctors what we think happened to cause her to pass out is something called vagaling. You may remember this happened to Allie before when she was at Valley Med. The vagus nerve is the nerve of the muscle in the throat and larynx. Many things can stimulate this nerve which causes the heartrate to slow to a dangerous rate or even stop.

After a frustrating 1/2 hour or so in the ER where I managed to anger at least two doctors and one nurse that were convinced that Allie had a lung issue and were eager to administer steroids, we were able to see the doctor that had been on the phone with us so was familiar with what had happened. She tried to put the size 6 trach in and met with the same resistance. To make a long story short...Al was admitted into ICU. Her doctor was contacted and he asked that as long as Allie remained stable that nothing be done until his return. Monday she went into the OR. The granulation was back. In just the short time that the smaller size trach was in, her trachia/airway had almost closed. Allie did really well through the whole ordeal. She told me sadly that she thinks she's getting use to it. We came home Tuesday and she's doing great.

When I began writing this post Allie was fast asleep. She's awake and by the look on her face just now when I walked in the room to check on her, she knows what day it is. Her face was a mask of grief covered in tears. I don't want to get up today and I don't want to see anyone she told me. I wanted to tell you more about the positive. The growing relationships Allie has with her Uncle Doug, Auntie Vicky, Auntie Sandi and Auntie Pam. The friends that are always here for us both and make the biggest differences in our days. How Scotty and Samantha loaded her up in the van for an outing the other day without my assistance. About our Easter. But, I don't have time. I need to go lay down with my daughter and promise her as many times as it takes, that things will get better. \\

Ahh there's Jordan's jeep just pulling in to the front. She's been with Allie every step of the way. We will get her through this day.

Thanks for listening. Thanks for the love and encouragement. Thanks for the prayers for my baby girl. Thank you. You make the difference.

Love, Peace & Happiness,
Deborah

ps: To Laureen & Sharon - the flowers are beautiful Al loves them and they brought big smiles

Pain, Despair, the Mall & Good Friends

2010-03-15T10:43:00.000-07:00

Hi Everyone,

This morning I came out to the kitchen looked out the window at the beautiful sun shining and felt so good. The good feeling lasted about five seconds and then the sadness fell around me like fog. My girl is still unable to move, breathe on her own and is sad every day. So this is how Allie feels in the morning. See my nights are so interupted with suctioning and all of Allie's other care that I don't think I've ever really had time to have that false sense of "all's well with the world this morning". I was up last night as much as ever. Still...I don't know if it was that I slept in later than usual, the incredible sun, the time change, the fact that we spent a lot of time outside yesterday or just that time is a healer even in the worst of situations. For those five seconds life was great. I do remember how it feels and am going to do my best to hold on to that and practice stretching out those five seconds!!

Allie's pain continues to haunt her more days than not. She has some stronger meds now and has chosen to take them a few times although she remains very conservative with their use as she worries about addiction. She has had some shortness of breath when she's up, which is a new problem, but if I temporarily increase the volume on her ventilator she seems to be fine.

The last couple of weeks Allie has shown some incredible progress in her desire to try new things. She has decided to try and do some painting. Auntie Vicky helped us as we shopped at Beverly's for some supplies. John F. has given Allie an easle and dad is working on a way to adapt it so that Allie can reach it. I can't wait to see her creations. She has always been artistic and she certainly has a lot to express.

Last week Allie surprised me again by saying she wanted to go to the mall to buy a gift for Brianna, who just had her 21st birthday. Now anyone that knows Allie, knows she is no stranger to the mall! But since her accident she has refused to go. She's very uncomfortable with the way she looks and hates it when people stare. So with Jordan along to help (thanks Jordan) we headed out. Jordan, by the way, has become quite competent at transfers and has even suctioned Allie's trach. So we went to the bank in town where Allie had business to take care of and did so with the help of Carmen (thanks Carmen). And then we drove to the Capitola Mall. It was wonderful to see Allie taking the time to not only shop for Brianna but a few things for herself too. We had dinner at Chili's and headed home. It was a great day. All three of us had a lot of fun. This trip was yet another milestone for Allie. Sure some people stare but not everyone. Most people are sensitive and do what they can to ease her discomfort. She still has just a whisper but is increasingly more comfortable with communicating with people and most seem to have no problem understanding her. I watch her take control more and more. Ordering food in a restaurant or talking with a banker a few months ago was so much harder for her than it is now.

Friday night Allie had a little surprise party for Brianna. Allie chose decorations and directed us as to where they should go. It was a small gathering of a few friends but a very good time was had by all. The thing about fun times is that with many ups there are the downs. That night Allie and I talked until about four in the am. Her despair so great. She asks me such difficult questions that I am grateful it is dark, so she can't see the tears streaming down my face. She wants the same things we all want. She's not asking for anything unreasonable. She doesn't want riches. She doesn't want to be famous. She doesn't want to be powerful. She wants to go be with her friends. She wants to work and go to school. She wants someone to love and love her. She wants to be a wife and mom someday. She wants to walk and breathe on her own. When mom do you think they will come up with a treatment for me? How will we be able to pay for it? Do you really believe it is going to happen? I don't want to live like this for too much longer mom. It won't be worth it if it goes on too long. Allie's determination and then feelings of hopelessness are so strong. Her arguments so compelling. Her insights so profound. The things she talks about, her outlook, frustration and emotional pain and logic astounds me. I am challenged by her in one way or another every day. We are not a family that gives up. We will not give up and even on the most difficult of days we must find faith and if she can't, it is our job to help her. Lucky for us we have all of you to help.

The last few days we've been getting out and soaking up a bit of the afternoon sun. It sure helps to get outside. We continue to have visits, good wishes, great meals, letters and support from friends and family. We are so incredibly blessed to have such a strong support group. Allie and I use to argue about which of us had a bigger and better group of friends. It seems that now the groups have merged and we can now together enjoy these amazing people.

I am so excited about spring and summer. I am hoping that Al's neck will be strong enough soon so that we can get out for some more adventures. It is still unclear when and where Allie will be going for her rehab but we should be hearing something soon.

Time is so much more powerful than I ever realized. A year to someone fifty so much shorter than to someone twenty. A day so much more precious to someone that is having their last day, than to someone that is suffering and tolerating their way through the day.

Thank you for all your prayers, love & support. We could not do this without you, please know that.

Love, Peace & Happiness,
Deborah

Happy New Year?

2010-01-31T12:51:00.000-08:00

Hi Everyone,

I know some of you look for updates and we appreciate you so much. I apologize that it's been so long.

I hope the holidays were wonderful, fun and relaxing for you all. December was a great month for visitors. Many of Allie's friends were home from college and it was great for her to see people she hadn't seen in a while. Christmas for us was a lot more low key than in years past, but we were thankful to be together and our tree was beautiful. This year we tried something different. Instead of "santa" going crazy and "delivering" a bunch of gifts we took Allie's suggestion and did secret santa. We each bought for only one other person in the family. We wrote short lists and set a small dollar limit. I ventured out to the mall once, but other than that Allie and I did our shopping online. The following day our extended family came..aunts, uncles and cousins and we played our annual white elephant gift exchange. Allie was the first to begin the "stealing". She was much more comfortable with the crowd than on Thanksgiving and everyone had a great time.

I'd love to say that we toasted with champagne and banged pots to bring in the new year but things for us didn't quite go that way. To be honest, I really didn't even realize it was new years eve until later that afternoon. I got a call that morning from my brother that mom wasn't doing well and that maybe I should head over to see her. She'd been kind of up and down for a while and in and out of the hospital but the drive to Walnut Creek or Concord took longer than I was comfortable leaving Allie, so I hadn't been able to see her much. So anyway, on the drive over listening to the radio I learned that it was new years eve. I spent a couple hours visiting with my mom. I brought Dixie my dog. She had a way of cheering up grandma more than any of us did! I headed home only to find that Allie was having some difficulty with her breathing. We transfered her to her chair hoping that sitting upright would help but the high pressures continued. We feared that her trachea had begun closing again. At one point, she briefly passed out and we called 911. Then she seemed okay so we cancelled and began the discussion about what to do next. After our last experience we were all a bit aprehensive about going to Dominican and Allie was pretty set on not going there! It was clear we could not vent her and we needed to do something, but we wanted to do the right thing. We talked about driving her to Kaiser. We weren't sure which scenario scared us the most. The trip over the hill (on a holiday) bagging her all the way. What if she were to go into cardiac arrest? What if we brought her to Dominican and we had to sit for hours again and wait for transfer to Kaiser? What if we were to have a repeat of her last visit there? Even though we had cancelled the 911 call, our friends from Felton Fire showed up anyway thinking we may need some help. We did!! They were, to say the least, concerned about our idea of driving over the hill but supportive and understood our concerns. Attempts were made to secure an ambulance over the hill but none were available. Allie really didn't want to get in an ambulance anyway and since she was in her chair wanted us to drive her where ever we decided to go. They made more calls and a paramedic supervisor (sorry I don't remember his name) showed up. He made a call to Dominican's ER and assured us that they would be ready for us and that it was the safest decision. We put it to a vote and Allie, Ron, Adam and I all voted that a trip over the hill was maybe not the brightest decision. We drove to Dominican in our van and the supervisor drove along side to make sure we got there safely. I am very pleased to report that our experience there this time was awesome. There was a vent and an RT ready to assist Allie with her breathing. Plans begun immediately to transfer Allie to Kaiser. Kaiser sent an air ambulance/helicopter and this time I was able to sit right next to Allie (actually she refused to go otherwise). She was scared but calm during the short ride.

When we arrived at Kaiser the same doc that was in ICU last time had heard she was was coming and stayed late to be there when we arrived. Staff was on hand and all emergency equipment ready. I am extremely pleased to say that the ride and arrival went without incident. The air nurses were great and Allie was comfortably transfered from their hands to her hospital bed. What a dramatic change from last time!

After things quieted down and people began to leave and it was just a nurse, Allie and me in the room, she said mom look at the clock, I turned and looked, it was two minutes to 12. Happy New Year? We weren't so sure.

It was a long and quiet weekend. Friends and family visited and we watched movies to pass the time. Monday, Allie went into surgery. Her docs found that the temporary tube that had been placed to maintain her airway after her last surgery, had shifted and was laying against her tissue wall and preventing her from getting sufficient air. They replaced the tube with her regular style trach and removed just a small amount of granulation this time. Al sailed through the surgery.

We prayed and crossed our fingers...maybe she'd get her voice back now. Over the next couple of days it became clear that wasn't going to happen. We were relieved that she was doing well, but we were crushed that she still couldn't speak.

As always it was wonderful to get back home. Since then Allie's been back for a check up and her trachea looks really good. Things seemed to have calmed down in there and her doctor has promised to look into the possiblity of a smaller trach tube that might allow Al to talk.

On January 17 my mom decided that the battle she had been fighting was a losing one and that she was too tired to do it anymore. I joined my sister's and brother as we spent the afternoon saying goodbye and doing our best to see that my mother's passing was as painfree and gentle as it could be. Our hearts broke and the grief almost unbearable, as she peacefully went to sleep. It was the longest amount of time I'd been away from Allie since her accident. When I got home she told me that while she was sorry for our loss it made her happy to know that she now had another guardian angel to watch over her.

The last few weeks Allie has been suffering from an increasing amount of back and now arm pain. Pain in a paralyzed person is, quite possibly the cruelest part of the injury, I sometimes think. Her dad and I like to think that the spreading of the pain is her nerves waking up and awake nerves give us hope. I know there are many people out there working on a cure/treatment for spinal cord injuries...thank you and please hurry!

Allie was able to attend her Grandma's funeral. We gave her the option to hang out in the back of the church with dad in case she needed suctioning or became anxious, and I was very proud when she elected to sit up front with the rest of the family. After the service we went to Auntie Vicky's and were able to get Al into the house with the help of a portable ramp that Kerry got for her (thank you Kerry), from Jennifer who generously contacted us via this blog (thank you Jennifer). Michael from Mac Cal has also offered to manufacture or purchase and modify ramps for Allie, so we expect she should have access to many of the places she wants to go, before too long. It was a long day for Allie (as was for all of us) and she did fantastic. She's abandoned her neck collar completely now, which is awesome and shows that she has gained a bit more strength in her neck. Driving still does take its toll though, and her brother and sister took turns holding her head during turns and over bumps in the road. When we got home from the service and Allie was tucked back into bed, I told her how beautiful she'd looked and how proud I was of her. She looked at me with tears in her eyes and said "mom I hate being like this". "I know you do baby, I hate it too" was all I could say in response.

So far 2010 has brought Allie another trip to the hospital, the loss of her grandma, more pain, no visible improvement in her state of paralysis and still nothing more than a slight whisper. On the other hand, we have had visits from family and friends that previously had been reluctant/afraid/resistant to visit (my daughter's ability to put people at ease never ceases to astound me). Fewer mornings are filled with overwhelming sadness and we continue to get out a little more.

Auntie Sandi bought Allie a clock and it hangs in her bedroom where she can see it everyday. I will leave you with the words written on the clock --

Every Moment Holds The Possiblity Of A Miracle

Here's to us all. Happy New Year. We love you and we thank you for your continued and amazing support.

Love, Peace & Happiness,
Deborah

An Ambulance, a Helicopter and a Movie

2009-12-11T15:33:00.000-08:00

Dear Family & Friends,

As many of you know, the day of Allie's accident she was flown via helicopter from Felton to Valley Medical. When I got the call I told myself all the way to the hospital that it had to be a mistake. It wasn't Allie's car and it was not her that had been flown. When we arrived, the helicopter was still on the roof. Still I told myself it was not my baby girl that had arrived in it. When we walked in the ER the place was packed. I went up to someone and said that we heard our daughter was there. I told them her name. They quickly brought us in. My heart sank. I felt sick.

Since that day the sound of a helicopter brings tears to my eyes. While we were at Valley Med. we heard them on a regular basis, but never did I get use to it. I tried to tell myself that it was a good thing. Without the speed and care of the air ambulance, Allie likely would not have made it. Still, the thought of her without me or her dad. She must have been so afraid. Fortunately, she remembers nothing of the experience but that gives me little comfort.

Monday before last, Allie started experiencing high pressure alarms and was having much more difficulty breathing than usual. It didn't appear that she had much in the way of secretions though. We moved her back from her chair vent to the bedside hoping that the moist air might help. She did okay through the night, but woke up in the morning unable to get a breath from her vent. I bagged her on and off, but every attempt to put her back on the vent failed. Adam was home and I called for him to help. We took turns giving her breaths from the ambu bag, while I called an ambulance and got things ready to go. Adam called Samantha so they could follow behind to the hospital.

The Paramedics and Felton Fire arrived. They were great. I got to ride in the back with Allie to give her her breaths and she was calm and appeared very brave. We arrived at Domican ER. Her friends arrived and took turns keeping her company and trying to keep her spirits up.

Attempts were made to suction and put her back on her vent to no avail. I requested she be transferred to Kaiser Santa Clara thinking they were better equipped to handle Allie's special needs. While I was out of the room (talking with Kaiser) she was being given breaths by someone else. When I came back in the room she said she couldn't breathe and was going to faint. I saw that the bag was not completely attached to her breathing tube. I don't know how long it had been like that. We got it attached and gave her a breath. Too late. She went out. Michelle, Jordan and I watched in fear, as it seemed certain that this time, she would be taken away from us.

In an all too familar scene the room filled with people. I remember yelling this time. I was not only scared but very angry. I heard someone say she had no pulse. She was given CPR. I heard someone say he felt a pulse but it was thready. I don't know what that means but I could tell by the look on his face that it could be better. The next thing I knew she was gritting her teeth and I asked for a bite stick. By the time I got one, she had bitten her tongue very badly. I don't know how long she was gone this time.

She was moved to ICU. She wouldn't be going anywhere right away. It was a long night. Some how, I felt we were losing time. She was put on a vent with altered settings and given much needed potassium (turns out her BP Meds. deplete her of potassium).

The next day the decision was made to transfer her to Kaiser, via helicopter. She was adamant that she would not go. She was sure she would either die from lack of breath on the way or that they would crash. We tried to assure her that it was the safest way. But, inside the thought of the necessity of another helicopter ride made me want to crawl in a hole. Allie wanted to go home. She was done. No more she begged me. "I can't do this anymore mom just please take me home" she cried and it broke my heart in more pieces than it is already. Finally, she agreed but only if I could go with her. I told her I'd do my best. Ron, went ahead over the hill to be there in case they wouldn't let me ride with Allie. Auntie Sandi and Jordan went as well. My sisters Vicky and Pam stayed behind to see us off in hopes that they would, and to give me a ride over the hill just in case they wouldn't. I was able to convince them to let me go. Allie was calmer and did pretty good until we got in and she saw that I had to ride in the front and we couldn't see each other. She began to panic. It seemed a very long ride. I could hear what the nurses in the back were saying, but I couldn't talk to Allie. I could tell by the nurses conversation that she was in serious respiratory distress.

When we arrived things happened quickly. Nurses appeared on the roof to greet us. I was told that she passed out in the helicopter, but briefly. We wheeled her into ICU and picked up Ron who was waiting, along the way. She was moved from the gurney onto her bed. Dad and I were there. She had the help she needed. She was going to be okay. Accept that she kept saying she couldn't breathe. I looked into her face and tried to tell her to relax and that she would be okay. Then we saw her eyes go into that fixed stare. She was going away again. Code Blue was called. The room once again filled with people. She was given something to jump start her heart and CPR. All that her dad and I could do was stay close to her, rubbing her head and begging her not to give up and leave us.

It is impossible to know how long it would have been before Allie came to, because of the drugs she had been given. Her ENT and Pulmonary Dr.'s were called in. While she was out, they took a look in her airway. The stenosis (granulation tissue, scar tissue or whatever you want to call it) that was present in her trachea just below where her trach ended, had gotten so bad her airway was nearly closed. This is the area that has been preventing Allie from having enough air to pass up over her vocal chords so that she can speak. It was really amazing that she was getting any air at all. Also, from the amount of bagging she had been receiving over the last 24 hours, her tissue was very dry. They performed an emergency procedure at bedside removing dried mucus and enough tissue so that she could breath while they planned the next step. Ron and I watched as they removed her trach and she was left without air over and over again for what seemed to us long periods of time while they went down her trachia with their instruments. Then as they tried different sizes of tubes to see what would fit in her small airway. With each attempt our hearts sank. Our fear was the type that makes you feel as if you are coming out of your skin. I could feel Ron's terror and his overwhelming desire to do something to help. We were so very helpless to do anything to change our baby's situation. All of our hopes and trust in God and three doctors that we barely know. Then one of her doctor's looked over at me and gave me the thumb's up. They had a tube in her that would fit and allow air to reach her lungs. For now she was safe.

The next day the decision was made to perform laser surgery to hopefully open up Allie's airway permanently. That evening Ron and I waited almost two hours for what was suppose to be a 45 minute procedure. Friends and family came by or called for updates. As time went by, the process of watching the door waiting for the Doctors to come and talk to us, was something I was getting to know well. I knew that as soon as I saw their faces, I would know my girl pulled through again.

The procedure was a success. The tissue was lasered, cut and injected with steroids. There is no guarantee of course that the tissue will not "grow" and close up her airway again. Allie's body has an amazing ability to heal and that is pretty much what her tissue is trying to do -- fighting that artifical piece of plastic in her body where it doesn't belong, but is necessary to keep her alive. The docs explained to us that another temporary tube had been placed instead of her regular trach to try and maintain as much of the "space" that had been made.

Now most people after an ordeal and surgery such as Allie's would sleep for a while. But, not our Al. By the time we had finished talking to the doctors and got to her room she was wide awake and giving the nurses a hard time. She hates to wake up and see that her mom isn't there! We knew then that our Allie was really back.

We got to bring Allie home the next day. Uncle Doug and Auntie Sandi came to the hospital to spend the day and see her safely in her van for the trip home to the redwoods.

Since home Allie's been doing pretty good. Her breathing via her vent is fine. She only wears her collar when she's up in her chair. Trips in the van are less uncomfortable for her. She's getting more use to the lift. She's trying very hard to relax during transfers but still hates them.

Wednesday Allie asked if we could go to the movies (Blind Side great flick by the way). Adam, Keenan and I loaded up and off we went. Ron met us there and after we went out for Chinese. Her resilance is mind boggling.

Torture is the word that comes to mind, when I think of all Allie has gone through. I wonder when the steps back will be smaller steps and those forward bigger. I wonder when her smiles will be more frequent than her looks and cries of fear, loss, sadness and pain.

She continues to grieve for her former life. She watches friends carry on with their lives, busy with school, jobs and their social scene. She has a great feeling of loss for those friends too uncomfortable to continue a friendship with her. She's grateful for those that can. I know in time she will form new friendships like the one with Connor who understands much more about what she's going through than any of us can.

Allie's talking about taking some online classes. Her laptop broke in the accident so we are looking into getting her a new one and finding some hardware and software that will be appropriate for her. Continuing her education will be a great boost for her.

As a mother, I continue to pressure her. I tell her to eat more, drink more water, be more positive, and to try and tough it through things. The real truth is that everyday I ask myself how does she do it? She amazes me beyond belief and I could not be prouder.

I want to give a very special thanks to just a few of the people that have helped bring light to this most difficult journey:

Kathy who continues to come every morning to give Allie range of motion
Uncle Doug, Auntie Vicky & Auntie Sandi for their regular visits, love, patience and the comfort they give their niece and relief to Ron and I
Kelly, Wendy & Kathy for arranging meals for us and to all of you who provided them
Kerry for your regular visits, mochas for me and love and crossiants for Allie
Sharon for your thoughtful and fun gifts for Allie
All of you that have and continue to contribute to Allie's SNT
Bob for the moral support and all the help getting us through the system
All of Allie's friends that love her and continue to visit, include her in things and help out
Stacey for her continued support and help
June for your words of faith and prayers for Allie
The Dalton's for being the meals go-between
Phyllis for your special love for Allie
Susan for the treats and morning visits
My Anjel Banjel for running errands and being such a good big sis
Adam for help with transfers that make your sister feel safe
My husband who puts up with me and Allie even when we are our most difficult
All of you that have said prayers, wished Allie well, and have kept us in your thoughts

Thank you. We are so lucky and blessed to have you.

Please continue with us to believe in Allie's recovery.

Peace, Love & Happiness,
Deborah

Giving Thanks

2009-11-30T10:27:00.000-08:00

Dear Family & Friends,

I hope you all had an awesome holiday. Like most families, Thursday we spent Thanksgiving day eating, drinking, cooking, cleaning, (well actually my sisters and brother did most of the cooking and cleaning!)talking of current events, sharing good memories and hopes for the future. Traditionally, we go to my sister Pam's in Shingle Springs for a couple of days but that would have been impossible for Allie. For instance -- too long of a drive, no access to the house, too many levels in the house for her chair to get around once in there, no proper bed, etc. etc. So this year we invited everyone here and they all happily agreed. Allie had stomach issues for at least a week before the day and I'm pretty sure it was due to stress. Although everyone was fine with the location change she felt bad to be the "cause". She worried about seeing people she hadn't spent much time around and just plain grieved for her inability to participate in a holiday with friends and family as she always had in the past. Her life has changed so much. Nothing for her is as it was. She wants so badly to go be with her friends. To go to work. To go to school.

It was wonderful to have everyone here. The house was full. Part of our extended family, the Dalton's, (less Tricia who just lost her dad and had flown out to be with her mother) came too. For Allie her time with the "crowd" was short as she was up for only a couple of hours before she asked to go back to bed. The noise was too much and she was having some difficulty breathing due to some high pressure and didn't want to scare or make anyone uncomfortable. Bottom line is she hates being trapped in that chair with no voice and no way to take control or modify her place in her immediate environment. People that are not around her much have difficulty understanding her and believe me she knows it, if you try and fake it. It took her a while to settle down but once she did her cousins joined her in her room for a movie which was great.

Allie has been experiencing some excruiating back pain lately. I've suggested increasing her nerve pain medication but she is resistant. After the time it took to wean her off all the meds she was on at the hospital she is determined not to go back down that road. I am proud of her for that and as always impressed by her determination and strength. However, her level of pain is unacceptable. Paralyzed and in pain? Dang. The good news is she is open to other alternatives so we are checking into options.

Her night time and early morning anxiety attacks reached an all time high over the last couple of weeks. It is agonizing watching her so distraught and feeling so helpless, so unable to help her. There are so many possible reasons for her discomfort or fear and it can be a long process as she tries to narrow it down so that we can help. Try and imagine not even being able to turn your head to assure youself that the noise you heard was just the wind blowing a tree outside your window. Or maybe you were dreaming of your former life when you could breathe on your own, only to wake up and find that when you tried to take a breath you couldn't. Some discomforts are more obvious and quickly identified, but just as frustrating. Maybe you have hair in your face or the covers are too high, maybe you've gotten too hot or cold and your hands won't move so that you can make the necessary adjustment for comfort. This is Allie's minute by minute hellish reality. On the upside she had a kind of a breakthrough a couple of days ago and we came up with a plan to better deal with the stress brought on by some of these incidents. Wish us luck!

When I gave thought to all I have to give thanks for this year, so many things were obvious. I am thankful for my husband's unconditional love for me, my four beautiful children, that against odds my daughter's life was spared, the incredible support from our loving family, friends, and this wonderfully compassionate and generous community. But, in spite of knowing better, I continue to ask questions that have no immediate answers. I want to be thankful for my daughter's recovery as well as her life. Call me selfish, that's okay. Maybe I am. As I watch Allie struggle with her faith I feel mine, maybe out of necessity, grow stronger. We are in this together, but she is doing by far the hardest work. I know the time will come when she can see how much she has taught us all. I hope I am her best student. I have so much to learn. I wish her job was easier.

Gotta go. It's time to make my daughter's breakfast. Thanks for listening. We love you. Please continue to pray for my daughter's recovery and if you could throw in a bit about her having some relief from her pain, we'd sure appreciate it. Your friendship, support and love is what helps us keep some balance. Maybe today my daughter will find something to smile about.

Thank you Thank you Thank you!

Love, Peace & Happiness
Deborah

ps: a special thank you to Phil for helping Ron get the sink installed in Al's shower
and to Sharon -- the tree is adorable in Allie's room and when I put the decorations on, it put a smile on her face:)

First Party

2009-11-11T09:30:00.000-08:00

Dear Family & Friends,

Life goes on and continues to be full of milestones, tears, bravery, pain, feelings of hopelessness, talk of giving up, smiles and determination. Sometimes all in one day!

Still most days pass much the same as they do for most of us -- quickly and without a lot to remark on. Allie still hates and fears the daily process of transferring her from her bed to her chair and back. We use a sling that we slip under her while we roll her from side to side, and then hoist her up with a hydraulic lift and hopefully place her neatly in her chair so that we don't have to adjust her much once she's in it. Transfers almost always go smoothly and when I ask her why she still worries so much, she reminds me that she broke her neck and is paralyzed. I suppose that says it all.

The transfer still takes two of us mostly because she needs her head and tubes held. Once her muscles in her neck are strong, I'm confident I will be able to move her around by myself. Several of her friends are quite proficient at helping me, Uncle Doug comes on Tuesdays, Auntie Vicky every other Thursday, so even if Ron and Adam are both out, it's a rare day someone is not here to help.

Sadness still greets Allie most mornings when I wake her. The worst though is a night or very early morning when she experiences an anxiety attack which is usually brought on when she feels she cannot breathe. Sometimes it's related to vent or secretion issues, but often it is something I suspect only someone in her situation would understand. Lately, she has had severe drops in her blood pressure when she sits up in bed to eat, which makes for an even tougher way to begin the day as she needs to be lowered and raised several times to get through her meal.

Seven months has passed since Allie's injury. She is very discouraged that she sees/feels no improvement in her condition. Those of us that saw her those first few months beg to differ. Of course she remembers little of that time and only knows that she still can't breathe, still can't move or feel anything other than pain.

Although, I remind her constantly of the improved health and amazing healing that I see, it is not what she is looking for. I remind her and myself how well she is eating, how well surgery scars are vanishing, how bright and clear her eyes are. Those are the signs that give me hope of her amazing potential for recovery.

Still, I am happy to say though, that Allie is getting out more (and me too). We all celebrated the boys (Keenan & Adam's) 18th birthday over sushi and had a great time. We've been out to Don Q's for mexican with Uncle Doug and to Mama Mia's again with Samantha and friends to celebrate her b-day. We've had friends over for bar-b-que and last night Mary and John came over and joined us for Mary's homemade pizza (incredibly yummy). But, recently we had one night that was especialy remarkable. Since Samantha turned 21 a big party was planned to celebrate. The party was at the girls house in Santa Cruz (Michelle, Arezu (sorry sweetie I know I am mispelling your name) & Sam's) and Allie asked me if I thought there was any way she could attend. Samantha is a very special friend and Allie wanted to show her how much she loves her by showing up at her party as a surprise. She knew that Samantha would understand what a big deal this was for Allie.

Ron went to the house to scope it out for ramps, built her two ramps and placed them at the house the day of the party. Thanks Dad! Luckily, for me Kerry dropped by (thanks Kerry) about an hour before Al and I left for the party and we roped her into going with us. When we drove up friends came out and offered their help. Everybody was so happy to see her. This is a pretty big deal since it is the first house, since the accident, that Allie has been in other than ours. Visiting friends is one of the things that Allie misses most. As you might imagine, being in a chair really limits your access to places.

Kerry and I hid out in one of the bedrooms with our glasses of wine while Allie "partied" with her friends. Friends came in to give me hugs and tell me how happy they were when they drove up and saw the ramps, realizing that Allie was either already there or on her way. She had a great time. Someone came in every now and then to let me know she was doing fine and I must confess, I peeked out a few times. It was awesome and I was so relieved to see her smiling and visiting with a house full of friends, some of which she hadn't seen in a long while. I must say it again -- we are blessed with an exceptional group of young people.

Expecting to be there only a couple of hours time flew by and we were shocked to see it was quite late by the time we left. Needless to say Allie and I (out of practice on the late night social scene) were both pretty happy to lay low the next day.

Trips over the hill for Dr's appt.'s are very draining emotionally and physically uncomfortable for Allie. The day after an appointment is one where she experiences an extra amount of neck and back pain. I'm hoping to be able to hook her up with some therapy soon to help strengthen her neck as it does not seem to be improving. Monday she went for a CT scan. Maybe we will hear something new when it has been reviewed.

In the meantime I am thankful for the days that Allie doesn't say "mom I can't do this". I know what my girl is made of. I saw the smile on her face as she did her best to talk with her friends at the party and show them she's still the same Allie inside. I hear her say thank you and smile when someone shows her special consideration when we are dining out. I watch her tough it out through some difficult procedure. I hear her tell me that she's pleased to see that her injury has brought our extended family together.

Allie will turn twenty next month. She will be leaving her teens more dependent than she entered them, with even bigger more profound questions, along with some answers and a view of and understanding of life few 20 year olds ever have. I pray as she learns and conquers, the recovery will come. Until then we cherish visits from friends and family, venturing out, your fantastic meals (and too many great desserts :)).

We love and appreciate you all more than you will ever know. They say it takes a village to raise a child, I say it takes a valley to raise amazing ones.

Love, Peace & Happiness,
Deborah

Lobster, A Storm & Saying Goodbye To A Friend

2009-10-19T09:04:00.000-07:00

Dear Family & Friends Far and Near,

The last couple of weeks have been full of new challenges and experiences for Allie. I'll begin with the Lobster Feed which was incredibly fun. It started out a bit rocky when I drove Allie's chair over a makeshift plywood ramp that had been put over the curb into the park area where the event was taking place. Big mistake! I don't know much about ramps (but am learning quickly) but my guess is it was too short which made it too steep and then at the "top" of the curb onto the dirt there was no transition. It just kind of dropped off. Anyway scared the heck out of us both as her chair seemed to be tipping back much too far and to correct I kind of veered to the left which whipped her head a bit and hurt her neck. I made the best show I could of it not being a big deal and that she was never in any danger but my heart was pumping out of my chest. Yet another important lesson was learned. Allie took a quick couple of minutes to calm down and get past the pain and then let it go which was great. Needless to say, we found another way out when it was time to leave.

The food was wonderful and the company was even better...thank you again Kerry & Brianna. This is a very friendly and well run event and we hope we are fortunate enough to go again next year. For Allie it was a bit difficult as it got dark because it becomes impossible for people to read her lips. Since her chair can't get under a table she never gets very close and since she can't move her head, it's difficult for her to feel really part of what is going on even with a small group. For Al this is frustrating and makes her very sad. As many of you know, before the accident, Al was a very outgoing, talkative and physically active girl. Still she enjoyed herself and was really glad she went.

Tuesday of last week was the day Allie was scheduled for a trach change. That morning we woke to the first big storm. Allie woke up afraid to drive over the hill to Kaiser, sad about rain because it reminds her of her accident, (even though she still cannot remember even getting in the car that day) and really worried and nervous of what a power outage would mean to her ventilator working properly. It became clear pretty early that a trip over the hill was too risky. Fortunately, with $$ from the fundraiser (thank you all) we were able to purchase a very good generator. I ran through it again with Allie that when the power went out the internal battery in her ventilator would kick on (it has a short life but it goes on immediately)and in less than a minute the generator would kick on and run the whole house. Worse case scenario we have a back-up ventilator on her chair and two external batteries that are good for several hours. God fobid all else fails...we have the ambu bag. When the power went out the first time Allie opened her eyes with a look of terror. The generator was on in seconds. She slowly relaxed. The second time the power went out the generator went on and Allie smiled at me. Ahhh another hurdle overcome. I'm not dreading winter as much as I thought I would..

This month we said a heartbreaking goodbye to Tyra, one of my oldest and dearest friends. Tyra and I met when we were both very young new parents, raising our first babies, Sirena and Alonzo, born only two weeks apart. Since then we have seen each other through many major life changes -- divorce, births, deaths of parents, new husbands, etc. Actually, Tyra is responsible for my meeting Ron. When she married for the second time to Ron's best childhood friend, Bernie. I was Tyra's maid of honor and Ron Bernie's best man. A few years later, Tyra stood by me as my maid of honor and Bernie next to Ron at our wedding.

Tyra's passing came quickly and at the age of 52 way too soon. As much as I wanted to go see her in those last couple of weeks (they live in Manteca), I didn't feel okay about leaving Allie for that long. And I guess, a part of me was in denial that my friend's end could possibly be so near. We spoke on the phone and I was able to tell her how much I loved her. It's not the same as holding a loved one's hand and telling her in person though.

Allie watched me through these days and apologized again and again that "because of her" I couldn't go see Tyra. Not her fault I told her. Tyra understood. Still it was difficult for me and Allie knew it. It was a teary and tough time for both of us. When Allie heard Ron and I talk about when and where Tyra's service was to be and which of us would go Allie got my attention and said she wanted us both to go and she would go with us. Ron was skeptical. So was I. The service was at 10:30 which meant getting Allie up way earlier than usual and then spending well over two hours in rush traffic. At least an hour or two there and two hours back. Allie said she would make it and was determined to give me an opportunity to say goodbye to my special friend.

Adam came along so we could take turns holding Allie's head over the bumps. The service was held in what Allie said was the most beautiful church she had ever seen. Luckily the reception was held in a room near the church and was wheelchair accessible so we were able to stay and talk with members of the family we hadn't seen in a while, as well as several old friends. Allie looked fabulous and her mood was uplifting. She appeared comfortable and most appeared comfortable with her. She was surprised and touched to find out that Richard, an old friend of Ron's, we hadn't seen in a long while, follows this blog. She was also touched and impressed when Tyra's young grandaughter, Olivia, who had stayed with us a few days this past new years, talked with Allie as if nothing had changed since she had last seen her.

To say though that the day went without a hitch would be a bit of a stretch. Before getting back on the road in the process of helping Allie with some of her care, we reclined her chair back. Unfortunately, when we attempted to put it back up it wouldn't. With no way to fix it, she rode back home in that position. Once home (she's been up for about 9 hours by this time which is a veryyy long time for her)we were concerned about getting her out of the van via the lift since she was fully stretched out. To add to the mess her batteries had run their course and her vent was constantly beeping. Ron did what he could to try and fix the chair, but it was a no-go. We considered carrying her out, but finally gave the lift a go. She fit okay and was soon safely out of the van, rolling and beeping back to her room. The next challenge was getting the sling under her while she was in the chair in this position. Through it all Allie never complained. She had decided that this day was important to me and that no matter what happened, she was going to weather it. Thank you Allie. Once again you demonstrate to me what an amazing young woman you are. We love you so much and promise (me and dad) that we'll get better at this.

Of course the day did take its toll. That night was pretty difficult for Allie. Terrible neck pain and strange dreams made for a restless night.

Some days are full of accomplishments, but on many I still find myself asking how can anyone live this way? Days pass full of sadness, limitations and constant fear that the worst could still happen. And then I answer that we can and will. Until the day that Allie's recovery is such that we no longer have to.

Thanks for listening. Thanks for being there. Thanks for caring. Thanks for your prayers, love, and support in all ways.

Love, Peace & Happiness,
Deborah

Gifts of October

2009-10-05T08:44:00.000-07:00

Dear Family & Friends,

First off a giant Thank You to Lacrosse & Football Coach's Curtis and Morris for organizing the fundraiser at Redwood Pizza. I hear the turnout was great.

Maybe it was being too afraid to attend the pizza event, maybe it was the encouraging messages she's been receiving on this blog, and maybe the not so subtle pressure I've been applying but, out of the blue the other day Allie said she wanted to go out to dinner and that she wanted to go to Mama Mia's. Wow. Who would have thought I'd be so excited at the thought of going out to dinner. Allie was actually voluntering to go out in public. To make it even easier I had received some cash (from a very generous anonymous person -THANK YOU-) so we didn't even have to feel guilty for indulging. When we got into town we were happy to see Keenan getting off the bus so he joined Ron, Adam, Allie and I for dinner. I hope Allie noticed that as we made our way to the restaurant every driver we passed had a smile for us, every face in the restaurant had a smile. I saw no stares and heard no comments. We ran into a couple of friends, which was great, and Allie lit up with things to say to all (in her very slight whisper of course). My daughter's incredibly beautiful smile continues to be the best and brightest part of any day, when I am blessed enough to see it. Allie was nervous and tried to put off suctioning as long as possible but the couple times it was necessary, Ron hit the alarm button asap to minimize the noise (goes off when you remove the breathing tube from the trach) and with the suction machine in its case and on the floor, the noise is minimal. The act is unusual but really need not be anymore distracting (maybe less so) than a person coughing or sneezing. All in all the evening was a great success.

This coming weekend is the lobster fest at Henry Cowell and Kerry has generously offered to treat us, if Allie will agree to go (BTW Kerry can't let you treat all of us you already do more than enough!). Brianna is coming from Chico to join us. Wish us luck on this our next outing as Allie learns to find comfort and take control of her world with its new challenges.

This month will be a very busy one for Allie. Tuesday she gets her Gtube removed (stomach feeding tube). I would have liked to have seen it removed before we left the hospital but it is typical to leave it in for a while (often a very long while or sometimes forever) in the event a person is unable to eat for any reason. Its removal marks for me a positive leap of faith. Also, this month she will have a trach change, x-rays of her neck, and an appointment with the neck & spine surgery doc. Unfortunately, we have seen little improvement at this point, in any strength or mobility in her neck muscles. She still requires someone to hold her head during transfers from bed to chair and back. She can't move her head to get comfortable on her pillow and is dependent on us to help her get it where she wants it to be. Also, being up in her chair (in spite of a custom head rest) she still has the "bobble head" thing going which is painful and extremely annoying to her. In spite of all, I have seen a wonderfully positive change in Allie lately. She has found her sense of humor again and will occasionally tease her dad and me and sometimes even make jokes about some of the harsher realities of our situation.

For the first time since the accident, this weekend, I found myself asking "why did this happen to Allie, why my baby girl?" -- please do not misunderstand, I would never wish this on anybody's child --. I was upset seeing her disappointment at a situation that didn't work out as she had hoped/planned (although she did her best to put up a good front). Like all moms, it's always difficult to watch a child in pain over being let down about something. Now when it happens, it is almost unbearable. Regardless, I was immediately ashamed of myself. The question is pointless, having no answer. Energy spent on it a waste of time and emotion. Bad things happen to good people. This I have always known.

Right now, Allie may not be able to breathe on her own, or move her arms and legs but her heart remains generous, sensitive, appreciative, vulnerable, and her brain remarkable. I love my little girl with everything I have (slightly less vulnerable a heart and not nearly as generous, certainly a far less remarkable brain). I love her more than ever no matter her physical limitations. As I am sure, anyone that really knows her would. I remain in awe at her ability to cope. Still, I pray multiple times a day for her recovery. And I ask you all, to please do the same. The ability to move her body didn't make her any more as special a person than she now is, but it allowed her a freedom to participate in the world in the way she longs to.

In the meantime I acknowledge October gifts: Two of my children's birthdays (Anjel & Adam), Allie's new sense of humor and her more frequent smiles, the absence of her feeding tube, and all of you!

And to Sharon -- such a great idea about the porch for Allie and you are so very kind and thoughtful. When you were here, you missed seeing the front of the house where we have a large beautiful covered porch that Allie can enjoy all year long.

Thank you thank you thank you.

Love, Peace & Happiness,
Deborah

On an incredibly sad note we just heard that our friend, Maydene Petty, lost her battle with cancer this week. We mourn her loss and our hearts go out to her two daughters, son and husband. She will be terribly missed. We are so very sorry.

Are we ready?

2009-09-18T13:03:00.001-07:00

Hi Everyone,

2008 was a difficult year for my family (well mostly for Ron and me). I broke my back. Ron lost Jim, a best friend, and his 18 year old cat, Katie. I lost my brother David, my business partnership fell apart when I found out that a person I trusted, was a creep. Still we were thankful for so many things. We lived in a wonderful place. I had a teriffic husband that loved me and four fantastic kids. We had an abundance of good friends and a big loving family. 2009 was around the corner and was going to be a better year...a much better year, I kept telling myself and was pretty confident about it. It started out pretty good. I got a great new job, Ron and I were doing fine, and our kids were all healthy and happy. I guess the reason I am bringing this all up is that I've been thinking a lot lately of how much your perspective, the things you hope for, are thankful for, make you angry, laugh, smile and cry, things you think you can't handle or are looking forward to, are forever changing.

Instead of being a great year, in 2009 Allie sustained through no fault of hers, a life altering injury. Please don't get me wrong, I give thanks everyday that her life was spared. But, the "life" she was spared does not offer a quality of life even close to what she deserves. At 19 most are experiencing their first taste of independence. They are away at college or if at home as was true in Allie's case, are going to a local college, working, making their own schedule, saving (hopefully) and spending their own money, meeting new friends, learning what responsiblity really means, and for the most part coming and going as they choose. At 19, Al is now as helpless as an infant and even more fragile. She is completely dependent on the mother (and Dad of course) she was slowly and successfully working to prove she could be independent of.

However, I do believe that things happen for a reason. I'm not yet sure if it will be that Allie is an inspiration because of the miraculous recovery she has or the successful recovery from a new stem cell treatment. Or maybe her role will be one of teacher or counselor with a knowledge, experience and understanding of life and people most never have. But, as I have believed from the day she was born, Allie is special and is destined to do remarkable things. Right now the challenge is to keep her healthy and safe physically and to offer her opportunities to begin getting out in the world, so she can begin again to be healthy mentally as well. The getting out part is proving to be a bit difficult. Her sadness and fear of people staring, and judging her is overwhelming right now. We did manage to get her out for sushi to celebrate Jordan's birthday (no easy feat). Jordan being the sensitive and awesome friend she is, planned a luncheon for both mothers and daughters (knowing my presence is a given). Although Allie was extremely apprehensive about going, she ended up having a good time and was glad she went. Her one biggest worry about being out in public is the dang vent. She worries that it makes too much noise. She worries about how the tube coming out of her neck looks. She worries that people will be uncomfortable, be bothered by the sound and stare when she needs suctioning. For those of you that don't know about the suctioning, I'll try my best to explain. Allie hasn't the ability to cough or do anything to bring up or clear secretions the way we do. So when secretions gather in her lungs and block her ability to accept or get enough of the air that is being pumped into her by her vent, she needs help removing them. We do this with a small portable pump machine that creates suction. A small thin suction tube/catheter is attached. We remove her breathing tube from her trach and insert the thin tube down into her trach and occlude to create suction pulling the tube out slowly and hopefully the secretions with it. This is uncomfortable for Allie in more ways than one. First off, whenever her breathing tube is removed there is always some anxiety. Then depending on the thickness of the secretions, it can feel pretty lousy. If you go too deep (past the end of her trach) which is necessary sometimes, it can hurt. Personally, I think there is a sense of emotional "invasion" that goes along with the process as well. And again, she is completely dependent on someone being there or coming very quickly when the need for suction arises. This procedure isn't something we see every day. Allie requires suctioning throughout the day and night but it is a sure thing that when she eats, she will need it at least once or twice. Hence her concern about eating out in public as if being in a wheelchair that never fits quite right under a table, having to have someone asssit you with moving, eating and drinking, and not having a voice isn't enough! Allie's current condition makes her a part of our diverse population that many of us have had little or no exposure to. What is unfamiliar to us is likely to be scary. The support we've received tells me that this town really cares and is ready to help her feel comfortable, welcome and accepted. I hope I'm right.

The good news continues to be that Al is doing so much better physically since she's been home. We have had a couple issues and her blood pressure still requires close monitoring as it has a tendency to get pretty low sometimes (50's and 60's). Her sat (oxygen saturation) tends to be at a nice high number though, and her temp has been mostly steady. She did spike a fever the other night but, fortunately it did not last long. She's eating well and sleeping. Sometimes too much sleep as it is a way to postpone the day and thus avoid the realities of her situation. The mornings continue to be heartwrenching.

Thursday our new van was delivered and it is beautiful! Yesterday, Rachel, Allie's roomate when she was at Sonoma State and her boyfriend came for a visit. We all (Allie, Rachel, Cal, Rosalie, Ron and me) loaded up and took a maiden voyage to the wharf to pick up crab sandwiches. Allie chose not to get out of the van but, we were pleased to get her out of the house and up on the new lift for the first time. She was really happy to see Rachel and I was happy to spend some time with Rosalie.

Last night we got a call that Adam was at the Fair goofing around with a friend twisted an ankle and fell. They were on the way to Dominican because he hurt pretty bad. Now Adam is no stranger to broken bones and when I heard the pain in his voice, I knew it was not going to be good news. Ron met them in the emergency and sure enough his leg is badly broken. They got home around 1:30 am. We really should have built a one-story house.

I was up most of the night with Allie suctioning, moving her head, re-positioning her, putting the comforter on and taking it off, helping her drink water, etc. She was cranky (understatement). I lost my patience. She deserves someone that has never-ending patience and compassion. Instead she has me. Maybe, there are lessons for both of us here that will make us better people. Allie will benefit from learning more tolerance of hers and others shortcomings. I need a lot more patience and pray for it everyday. We are both stubborn. Sometimes that can be a good thing sometimes it is a stumbling block.

Things and people I am especially grateful for today:

Kathi, and the time she gives every morning so that Allie has range of motion

The amazing meals you are all providing us with (I think there may be a rally for allie cookbook in the future)

The Daltons for delivering the meals to us

Kerry, her love and emotional support for Allie, new friendship to me, and awesome brownies

Ray and his friend Todd for the beautiful planter box and flowers outside of Allie's bedroom window and Linda for the gorgeous crystal

Sharon for the yummy lemon soap, rainbow maker and other gifts for Allie (not to mention the remarkable meals)

My brother Douglas and sisters visits

Mine and Allie's friends that don't find our situation too akward or sad to keep them from visiting

Allie's bravery going out to lunch at Rumblefish (and the amazing group of women that we shared the time with), her getting up the lift and going for a ride in the new van, and occasional smile from her (for friends not me or Dad of course :))

Your continued support in the way of donations, prayers, meals, visits and love sent via comments on this blog

People I can talk to that really understand like Teena, Cheri & Katie

My awesome husband

My kids

An occasional rest sitting out in the sun

Any time spent with my horse

A renewed faith in the overall good of people

Please pray for Allie's recovery. More than anything she just wants to be happy again. Thank you, we love you.

Love, Peace & Happiness,
Deborah

Is there truly any subsitute for a hug?

2009-08-27T20:05:00.000-07:00

Dear Family & Friends,

First I must apologize for taking so long to get caught up...our internet has been down. Thanks to my sister, Victoria who came to visit today, it is up and running again. Who knew she was so savvy at such things!!

So should I start out by talking about how well Allie is doing medically (for the most part)? She looks great. She's eating two to three meals a day and with the exception of one very frightening episode a few days ago, has been relatively stable with regard to her blood pressure. During a transfer from bed to chair Ron, Adam and I watched her face go pale and for a very brief but scary time she took on that blank stare which I know all to well is her passing out. Thank God it was brief and after "bagging" her for some extra big breaths and getting her back to bed for a few minutes we were able to help her into her chair for an incident free afternoon.

Friends continue to come by and spend time with her which is all she lives for right now. How blessed we are to have such wonderful people surrounding us. Other than a couple doctor's appts. and one fun trip to the pre-school Allie has not left the house. Hopefully, we will venture out soon to have dinner or see a movie. We still have the rental van which is a terrible financial drain but Allie would feel even more isolated and unsafe without it. We've purchased a van and hope to have it here the first week of September.

Maybe I should only talk about the good stuff but that would be very dishonest and misleading. Maybe that is what people want to hear, I'm not sure but you've all been way to loving and supportive, I think for that.

The truth is that Allie's sadness, feelings of loss and grief is so deep that there are times I fear we will start crying and never stop. By the time we are my age, we've all experienced loss of someone we love. This is so very different. When you lose someone you love you never forget them or the pain you feel when they first go away. Time however does ease that pain. I worry that this pain will not ever go away. Every morning Allie wakes up to a body that will not move no matter how hard she tries to make it. She cries. We talk about the future. I try and assure her that it will get better. It will not always be like this. Her path is a different one she envisioned before the accident but doesn't necessarily have to be a bad one.

Yesterday, Allie cried for the burden she thinks she has created for the family. She worries we will lose our house. She worries her friends will forget her and stop coming around. She worries I will become too old to care for her. She worries she will not recover. She worries that her friends are upset by her loss and that she cannot even give them a hug to make them feel better. Today she had to say goodbye to Haley who is off to San Diego. This is a most difficult time as friends return to school.

She wants to be able to comfort, say goodbye and hello to her friends with a hug her body will not enable her to give. She knows the power of a hug. My daughter is worried she can't comfort others! I try and tell her that a hug can be given with words and the look in a persons eyes. I might be lying to her. I'm not sure there is a subsitute for a hug. I lay down with her, wrap my arms around her and get as close as I can. Cheek to cheek I promise her it will get better. It will. She will have miraculous recovery. We will settle for nothing less.

Thank you for your prayers, unbelievable financial donations, incredible meals and friendships.

Prayers to Jerry, Ian and Connor for continued recovery.

We love you all.

Love, Peace & Happiness,
Deborah

Home Sweet Home

2009-08-10T19:08:00.000-07:00

Hi Everyone,

On August 6, one day shy of a four month stay at SC Valley Medical, Allie came home at last.

Friends and family came to help pack up the stuff we had gathered over the months. Ron, Jordan, Samantha, Allie and me loaded up in the rental van and headed for home. The girls helped keep Allie's head steady over the bumps and it was mostly a good ride for her.

As we came down our driveway, the scene was one that would bring tears to anyone's eyes. It certainly did ours. Friends of Allie lined the driveway and yard with welcoming signs and the yard was full of balloons. Nervous, and a bit overwhelmed she smiled as we drove her chair onto the van lift and lowered her onto the ground (leaving the hospital we had help so this was our first time alone and I'm sure Allie was less than comfortable). But she was thrilled to see her friends and was touched beyond words. The house was full of great food and the visit was short but very sweet.

Allie was thrilled with her room and was happy to sleep in her new bed. The first night the girls had a sleep over and although they were up late once to sleep Allie mostly slept through the night. Amazing! There truly is no place like home.

As for me, walking into my home was a somewhat surreal experience. Quickly starting to feel right again and am so very grateful to be here!

I have a lot more to talk about. The last few days have been mostly good. It will have to wait. Gotta go.

We love you all so much and I am thankful everyday for the support of our family, friends and community. This journey is not one I pretend to have a handle on. It is not one that any of us would choose. It is one of the last I would have chosen for my daughter. We will try our best to take it one day at a time. I know we could not have gotten this far without all of you. Thank you.

Love, Peace & Happiness,
Deborah

My Angel loses her halo!!!

2009-07-31T18:26:00.000-07:00

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

Quick Update

2009-07-21T15:18:00.000-07:00

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

Coming Home!!!!!!!!!!

2009-07-12T21:33:00.000-07:00

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

Back Upstairs Again

2009-06-28T09:25:00.000-07:00

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 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 couldnt' 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

Forever touched by the Rally for Allie

2009-06-12T09:14:00.000-07:00

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 are making 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! Yeaaaa. 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 me 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

Fear, Progress, Smiles & Tears

2009-06-02T15:48:00.000-07:00

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. I guess that stands for ambulatory but am not sure. Most of you probably know what it is or have seen it on TV. I removed her tubing from the vent 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 very non-gentle). 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 and she could 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

Swallowing & Hallucinations

2009-05-22T11:23:00.000-07:00

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 well. 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 kept me on the payroll in spite of the fact that I have been gone almost as long as I was there. 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

Difficult days

2009-05-13T12:37:00.000-07:00

Hi Everyone,

Your messages are so appreciated. It is difficult to read through them because I cry which is something I do not allow myself much of. It is important for me to keep my spirits up as much as possible because I know Allie looks to me for the positive. When I read the messages, prayers and well wishes I am reminded that Ron and I are not the only people that have been touched by Allie's strength, spirit and most importantly her loving heart.

First the good stuff -- Allie has made it outside in her wheelchair three times. The last time she was pretty relaxed (although the pain in her back when she sits is very distracting) she enjoyed some shade and some sunshine for almost an hour. Unfortunately by the time we got her back to bed her temp was 102.4. Allie's injury makes it difficult for her body to regulate temperature and so even a mildly warm or cold day can be a problem.

The last couple of days have been especially difficult for Allie. She has had some terrible stomach pain and we haven't been able to figure out why. The pain kept her from trying to get in the chair yesterday and kept her up all night. She is as down as I have seen her.

She continues to communicate without the advantage of speaking. She is doing well in her swallow therapy which still consists of swallowing very small ice chips once a day.

The highlight of Allie's days are when her friends come to visit. Sometimes she isn't up for it and feels bad that they've "come so far" and she isn't up for the company. I assure her that she is much loved and that they don't mind.

Thank you for your continued support through prayers, visits, cards, well wishes, meals, etc. We are so blessed to live in a community like ours. We are extremely touched to hear about the fund raiser that Stacy of Circle of Friends and others are coordinating.

We are forever grateful!!!!!!!

Allie will recover
Jerry will recover
The valley will see our kids smiling and dancing once again.

Love, Peace & Happiness,
Deborah

Allie gets a look in the mirror

2009-05-07T14:07:00.000-07:00

Dear Friends and Family,

A few nights ago very late Allie asked me if she could see herself in a mirror. This was an event I knew was coming but lived in fear of. For those of you that have not seen Allie or someone else in a halo, I will try and describe it to you. There is a round metal "halo" that goes around her head about an inch out. It is secured to her head by four pieces of hardware that are screwed into her skull. Two are in her forehead and two above her ears. There are four long round bars that hold the "halo" and are attached to a vest that goes around the tops of her shoulders and ends below her ribs. Allie looked into the mirror and asked if those screws were actually in her head. We told her they were. Her only response was "Oh my God". Then she asked to see her trach with and without the tube in it. Then she informed me that the circles under her eyes weren't as bad as I had been telling her they were (thought it might get her to sleep more). She gave us kind of a "oh well" expression and that was the end of it. I continue to be in awe of her ability to cope.

Allie's day yesterday was a series of frightening experiences. It would take too long to go into them all but she lost the air from her vent three times. Beyond scary!! As good as it is here, I could go on and on about the mistakes made, personnel issues, etc. but I won't.

Allie continues to be in a lot of pain. Some from her injured neck and a lot from what they refer to as nerve pain which manifests in her limbs and back in spite of the fact she can't move or feel those areas of her body.

It is impossible for her to get comfortable. She rarely sleeps more than a couple hours at a time.

On the positive side she swallowed a couple of ice chips today and she is scheduled to go outside for the first time today (was suppose to go yesterday but portable vent wasn't charged).

Thank you all for your prayers, love, concern, help, visits, etc.

Please continue to pray for Allie and Jerry's recovery.

Allie has asked me to share my faith with her everyday that she will get better. I believe she will.

Love,
Deborah

Dear Family & Friends

2009-05-04T20:12:00.000-07:00

On April 7 Allie was in a car accident that changed our lives forever. It was a rainy day and an unfortunate accident in which no one was to blame. Allie was airlifted to Santa Clara Valley Medical. When we arrived (her Dad, brother Adam, Joey and I) shortly after she did, we were taken into a private room and given devastating news. Allie was unconscious. She had suffered a broken neck and was hemmoraging from a torn artery in her neck (one of the two brain stem arteries). They were not optimistic about her survival. We refused to believe it. Losing Allie was not an option! When we saw her for the first time she had been intubated, her face and neck were swollen from the internal bleeding. When we walked in and I said her name, she opened her eyes and looked at me.

Allie (and her doctor's) first challenge was the surgery to stop the bleeding in her neck. The doctor that did the procedure had only done one similar to this before and the damage to the artery was not nearly as bad as Allie's. The surgery was over 3 hours. Family and friends began praying. The artery was irreparable but he was able to bypass it by inserting tiny coils one by one to stop the bleeding. Staff here called the success of the surgery nothing less than heroic. The next surgery was to try and stabalize the broken bones in her neck. It turned out that she had broken the first three -- C1, C2 & C3. We were informed that it was the worst break that her surgeon had ever seen. Another agonizing 3-1/2 hours. Allie did better than expected. She has a halo vest to give her the best chance of mending.

Most of you know about the ups and downs Allie has had since she arrived here. Tomorrow will mark 4 weeks. She started in TICU was moved to RTC and back to SICU due to lung complications. Doctor's remained very guarded but knowing how many were praying for Allie we knew she would improve and surprise all. She is back in RTC (rehab trauma center). Her lungs are doing great. Today she was taken off antibiotics. She has physical therapy everyday, (just stretches of her legs and arms at this point), spends over an hour sitting up in a wheelchair and is getting therapy that will allow her to speak and swallow.

Allie remains on a ventilator. She cannot feel or move from her chin down. She is in a lot of pain and it seems impossible to make her comfortable. She communicates with blinks, and most of us have become pretty good at reading lips. She has her angry and sad times. But still finds it in herself to give smiles and say thank you. She does her swallow exercises with great determination. She asks her doctors a lot of questions and makes decisions about her care. She is very good at directing those around her and letting people know what she needs.

I will never be able to express my gratitude to our family and friends for the prayers and strength that have been directed to our Allie. I have no doubt it is what has made her recovery so amazing thus far.

Allie is so blessed to have such a wonderful group of friends. Thank you for your visits, prayers, pictures, dvds, cards, text messages, etc.

Thank you to all our friends who are praying, feeding us, taking care of our pets, etc.

Thank you to my sisters and brother who have showed up faithfully to give me an opportunity to sleep, eat or bathe.

Thank you to Katie MacCallister for creating this blog for us.

Ron and I are overwhelmed with the support and forever grateful!!!

Please continue to pray for Allie and Jerry. We believe that they will be in that small percentage that overcome their current disabilities. Right now we are praying that Allie will be able to breathe on her own.

Thank you, Thank you, Thank you.

Love, Peace & Happiness,
Deborah