An Ambulance, a Helicopter and a Movie

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 breaths and she was calm and appeared very brave. We arrived at Dominican 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 familiar 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.  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 to make that happen.  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 allow me to go, 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 tube 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 trachea 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 artificial 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 resilence 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

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 severe 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 yourself 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

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

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

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?

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?

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 these 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 I 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 college in 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

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 pretty nervous). 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!!!

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

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!!!!!!!!!!

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

Hi Everyone,

First an update on the good news...the construction at the house is progressing well. And by the way...........I have no idea how we would be making these changes if it weren't for the fundraiser! Ron with the help of family and friends has Allie's new room and bathroom downstairs framed in. They are waiting on me to get some tile samples to run by Allie for approval. I planned to go out Friday to Dal Tile (they have generously offered to donate everything she needs) but Allie had a visitor and I ended up staying for the visit and never made it to the shop.

Allie's visitor, Ian is one year post injury. He is ventilator dependent and came by to meet Allie. It was an emotional visit for all. Turns out we have actually met Ian as he was a friend of our daughter Anjel. He use to live in S.C. but moved to Washington after his accident and was out here for a wedding. Although he continues to struggle physically and emotionally with his injury on a daily basis, we were thrilled to see that he is able to breathe on his own for up to an hour at a time.

Last Saturday Allie and I were out on the patio reading. It was a beautiful day and Allie was getting a break from her pretty busy schedule. Allie's trach had been changed the day before (never make major changes in a hospital on a Friday) to a different kind (I'll spare the details of why). Allie did not like the feel of the trach tube and since the ventilator settings hadn't been adjusted the darn thing was constantly alarming which is a very loud and piercing sound. Also, disconcerting since the alarm is meant to let you know there is something wrong. However, everyone kept assuring us that things were fine.

Allie's Aunt Pam came by for a visit and then Dad showed up. The alarm kept going off so we decided we'd better get back inside. While Allie's nurse helped us to bring up any secretions that Allie might be having, all of a sudden Allie turned grey, and passed out. Once again I stared into my baby girl's unnaturally colored face with her eyes fixed open, frozen, in a blank stare. While we bagged her she was quickly moved to her bed and her head was lowered. Code Blue was called. Something was different about the episode this time. I didn't think it was a mucous plug blocking her airways. The room filled with people. This time when Allie's color finally came back, she didn't. Allie was unresponsive. She was given a shot to minimize damage in the event she was having a seizure (difficult to see in a paralyzed person in a halo). Her pulse was barely there. Her dad and I called her name and tried to get her to acknowledge us. More than ten minutes or so passed and we thought (hoped and prayed) she was trying to respond but maybe she was just too tired or in shock and couldn't. Her eyes and mouth were moving a little. Allie couldn't talk or focus and really didn't look at us. Her vest was opened and she was given an EKG. We went with her while she had a CT Scan of her neck and head. By this time she was asleep from the med. she had been given for the possible seizure, so we knew nothing of her condition. Every thing had been going so good. But once again the state of our world was altered in a second.

Back up in her room in the Trauma Center, Ron and I waited for her to wake up and talk to us. I got a strong feeling from those around us that they were prepared for the worst. Her pupil response was at best sluggish in one eye and not responding in the other. Sometime in the early am Allie woke up and asked where was she and why wasn't she in her regular room. We answered her questions and she went back to sleep. We were elated. She was okay. She woke again and asked the same thing. That happened a few times and we began to worry again. Late that morning slowly but surely Allie began to be herself again. She had an EEG later and the test was negative for seizure or any negative brain wave activity. There are a couple of possibilites of what caused Allie's episode but we will never know for certain. Such are the complexities of a spinal cord injury.

Allie has been struggling with some blood pressure issues and a couple episodes of something called Autonomic Dysreflexia which is life threatening and can be triggered by something as simple as an overfilled bladder or an irritant in her shoe. She passed out again on Tuesday for a minute, so we are still up in RTC. Hopefully we will be back downstairs by Tuesday or so.

When Allie is not in terrible pain or anxious about being short of breath or having fluctuating blood pressure her mood is amazingly good. She does have what her Dad and I refer to as her "bewitching hour" when it seems for a couple of hours in the early evening she is anxious, inconsolable and it is impossible to get her comfortable. In spite of this I've seen a huge change come over Allie. She is participating more and more in her care. She is learning when her pressure is low and when it is high. She knows when to tell us to check her pressure or to coughalate or bag her because she is not getting enough air. She is getting along better with her nurses and other caregivers although Allie being Allie, the helplessness and lack of control I think is even more difficult for her than it might be for most. Still while her strong natural ability/need for directing can be at times frustrating for us all, this natural trait and skill will ultimately be to her advantage. She listens to her Doctors (most of the time) and asks many questions. She is getting an education in her body, people and life that no college could ever offer.

Allie misses her friends and misses her old life terribly. She continues to say she is not depressed but she is sad and sometimes questions the value in living this way. We tell her it will get better. Sometimes she'll just roll her eyes at me and say yea that's what you told me yesterday and then look what happened. I have no argument for that. But when we are lucky enough to see her smile it is as bright as it has ever been.

In spite of the ups and downs I know Allie is getting better and I look forward to getting back to our home in the Valley. The one common thing I hear from other families like Jerry, Connor and Ian's is that it gets better when you are home. I like to think that Allie is having her scares now, to get them all out of the way.

However, I am not totally dense and realize more each day how complicated an injury Allie has.

For the first time in a very long time I am now a stay-at-home mom. Well, I will be when I get home anyway. My boss has left the door open for me and even offered opportunites for me to stay in contact with my accounts and work from home. Right now my place is with my daughter with no other distractions. I feel at peace with that decision. Fortunately, Ron has work for the next month or so. While our lives may have forever changed, with everyone's help our family can do this and will. Allie will continuously recover and meantime we will all find an inner peace of a new kind, in our new life.

From 3:00 am to 4:30 am Allie was in distress over her feeling of not getting enough breath. I continue to ask that she be given back the gift of breathing on her own asap.

Thank you for listening and for all the love and support. Through this thanks to you all, there has never been a second where Ron and I have felt totally alone.


Love, Peace & Happiness,
Deborah

Forever touched by the Rally for Allie

Dear Friends,

What words can I possibly put here to show the feelings in my heart? For such an outpouring of love and support I think only a poet could respond with anything close to expressing how my family and I feel.

Ron, Adam and Anjel were totally blown away by the hugs, kisses, and well wishes of the crowd. The rest of my family was completely in awe of our community and the good feelings being generated in that skate rink. Unbelievable turn-out to say the least.

I have given much thought to different ways to offically thank first off the organizers who put in an incredible amount of hours, creativity and love. Unfortunately, I have come up empty. Stacey, Samantha, Crystal, Laureen, Kim, Cheri and Deb. All I can say is YOU ROCK. The event from what everyone has told me was expertly executed. Having been an events manager in a former life, I know what it takes. You all did this while working other jobs, managing families, etc. THANK YOU. You are an amazing group of compassionate powerful women. I wish for you only the greatest gifts life has to offer! I look forward to a time where we can get together and talk about Allie's inspiring recovery and what a part you played in it.

Thank you to all the other people that helped in any way including those at the door, selling tickets, collecting donations, putting up posters, etc.

Thank you to all who participated in the event, bought raffle tickets and bid on the incredible donated items.

Thank you to all who donated items making this event such a huge $$ success. Unbelievable!!!!!!!

A special giant thank you again to Stacey for starting the process. What an angel Allie found when she went to work for you!

Thank you always to Katie MacCallister for all her support in making the online communication possible and for being a source of information and inspiration.

I also want to give a huge thank you to Robert Ludlow for his guidance, insight, legal advice and assistance throughout this process. Another angel my family has been blessed with.

Thank you to all of Allie's friends who continue to visit and assure her by their presence and conversation that she is the same person in their eyes and that she still has a place in their lives. What an incredible group of young adults we have in the valley. We are a lucky group of parents.

Thank you to all my friends that continue to care for my pets, provide my family with meals, prayers and visits.

Thank you to my sisters for all their love, support, visits, and shopping trips. Thank you to my sister and brother in law for the use of their motor home which has been invaluable to me.

Thank you to my brother Doug for his faithful night visits that allow Ron and I some time for dinner together once or twice a week, but mostly for the soothing effect he has on Allie when he is here.

The adjustments that Allie and the rest of my family continue to make are life altering to say the least. You all are making them so much more doable (is that a word?).

So, I could go on and on thanking the people that are helping, but I'd better get to how Al is doing or the thank you's could go on forever.

We moved down to rehab yesterday! Yaaaaay. Now the work begins. The schedule will be much more agressive and demanding down here. Allie will be expected to be up and ready to start the day early. She will attend more therapy sessions and also be expected to participate in some peer group and education classes.

Allie has made some huge accomplishments in the last few days. Thursday we took her out to the parking lot and her Occupational Therapist, Kathi showed her the hospital van. She then asked if she wanted to try and go up on the lift. Allie was pretty scared but said she wanted to try. Before we knew it Allie was loaded in and she Brianna and I along with Kathi were taking a ride around the parking lot. If this doesn't sound like much you've never seen someone go up on a ramp in a wheelchair load in, get the chair strapped to the floor and go over speed bumps for the first time!! I'm not sure who was more nervous Al or me. The look on Allie's face during the ride was akin to the fear and determined smile that you see on someone's face during a roller coaster ride.

Yesterday Allie, Brianna, and her therapist Mira and I loaded up again and went to Jamba Juice. The smile on Al's face when she took the first sip was priceless. She drank almost a third of it.

Allie is slowly getting use to the valve that will allow her to talk, eat and drink. She will be expected to use it for longer periods of time starting on Monday. She will get to go to the gym (which she is looking forward to). Her new doctor told her yesterday that she will love him and hate him. It's his job to push her forward. He is extremely knowledgeable with injuries such as hers, and seems like a personable and straight forward guy.

She continues to have pain and some stomache issues. I think her body is negatively responding to all the meds and way in which she is being fed. I'm hoping with some new eyes reviewing her condition, things will improve soon.

Allie's road is a long and bumpy one. But a road, I believe toward recovery. She is strong, and otherwise healthy. She has an unbelieveable support group in all of you. She has the intelligence and determination (not to mention the fact she is a bit on the particular side) to see her through this.

Construction is under way at the house. Allie will have a new bedroom and bath downstairs. We are looking forward to the day we get to go home. It will be a bit scary, I'm sure, but we'll be as prepared as we can be.

I pray daily for Allie and Jerry's full recovery. My hope is that Allie's first sign of recovery will be her ability to breathe on her own. She lives in fear every second. My heart breaks that she must endure such a challenge.

Peace, Love & Happiness,

Deborah

Fear, Progress, Smiles & Tears

Dear Family & Friends,

Time passes in a hospital like it does in no other place. Some minutes pass like hours like when you are waiting for your loved one to get out of a surgery or undergo a treatment or test they find painful. Other times whole days pass by without your really noticing.

Things were going along pretty well (relatively speaking of course). I guess you could say we were experiencing a false sense of comfort. Allie is sleeping at night. She is getting much better with the bed to chair and back transfers. Pain meds have been adjusted. She was doing well with her speech and swallow therapies.

On Tuesday we had enjoyed some fresh air on the patio. We were back in her room and she was still up in the chair. She had been transferred over from the portable vent to the one in her room. All of a sudden she said she wasn't getting enough air. She told me she was going to pass out and her color changed. I looked at the dial and could see that the needle wasn't moving as far as it should have been indicating there was a leak some where. Allie began passing out. I grabbed for the ambu bag. Most of you probably know what that it is or have seen one on TV. I removed the tubing from her trach tube and began pumping air into her with the bag. Her eyes were blinking rapidly and she was not able to respond. Her nurse and I got her out of the chair and onto the bed (quickest transfer ever and not as graceful as usual). I continued to bag her but began to feel some resistance indicating a blockage of some sort. The room filled with people. My daughter lay on the bed. Her face was completely white. Her eyes were fixed open. It was what is referred to as a code blue situation. She was non-responsive. For a few brief seconds my never-ending faith that she would pull through all this, faltered. To look at her you would have been sure that she was already gone. We continued to call her name and pump air into her lungs. Time passed. It was taking too long. This could not be happening!

All of a sudden the color began to come into her face. She woke up. She asked what happened and told us she couldn't see. I could not believe that life was going to throw blindness her way now on top of everything else. Weren't things bad enough. Another five minutes or so passed and she was able to see.

So much for the false sense of comfort. Allie's tie to life is about as fragile as it can be. In spite of that she is meant to be here.

That was Tuesday. Today is Monday. Yesterday she practiced driving her wheel chair with the sip and puff. She did her best to have a positive attitude and smile and say thank you. Today she swallowed a tiny bit of yogurt. Today she got up in her chair twice for the first time. Today she smiled.

We are scheduled to move downstair to rehab on Monday. Her day will be very busy. Target date for Allie to come home is 4 weeks from now.

Please pray for God to give Allie the ability to breathe on her own before too much more time passes.

Thank you for your love, support, prayers, visits, meals, pet sitting, help with Adam, use of the motor home, etc. THANK YOU THANK YOU ALL

I am now among the unemployed. In spite of insurance problems, loss of income, etc. we know that with the love and support of our family and friends we will get through this.

Love, Peace & Happiness
Deborah

Swallowing & Hallucinations

Dear Friends (old and new) & Family,

The past week or so has been a mixed bag. The nights are better due to the use of a new sleeping medication. Other than a few requests for water (small sponge to wet her tongue) Allie's been getting a pretty deep sleep until about 5 am. We hate the use of the strong stuff, but at this point sleep is crucial to her physical as well as emotional well being. It's always a toss up. The mornings continue to be rough. Allie wakes up every morning to find that her "condition" is not just a bad dream but real. She's sad and then complains of a stomach ache. She and I are talking more about the sadness. She refers to herself as broken and that she will never be normal. I tell her that it will get better and that it already has (although she has no memory of the first few weeks and can't imagine anything worse than right now). We both shed a couple tears and then talk about the goals for the day.

The last couple of days have been better than the week or so before. On Saturday morning she was complaining of pain and was agitated. So she was given a new medication (Klonopin). Her reaction to the med. was to have scary hallucinations for the next five hours. In spite of this she managed to let us get her into her wheelchair for some time outside in the fresh air.

Yesterday she had a swallow test. She went down to have a scan video taken while given fluids with dye in them. She did pretty good. She was cleared for small ice chips, teaspoons of juice and 7up. Her swallow is not quite strong enough yet and there is some residuals getting hung up, so a bit more work before she can sip from a cup or straw. She was less than pleased about that. She wants to drink a glass of water something fierce. I think a lot of the stomach pain is due to her only source of nourishment being liquid through a feeding tube directly into her stomach. It will be a day for celebration when she can drink and eat like the rest of us!!

She continues to have pain, though not quite as bad. She is on several pain medications including Neurontin for the "nerve pain" (thank you Katie for the heads-up-she's actually be on it for quite a while but I always appreciate anything you have to offer, just in case). Her time up out of bed and in the wheelchair is up to 3 hours now, which is awesome.

We saw a few smiles this last couple of days which is what keeps me going. She's been pretty bleak but sometimes when friends show up or she finds out one of her two favorite nurses is coming on shift, she'll show us that beautiful smile.

Ron, Adam and I continue to be incredibly touched by the support and help of our friends and family (not to mention the prayers from people we don't even know!!). Anjel went by the preschool and was blown away by the incredible baskets that have been donated for the Rally for Allie fundraiser (again thank you Stacy for putting this together). The generosity is not something I can even begin to adequately thank you all for. A special thank you to my boss, Curtis who has been incredibly supportive. As some of you know, I started a new job in February.

I feel in my heart and soul that Allie is healing. In time she will overcome her current disabilities. As always thank you all for the prayers, visits, meals, cards, donations, posters, pet care, wishes of strength, etc.

Love, Peace & Happiness
-Deborah

Difficult days

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

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

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