Go Giants & hello time change

Dear Family & Friends,

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

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

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

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

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

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

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

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

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

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

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

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

A special thank you:

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

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

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

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

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

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

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

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

To cousins Eric and Latasha for your uplifting visits

To those of you providing us with the yummy meals!

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

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

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

Thank you. Have a wonderful and safe Thanksgiving holiday.

Love, Peace & Happiness,
Deborah