Power Wheels

Dear Family & Friends,

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

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

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

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

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

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

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

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

Thank you for listening. Stay safe.

Love, Peace & Happiness,
Deborah