TMPRARY

Dear Family & Friends,

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

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

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

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

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

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

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

Love, Peace & Happiness,
Deborah