Happy New Year?

Hi Everyone,

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

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

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

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

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

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

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

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

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

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

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

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

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

Every Moment Holds The Possibility Of A Miracle

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

Love, Peace & Happiness,
Deborah