Transistions & Set-Backs

Hi Everyone,

When I write these posts I make an effort to pick a title that I feel is relevant to what is happening with Allie or where she is in her "progress" at the time of the post. A couple of weeks ago I realized it had been a while since I'd written and it was time to sit down and let you all know about the latest happenings. The title I thought would best fit the time was "Transisitions". Somehow I was distracted that day and never got past the title. Since then more has happened and I've had to once again acknowledge a temporary set-back. Hopefully, I will get the time today to bring you all up to date. Thanks for your patience.

My daughter's strengths are many and her sensitivity, confidence, competitive nature and intelligence had served her well before her accident. The one thing I felt she always struggled with though, since birth, was making transistions. While some thrive on change and the spontaneous, Allie seemed to strongly resent moving from one place or action to another, unless she was the one making or in some way controlling the move. So how does a personality that resented being put in and out of a car seat, having her hand held in the mall or going from the 2nd to the 3rd grade before she decided to, deal with a sudden and complete loss of control? In the last month or so I was beginning to see a change come over Allie. She was preparing for a transistion. She was beginning to think about and talk about letting go of what she had perceived to be her place or role in this world and her plans for the way in which she expected to participate in it. She was taking the first steps towards coming to terms with her current situation. I'm not trying to fool myself into thinking that she was happy about this and that it was going to come without tears, confusion, anger and resentment, but Allie is more than just a survivor. Allie has always tried to be the best at whatever it was she was doing and she was, I think, realizing that it was time to figure out what that was now going to be. She sees what her friends are up to. She hears about their jobs, boyfriends, colleges, parties and trips. All of these things she still can and will have if she so chooses, but the path for her has changed drastically. She still has so much to offer but how and where?

We've been pretty busy around here lately. Thanks to the hard work of my husband, brothers' inlaw, nephews and son, my horse is home! The family camp really feels complete now and Allie and I have Cash's antics to entertain us along with the dogs. Allie, Adam, Taylor and I attended a 4th of July bash at the Sander's. Allie had a chance to talk with several friends she hadn't seen in a while. Thanks to the Sanders for including us and thank you to Mike and the rest of the guys that helped me get Al and her chair safely through a couple minor obstacles to the festivities. She had a great time. Ron, Allie and I met up with Connor and his family for an early dinner down at the wharf a few weeks ago. We all had an awesome time. Allie always feels especially comfortable with Connor and his family since the action of suctioning, etc. is something they are so familiar with. We made it over to Wendy and Tanner's for a fun dinner date. Allie said it was really nice to just go and hang out with good friends somewhere different for a change. Michelle, Samantha and Dylan came over one weekend to barbeque for Allie and Wendy brought home made ice cream sandwiches to complete the menu. We had a visit from Auntie Sandi that was overdue since she had back surgery a while ago and has been unable to travel. Al had really missed her. Uncle Doug, Auntie Vicky and Auntie Pam's regular visits are always so comforting to Allie and give Ron and I a break (and Allie a break from us). On one of Uncle Doug's last visits Ron and I enjoyed a dinner out with our good friends, Rosalie and Doyal. Kerry continues to be a frequent visitor and always manages to make Allie (and me too) feel better. She helped for the first time with a transfer yesterday and did great. She says she's ready to try suctioning next! Kathi off from teaching for summer vacation is back to coming mornings to do Allie's range of motion and her company is always helpful and a great comfort in so many ways. We love seeing Annie, Julie and the kids and are very excited that soon they will be moving within walking distance! Susan's morning visits are always a welcome treat for me and Tricia and I actually made it into the park the other day for a ride through the redwoods on our "ponies". The best therapy for me and Al did fine hanging out with Dad and Adam.

Allie has her first PT appointment scheduled next week at Valley and as I've mentioned before, can't wait to try out the FES bike. I'm hoping they'll come up with some good ideas to help her strengthen her neck and in the meantime help her get more comfortable in her headrest, which is a constant source of frustration. The biggest news I guess is that Al and I spent our first night in over 16 months, apart from each other. It has been a tradition for over 20 years for me to go spend a weekend away with three of my favorite women friends. Last year was obviously not an option but I decided to give it a go for at least one night this year. My friends cheerfully agreed to change things a bit and we rented a cabin within a few minutes of home just in case. Auntie Vicky during her visits had become quite competent with all Al's care and so came to stay the days and night with she and Ron. I am very happy to say that overall things went great in my absence. I had a wonderful time relaxing with my friends, dining out, walking in the park and doing some local wine tasting! Allie genuinely enjoyed hanging out with Auntie Vicky and having a break from her ever-present mom! When I called to check in Kerry had dropped by and the three of them were laughing and having a fine time. All in all in spite of the daily ups and downs we felt pretty good with the direction things were moving in.

Just when things seemed to be falling into a if not entirely comfortable pattern, at least a less stressed one, the other night Allie began having trouble breathing. This did not mimick anything we had seen before. Her circuits (the tubes that deliver breathes from the vent to her trach) started making a loud wheezing sound. Allie began experiencing chest pains and she felt extremely short of breath. There was no indication of high pressure on her vent as I'd seen in the past. The first night it happened we got through it somehow but when the same thing happened the following night Allie passed out completely. She was out much too long while Ron, Adam and I desperately worked to bring her back. Get her on her back, head down, legs up, breaths from the ambu bag. A drill we know well by now, but still the fear and heart-clenching chill that this might be the time we can't do enough and the reality of how close we are to losing her, makes it a challenge to remain calm and focused. Slowly her color came back. By the time she was fully aware, she once again "woke" to her room full of concerned emergency personnel. Thanks again to our friends at the Felton Fire Dept! We opted not to go to the hospital that night as the worst seemed to have passed. I called her pulomonologist the next day and he agreed that he should see her asap. She went for chest xrays. We were all relieved that there was no indication of fluid or clots in her lungs. As an extra precaution one of her ENT docs came and scoped her to find a healthy looking trachea. We had packed for a hospital stay just in case and were thrilled to be going home later that same day. She was given a prescription for nose drops and an inhaler. Unfortunately, she has had several "episodes" since. Kathi was here to witness one and said that it sure resembles an asthma attack to her something Allie has no history of. While the inhaler does not give Al immediate relief it does seem to be helping. We hope whatever is going on will be shortlived and Allie can get back to the business of what I'm calling her "transistioning".

While Allie begins plans for a new path to travel there is amazing progress being made in the science of stem cell research and active trials. Either way, I hold onto the belief that her future like most 20 year olds is full of amazing promise and that any path she chooses will be remarkable.

This morning Allison came by for a surprise visit with her bright and bubbly personality and as I write this is helping Al eat the breakfast she prepared for her. She'll help me get her up and hang out for a while. There is no subsitute for good friends. Seeing my daughter's beautiful beaming smile when she heard the familiar voice coming through the door, is a gift I can treasure all day today. The love of our friends and family always the best medicine of all.

Thank you to all the incredibly special people we have been blessed enough to be surrounded with. Please remember how much you mean to us. Please continue your prayers that Allie breathe on her own soon and that she continue to heal. Your words of encouragement on this blog mean a lot to Allie and the rest of us. We do look forward to hearing from you.

We cannot fail with all of you behind us.

Love, Peace & Happiness,
Deborah

ps: thank you to Farrah for the picture and stuffed animal you made for Allie and to Luke for the cool horse picture you gave her (Auntie Deborah Loves her's too!).