Wow

Dear Family & Friends,

Wow, I know quite a bit of time has passed since my last post. Quite a bit has happened as well.

I guess the biggest news is that Allie now has a caregiver (other than mom). Marsha is an RN with hospital as well as homecare experience. She is smart, compassionate and Allie was comfortable with her right from the start. She's here every week day for a full eight hours. Marsha's a great addition to what my daughter, Anjel refers to as "team Allie". No more stressing over who is going to help me get Al up. No more stressing about who is going to hold her head when we go to appts. or on outings. But, even more importantly Allie has someone, other than her mother, to assist her in her daily routine. For Allie I think this is a huge step toward independence, and while this is somewhat of a major adustment for both of us, the help is so welcome. We feel very lucky that we found someone like Marsha. Her value was immediate when she helped us solve an extremely worrisome issue. You may recall in my last post, I shared my fear and frustration over our inability to get trachs for Al. Marsha knew of a website and with a prescription from Allie's doc we were able to purchase them ourselves!

Allie turned 21 last month and a small group of us celebrated with margaritas at El Palomar. When we returned home a few of Allie's friends came over with cake and presents and we celebrated some more! Allie also had a group of about 12 or 13 of her closest friends over for the "real party" on Saturday night. The couple of days prior she became pretty anxious. She shared with me some of her fears, excitement, and conflicting emotions in anticipation of the event. Determined though to show people how much she wants and can still be part of the parties, etc. she was committed. She continues to be the most courageous person I know.

The party appeared to be a success. Champagne toasts and beer pong (desiginated drivers in attendance of course) followed by a couple of rounds of Apples to Apples, where apparently my daughter kicked butt! Thank you to Whitney and Anjel for helping Al get ready. Thank you again to Anjel (I know it was tough staying up so late with the young ones :))for hanging out, so that Al and her friends didn't have to have us parental figures hovering the whole time.

Backtracking a bit in time..I hope you all had a wonderful Thanksgiving. Ours was good. Much better than last year. Allie was much more comfortable with the festivities and full house. When it was time to share what we were most grateful for, Allie went first. I don't think there was a dry eye at that table.

Christmas was a quiet lazy day for us. Our favorite kind. We did the secret santa thing again this year and drew names so each of us shopped for just one person in the family. Allie drew me, so the three of us went to the mall and with Marsha's help Allie was able to shop for the gift without my knowing what I was getting. This may not seem like a big deal to most but to Allie and me, it was.

The following week we hosted our extended-family's annual Christmas party. Unfortunately, it didn't go quite as well for Al as Thanksgiving did. Allie had only been up a couple of hours when she started to experience pain in her abdomen. It became increasingly worse and she finally asked to go to her room. For at least an hour things got worse and her symptoms made it difficult for us to figure out what was wrong. Uncle Doug, Auntie Pam, Ron and I stayed with her and although no word was spoken, I know we all feared the possiblity that the situation might escalate to an emergency. Fortunately, once she felt more stable we got her into bed and after another hour or so she was feeling better. She had been so looking forward to participating in the gift exchange/white elephant game that my family does every year. I felt very sad for her and to be honest for myself. I also was looking forward to her participation this year...things had been going so well. We ended up taking part remotely from her room and Allie focused on that. She was happy. We all were. Allie was home and we were all together.

Allie has yet to have her PT appointments which appears to be the direct result of human error. You would think that life is difficult enough for her without the constant frustration of dealing with the healthcare system. It is at times overwhelming. Vent circuits that take weeks to arrive only to be incorrect when they do. Suction catheters that are weeks late because someone is waiting for information they should already have.

She did recently get to trial a power chair which was very exciting. There was much concern surrounding which type of "drive system" would best work for her. Although, there are several to choose from, her limited head control narrows it down significantly. Because, she has no real voice having a sip and puff instrument (a likely choice for those with her level of disability) in her mouth all the time promised to make it even more difficult for her to communicate. The drive her OT thought might be best was the chin drive. In the gym at Valley Med we transfered her into the chair. The first concern was whether the chair would drive forward in the reclined position necessary for Al to hold her head up. It did. Allie asked a couple of questions about how it worked and off she went! To everyone's amazement she drove the chair all over the hospital unit while her vent still attached to her own chair was pushed behind her. Anyone watching would have thought she'd done this many times before. She was an instant pro. And if it sounds like I'm bragging......I am! I did my best not to be too obvious about the tears I felt welling up. Was this how I felt when my kids learned to ride a bike for the first time? No. That was a fantastic feeling. This was so much more.

So, begins the process of ordering the chair. Much involved. More to do with the healthcare system. I'll spare you all the details. Hopefully, she'll have the chair before Spring. In the meantime, expansion of the flagstone walkways in our yard which will create a much larger accessible area for her is underway. Thank you Dennis we are so glad you were available to do this project for us.

Allie has been getting out and about much more. The unavoidable drs. appts., of course, but also dinners, shopping, and movies. She tells me that while she isn't really feeling any more comfortable with the stares, etc., she is getting somewhat use to it. On occasion when we are out, someone that is familiar with her story will come up and introduce themselves and say hi. She is always genuinely touched by these meetings. We attended Stacey's annual xmas party again this year and Allie was much more comfortable and had an even better time this year than last. Thank you Stacey for including us once again.

Having friends home from school for the holidays was a special treat. Allie loved getting caught up with everyone in spite of the inevitable mixed emotions that come with hearing of her friends busy lives. She can't help but draw parallels thinking about where she would be and what she would be doing if it weren't for the events of that rainy day. Hearing about school activities, upcoming graduations, boyfriends and career plans....yet, I have never heard a word of resentment from her. Her sincere happiness at her friends accomplishments astounds me and makes me prouder than ever to be her mother.

A couple of weeks ago with me and dad along, she attended a concert at Don Q's in Felton. Her childhood friend, Kellen and his band (The Coffis Brothers and the Mountain Men) was performing and while she had been invited before, this was the first time that she really felt up to such an outing. She was able to hang out on the side of the stage away from the main hustle and bustle, but where her friends could keep her company and a constant stream of well wishers could come by and say hi. The music was great and it was incredibly fun to be out and to see so many people enjoying themselves. Thank you again to Kellen, Vicky and Jim for all your support. Allie confided in me, that this was by far the best night she'd had since her accident!

The overwhelming sad days are a bit fewer and further apart. Night anxiety attacks rare. Allie spends more time on her computer and is getting pretty darn fast at it. In fact, I keep telling her that it's about time she start writing these posts herself. Wendy gave her an amazing set of long paint brushes as a gift and so we went out and got some more paint and canvases. We are hoping to see more paintings from her soon.

So we wait. We wait for the cure that I know is coming. In the meantime we are grateful that the journey has been a bit less bumpy lately. The smiles more frequent.

Thank you for the love and support you continue to show my daughter and our family. A special thank you to Beth for your generosity to my family this xmas and to the Weisinstein's for the awesome gift cert. We all enjoyed the take out from Mama Mia's when just our immediate family got together to celebrate Al's b-day. Thank you to Bob L. for showering Allie with such remarkable b-days gifts. You certainly made her feel extra-special. And a personal thank you from me to my friend Nan for the generous gift to me. And as always...a huge thank you to my family for always being here for Allie, Adam, Ron and me.

We pray that 2011 brings you all nothing short of the most incredible joy.

Love, Peace & Happiness,
Deborah