11/23/2011
I just wanted to thank all of you who supported Alicia in the last fundraiser. I am not sure who donated what because so many people gave cash instead of a check. What I do know is that we raised over $5000 to go towards continuing care through the International Brain Research Foundation. The cost is $6000 a month, so with what we already paid, we should last till the end of the year. We are desperately trying to get Alicia Deep Brain Stimulation, but this is a surgery that takes many preoperative tests and will be difficult to be approved. Alicia is qualified, because she has a parkinson tremor. But because her consciousness level is minimal, they may refuse the surgery. What I have learned from doctors and researchers is that this surgery would depolarize the neurons and cause an action potential that would wake up those dormant cells. It would be like pushing the reset button and suddenly your computer works. She would be having the surgery to control her tremor, because that is what it is FDA approved for. Yet, the side effect of making her fully conscious would be wonderful, and it has worked before on another patient in her same situation. I have been working very hard to keep her strong so when she is fully conscious she won't be disfigured by her joints being contracted and her muscles atrophied.
So sorry I haven't posted anything sooner. I have been fighting the red tape to get this moving. Also, to just get her physical therapy is like pulling teeth. I would not wish what Alicia is going through on my worst enemy, nor the agony of what I am going through just trying to get assistance through local, state, and federal programs.
So everybody keep Alicia in your prayers! Because she is being followed by many researchers, her success will be documented, and could help somebody else whose life is tragically effected by a traumatic brain injury.
Thank you for your continued support.
Alicia's mom.
10/08/2011
We have been back in San Diego since Sept 27th. Alicia has shown improvement. Unfortunately, she is still considered minimally conscious, but closer to emerging to an awakened state. Some days are better than others. On Sept 8th she walked with assistance 60 feet taking all steps with the left foot on her own. Sadly those days are sporadic and she needs to practice everyday. She is also able to take puree and honey thick foods. We practice this everyday as well. You may wonder how somebody minimally conscious can do these things. I wonder too. Because Alicia does these things when prompted but not when we verbally ask her, she doesn't qualify as following commands. Because she can't follow commands when asked, insurance does not cover rehabilitation in California. This is why we had to travel all the way to New Jersey for rehabilitation and for care under Dr. Fellus who specializes in Traumatic Brain Injury. Dr. Fellus works with the International Brain Research Foundation. Their fee is $100,000 per year, and it doesn't cover all treatments. As you can imagine this has been a great financial burden to us. We have paid $50,000 for 6 months which will expire in the middle of November this year. Because Alicia has shown improvement, even not as much as we hoped for, we would like to still work with this foundation. If we cannot raise the money, we will try to pay out of pocket for rehabilitation. One of the reason's Alicia's progress has been so slow is because her optic nerves have atrophied to the point where the New Jersey ophthalmologist believes she has no vision. We will be going back to the Shiley Eye Center this week for a second opinion. The other problem is even though she can hear she is unable to process the information when it comes to the midbrain. Dr. Halper from the International Brain Research Foundation and Dr. Torchinsky in San Diego are both researching the possibility of Auditory Midbrain Stimulation. This is still considered experimental even though it has shown progress. Other surgical treatments still being studied but not yet FDA approved are Deep Brain Stimulation and Vagal Nerve Stimulation. There are studies currently going on but Alicia does not qualify. So I try to be patient. Alicia's brain is functioning but more like, as the doctor tried to explain, trying to watch a television show that you haven't paid for and the signals are scrambled. Of course Grandpa says, like watching the playboy channel? Yes, I guess so, the doctor answers.
Therefore, we are going to keep moving forward and pushing for progress. My greatest fear is Alicia is alert enough to know how disabling her life is. I need to get her better soon and have some quality of life, for her sake and mine. If anybody has connections to doctors or research studies that could help Alicia, please contact me at This e-mail address is being protected from spambots. You need JavaScript enabled to view it
If you would like to donate money, you can through the tbirdfoundation (Alicia Bailey). Or you can attend the Golf Tournament/Dinner event below.
Thanks, Alicia's mom
Fundraiser for Mike Bailey's Granddaughter
As you know it has been a long time since there has been a post. Alicia's progress has been so slow and we have had many setbacks (infections, seizures, intestinal blockage, high blood pressure from meds, etc). Currently we are going through another setback after surgery a week ago. However, I do feel confident that in a week or so she will build her strength back to where she was and start progressing forward. Prior to Alicia's Baclofen pump surgery she was able to push down on her legs to a standing position with one person assistance for balance. With the help of two therapists she was able to take steps. Best to date 32 feet. She can lift the left leg well but wants to step backwards instead of forward. She can't lift the right leg at all so the therapist does that for her. At times she can sit at the edge of the bed with no assistance. The biggest challenge is trying to communicate with her. She appears to hear but not understand. I've been told she can see, but to me she doesn't appear to. The way she receives information is through touch. She feels her surroundings with her left hand. She also communicates to us by using her left hand. When she is feeling calm and happy in her surroundings she will rub your back caress your face or gently hold your hand. When she is stressed she may pull or grab at the persons clothing. If she doesn't like somebody touching her, she will take the person's hand and remove it from her and put it down. Two days ago she brushed her own teeth, but yesterday she would only hold the toothbrush to her mouth (I think she was tired). Grandpa Mike is trying to teach her to give someone the bird. She almost did to the neurologist yesterday. The neurologist has high hopes that she will reach her goals, so he told Mike to be careful of what he wishes for. She makes sounds at times the "T" sound, "P" and "B" but never when the speech therapist is here. We have been in NJ for almost two months now and pretty much depleted most of our savings including her Grandpa's retirement. Luckily he has charmed the cafeteria lady into giving us free meals
. I'm not sure how much longer we will be out here, kind of depends on how much Medicare will pay. We miss San Diego but want to give Alicia the best shot at rehab. The treatment here is experimental and some of the meds given are off label and therefore are not covered by Medicare. I have not always agreed with the doctor and we have had our disagreements, but he is a very patient man, and I haven't been thrown out of the hospital, yet. One of Grandpa Mike's friends is thinking about having a golf tournament/slash dinner to raise money for Alicia. These things take time so if it happens it probably won't be for a few months. I will post more later when I know. In the mean time, anybody on the east coast that wants to visit and cheer Alicia on during her therapy is more than welcome. Everybody working here have come quite attached to Alicia and are all doing their best to help her recover. Today hasn't been a good day for her, she has vomited three times now and therefore unfortunately can't participate in any therapy. At the moment though she is currently sleeping which is why I have the time to write this post. Thanks to all that have helped us on this journey of Alicia's recovery. Vivian (aka Susie or mom)
A note from Vivian Bailey about her daughter Alicia Bailey:
I don't know quite how to start, but her life and the life of my family has changed in the blink of an eye. My beautiful daughter graduated from UCLA in June 2008 with a degree in International Development. Her hopes to change the world and make a difference have been put on hold, but I think she will make a difference in an unexpected way. She worked for a company named Relief International until Dec 31 of 2008, when she came home to study for her GRE and prepare for graduate school. She then found a soul mate and felt like she was on top of the world. She was happy, happy, happy! After planning a birthday party for him, and burning both ends of the candle, she fell asleep at the wheel while driving home.
10/2/09: Tomorrow will be 6 months since the accident. She has not waken up enough to follow a command completely. So she remains at home with her mama taking care of her. She can move her left leg so much that she often kicks it off the bed or off the recliner while up. She can actually move all her extremities to some extent. She even once had her insulin pump in her left hand holding it. I didn't put it there; that was yesterday. At times I say to her stretch out your leg and a moment later she has. I don't know if this in a coincidence or not, but I know she is continuing to make her way back to us. Today was a little stressful, because we found out that the waterproof lining covering for her bed is not really waterproof. We found this out after giving her a bath and seeing tiny little drips in the middle of underneath her bed. We took the whole bed apart and let it dry out. Tomorrow is a big day, because the neurologist is starting her on a new med, everybody pray that this is the breakthrough medication.
10/8/09: This past week has been stressful and good at the same time. Alicia hasn't had any real change after being on the new med for one week now. However, she is on a extremely low dose, that her doctor will raise slowly. So I remain hopeful. She remains in good health and I need to remember to remain patient. One neurologist said it takes 6 - 12 months (for this kind of injury) before they start waking up enough to follow a command. The neurons have to grow new pathways. So I have to give my self pep talks daily to stay strong and not be sad. I hope all of you will support me in my decision.
10/26/09: I wish I could say alicia's progress has changed since the last post. But there isn't that much change other than maybe she moves her left hand a little more. I will try to be patient as I hope most of you are. I remain optimistic that this girl will come back to me and her friends who love and miss her sooooo much!!!
11/16/09: I am sad to say there hasn't been any change in alicia. She remains healthy though, and for that I count my blessings. There is this music video on youtube that I like to watch. I like to think that is what alicia is experiencing while asleep. It is called "Her Morning Elegance"
04/26/10: Well, it has been over a year (a really rough year). Alicia has some new doctors who are trying new medicines. It's kinda of trial and error. But alicia has definitely progressed. She moves her entire left side (so much that we have to constantly watch her so she doesn't pull out her PEG tube. (As most of you know she doesn't have a trach anymore). A couple of months ago I told her if she wants her trach and PEG out she will have to pull it out herself. Well, she did pull out the trach! and is doing 100% better without it. Now she wants the PEG out. So now, I constantly tell her, you can't pull that out (it will hurt!) She doesn't talk but does make vocal sounds. The other day she took her left hand to her right hand and opened her right hand herself. The angel of a nurse that was here works very hard with her and was so excited, I thought she was going to cry. She needs rehab speech, physical therapy, occupational therapy. None of these are covered by my insurance nor is it covered by medi-cal. That is why I so desperately want to move her to New Jersey (where they have the Number #1 rehab facility in the country!) Anybody who wants to help in our quest to make Alicia better, it would be greatly appreciated! Sorry I haven't had the time to put on another fundraiser. If I can get one organized I will post it on this site. Thank you all who care so much for Alicia.
8/05/10: I don't want to post anything unless it is positive. That is why Alicia can not have visitors. Lets just say she would not want people to come look at her suffering and never return. So here is the positive: Alicia is making progress, Baby steps. These steps are little. I was told by somebody who treats traumatic brain injury (TBI) patients, that this is the usual on what TBI victims go through. Right now she is going through a difficult stage, but I hope this will be the worse stage she goes through. This is a long journey. I appreciate everyone who is still concerned. Everybody has their own problems. I don't blame anyone for going on with their lives. I will continue to do everything I can for my daughter until the day I die. Once you become a mother, your life is not your own, as all mothers know. As a registered nurse, I am not use to asking for help, but helping others. It is very difficult to ask for help, but I continue to do it. Thank you, whether you can donate money or just a hope and prayer.
