This is the story of my journey in life. I was born 12 weeks early and spent 78 days in the NICU. There were complications and this blog is intended to help our family and friends stay updated.
May was a busy month and we tried to get some routine into our home. Between little Alexandria crying and wanting to feed all the time and my busy appointment schedule with therapies and doctors appointments, we were lucky to get some help from Auntie Marilyn and Godma Yi.
Auntie Marilyn, Audrey and Alexandria
Auntie Marilyn and Alexandria
Audrey and Godma Yi's boob
We also had other visitors in May, Grandpa Mike came to help and so did Grandma Florence and Grandpa Joe.
Grandpa Mike and Mommy bathing Alexandria
Grandma Florence and Alexandria
In May we also celebrated Daddy's birthday and my first birthday!
1st Birthday
Daddy's Birthday
On the medical front, I started getting physical and occupational therapy through the California Children's Service and early intervention services from the Regional Center via Easter Seals. I am officially in the "system" which is a nightmare to navigate with all it's various rules and eligibility criteria's. Plus with the California budget issues, there is always hurdles to getting the services I have been deemed eligible to receive. Basically if you don't ask and escalate you may miss out. I am lucky that Mommy and Daddy are not shy to push the envelope and not take no for an answer. I just feel sorry for other kids who's parents are not as well versed in navigating the system. Daddy has had to reach out to the Care Parents Network for advice but ultimately Mommy and Daddy have to be my biggest advocate to get sh!t done!
I got my first set of orthosis which are called AFO's (Ankle Foot Orthosis)...basically torture devices to try and keep my feet flexed at the ankle since I have a tendency to go into extension. Suffice to say I do not like them.
My Pink and Leopard print AFO
Doing physical therapy with Mommy
That was May 2011...many thanks to all our visitors and people who can over to help us take care of Alexandria....baby burrito #2
There was no fooling around in April with the arrival of my little sister Alexandria just 11 months after me....she came in at at whopping 5 lbs 12 oz, almost three times my weight of 1 lb15 oz. Despite her hefty size, I made it very clear to her who is the boss in the family.
We were all very happy that Alexandria didn't have to spend any time in the NICU even though she arrived a bit early at 37 weeks.
Alexandria's Godmother Jenny visited the day after and got to hold her.
Mommy did her usual non-compliant patient trick and got herself discharged two days after her c-section because she missed me so much and wanted to get home. I think it was actually that she was afraid that Godmother Yi would kidnap me and take me back to SoCal. She came to the hospital incognito to visit Mommy.
The rest of April was pretty quiet...well as quiet as could be with little sister crying and wanting to be fed every two hours. We just spent time as a family.
Daddy wanted to get a picture of Alexandria in his hands and Alexandria decided it would be funny to pee on him (look closely at Daddy's hand holding her legs)....so I guess there was a late April Fool's joke on Daddy!
Hi Everyone...it's been awhile since I last posted in April and let me tell you lots has happened...good (my baby sister Alexandria arrived) and bad (some more medical hurdles). I'll try to catch you up with a few posts over the holidays....but I wanted to wish everyone a Happy Holidays with family and friends no matter what you celebrate...Christmas, Hanukkah, Kawanzaa or Festivus.
Here is a picture of me in my holiday bow and Alexandria as a Santa's Helper.
Here is a couple of videos to show how much more mobile I am when I take Valium
I can military crawl and pull my legs up more easily. I just need to work on some core strength to coordinate with my arms. Then I can pick my head up and not drag my pretty face across the mat and get a rash. Guess I lucked out and got the family trait of big head...have you seen the size of both Mommy and Daddy's heads?
You are an obsession, I cannot sleep I am a possession unopened at your feet There is no balance, no equality Be still I will not accept defeat
I will have you, yes I will have you I will find a way and I will have you Like a butterfly, a wild butterfly I will collect you and capture you
You are an obsession, you're my obsession Who do you want me to be to make you sleep with me
- Animotion "Obession"
My Godmother Yi is obsessed with me...in a good way!!! She has come up from LA to visit every two to three weeks to be the weekend Nanny and gives Mommy and Daddy a break to rest. Basically she flies up Friday night straight from work and leaves Monday morning and goes straight to work. When she is here, Mommy and Daddy do not get to hold me for more than 5 minutes and Godma Yi takes care of me the whole time she is here.
At work, her cubicle is plastered with my picture. On her computer, she made this screensaver.
Godma Yi is always giving me gifts and ordering me things online!
The best thing about Godma Yi....is that she makes me laugh and I love it when she comes visit. I wish she would move to to NorCal, so I can see her more...I think I maybe the one obsessed with Godma Yi.
Kids are different today I hear every mother say Mother needs something today to calm her down And though she's not really ill There's a little yellow pill
She goes running for the shelter Of her Mother's Little Helper And it helps her on her way Gets her through her busy day
- The Rolling Stones "Mother's Little Helper"
In 1966, The Rolling Stones released the song “Mother’s Little Helper,” which is about a mother needing the “little yellow pill” to get through the day. The little yellow pill was "Valium". Fast forward to 2011, Mommy and Daddy call Valium..."Audrey's Little Helper".
I've been taking Valium since late March and let me telling you about my experience chasing "little white rabbits".
Back in February, the neurologist talked about various drug therapy to help with my spasticity but didn't think I needed to start anything yet. A week later, I had a really bad night and was really irritable, which makes me very stiff. So Daddy spoke with the neurologist and got a prescription of Valium (diazepam 5mg/5mL solution) to use when needed when I got irritable. At first, Daddy and Mommy didn't really want to use it because they felt guilty they were drugging me and knocking me out. But I had a couple of really bad nights where I couldn't control myself and kept Mommy and Daddy up for hours. So reluctantly they tried it one night for their own sanity (no they didn't take it)...WOW...I slept like a baby that night!
Mommy and Daddy only gave me one-third the prescribed dosage and I was still a bit groggy the next day but to their surprise, I was really limber and loose. I was able to move my arms and legs much more freely. Daddy wondered if it was just the anxiolytic effect of Valium or something else, so he did some research on Valium and spasticity.
Daddy explained to me that in 1957, Hoffmann-La Roche introduced the class of tranquilizers known as benzodiazepines, with Valium (diazepam) and Rohypnol (flunitrazepam) being the best known members. Valium got the nickname "Mother's Little Helper" because overstressed British housewives in the 1960 and 1970's were using it to help them get through their boring, repressed lives. Rohyphol (aka "Roofies") were introduced to the US in the 1990's and became known as the "date rape" drug.
If you want the bottom line (like Mommy does), then skip down to the section IN SUMMARY, if you don't want to scientific explanation of how Valium helps me.
Benzodiazepines are commonly used for treating anxiety, insomnia, seizures, muscle spasms and alcohol withdrawal. Basically it calms people down and makes them more relaxed...which what I experienced. How it works is that all benzodiazepines act by enhancing the actions of a natural brain chemical, GABA (gamma-aminobutyric acid). GABA is a neurotransmitter, an agent which transmits messages from one brain cell (neuron) to another. The message that GABA transmits is an inhibitory one: it tells the neurons that it contacts to slow down or stop firing.
Since about 40% of the millions of neurons all over the brain respond to GABA, this means that GABA has a general quietening influence on the brain: it is in some ways the body's natural hypnotic and tranquillizer. This natural action of GABA is augmented by benzodiazepines which thus exert an extra (often excessive) inhibitory influence on neurons (Fig. 1).
Fig. 1. Diagram of mechanism of action of the natural neurotransmitter GABA (gamma-aminobutyric acid) and benzodiazepines on nerve cells (neurons) in the brain
(1,2) Nerve impulse causes release of GABA from storage sites on neuron 1 (3) GABA released into space between neurons (4) GABA reacts with receptors on neuron 2; the reaction allows chloride ions (Cl-) to enter the neuron (5) This effect inhibits further progress of the nerve impulse (6,7) Benzodiazepines react with booster site on GABA receptors (8) This action enhances the inhibitory effects of GABA; the ongoing nerve impulse may be completely blocked
The way in which GABA sends its inhibitory message is by a clever electronic device. Its reaction with special sites (GABA-receptors) on the outside of the receiving neuron opens a channel, allowing negatively charged particles (chloride ions) to pass to the inside of the neuron. These negative ions "supercharge" the neuron making it less responsive to other neurotransmitters which would normally excite it. Benzodiazepines also react at their own special sites (benzodiazepine receptors), situated actually on the GABA-receptor. Combination of a benzodiazepine at this site acts as a booster to the actions of GABA, allowing more chloride ions to enter the neuron, making it even more resistant to excitation. Various subtypes of benzodiazepine receptors have slightly different actions. One subtype (alpha 1) is responsible for sedative effects, another (alpha 2) for anti-anxiety effects, and both alpha 1 and alpha 2, as well as alpha 5, for anticonvulsant effects. All benzodiazepines combine, to a greater or lesser extent, with all these subtypes and all enhance GABA activity in the brain.
As a consequence of the enhancement of GABA's inhibitory activity caused by benzodiazepines, the brain's output of excitatory neurotransmitters, including norepinephrine (noradrenaline), serotonin, acetyl choline and dopamine, is reduced. Such excitatory neurotransmitters are necessary for normal alertness, memory, muscle tone and co-ordination, emotional responses, endocrine gland secretions, heart rate and blood pressure control and a host of other functions, all of which may be impaired by benzodiazepines.
IN SUMMARY...Valium binds to receptors sites in the brain and enhances the inhibitory activity of the neurotransmitter GABA, that tells neurons to slow down or stop firing, which reduces the amount of tone or spasticity of my arms and legs. Basically it allows me to release and move more freely.
Now when Daddy first heard Aunt Jenny tell him about Braco...he was a bit skeptical. But Aunt Jenny is one of Daddy's really good friends and has always tried to get Daddy to explore the world of alternative medicine and healers. And it was such a weird coincidence that Aunt Jenny would call from Brazil telling him she was just thinking about us and that we needed to see Braco, the day after we saw the neurologist. Daddy said he had some flashbacks to some of the "adventures" Aunt Jenny would get them into...but they always emerged unscathed and with a funny story. But Daddy wanted to keep an open mind because it was just too much of a coincidence even though was thinking back to the time when he was sitting at Aunt Jenny's beach house watching her burn mugwort and wafting the smoke around her knee (which had a torn meniscus) because a psychic healer in Mexico told her she didn't need surgery. So Daddy said he would do some research on Braco and go on a little adventure...it would hurt to see if Braco really had some healing powers or at the very least Daddy would have a funny story.
To understand the Braco...silent gaze experience, you should watch this video below first.
When Daddy arrived to see Braco, there was already a crowd and line up of people waiting to enter the session. The crowd was an interesting mix of older new age hippies, some people with physical challenges, and other just average people like Daddy. Some people seem to know each other, some just keeping to themselves wanting to be anonymous and some like Daddy looking around curiously wondering why they were there.
At 9am the line started to move, one by one we walked into the conference room. They didn't check your ticket or print out, you just dropped it into a basket. There was soothing new age music being played by a quartet and a bunch of volunteers directing you to the rows of seats. A woman with a calming voice was welcoming everyone and speaking warm encouraging words like a yoga instructor. Once everyone was seated, the woman introduced herself as Jane Sibbet, and she had produced a documentary on Braco and helped him organize his Tour of America. For those who watched the TV show "Friends", you'd recognize her as Carol...Ross's lesbian ex-wife.
Jane asked the audience some questions and then asked if some people wanted to share why they were there. Daddy said a young guy stood up and said he had met Braco in Hawaii and after the gazing session he felt all this positive energy surrounding him and then a number of good things started to happen. Then this middle aged guy shared his story of meeting Braco over a year ago and at the time he had been fighting with the Department of Defense for years to get compensation for exposure to chemical during the Vietnam War...well shortly after meeting Braco, he got a settlement. Then he said he also experienced a spontaneous remission of a cancer. He was diagnosed with a lymphoma and was about to start chemo but after meeting Braco, he said something told him to ask the doctor for another blood test...which came back negative. Daddy said the guy was visibly emotional telling his story. Jane then shared her experience with Braco which was somewhat different because she didn't participate in a gazing session but she was around Braco filming him and just by being in his presence she had experienced healing...not for herself but for her father. Jane talked about her father having been put in hospice care and given a few weeks left to live but after being around Braco, the energy help her father leave the hospice 18 months ago.
After the moving stories, Daddy said everyone was asked to stand to begin the gazing session. At that point Braco, walked into the room and stood on a stage in front of the room. He silently gazed out into the audience and scanned the room slowly from left to right to left to right and back to the center, then Braco quietly left the room. Daddy said, the whole gazing session took about 8 minutes, then people sat back down in silence for a few minutes. Looking around, Daddy said some people were visibly emotional, other basking with glowing smile. The volunteers were darting around the room with boxes of tissue handing them out to people crying.
Daddy said, Jane then asked people if they wanted to share what they experienced. One lady said, she felt an overwhelming sense of calmness and warmth with Braco's gaze. Another lady said she saw an aura around Braco. Jane said the last time they were in San Francisco, a lady said she saw Braco morph into Jesus and she was a Jewish. Daddy didn't feel any warm glow and tingly sensation but did comment that there was a sparkle in Braco's eye when his gaze was in Daddy's direction.
When Daddy came home and told us about his experience, we were all curious if the silent gaze of Braco was legitimate. Well Braco, doesn't claim to be a healer or that he heals anyone. People pay $8 to be in a room and have Braco silently gaze at you and that is exactly what Daddy got...so in his mind Braco is legit. So $8 maybe a small amount to pay to have some hope and I think what Braco does it offer people hope...not cures but hope...which sometimes is the best treatment possible. By the way...after Daddy came home that day...my colic wasn't that bad that day...so maybe Daddy did channel some good energy from Braco.
Well hopefully my silent gaze brings you happiness and hope!
If it does you can paypal $8 to Daddy...then I will laugh all the way to the bank like Braco!
I'll just over 10 months old now....7 months corrected age. I've spent 86 days in hospitals, had two GI surgeries, one barium enema and seen doctors in 8 specialties (pediatrician, neurologist, gastroenterologist, neurologist, physical medicine & rehabilitation, ophthalmologist, pediatric surgeon, neurodevelopmental pediatrics). I am followed regularly by a pediatric nurse practitioner from the Regional Center of the East Bay and a developmental specialist from Project Jason. I get weekly therapy in home from Easter Seals and twice weekly physical/occupational therapy at CCS (California Children Service). You would be amazed at how good Mommy is at making sure I get to all my appointments. See my calendar of appointments for the month of March....it's almost as full as Daddy's work calendar. So now you know why I haven't been updating my blog as frequently...I am just a busy girl about town! I've told you about all the traditional western medical treatments, but I have also tried some non-traditional modalities over the last 6 months. We started with the Anat Baniel Method (ABM), which is a specialized form derived from the Feldenkrais which tries to rewire and retrain how the brain learns. I went and did lessons for a period of 3-4 months. Although many of the things Anat says made sense to Daddy, in terms of movement and theory of being more fluid and not to force the body into positions or to do things it's ready for, there were also parts that he didn't agree such as having to either choose doing ABM or physical therapy. Also ABM was less about getting the parents involved and didn't really attempt to teach Mommy and Daddy how to do any work on me but more about recommending doing more lessons with an ABM practitioner. We've stop for now because it was getting to difficult for Mommy to take me to lessons in San Rafael 2-3 times a week while she is pregnant with my little sister. So did the ABM lessons help, I think in some ways yes...I did get more loose and flexible but not really sure if I would have gotten similar results with traditional physical therapy. I have also been seen by a traditional Chinese Qi Gong Practitioner who used his Qi (vital energy) to help me. Daddy was a bit skeptical because basically the practitioner would just wave his hand over me. But I have to say that after going for a few sessions, something happened to my Qi because my reflux decreased and I wasn't as gassy and spitting up after my feedings. Also Mommy had a quick session and without touching her, the practitioner scanned her back and told Mommy that he could tell that she had an old injury and he actually pointed to the exact spot. After a couple of more sessions, Mommy's persistent back and shoulder pain went away, along with the clicking sound in her shoulder blade. Mommy is trying to get an appointment to see Master Zhao who trained the practitioner we saw. Then finally I saved the best for last and wanted to share the experience of Braco...the silent gaze. Back in February, Aunt Jenny when to Brazil to go visit John of God who is arguably the most powerful unconscious medium alive today and possibly the best-known healer of the past 2000 years. On Friday February 4, I saw the neurologist who told us that all sign are that I have cerebral palsy. The next day, Daddy was about to make a call, when his cell phone rings and the caller ID says it's Aunt Jenny but she is actually calling from Brazil. Without Daddy mentioning anything about the diagnosis by the neurologist the day before, Aunt Jenny tells Daddy, she was thinking about us when she was having a discussion with a group of people (including some doctors and nurses) about this guy from Croatia...who for fifteen years, people from all over Europe have been streaming to Zagreb, Croatia to experience and be healed through the simple act of gazing with a kind and gentle man who goes by the name of Braco (pronounced Braht-zoh). While Braco doesn’t call himself a healer, hundreds of thousands around the world do and the group of people Aunt Jenny were talking with thought he was legit. So it seemed like a weird coincidence that Aunt Jenny would call from Brazil the day after we got some not so good news to urge Daddy to go see Braco because he just happen to be touring the US and would be in San Francisco the next weekend. Well Daddy went on February 13 to the Holiday Inn on Van Ness Street in San Francisco and paid his eight dollars and experienced the silent gaze....to be continued
I am learning from an early age that you sometimes have to work hard to achieve your goals...but working hard can also be fun. As many of you know I was diagnosed with PVL in July 2010 and we've been doing various therapies as early intervention in the hopes that my brain would rewire the neurons lost in the areas of damage....the idea of brain plasticity. If you want to learn more you should read this book by Dr. Norman Doidge, The Brain That Changes Itself.
Well the question probably on everyone's mind is how is the therapies working??? Mommy and Daddy both think that I am less stiff in my legs and at times can be quite loose and flexible...I can put my toes in my mouth.
But when we saw the Dr. Daniel Birnbaum, my neurologist in early February, he was still very concerned that I am too hypertonic in my legs...i.e. there is too much tension and my legs extend straight out whenever I am stressed and it takes a bit of work for Mommy and Daddy to get me to let go and release, especially my ankles. So what is the prognosis...well we don't know definitively and won't until I am about 18-24 months old, but Dr. Birnbaum has to explain worst case scenarios and what we could potentially expect....which is that I likely will have cerebral palsy.
Okay now that you've had a moment digest that...Mommy, Daddy and I were pretty shocked too when he told us and obviously we were hoping for better news. It's something that we have to prepare for as a possibility but as Daddy said on the drive home..."we are not willing to give up and accept it as a final conclusion." For those that know Daddy...you know how much he enjoys proving someone wrong and keeping the medical establishment honest...and I think he has a better chance of winning this challenge when we are on the same team with the same goal, then he had with the Biggest Loser/Gainer Challenge.
When you hear cerebral palsy (CP), the picture that pops into your head is probably of someone who walks with crutches or is in a wheelchair with spastic cerebral palsy. But did you know that Abbey Curran, Miss Iowa in the 2008 Miss America Pageant has cerebral palsy?
What I may have is spastic diplegia, also known as Little's Disease which is hypertonia and spasticity of the lower extremities which can really be broad ranging from mild to severe. Our goal is to work very hard to successfully resist and "push through" the extra tightness I experience so that I will be able to walk with no assisted devices or little noticeable gait.
So right now, I get in home therapy weekly with Easter Seals, my developmental specialist Rebecca sets up goals with Mommy and Daddy. Rebecca works with me and teaches Mommy things we can work on daily or brings in other specialist, like physical and occupational therapists like Antonietta or Annie (Rebecca's supervisor) who does infant massage on me.
I am also starting up with California Children's Service's Medical Therapy Unit where I will go in and get weekly therapy (physical, occupational, speech) at the Castro Therapy Unit, which is close to home in El Cerrito.
Those are the two primary things I am doing now. We decided to stop the Anat Baniel Method for while because it was getting to difficult for Mommy to take me to all the appointments. We'll see if it makes sense to start back up after my little sister arrives.
Other none conventional things we've tried are a bit more in the "if it's doesn't do any harm, what do you have to lose" category....I'll tell you about Daddy going to see Braco's Silent Gaze in the next blog.
Till then...I continue with all my therapies but I think food therapy is the most fun!
Hi everyone...it's been a while since I last posted....sorry!
I've been busily getting in shape and ready for Spring Break. Mommy got me a nice bathing suit...not your hoochie mama...Girls Gone Wild type but a more elegant Chanel look...Daddy breathed a sign of relief that it was a one-piece but raised his eyebrows when I was about to put on the shoes with the clear heels. I've just got to do a few more leg lifts that Uncle Timo taught me and I've have those buns of steel.
So what has been happening since the new year....lots!
Grandma and Grandpa from Canada came to help and stayed for over two months....they left in early February and before they left, Grandma's little sister Great Aunt Angela and Great Uncle John drove up from LA to visit. Daddy went to work and when he got home his second Mommy showed up with lots of yummy food.
The other reason I haven't posted in a while is because Mommy decided we needed to do another renovation, add another bathroom and make the nursery bigger before my Little Sister arrives....whoops! Did I just write something I was suppose too? Well the cat is out of the bag...Mommy and Daddy tried to keep it a surprise but I am getting a little baby sister for my birthday. I think Mommy and Daddy pre-ordered her so I think she will be arriving early. I think she is suppose to arrive early May but hopefully not as early like me but we'll definitely be Irish Twins....Daddy always wanted to have twins. We are taking suggestions for names....right now lil' sis is known as "Tiny Baby".
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We have to thank Uncle Richard, Auntie Cecilia and my cousin Vincent (aka Momo) for putting up with Mommy and me for two weeks and letting us stay with them in San Jose during the renovations. While I was down there I went through Camp Chung...it was sort of a boot camp but it got me on a regular sleep schedule and my gas problems got better when Auntie Cecilia introduced me to a new bottle system...Playtex Drop-In. I have to say they are much better than Dr. Browns...my colic episodes decreased dramatically. The best part of Camp was I got to try some new solid food...yogurt! Nothing like some good cultures to get the bowl motility to spring into action....stock tip for everyone buy Procter & Gamble stock...I doing my part for their Pampers revenue numbers.
I've also been spending lots of time doing my therapies...I'll do another posting soon giving you an update to my health progress. Mommy and Daddy have been tirelessly researching and taking me to all types of doctors and therapies. We are trying various treatment modality from western to eastern medicine and a few unconventional options. Don't worry...Daddy is doing all kinds of research and won't let me try anything too kooky...our philosophy has been to keep an open mind and have some faith...as long as it doesn't have any potential for serious harm we analyze and evaluate the risk benefit ratio.
