Confessions

In my previous life before children and even before being married, one of my first jobs was working in a small company in the accounts department. My boss, Julian really took a liking to me and wanted to teach me a lot about accounting, but being a small company he didn't pay very well and was very hands on with all that happened in the business. He wasn't the nicest person on the planet and if anybody messed up he would shout at them a lot and would be really mean, all the staff would sit in the lunch room and complain about him, then he took our lunch room away!

Julian and his wife had a difficult time having children, they eventually adopted a beautiful little girl, she was blond with blue eyes, everybody loved her, especially Julian. They did everything for her and even at the age of 4, she was having tennis lessons. One day while playing on the tennis court with some other children, a thunder storm came over suddenly and all the children ran to the side of the tennis court and found shelter by a brick tennis wall (one that you practice on). The wind had picked up and blew the wall over, right on top of the children. They were all rushed to hospital, two of the children passed away from their injuries and the other two including my bosses daughter had severe injuries including brain injuries.

We were all in shock at what had happened, how could this have happened? Julian was a mess, but he still came to work, through it all and shouted even more at everybody! At the time I thought well "see bad things happen to bad people" and in a way I was glad this terrible thing had happened to him because he was such a mean person.

I know now that bad things don't only happen to bad people, how naive, young and stupid I was, no parent should ever have to go through something like that! No parent should have to see their child suffer or hurt, I am deeply saddened by the person I used to be, how could I have thought those things? Until I became a parent and even more so now that I too have a special needs child, I could not comprehend what complete and utter sadness, anger, frustration, guilt, rage , mourning my boss must have been going through.

Bad things happen to good people too, and its how we react to these bad things in our lives that can make us better people, but until we walk in the shoes of those who have experienced having a child that has been hurt, ill, suffering, delayed, brain injured, disabled etc, we cannot understand what they are going through.

I left to go work for another company soon after this all happened. Julian begged me to stay but I had made up my mind to leave so I did. He phoned me at my new job, I was a credit controller ( so I was in charge of making sure that all the suppliers were paid) he played a trick on me by pretending to be an irate supplier and saying that they hadn't been paid yet. Then he started to laugh, then I knew it was him. I didn't hear anything from him after that. I then heard from a friend that Julian was diagnosed with advanced lung cancer, to this day I am not sure what happened to him, may be he is in heaven watching over me laughing, saying "See now, you know how it feels!"

Summer in the OC

This week, here in Orange County, California, we have been enjoying the hot weather, my husband took a few days off work, and we had a mini stay-cation and we went to the pool and chilled it was great.

This year its seemed like summer would never get here it was warm but the June gloom seemed to stretch into July and then also into August but this last couple of weeks the weather was glorious, and we took full advantage.

Annabelle had two weeks vacation from the school she goes to ICEC (Intervention Center for Early Childhood). She has been going to ICEC since she was 7 months old and it has not only been great for her but it was a life saver for me to be able to interact with other parents of special needs children. We are very lucky and grateful to be living in this beautiful part of the world.

Our first DME

If you are wondering, DME stands for Durable medical equipment (welcome to the world of special needs acronyms). Yes it arrived today! After months of waiting, begging and pleading that we needed a bath support for Annabelle it came yahoo! We have been using the Primo Euro baby bath ( 0-24 months)(see picture below), up till now and it has been great because it is one of the largest baby baths on the market and she most probably still fits in it for a few more months but because she is getting longer and longer she will outgrow it soon.

Now we have our new Columbia Medical Wrap-around bath Support, it would set you back $650 new if you bought it, but we got it thanks to Insurance and Medi-Cal.

And here's Annabelle modeling her new bath support she usually takes a while to get used to anything new but she was loving her new duck that came with it, that she didn't notice the new bath support. Score!

Annabelles Angels email update

Below is the email that I sent out recently to my dearest friend Zen the organizer of Annabelle's Angels to send out to all that contributed over Christmas to Annabelle's Angels Fundraiser.

Hello Annabelle's Angels
You are all most probably thinking what's happened to Annabelle and her family? And what did they do with all that money we raised for her? Well you'd think it would be an easy task spending $12k, especially on therapy, there is always loads of people out there ready to take your money and promise "a miracle cure", and most therapies are really expensive, so we were careful in our research and took the words of other parents in consideration, so we took quite a while to decide on what were the best therapies we were going to pursue for Annabelle. At first it's like a big jig saw puzzle, putting pieces together, you have to figure out how to help your child and not every therapy works the same for every child, and with us not even knowing a diagnosis yet, makes the job even more difficult. But we eventually decided on these two therapies to add to the existing ones we already do, hyperbaric oxygen therapy (HBOT) and G therapy. So all the money that was raised is being used directly for therapy for Annabelle.

Another cool thing that happened with Annabelle Angels a local mom who also has a special needs child contacted me and helped us to get qualified for Medi-cal so that any co-pays that we incur with medical costs will be covered by them, which has helped a lot.

With typical children they reach "milestones" but with special needs children we say they reach "inchpebbles" because their development is a lot slower. But Annabelle has been reaching a lot of "inchpebbles" this year, thanks to all of your prayers and your contributions to help raise money for the extra therapies. Once again thank you so much.
God Bless you
Love
Sandi, Martin, Matthew and Annabelle

"Inchpebbles" Annabelle is prop sitting more and more every day

Healing "outside of the box" Friday

You know how they say you have to "think outside of the box" , well my approach to Annabelle and my families health is healing "outside the box".
All my life I have always looked to find alternative remedies to fix ailments, mostly because traditional doctors prescribe medication to treat the symptoms and not the cause, and along with taking that medication there are usually many side affects that possibly could happen that could be worse than the initial problem you had in the first place.
Like when Annabelle was 2 months old and she started arching back and not feeding, her pediatrician at the time (not any more we didn't go back to her) prescribed prevacid for Annabelle, she said Annabelle might have reflux? Without any other tests to confirm this. Well Annabelle was on the medication for 60 days things didn't get any better things just got worse her poops became diabolical green mucus I consequently found out what a strong medication it was and that it contained maltodextrin (corn) in it and Annabelle was allergic to corn which caused the upset tummy. We were glad to have taken her off the medication!
Well where I am getting to is this, over time I have found different things that help and I am going to start posting them, I am not a doctor so please check with your doctor, if you please before trying any of my suggestions but most of them should be harmless with no side affects.

Have you got a wart, instead of going to the doctor to have it burned of only for it to grow back a month later take a square of banana skin and put the fleshy side down over the wart, now place a bandaid over keep it there as long as you can usually a day would be good, your wart should disappear shortly.

When I was pregnant with both my children I suffered from hemarroids (painful) I tried all sorts of creams from the pharmacy nothing working for any length of time then I came across a treatment, grated potato, if you want further details just leave me your email in comments and I will email you details, I don't want to get too graphic on the blog

Got a headache instead of running to grab the tylernol grab the fleshy part of your hand, the part between your thumb and pointer finger pinch it as hard as you can then massage it, your head ache should go away shortly.

Is your child a bit hyper, do you want to calm him/her down? Brew some chamomile tea and cool then replace their normal water they would drink during the day with the tea it should calm them.

I intend to think of some more soon and for this to be a regular post on this blog, if you know of any that you would like to share please share by posting in the comments I would love to hear about it.

ABR Summer Satelite

We just did our 6th training session of ABR therapy, a trainer comes to a California Satellite from Montreal Canada,  ABR Center, to train parents on how to do ABR therapy on their brain injured children. We started ABR when Annabelle was 15 months old, every session we get new exercises to do on Annabelle. ABR stands for Advanced Bio-mechanical rehabilitation, ABR is a hands on, time intensive, non- invasive, passive therapy that builds and strengthens the musculoskeletal structure, smooth muscles and fascia, which is the connective tissue that surrounds muscles and permeates the whole body.

ABR's objective is to halt and even reverse musculoskeletal distortions which hinder motor functions in the brain injured child. ABR is the only approach that does not focus on "managing" the child's limitations or take into consideration the brain injury. The sole  aim is to "reverse" poor mechanical integration in order to permit spontaneous development of movement. As long as there is incorrect structure there will be an absence of or incorrect movement.
Upon brain injury, tone of the smooth muscle and fascia decreases. Collapse of this internal volume leads to collapse and distortions of the surrounding layers (bony skeleton and the skeletal muscles attached to it)

Jaw Skull division Manual exercise

Ball Rolling Exercise

Machine set up for "shoulder and hips" exercise

I first learned about ABR when I was browsing for books about CP on Amazon and I read a negative review about a book  Sheri Walker said this "This was the first book I bought when my grandson was diagnosed with spastic diplegia. I found no hope in it and continued looking until I found Advanced Bio-mechanical Rehabilition. Their web-site is www.blyum.com. We have been doing ABR for six months and the changes are miraculous. Finally something to actually help our kids physically instead of teaching them to deal with less and less movement as they age" This review really sparked my interest "Thank you so much Sheri Walker" this lead me to go to Leonid Blyum's website, he is the "brain" behind ABR.

Then I was talking to a friend who also has a child with CP and she had also come across this therapy and she told me about Bird on the street's Blog and how Katy was doing ABR therapy on Charlie and she had documented everything. Well I couldn't stop reading, I fell in love with Katy and Charlie and all they do, and I am still addicted to her blog. 

We have 3 different types of exercises we do on Annabelle the first we learned in Montreal Spring '09 was the manual exercises, secondly in Summer '09 we got the machine, the bladders are placed on Annabelle with wraps and the machine applies pressure.  Thirdly in Winter '10 we were taught the newest technique ball rolling. I aim to do 3 hours of manual, 1 hour of ball rolling and then 10-12 hours of machine a day/night.

With the use of tools slow, light pressure is applied to various parts of the body, the muscles that are exposed to this constant external mechanical stimulus will remodel itself in response to this stimulus it will lay down more fibers so that this area becomes stronger. 


We have seen so many changes in Annabelle because of ABR but that is material for another post.

New machine set up "occipital"

Manual ABR "Top of shoulder"

Vitalstim update and a Great recipe

It has been 2 months since we stopped Vitalstim therapy, to catch up with the story check out my previous 2 posts here and here.
Annabelle is still eating well and has put on a pound in the last 2 months which is really good seeing that she pretty much stayed the same weight from Feb- June
If you are stuck for ideas for something to cook tonight, here is a great recipe for Turkey meat loaf! Because Annabelle has allergies to the following foods gluten(wheat, rye and barley) corn, dairy( milk and cheese) soy, tomatoes and eggs it is always a challenge to find recipes that taste good and accomadate all her allergies. This particular recipe was given to us by one of the vital stim therapists at CHOC, and has become one of our families favourites, try it! It might surprise you how good it is! We usually double up the recipe and freeze one to use later.

Turkey Meat Loaf

1 medium onion, quartered
2 carrots, each cut in 2 or 3 pieces
1 handful spinach, washed
1 1/2 pounds ground turkey ( if you are English that's minced turkey)
1 cup cooked quinoa ( pronounced keen-wah)
2 tablespoons dried thyme
2 tablespoons chopped fresh parsley
1/2 teaspoon ground sage
1/2 teaspoon sea salt
4 tablespoons organic ketchup (we leave this out but you can leave it in if you want)

1. Preheat oven to 375 degrees combine onion, carrots and celery in a food processor and pulse until roughly chopped (do not purée) transfer to a large bowl.
2. Place spinach in food processor and pulse until finely chopped. Add to onion mixture. Add remaining ingredients to bowl and mixed with fingers (here's where you can get your child/ren to help with the squishy part combining all the ingredients with their hands). Form into a large loaf and transfer to a 9x5-inch loaf pan. Brush with additional ketchup. Bake for about 1 hour, cool 5 minute before slicing. Serve with roasted sweet potato batons.

Not just the girl next door

Well the saddest part of us moving house became apparent yesterday when our ex-neighbors contacted us, they had been out of town on vacation when the mold saga occurred and we had moved by the time they came back.

When their daughter Siyah found out that we had moved she began crying,  every day Siyah would call from her gate "Matthew,  Matthew,  Matthew" and my son Matthew would run round to their house and play.

She loved Matthew and would include him in her prayers at night. She had a small crush on him to say the least, she was devastated to find out we had moved, well to be more accurate that Matthew had moved.

Living in a cul de sac was great because all the children would play, ride their bikes and scooters in the street. Life was good until the bitter sweet twist of fate, mold fate, wreaked havoc on young love aaahhh........

Luckily we have only moved about a mile away and I am sure we will have a play date soon.

The Feldenkrais method

Have you ever read a book that completely changed your direction in life, well I did, a book that I got from the library (don't you love libraries) called Uncommon voyage by Laura Shapiro Kramer. It is about Laura and her son Seth who has cerebral palsy and their journey through various alternative therapies after the traditional therapists had not given him much hope of walking, talking etc. The reason I read this book all started because even though we didn't have a formal diagnosis all the therapists Annabelle was seeing all said she moved like a child with cerebral palsy so I wanted to find out as much about it as possible and stumbled across this book, I am so glad I did.

After reading this book it inspired me to find alternative therapies for Annabelle, one of the therapies was The Feldenkrais method. It was instrumental in helping Seth walk, he did intensive sessions with Anat Baniel every week.

With a typical child they are what is called "incidental learners," they learn how to do things through small incidental movements, they don't just learn how to sit it is a progression of small movements that take place over time and eventually they are sitting. But with an injured child these small incidental movements just don't happen by themselves so the map in their brain doesn't exist to get to those positions.  Comparing traditional therapy to Feldenkrais is like these 2 analogies, as Marcela so adequately describes in her post on ABM going for for a drive in a car if you are the passenger in a car and somebody drives you from A to B you are less likely to remember how to get there - this is like traditional therapy, a therapist takes the child and puts the child in a seated position the child never learns how to get there himself. But if you are the driver and you drove from A to B after a couple of times going the same directions you will have no problems finding your way - this is like Feldenkrais it maps the routes in the brain to find the right paths to movement. This is why I love Feldenkrais Method for my child.

This lesson was with Elinor at the beginning of the year

I was looking for a practitioner close to home (Annabelle was never good at long car journeys) that is when I found Elinor, in March '09 and within 5 weeks of seeing Elinor once a week Annabelle was commando crawling short distances (the move looked like she was swimming as her arms would get trapped at the side of her body and she would roll to free them). Now after more than a year of seeing Elinor, Annabelle is still learning new ways to move.

A Lesson with Elinor July '10

We have moved!

2 large containers of Lysol wipes

3 guys with large muscles

2 parents in law

2 ultimate Acia smoothies

1 x-large pizza

40 boxes from home depot

1 big ass U-haul truck

8 bags of stuff for charity

12 bags of trash

1 wonderful husband

1 great 6 six year old son

And 1 gorgeous Annabelle

That's what took us to move. We are now in our new house and Annabelle is loving it, our previous house was 2 levels, this house is only one level. So the first thing she did when she woke up was to crawl from her bedroom to the kitchen (obviously she needs me to get her out of her crib) but she could not have done that in our previous house. We are loving our new home.