Annabelles Angels-with God all things are possible. (Matt.19:26)

Burnt out

2011-09-02T17:43:00.000-07:00

Moving country is a one of the big stressful things you can do in your life, it's up there with getting divorced and losing a loved one. Before we left California I was running around like a headless chicken trying to get in as much as possible (that is therapies). Just to list them, 2 times Feldenkrais a week, 1 times osteopath a week (all the way down in San Diego), NAET allergy elimination, we had started this in December after a very good friend convinced us that this would be very good for Annabelle to help her get rid of her allergies and help her absorb her nutrients better we did over 20 sessions with Dr Devi the founder of NAET. We were doing ABR 3-4 manual hours a day and 10-12 machine hours, HBOT 1 hour dive every week day up until 2 days before we left California. We had more blood and urine tests done through the environmental specialist doctor and had a consultation over the phone a week before we left CA. Its quite a list of therapies we squeezed in before we left CA.

We then moved to England and I was given the task of remodeling our new home. Then we discovered mould in the house this devastated me it felt like the mould had followed us from California and we couldn't get away from it! I know mellow dramatic! We eventually got through that moved into our new home, and then I get the email from Blue balloon that they had a cancellation and would we like to come do an intensive therapy week with Simona di Marchi well this is what we thought would help Annabelle the most,and the following week Annabelle and I were on a plane to Toronto Canada.

We did the CME intensive therapy course in Canada (details will follow I promise). Just Annabelle and I went my husband stayed back in England and looked after Matthew our son,took him to school etc. But I felt like I was losing it and not just my brain which I incidentally lost having my first child. But I kept having panic attacks, losing things like my passport/hotel room keys then finding them after huge a panic attack, heart racing brain fuzzy, I was not in a good way. The best I could do was try to keep it together until Annabelle and I got home.

We got home and I now know how it feels to be truly burnt out, I'd been burning the candle at both ends as they would say. They always say when you fly you need to put your face mask on before you put on your child's, look after yourself first otherwise you are going to be no good to anybody else! Well that's what I was doing I was free falling out of the sky my plane was about crash and I hadn't even put my face mask on! I was too busy looking after everybody else.

Well I've taken 4 months off I feel like I checked out of the hotel crazy that I'd been staying in. The place that was filled with therapies and doctors! I decided that I needed me time to get back some of me so that I would have something to give again. I started to do something that I'd forgotten that I loved to do before we moved to California, gardening! It is my escape place, the place where I don't think about Annabelle or therapies or doctors or mould or anything really, just digging in the dirt.

It's amazing really life does go on even if you don't have full control over everything. And sometimes if you loosen your grip on things that you have in your control they actually have a chance to flourish on their own and find their own way through.

Go ahead and create some time for yourself especially if you are a parent of a special child.

We're going to Canada!

2011-04-30T15:53:00.000-07:00

Annabelle 15 months old

We are off to Toronto, Canada tomorrow morning, just me and Annabelle the photos above are from when we were there last when Annabelle was 15 months old. We went to do an intensive therapy session for 2 weeks and on the first day Annabelle was standing and walking in Simona's hands, the therapy is call CME short for Cuevas Medek Exercise and we saw an amazing therapist called Simona DeMarchi at Blue Balloon health services she is the most qualified therapist under Ramon Cuevas the inventor of the therapy.

We haven't focused on this therapy as much as the other ones we do with Annabelle but we feel that she is stronger now her body seems to be recovering from the mould toxicity, she is eating better, she now can pull herself up to tall kneeling, she can hold onto a bar and stand for a few seconds by herself she can crawl on all fours ( not just commando crawling), So she has been doing amazing things in the last few months and we feel that re-introducing this therapy again will help her development along.

The realization that we need to go back to alternative therapies came when one night I sat crying because I was confused. Do I take the easy road and just go with traditional (which we have not done any traditional therapy since last year June) or the hard road alternative? We have come to England and everything is great here the system supports parents and children with special needs, and you could not ask for a better system everybody is very positive and people bend over backwards to help us out, but when the PT started to mention standers and AFO braces and Annabelle having to get casts put on her legs to get these. Everything we have been working towards the last 2 years with ABR and other alternative therapies. Traditional therapy just goes against the grain of what I believe is possible for my child. To be strapped into a stander half an hour a day OR do exercises that builds pathways in the brain to enable the child to stand on their own??
I think I choose the later, so we will have a week of intensive therapy with Simona and hopefully will come back with lots of new exercises for Annabelle to do.

Annabelle Crawling on all fours

Love this!

2011-04-30T15:30:00.000-07:00

Love Katy's blog this post is one of her best in my humble opinion. Follow this link.

All I Ask

Trip to the Zoo

2011-04-05T14:24:00.000-07:00

The Carroll children center sponsored families with special needs children to go to Marwell Zoo for the day. So we thought we would join in on the fun, and considering the Zoo is only 15 minutes drive from our house it was a fantastic day out.

In the middle is this beautiful stately home, Martin and I loved it especially after taking it in turns pushing the wheel chair around the 3km zoo or holding Annabelle up so that she can see the animals we were both shattered and just wanted to have a nap on the grass.

Matthew was in charge of the map and finding the animals.

We found giraffes these were Annabelle's favourites!

We found some sleeping camels, and a lots of sleeping animals that we didn't take pictures of!

We even found some fish.

But the favourite thing we found was this swinging monkey.

Lets zoom in, no its Annabelle, she loved this swing.

And after a hard morning playing in the park and finding animals theres nothing like using my sisters wheelchair to rest on and eat my snack!

The whole family enjoyed a well deserved day out!

Imagine

2011-03-31T16:38:00.000-07:00

Imagine all the people coming together as one
All to discuss a child that needs them
To collaborate and plan
What's best for that child for the next months
And make sure it gets done
You may say I'm a dreamer
But I'm not the only one!

Imagine no medical insurance
No authorization needed
To get the treatment for a child
No money changing hands
You may say I'm a dreamer
But I'm not the only one!

Yes today we (Annabelle and I) went to a meeting, all in the same room together at the same time, all the people who will be working with Annabelle for the next 6 months.
Physical therapist
Occupational therapist
Speech and language therapist
Pediatrician
Key worker
Portage
Head teacher of her new school
Me and Annabelle
I couldn't believe it! And each took turns in speaking about what they are going to be doing for Annabelle over the next 6 months, and how they can work together to achieve this, and what equipment Annabelle needs. It was wonderful and the pediatrician was right there too, so if any medical tests or referrals were needed she was right to hand. Not like in California it would take months before a report was sent to the pediatrician before we could get him to sign off on things then months for it to be sent back. There was no insurance authorization to wait for. And I didn't have to pay a single penny to any of them not even a co-pay for the doctor!

Simple as this Annabelle needs help with feeding she first needs a supportive feeding chair - OT is organizing chairs, OT and SLT will then observe Annabelle in new chairs (note 1 for school and 1 for home) and then devise best plan for helping Annabelle with feeding.

Then I had a chance to ask any of them any questions or bring up anything that I thought Annabelle needed. Such as Annabelle is in a crib/ cotbed at the moment and the other night she wriggled her foot between the bars and couldn't get herself free she started crying in the middle of the night I had to help her get free and help her get back to sleep. Also now that she can pull herself up to kneeling we are afraid she will tip out of the crib, anyway the OT is coming out on a home visit next week to help us find a solution. Wow I wish things were like this in California!

So the school that we had the meeting at is the pre-school we hope Annabelle will go to in September. She is eligible for 15 hours a weeks preschool at the moment but unfortunately all the spaces are full up until September. Until then we are going to their Smart Start group which is a parent accompanied class, which I am happy about because we both get a chance to settle in and get to know the school and hope the separation anxiety won't be too bad in September for both of us.

Back from the dark ages

2011-03-31T14:55:00.000-07:00

Three weeks without internet, it's not an experience I want to go through very soon again. We moved into our house but didn't realize how long it would take to get connected up to the internet - 3 weeks! We must live out in the country now or something? The hum of the modem was replaced with the beautiful songs of red breasted robins while I hung out the washing on the line outside, daffodils have sprung into bloom everywhere and spring is in the air. Trees full with pink white and yellow blossoms. I've had time to notice all these things instead of my eyes and ears being stuck to a computer screen.

I did try to get hooked up once, I found out that there was free wi-fi down at the local library so I took the Ipad and went down there with Annabelle took her inside in her stroller, got the user name and password from the librarian and went to the childrens section were they have great selection of board books and bean bags for children to sit on. So I get her out of her stroller and put her on a bean bag with some books around and I proceeded to log on to the internet getting ready to update myself on all the blogging I had missed out on for weeks and may be even muster up a post.

I got stuck into reading one of my favorite blogs, I don't notice that Annabelle has crawled off the bean bag and is on her way to the book shelf and is reaching out to pull the books off the shelf, next I know, she is screaming her head off, the books fell on top of her head. Being in the library and having to be quiet because people are reading and a screaming child is not what they want in there, so what do I do? I grab Annabelle and leg it out of there.

Needless to say we haven't been back to the library since!

Well now we have internet and I have so many updates on what has been happening over the last couple months but we now have satellite TV and House is on tonight and I have been deprived for 2 months so you guys have to wait till later. Sorry!

What's behind the green door?

2011-03-08T14:32:00.000-08:00

So you know we have been doing a bit of work to our house while we waited for our stuff to arrive from California, right? When I say a bit its an under statement here is a list of what we have accomplished in 5 and a half weeks - as our plumber says one of the quickest refurbishments he has ever seen.

We ripped off wall paper of the walls and even off the ceiling.
We then found mould in the en suite bathroom which we ripped out and had to replace stud walls and floors and ceilings in the room.
We had the family bathroom window enlarged and a brand new window placed in the en-suite bathroom.
We had the window in the dining room changed to french doors.
We had new replacement windows fitted throughout the whole house.
We had the main bathroom ripped out.
We had the house painted throughout.
We replaced the 2 bathrooms with new suites.
We had a new back door fitted.
We had a new front door fitted.

We had demolished the front and back steps and made it into ramps so that the house is wheelchair accessible.

Now we have a new blue front door and a ramp that we can push Annabelle in her wheelchair up into the house.

Tonight the carpet fitters are busy in our house laying new carpets, tomorrow we are going to the house to finish any last minute jobs like putting up curtains poles and cleaning. And then our shipment is going to be delivered on Thursday morning and finally we will move into our house! After 3 long months of living out of suitcases we can finally unpack and settle down.

HBOT summary

2011-02-25T15:52:00.000-08:00

Before we left Orange County, California we squeezed in as many hyperbaric oxygen therapy sessions as possible, bringing our total to 138 dives since we started in May 2010. Reason being we saw such great results since we started. Out of all the alternative therapies we looked into doing for Annabelle I was most sceptical about HBOT I thought it was very expensive and that the improvement weren't consistent from child to child. There is not much information out there about how it works and how it can help brain injured children. Well I was very misinformed, luckily the doctor we saw said to us to just try 20 sessions if we saw improvements in Annabelle then we would know then that HBOT will help her, if we saw nothing then HBOT won't help her. It was as simple as that.

Well we tried 20, but it didn't take us 20 dives to realise that HBOT was going to help Annabelle, after 5 dives her hands that were permanently fisted started to open.

She gained more control over her hands and could hold onto things she couldn't before. It seeme like a light had been switched on in her head she would concentrate better at preschool, could match picture to objects, recognise colours. We were so excited after the first 40 dives we decided to do another 40.

She started to commando crawl around the house even navigating up a step then down it too. She became curious about her surroundings looking into cupboards. Every time we did another 40 session we saw more imrovements happening.

We were so happy with California Integrative Hyperbaric Center they were great with helping us with anything we needed and truly made us feel at home while we were there, it truly is place of Grace just like its name says. In California we were lucky, it was really easy to do the sessions we lived only 10 minutes drive from the center. We have brought Annabelles hood with us and we are hoping to find a center here in England where we can get HBOT for Annabelle in the near future.

New Tricks

2011-02-21T14:19:00.000-08:00

Annabelle has been really happy discovering Nanna and Grandad's house. While I have been busy sorting our things at our new house she has been happy to stay with Nanna and play, but she also has gotten up to mischief and has found out she can do new things too.

She sits in a W-sit position then she gets up on her knees then she reaches out to the chair and pulls herself up to the chair on her knees.

Then she wobbles a bit until she stabilises herself.

Then she is very proud of herself!

"Look at me Mummy I'm up here!"

MIA

2011-02-19T14:03:00.000-08:00

Yes we have been MIA for a while this is the reason why!

No it's not a new type of pregnancy test!
It's a mould test and it reads positive!
Yes we have the dangerous type of mould in our new home! It was discovered when my decorator pulled the wallpaper?? Yes wallpaper off the ceiling? and a big patch of mould was found above, which originated from the shower in the en suite bathroom upstairs. We called the previous owners to ask them about it they said they had a leak 5 years ago and they had fixed it? Clearly not well enough! We can only assume that they also had other leaks in the shower, because when we pulled out the shower and all the tiles, behind the walls were all covered in mould. We hadn't planned on redoing the bathrooms but this has forced us too.

When we first discovered the mould a feeling of complete panic came over me, I stood there looking up at the mould on the ceiling in complete disbelief, like how could this be happening to us for the second time?
Part of me wanted to run away, another part of me wanted to cover up the mould and pretend I never saw it, but the part that won decided that we have to first test if its the toxic mould that we have, then have to clear it all away and rebuild the damaged area so that we have a clean home to move into, for our whole family recovering from our previous mould exposure.

We first had to find somewhere that tests mould samples we looked online found somebody but they could only come out in 2 weeks time that was no good. We continued our search we eventually found on Amazon this test kit from Germany, you do it yourself, it was £40.00 and you get results in 5 minutes it tests for the 2 main toxic moulds Stachybotrys and Aspergillus niger and just like a pregnancy test with the pink lines come up if its positive. Once we knew it was positve we have been very carefully remediating the area, pulling out, bagging and disposing of any of the affected area. We have also invested in a whole house air purifier that purifies the air of mould, vocs (volitile organic compounds), bacteria, pollution, smoke, bad odours, well just about any nasty substances in the air, this thing has got 4 different filters!

So this last week has been devoted to removing all the affected areas, today the last bits were removed. So now the builders can start rebuilding what was removed and we can put a new bathroom suite in (at least there is some perks to this whole ordeal I get a new bathroom!) We are still living with Martin's parents while all the work is being finished off, I am not sure how much longer they will put us up, hopefully we can get the house sorted out soon!

Jet Lag and an update

2011-02-03T01:44:00.000-08:00

Jet lag is the funniest thing if you have never experienced it, it is worth a trip around the world to see what you are missing out. So inside our bodies seemingly we have a body clock and it gets used to waking up at a certain time, going to sleep at a certain time, eating meals at certain times. And when you travel across the world in an east or west direction and the time zone changes more than a few hours and the time changes that you would normally be doing those things your body takes a while to adapt to the new schedule so it will be 1am in the morning and you will wake up and your body will be thinking I am hungry I want dinner!

So we arrived in the UK safely after the whole family was upgraded to business class (just in case you hadn't seen my post on facebook) so we had those seats that fold down flat so you can get some sleep. Well I did not get a wink of sleep I watched Social Network and Eat pray love both great movies and before I knew it we were landing, but instead of it being 2am California time it was 10am. Luckily the homeopathic jet lag tablets got me through the day.

We crashed at 7pm that night and Annabelle woke up at 1am and the whole week she been waking up at really odd hours not going back to sleep. We give her 2mg of melatonin it helps her go to sleep but doesn't always keep her asleep. So hopefully she adapts to the new time zone soon because I am not sure how long I can do this for. Isn't lack of sleep a form of torture!

Well I am organizing a lot of things this week before our stuff (what was left over after we cleared everything out) arrives from California, we are trying to redecorate our new house. We are living with my parents-in-law while the work goes on. Lots of wall paper has been removed, carpets ripped out, and then a fresh coat of very low VOC paint put on the walls, so I am having fun choosing colours. (yes that's the English way of spelling that)

Then we are trying to get Matthew into a school you have to choose three in the area and send the application in (because he is starting mid year there might not be a space at the nearest school to us) so please prayer that he gets into one of the schools in my top three. We are homeschooling him until he gets in, which mainly consists of doing a few pages of the work book his old school gave us, and the some reading, then the rest of the day playing games with Nanna and Grandad. Oh how I love having grandparents around.

Then Miss Annabelle I have called the Hampshire county council children services and they are going to send somebody around to assess Annabelle. They also said I should call the Department of works and pensions, which I did and file in a new claim for Disability living allowance. So we should find out what this means for her and what kind of therapies we will get. I will keep you posted.

Hasta la vista California!

2011-01-28T22:23:00.000-08:00

Today we are selling our car, it's Matthews last day at school, and we are packing up to go back to England tomorrow.
Well here is my list of the things I am going to miss and not miss about California. It feels like I've been on vacation for the last 4 and a half years sometimes the vacation was from hell but mostly our dear friends helped us through, but now it's time for us to go home, enjoy my list.

MISS
All the good friends we have made.
Saying awesome in every sentance, people in England will just think you are a wack job if you did.
Beautiful eucalyptus trees on the walk to Matthews school.
Great sunshine most of the year round.
Being able to wear flip flops 80% of the year.
Swimming pools and spas at our disposal.
Beautiful snow capped mountains that are just 2 hours away from a sunny Beach
Trader Joes.
Target (I know sad!)
Starbucks on every corner
Drive through ATM's
Being close to great alternative therapies and doctors for Annabelle.
Cheaper gas.
Car pool lane
Great friends oh said that one I guess going to really miss them!

Won't MISS
The medical system
LA haze that you can't even see the mountains.
CCS (California children services)
Regional centre
Being so far away from family.
Having to be an advocate for my child having to fight for every thing you get from the state.
Santa Ana winds
Earthquakes (we experienced about 5 small ones, thank goodness no bigggies)
California wild fires
Not having a back yard.
Scary seven lane freeways
Medical system oh I said that already I guess I really won't miss it!
Not owning our own home, this our new home in England. I am going to be seeing it for the first time on Sunday I can't wait.

Expectations

2011-01-26T22:50:00.000-08:00

Wouldn't life be great if those darn expectations didn't get in the way?

Growing up we are all fed with what life should, will, could be like when we grow up, we will meet our prince charming get married have 2,5 kids and a dog and ride into the sun set and live happily ever after. As we grow up and start living life we all find out that lifes just is not like this!

Society is full of these expectations if you do good at school you will go to university and will get a well paid exciting job, not always!

If when you get pregnant and do everything right, don't eat soft cheese, etc you will have a happy healthy baby, not always! (please what ever you do if you are pregnant don't read those what to expect when your expecting books, it never turns out the way they say it will!)

If you are a great wife and do everything for your husband attend to his every need he won't leave you for his much younger secretary, not always! (I think I have been watching too much Mad Men)

If you eat right, exercise regurly and generally look after yourself you will be healthy, and not get be ailled by what other people who don't look after themselves get such as heart attacks, strokes, cancer, osteoporosis, not always!

If you raise your child well, feed them well, give them everything they want, need, support them they will turn out to be well rounded adults, not always!

What I am trying to get to here is the reason we get so disappointed in life is because it doesn't always turn out the way we expected it to, what if we threw those expectations out of the window and just lived life to the full and rolled with whatever came our way.

The other day we had our last appointment, because we are moving, with Dr Frymann who is an Osteopath, at the Osteopathic centre for children in San Diego, we have been seeing her for a year she does cranial manipulation on Annabelle and when Annabelle is sick she gives her homeopathic medicine. We had a last consultation with her and her advice to me was "Expect Performance" there that word came up again, expectations.

When you are a parent of a special needs child you tend to lower your expectations because your child has never lived up to the typical expectations of a child and that waiting for things to happen is just excruciatingly painful so you place your expectations for your child in the bottom drawer to save your feelings. But may be Dr Frymann has a point you should "expect performance". If I had just sat back and did nothing and just thought Annabelle is the way she is and there's nothing we can do for her, I shudder to think what or where would she be today! Certainly a lot worse off?

My Third Birthday

2011-01-17T00:32:00.000-08:00

Annabelle turned three on Saturday, this is how her day went.

She woke up to everybody including Daddy (who has been away for 2 weeks and came back Friday night) coming into her bedroom to sing her happy birthday, this seemed to be too much for her and she started to cry so we all stopped singing and decided to open up birthday cards and presents, now this she liked alot more, she loved ripping the cards open then ripping the wrapping paper off her presents.

After breakfast we rushed to the hairdressers for Annabelle's first haircut, they really did a great job. Annabelle sat on my lap why the hairdresser carefully cut her hair, another hairdresser had to come over to hold Annabelle's head aswell, because she moves alot because of her dyskensia, the hairdresser did not want to cut her or stab her with the scissors. Then they put pretty pink flowers in her hair too.

Then we got home and got ready for the party, all the friends that we have made here in California were coming round for Annabelles birthday and also to say goodbye before we left for the UK. To keep all the children amused we hired the most amazing entertainer her name is Annie Bananie Balloon Storyteller she does balloon twisting and keeps the children engaged, cleaverly asking each child what ballon they want her to make for them, and then making the most amazing creations for each one, with soo much detail. Annabelle of course being the birthday girl got a princess crown and a wand.

She made butterfly wings, flowers, peace signs, monkeys, dinosaurs, bow and arrow, baseball and bat, a special ball game, football posts, princess crown, pirate hat and sword, a pin wheel fan, all the kids were facinated and watched intently at what Annie was going to make next it was great. She went from shortest to tallest and Matthew being the tallest got to go last she made him a jet pack, he loved it.

Then she taught them all how to make swords out of the balloon she gave them and then they went to the grass outside to have a sword fight.

Then it was time to have cake! And all princesses need a castle.........

I like to make my children their birthday cakes it has become a tradition in our house and Matthew now plans all year what cake he want me to make for his birthday he has had pirate ships, a dinosaur, under the sea cake, last year he had a milenium falcon from star wars cake. So I wanted to do the same for Annabelle, so the theme for the party was princess so I make a castle. She loved it! We all helped her blow out the candles.

But then when everybody started to sing happy birthday she did not like that again! I am not sure why she does not like that song.

All princesses need a crown so we got this wonderful crown from better than normal a shop that is on Etsy

We all had a good time eventually Annabelle crashed in bed after a great 3rd Birthday, all princesses need their sleep you know!

Graduation

2011-01-16T17:36:00.000-08:00

On Wednesday my little girl graduated yes graduated you heard me right, from ICEC Intervention Centre for Early Childhood. Here in California when a child with special needs turns 3, the funding for therapy goes from the Regional centre to the School district because Annabelle turned 3 on Saturday funding ends and we would have started at a state funded school district preschool on Monday, but because we are moving to the UK we decided not to go through all the assessments and meetings to get an IEP (Individualised Education Plan) from the School district because we would have just have to go through it all again on the other side of the pond in the UK.

We started in their infant program in Laguna beach when Annabelle was 7,5 months old. We had met a wonderful Mom at Aqua Therapy, that gave me the details of the program and after enquiring we started the program a couple weeks later. The program was my life saver at the time because not only do the children get therapy but also after the program they have a parent discussion time, where the therapists look after the children and the parents get a chance to talk to other parents with special needs kids and a trained family counsellor that leads the discusssions and everything from potty training to spouses to behaviour problems to sleep problems to doctors to depression to our trip to holland (if you have a special needs child you know what this means) get discussed.

The program for the children works like this, the parent stays with the child through the program and it starts off with circle time, all the children sit in a circle in cube chairs and then one gets to go up to the teacher and pick a song from the board, Annabelle got to choose the Apple song, then a soft toy apple is retrieved from the box and then the song is sung with actions.

Then the children are divided into 5 groups and go to different stations, a few examples of the stations are -sensory intergration, communication, pre-academics, fine motor, gross motor, oral motor, music, outside play and arts and crafts. Here in the pictures below we are at the outside station playing in grated soap, each week the teachers and therapists have themes to work by and this week was winter and snowmen so the grated soap was supposed to be like playing in the snow. It was great Annabelle loved playing in the soap and the feel between her fingers.

Then after we have gone through all the 5 stations and a snack break in between we then do closing circle with more songs and goodbye song but before we said goodbye they said goodbye to Annabelle and she graduated, they gave her a backpack to take with her to her new school in England with a tag on it with her name and on the other side "I am a proud graduate of ICEC". I had a tear in my eye saying goodbye to everybody we have met some wonderful people, other parents, therapists and have had some great teachers who have helped Annabelle progress. They all work so hard to help all the kids and parents.

All the teachers and therapists were all very interested in knowing what the services are going to be like in England for Annabelle and I will be posting about all our experiences over on the other side and seeing how they compare to California, so keep on reading, I will keep on posting.

I would like to say a big thank you to everybody at ICEC for all their hard work and support, you guys do such a great job.

Being Supermom

2011-01-11T22:34:00.000-08:00

We started the new year with my husband leaving us in California to go to the UK to start his new job, before he left we moved into a furnished condo, at least we are in one place until we fly back to England on January 29.

So for the last week I know what it feels like to be a single mom, I take my hat off to all those single moms out there doing it alone, especially those with special needs children.

Usually it would be a short walk to get Matthew to school now we have to drive to get there, Annabelle caught a cold and has been acting like a cling-on if I put her down she cries until I pick her up and hold her. While holding her I have to cook, clean, take the trash out, grocery shop, change diapers, homework, reading, bedtime stories, doing puzzles, bathing,feeding, brushing teeth and somewhere between all that get therapy in too!

look at the cool puzzle we did

And to top it all off I have the cold now too!

Friday Martin gets back from his trip, Saturday is Annabelle's third birthday and we have 18 kids and their parents coming over to celebrate. And I have a party to organize.

I do feel like Supermom at the moment, if I don't I won't get through this week!

Recently on one of the yahoo groups I read, somebody posed a question to everybody "what support do people get from their spouse" in regards to helping with therapy, around the house, support financially, decision making...... the list goes on. Well this has sparked much discussion, firstly one lady responded saying that the divorce rate if you have a special needs child is 94% (oh boy not very good odds) because of all the added stress that comes with having a special needs child, some said that their husbands could not accept that their child was injured and could not deal with it some had left, leaving their wives to look after the child on their own. Others were grateful that they had a supportive husband but were so focused on rehabilitating the child that they have forgotten how to have fun.

When my husband is away like he is now, it really hits home how much he does for us every day, reading every bodies posts I became so grateful that he accepts Annabelle for who she is, but also will do everything in his power to help her. That he is so supportive of all the therapies that I have suggested, that he financially supports us so that I can stay home and look after our two children. It doesn't mean we don't have our differences and we don't argue, we do, but we need to remember that we are both trying to be super parents to 2 very special kids.

Another thing I got out of the posts, is that we also need to look after ourselves, so that we can look after our children, like I haven't had a haircut for over six months, there just doesn't seem to be time and the money always seems to be spent on therapy, but anyway I decided because we are having a party on Saturday I am getting my hair done. We also need more date nights! and spend more time with each other as a couple, hopefully once this move is all over we will get more chances to do that.

Have you hugged your husband today? - Here's a virtual hug coming your way Martin (((( )))) I love you and miss you.

NEW and NOW resolutions

2011-01-01T22:01:00.000-08:00

A year ago I only had enough strength to make one new years resolution, and it was to start a blog, this blog in fact. The purpose was to keep all the wonderful people who had donated money to the Annabelles angels fundraiser updated on how Annabelle was doing and what we were doing with the money they raised for us. Little did I know that a year later I would have fullfilled that resolution and that this blog has become much more to me that I could ever have imagined.

At school I was always good at maths, science, home economics, accounting. I was never good at subjects like English, creative writing, art, I would just scrape through with just a pass. So the thought of actually putting words into a blog, being creative and people actually reading it scared me a bit. But I thought I would give it a bash!

Talk about being cathartic, a release, a way of getting all those thoughts in my head floating around and driving me crazy out there, it has been fanomanal!

And then there's the idea that possibly our blog could help somebody who is going through something similar to what we have been though and it could make their journey easier or point them in the right direction, or even ease there heart by knowing that they are not alone, because society is not the way it used to be where you have a village around to help you and support you, the internet is the village of our future.

I am so glad I fulfilled my resolution.

Well our 2011 is going to be full of NEW! I am open to the new that is coming into our lives. Our move back home we will find new doctors, new therapists, new systems, new schools, new house, new furniture, a clean start.

In 2010 we discovered what we were up against who/what we were fighting, then it turned into how we would detox the toxins that were in our bodies from the mold. Then we got into action and cleaned out our lives, simplified things. Now in 2011, there will be more detoxing and we are going to be running more tests on Annabelle to see if what we are doing is reducing the toxins in her body. Then we will be ready for the renewal the healing to take place in Annabelle, which has already started.

This year I hope for more strength, hope, joy and happiness, I have the wish to appreciate the NOW the every moment, not worrying about the future as much, as you do a lot when you have a special needs child, that every day I can bring laughter to my childrens faces. To be more present in the joy of every moment.

Well those are my 2 resolutions NEW and NOW. Very different from last year, but things have changed so much just in one short year who would have believed it? May be this blog helped heal my soul? What resolutions have you made this year?

12 Commandments of food

2010-12-28T23:50:00.000-08:00

I just received an email news letter from a nutritionist we took Annabelle to see last year.In her news letter she quotes these great food commandments, I thought that with the new year coming up they could be incorporated as part of our new years resolutions.

Michael Pollan’s “12 Commandments of Food” from his 2008 book In Defense of Food: An Eater's Manifesto.
1. "Don't eat anything your grandmother wouldn't recognize as food."
2. "Avoid foods containing ingredients you can't pronounce."
3. "Don't eat anything that won't eventually rot."
4. "Avoid food products that carry health claims."
5. "Shop the peripheries of the supermarket; stay out of the middle."
6. "Better yet, buy food somewhere else: the farmers' market or CSA."
7. "Pay more, eat less."
8. "Eat a wide variety of species."
9. "Eat food from animals that eat grass."
10. "Cook, and if you can, grow some of your own food."
11. "Eat meals and eat them only at tables."
12. "Eat deliberately, with other people whenever possible, and always with pleasure."

I particularly love no 10 and would love to have a little green house or vegetable patch in my back yard to grow all sorts of vegetables in, a person can dream!

Beach Therapy

2010-12-23T23:54:00.000-08:00

Aloha from Hawaii.

We cashed in our American air miles we've been saving for the past 4,5 years to get 4 flights and we've rented a friends 1 bedroom condo at a special price, so that we can spend Christmas on Kauai Hawaii. We most probably won't get the chance again to come round to this part of the world any time soon.

It is a truly amazing place and I think Annabelle is in love with the beach, the sea, the sand and the waves. We have been visiting the beach most days and doing our own form of therapy that Annabelle seems to like very much - Beach Therapy we sit on the shore and wait for the waves to come up and splash us and then she giggles with delight. It fills my heart with joy to hear her laugh so much.

We have a small palm tree in the lounge and have made it our Christmas tree. As you would expect back in Bethlehem when Jesus was born they too only had palm trees, I bet!

We have been eating good food and detoxing with good clean sea air. Annabelle and I had a spa morning in, we rubbed our whole body with rhassoul clay and let it dry, we even put it in our hair, then we showered it off, this detoxes by drawing the toxins out through the skin.Your skin feels so smooth afterwards.

Only 1 day to Christmas, there is much excitement, we are having a very simple Christmas only a handful of presents (can you believe Amercan charges $25 for each bag you check) so we couldn't bring too much with us. But Christmas is not all about the presents it's about remembering Jesus's birthday and being with the people you love.(sorry Mom I wish you were here too I love you)

Wishing you all a Happy Christmas.

DME # 2 aka Wheelchair

2010-12-19T13:34:00.000-08:00

It arrived! We started talking about wheelchairs with Annabelles PT in January after months of thinking about having my child in a wheelchair. As a mom you want to stay positive that your child will walk, and by getting a wheelchair I felt that I was giving up on that. But now I see that it's not the case, most typical children would be walking by a year old, 18 months at the latest, she was already 2 and not even sitting independently yet! I knew that she was soon going to outgrow all the "baby" equipment - highchairs, strollers that we use and we would need something that would suit her needs and grow with her. But a wheelchair is a hard pill to swallow for a mother.

We got into the wheelchair clinic with CCS in April, and by May we had her measured and fitted and it was ordered. It was crazy they only had 2 styles of wheelchair to offer one with big wheels and one with small wheels that reclined I chose the big wheels because then there would possibly one day be a chance that she could propel herself with her arms, with small wheels there would be no chance for that. But there were 100 colours to choose from (as if that was the most important thing about a wheelchair?) I dont get it! Then came the wait getting insurance to cover it! After one denial and having to send more paperwork through they eventually approved it end of October. Then the supplier waits for all the pieces come from all over the country then they assembled it here. After many phone calls chasing everybody we went to the wheelchair clinic last week to go fetch it.

I decided to try it out when we got home and walk down to Matthews school to pick him up, I don't know why but I felt like I was walking down the street with no clothes on it was a strange feeling, not that people were staring at us, I guess its just something I will have to get used to. I can't hide anymore, the wheelchair shouts out to everybody that my child is disabled. A few children came up to us at Matthews school and asked us why Annabelle was in the wheelchair, it threw me off gaurd as I hadn't prepared for questions I just said "that she was in the wheelchair because she didn't walk" they asked why she couldn't walk, and I said that we weren't sure why she didn't walk which isn't entirely untrue I guess I need to prepare in my head what my response is going to be to people who ask questions, I'm not very good at thinking on the spot!

We have been try it out and I must say it did help us get through LAX a lot faster gates open where before we would have had to stand in line. We got let on the plane first. But there has been some cons too I bashed my lip on it getting it out of the boot (trunk), it weighs over 40lbs! It has no suspension and you can feel every bump if you are on a bumpy pavement. All in all I hope this will help provide Annabelle with more support and that she can be more mobile as she grows.

Homeless

2010-12-06T23:34:00.000-08:00

We had our final garage sale on the weekend and God found good homes for most of our worldly possessions. Phone and internet get cut off tomorrow so I am now relying on 3G and our iPad to do posts. The few possessions that are left get packed up and shipped to England on Wednesday - this will take 6-8 weeks to get there, in the mean time we are living in hotels and furnished apartments till we leave for England on January 29th.

So before we get cut off here's some great photos of Annabelle on the beach on thanksgiving day.

So Thankful

2010-11-28T23:21:00.000-08:00

This thanksgiving week we have been in Morro Bay it was a vacation we planned long before we knew we were moving back to England. I was annoyed before going away that we had so much to do and going away would stop us getting things done, and that it wasn't good timing just before moving! It was planned to celebrate my father-in-law 70th birthday and Thanksgiving, together in Morro bay.

The Boys went fishing and caught a fish.

But this week has not been what I expected, it was great to get away from it all. My stomach has been in a knot with all the things that have to be done, things we still have to sell or give away and doing budgets figuring out if we can afford to get through it all without bankrupting ourselves. So to get away and take a step back from it all has really helped us see things clearer and relax about everything, things don't seem as bad as they did a week ago.

Annabelle sitting more and more

Having a special needs child is a bit like this, you constantly have this knot in your stomach about what the future holds for your child. You are so close to the everyday problems, in the thick of things, that you can't see an image of your child progressing, and seeing other children progressing can really make you sad and overwhelmed, such as when I saw Charlie from Bird on the street sitting up, the thoughts running through my head was real happiness for Charlie that he was sitting but sadness that Annabelle wasn't. I just couldn't picture her sitting up, it just seemed impossible at the time! I knew that we were doing similar therapies but that doesn't mean that your child will follow the same path. Sometimes you have to take a step back, and accept we are not in control ( even if you would like to be) away from all the therapies, the supplements, the doctors and relax! Then that image of your child progressing can form in your head. Your child can relax too.


Very happy to be on holiday with Nanna and Grandad

I have been exhausted constantly on the go from therapy to doctors to more therapy sometimes we just need a break.
I am so thankful for the time to relax and spend time with our family to create our future together and when you relax, and leave the things that are out of your control, the plan becomes clear.
Happy Thanksgiving everybody.

Banana love affair

2010-11-18T23:35:00.000-08:00

Yes my child is in love with bananas she will eat them for breakfast, lunch and dinner. She will even take her medicine with no complaints when its mixed with .. yes you guessed it.....bananas. This morning it was like she was in heaven eating her banana. Rolling it around her mouth even getting good lip closure (for those of you who don't know the world of special needs terminology - kiddo's with oral motor issues usually have trouble closing their lips hence a lot of kiddo's drool a lot.) Because Annabelle has oral motor issues and swallowing issues she battles with movement of her tongue and movement of her lips and coordinating it all so that she can eat - But it seems not when it comes to bananas.
So bananas will be on the menu for the foreseeable future.

Well you are probably thinking, if you have been following our blog, what happened to the swallow study that we were supposed to do? If you want to catch up here and here .
We were due to do a repeat swallow study to see if there was any regression after having stopped doing the Vitalstim therapy for 3 months. To see if she has started to aspirate again. Well it has been 5 months since we stopped Vitalstim she has not had a chest infection, bronchitis, pneumonia in this time ( this would definitely indicate that food/liquids when swallowed was going into the lungs, meaning she was still aspirating) and she hasn't so that's good news. Also since we left our previous house the vomiting has been minimal and she is still eating and drinking well.

So I emailed the therapist that used to see Annabelle for Vital Stim and we have decided to put the swallow study on hold for now because Annabelle is going through this detoxing of the mold toxins and to subject her body to unnecessary test which includes X-rays (radiation) would be silly, when we can see clinically that she is doing a lot better. Just in time to eat all that turkey next week for Thanksgiving.

"Get me out of these pumpkins and give me a BANANA!"Said Miss Lip

If only we knew....

2010-11-15T17:07:00.000-08:00

This ones for you Sharna - a Purple Couch

Caramel Macchiato mmmmm

Tonight I was chatting with an old friend on FB, we used to work together in England. We became friends because of our love of coffee, we used to go to Starbucks in our lunch break order Caramel Macchiato's and sip them and lounge on these wonderful purple couches they had there, until it was time to go back to work. Sometimes we used to moan about work, well actually all of the time we used to moan about work, little did we know how good we had it back then!

We said that we longed for those days and would love to have the freedom we had back then, we have fond memories of those days. We both said that every time we pass a Starbucks we try recreate those times and remember each other. But it's just not the same now. There are no Starbucks in Perth Australia where she lives now, and the Starbucks here in California don't have couches and you don't get coffee in proper mugs only in paper cups. And of course we both have 2 children now and there is always something on the To do list and there certainly is no time for lounging.

The fond memories need to stay in the past.

You need to appreciate the moment you are in now. Back then we didn't really appreciate those moments, where you bond with friends and they leave a mark on your heart forever.

Take a look at what I can do now!

2010-11-13T07:44:00.000-08:00

Where is the video camera when you need it? Anyway, we took photos of this amazing thing Annabelle did last weekend at our last California ABR satellite. She was on the floor crawling around, while I was learning the new exercises for her. She crawled over to the stroller pulled herself up on it, Cristina our trainer went behind the stroller to support it and then she pulled herself up to stand while being supported by the stroller. We, us and another family in the room also training, all watched in amazement at what Annabelle did. We all were dumb struck.

"No matter where you go, there you are"

2010-11-06T12:00:00.000-07:00

So today and for the past week we have been selling our worldly possessions, Craigs list, Ebay, and then this morning a Garage Sale.

We have been in the USA for 4,5 years and our Visas run out May '11 my husbands employer wants him back in the UK to manage things in Europe now. We have taken this opportunity to make a clean start, sell everything that could have possibly be contaminated by the mold, and live simpler lives.

If there is any slim chance that Annabelle could be still affected by the furniture that was in the house and if it means that we have to get rid of it, we are willing to take that chance by getting rid of it. Our daughter has done so well since we have moved and her life is far more important than a couch that we own or the clothes that we wear.

At the moment we are trusting God to lead us he has promised that with Him all things are possible and I believe he is showing us the way we just have to listen to him.

The title of this blog "No matter where you go, there you are" I never really understood it until recently I was chatting to Elinor, Annabelle's Feldenkrais practitioner, and it came up, Yes we are moving back home, yes we are leaving everything behind, no we are not trying to run away, we are still who we are, we still have deep feelings of sorrow for what has happened to our daughter and to our family, we have had to face some hard stuff, loss of our health, our home, our worldly possessions. But we still have each other, we still can laugh, cry and love. And most importantly we have God to help us through.

Amen.

Mold Case Part 4

2010-11-03T01:14:00.000-07:00

Previously on Mold Case Part 1 and Part 2 and Part 3

We were ready to leave it all behind.... what have we decided to do?
Read on and you will find out.

So last Thursday we drove up the coast 3 hours to get to Santa Barbara (wow California is beautiful! You tend to forget how beautiful when you are rushing to therapies every day!) to go see a Doctor who is a mold specialist. She was affected by mold sickness herself and now treats mold patients. I had sent her all the test results before hand so she could revise them, so after a short history she started to do an extensive treatment plan (5 pages) for Annabelle, here's a shortened version:
She said Annabelle's body has been subjected to many toxins and is like a barrel that is filled to the brim and possibly over flowing. Her body is finding it difficult to process and eliminate these toxins and to develop at the same time, so what we need to do is eliminate all toxins in her environment and also try to eliminate the toxins inside her body too, to help her heal.

Environmental controls

Avoid exposure to water damaged/moldy environments
Avoid exposure to pesticides, solvents/VOC's (paint, carpeting, adhesives furniture, cleaning products personal care products, smoke, traffic pollution, Plastics, heavy metals, Dry cleaning
Clean all household with baking soda, vinegar, Borax including clothes.
Organic diets minimizes exposure to pesticides and other contaminants
Filter drinking, bathing and washing water
Use a triple element air filter
Create bedroom sanctuary un-carpeted room with healthy non-contaminated bedding and sleeepware
If outdoor air quality is good spend as much time outdoors
Spend time daily in sun without sunblock

Just to add this in for those who don't live in California this is a fumigation tent that is put over the whole house and pesticides are pumped into the house and left there for 16 hours then they take the tent off and it kills all the bugs. This is what I came home to on Friday morning, this is the house next door and this is after the Doctor had specifically told us to avoid pesticides well to say the least I freaked out.

We called the company and made sure they secured the tent down properly so that none would come over to us they assure us they would. We closed our windows and went out the whole day when the tent came off so that we wouldn't breath in any of the pesticides! This is just one of the challenges we have faced this past week.

Internal controls

She has also prescribed Cholestrymine (this will help bind the mold toxins in her system and excrete it in her stool) to be taken with Charcoal also a binding agent
Nasal Fluconazole spray for her nose
Ketoconazole shampoo to be used all over her body for the rashes she has.

She recommended this great soap which we all tried tonight its by Collective Wellbeing Detox Charcoal Cleanse Soap we really felt good after using it

Warm Epsom salt baths with 1 cup of espom salt per bath

Sauna therapy ideally with far infared sauna

She also has given us Nasal glutathione to be used in conjunction with the glutathione cream

Supplements - she has recommended an whole bunch of new ones to add to the ones she is already taking I will be taking that slowly introducing one at a time.

We talked about what to do with our furniture and she recommended we get in touch with Jack Thrasher Phd which we did. He did not say yes or no directly he said that mold affects different people in different ways some people will be fine taking their stuff and would have no problems others who are more sensitive would not be fine with taking their stuff. This includes clothes even after washing them. Which we did take with us. And until we go away and leave our stuff, clothes and furniture we will not know how badly its affecting Annabelle just like we didn't know how badly the house was affecting her before we moved.

In the mean time while we make up our minds about what to do we have done a huge clean, washing everything in Borax and wiping everything with hydrogen peroxide. Making her bedroom a sanctuary.

Watch out mold spores your days are numbered!

Halloween 2010 pic's

2010-11-01T07:30:00.000-07:00

We had a great time trick or treating last night, Annabelle had fun in her stroller watching Matthew and our next door neighbors kids running up to all the doors asking "trick or treat" and then getting a whole bunch of candy.

Annabelle chose a lady bug fairy costume, Matthew was a storm trooper, and Martin decided to be James Bond in shorts??? Very dashing! We had loads of fun.

Mold Case Part 3

2010-10-24T00:50:00.000-07:00

Previously on Mold Case : Part 1 and Part 2 we had fired the environmental doctor that we were seeing and had gone back to see our HBOT doctor who had ordered some tests to see if the mycotoxins from the mold were in Annabelle's body.......

Well the results are back.... read on to find out what they are.

I grew up in South Africa and lived there until I met my husband who was working in South Africa from England on a 2 year contract, well needless to say we met, fell in love, got married and we decided that we would move to England because of better job prospects for my husband and I. So we had all our worldly possessions packed up, and shipped in a container to England. The container took 8 weeks to get there, living out of a suitcase for 8 weeks is pretty hard but we managed and we were really grateful to see "our stuff" again. Being in a new country is really challenging but being around furniture and stuff that I recognized helped me through, it comforted me when I was so far away from my home country and my family.

We settled down and decided to start a family and after 41 weeks of being pregnant and 13 hours of labor, Matthew was born. Things were going well and then my husband comes home and says " How would you like to move to America?" He had been offered a job to head up a new business in the USA and the head office was in California, he went on a 2 week trip to see what it was all about and left me at home with a child who had just contracted chicken pox so I was confined to our home for 2 weeks! What fun.

Well our possessions were packed up once again (I'd hate to know what our carbon footprint looks like!) and shipped to California where we moved to our previous house that we moved from because of the mold issues. We decided to have a second child, I fell pregnant and 9 weeks later I lost the baby to a miscarriage, we decide that we were going to try again and 42 weeks later and only 6 hours of labor Annabelle was born.

Well what I am trying to get to really is that no matter where we moved to I always felt I could cope with the stress of living in a new country because I always had "our stuff" with us.

The test results are back and here they are :
Aflatoxin 0 ppb (NP)
Ochratoxin 4,9 ppb (P)
Tricothecene 0,47 ppb (P)

NP - Not present
P - Present
So to explain this result Ochratoxin is the mycotoxins that are produced by Aspergillus/ Penicillium and Chaetomium, that figure is quite high amount in her system.
The Tricothecene is the mycotoxin that is produced by Stachybotrys, that figure is low.
These were the 4 prevalent Molds found in the house by the air quality tests that were done so she has been exposed to the mycotoxins and they are still in her system.

So when we left the house just as a precaution we decided that it would be prudent to start some sort of detoxing, so we decided on Modifilan Brown Seaweed and is known to "Detoxifies the body from heavy metals, radioactive elements, free radicals and toxins."We felt great better than we had in months but then after a month the detoxing kicked in headaches, mood swings and dizziness. Eventually things smoothed out and we started to feel better again.

We got the test results so now what? I emailed Andrea over at Our mold Journey and asked her that question? She recommended we see a mold specialist and recommended a good one who is in Santa Barbara, I have already had 2 phone calls with her and we are heading up there on Thursday. The other part of Andrea's email was "You have done the most important treatment possible and that is leave the environment. (Do you have anything from the house with you? It might be good to store those items)…" She added her post that she had written on the subject which was a real eyeopener. Well as you know we had packed up all "our stuff" after wiping it down with Lysol wipes and moved it to our new house with exception of soft furnishings, rugs, soft toys which we threw out. Supposedly this is not good enough mycotoxins are so small that 20 million 5 micron spores would fit on a postage stamp, scary stuff!

Well when I really started to think about it did we get everything? Eveything was such a rush to move, then I thought Oh no! our broom was something we brought with us that was used in the other house and we've been sweeping the floor in the new house did we bring the mold with us? Do we have to get rid of all "OUR STUFF" for the sake of our health? That comfort of knowing that even being in a foreign country I have "my stuff" with me gone, how would I explain to my six year old he has to throw away his lego's because its making him sick? Even worse how do I explain to Annabelle, she loves brother's lego's?

Great recipe to boost your childs health

2010-10-21T00:36:00.000-07:00

So I have recently been trying to feed Annabelle better food, we have already changed most of her food to being organic, but I really wanted to add more raw fruits and vegetables in her diet. I was not sure of this because of all her swallowing, chewing difficulties, how would she be able to crunch into a raw carrot or chew on some lettuce? Well a doctor (DO) that we see regularly suggested this recipe but I have tweaked it a bit and I think it is delicious.
I call it "Rootslaw" because its like coleslaw with out the cabbage and with out the mayo well may be its not like coleslaw at all! oh well here it goes:

These are the raw fruit/vegetables you want to peel and grate - turnip, carrot, beetroot, and apple - I grate mine fine because then Annabelle can swallow it easier. You can add other root veg that you think might go well I think I am going to try some radish in my next batch to give it a bit of a kick.

Then squeeze some lemon juice, and some extra virgin olive oil into your grated veg/fruit then mix, your mixture will become bright pink from the beetroot like this.

Add sea salt to taste. Note I have not included quantities but most salads shouldn't have quantities.
Serve as a side to your lunch.
Note I have added pictures of the fruit/veg just in case you have never heard of them before and it will be easier to pick them out in the grocery store lol.

God does perform miracles!

2010-10-15T00:54:00.000-07:00

Recently my husband and I stood crying watching our baby girl do something we once thought was impossible for her to do.. she was sitting... yes sitting in the middle of our lounge she had pulled herself up with the toy box and she would usually just use it for support but on this day the toy box slid away and she stayed sitting. You say well what is so hard about sitting? To Annabelle because she has so many involuntary movements any stationary position is really difficult for her because she is constantly moving but not always by her own choice.

Here is a video we took after we stopped crying and realized we need to capture the miracle.

Thank you God for your wondrous miracles you perform every day, if we just believe, they will happen.

"Oh poor thing!"

2010-10-06T01:55:00.000-07:00

No thanks! We don't need your sympathy, we are doing just fine without it!

People just don't know how to react when I tell them about Annabelle this is the reaction I got today "Oh poor thing" do they feel sorry for us or is it just a knee jerk reaction because they are lost for words?

We are sort of stuck in the "inbetween" most people don't realize there is something different about Annabelle because she looks quite typical in her stroller, most children at 2,5 could still be in a stroller but Annabelle is fast approaching 3 and soon it will be obvious that she doesn't walk, talk, and sit and I will be confronted with having to explain to people "No she is not sleepy she just can't hold her head up" "No she's not shy she just doesn't talk" "No she's not been sick she just doesn't swallow very well and some of it comes out of her mouth sometimes" Then I'll have to face the uncomfortable silence or the stares because they have been shocked unexpectedly or have to deal with comments like the above yuck....

The other day another Mom at school came up to me very excitedly introduced herself was really friendly was really keen on our sons having play dates, then when I told her about Annabelle she seemed to brushed it off, well I haven't seen her since, is she avoiding us?

Please don't stare at us it makes us uncomfortable please rather come over and talk to us, Annabelle does understand more than you think!

Please don't make rude comments like the above, Annabelle does understand more than you think!

Please don't ignore us we have feelings too, Annabelle does understand more than you think!

Moms inspiring Moms

2010-10-01T01:10:00.000-07:00

The internet is a fantastic thing! What I think is that there is 2D, 3D, 4D and even now also ID, a dimension where you connect with others on the internet. Especially if you are a mom with a special needs child. I really don't know what I did before we had the internet.

If it wasn't for other Moms blogging, inspiring, sharing, confiding, guiding, advising and teaching I am not sure I would be as sane (well only sort of) as I am today. So today I am going to recognize all those moms out there that I have not even met in person but have inspired me to be a better mom, wife and person all through their blogs, I thank you with all my heart I am truly grateful you are all awesome please carry on blogging you are doing a great job!

Firstly Katy at Bird on the street and her very cute son Charlie inspired us to go to Montreal to do this crazy, wacky therapy called ABR. Boy am I glad we did! She is still inspiring us all the time, she posts Thematic units she does with Charlie, their last theme was on school, and she also inspired me to do this craft a DIY light box that she guest posted (not sure if that's the correct term) on "No time for flash cards", with my son Matthew, he wanted to do a solar system version of the light box.

Secondly to Marcela over at A little piece if heaven, inspires me with her wonderful writing, her beautiful words helped me through some down times, Thank you for all that you do for Nathan and for never giving up, you are a true inspiration I love this post Worry Less, Love more. Your detail you put into all your research for therapies for Nathan, never stopping, always searching for the best person to help him, you are awesome, and may be some day between your busy schedule and mine we can slip some time in to meet for coffee, What do you say?

Thirdly to Holly over at Caleigh's Corner you have inspired us with Caleigh's use of her iPad to communicate. Your tireless devotion to your daughter is awe inspiring, helping her do things "they" said that she would never be able to. You have inspired us to use the iPad more and to trust my instincts when its comes to the education of my children. Thank you for sharing your journey of homeschooling Caleigh you are showing us what is possible.

Lastly a new blog that I found over at Our Mold Journey and already have emailed Andrea several times. Wow her site just blew me away I really wish I had found it a year ago, it has guided me and taught me more about mold and what to do when you find mold in your home. She has also got recommendations about treatments, testing, change of diet, supplements and natural ways of detoxing from mold exposure, Thank you so much for your wonderful site and my prayers are with you and your family in your current situation.

Well these are just a few that I love and wanted to share with you all and I seem to be addicted to blogging especially when you guys are writing, thank you.

Mold Case Part 2

2010-09-26T01:44:00.000-07:00

Previously on Mold Case......

So we last figured out that I have an allergy to mold, now there is a difference between just having a plain allergy to mold, this is where you will get common allergy type reaction or symptoms when exposed to mold, or having a toxic reaction to mold. Now 25% of the population because of genetic differences will experience more than just your average mold type allergy symptoms, but will experience the toxic effects of toxic mold. Symptoms ranging from runny nose, cough, shortness of breath, wheezing, chest tightness, itchy eyes, nosebleeds, urinary problems, nausea, vomiting, abdominal pain, nervous system problems such as dizziness, anxiety, weakness, restless legs, metalic taste in mouth, low blood pressure, headaches, memory loss and shaking. Memory loss, nosebleeds, anxiety, shaking, nausea and vomiting are not typical allergy symptoms, all the symptoms that are in blue above where symptoms experienced by one or the other of my family.

My son Matthew, since we moved to California has had nose bleeds, we always thought they were due to the dry air in So Cal (it doesn't rain much here in So Cal) we tried everything, saline spray, creams, gels, vitamin k, they all would help for a certain time, then the nose bleeds would come back full force sometimes 3-4 nosebleeds a day. When I first started to read about mold toxicity I read one of the symptoms were nosebleeds this was what set alarm bells ringing in my head.

I can't remember exactly when but I think round about March or April of this year Annabelle started vomiting, the therapist at vitalstim thought possibly I should feed her smaller pieces at a time and that I should go slower (gees sometimes it would take an hour to get a small bowl of food down her if I went any slower I may as well not have fed her, then sometimes she would still puke it all up again) we would get so desperate at times because she wasn't gaining any weight, we even considered that Annabelle would need to get a g tube so that she could get in enough nutrients. I discovered that she would feed better in her car seat so I made a point of not even feeding her breakfast at home, I would go to our therapy appointments then afterward feed her in the car she seemed to do better there.
The nosebleeds and vomiting seemed to have stopped since we have left the house.

We went back to see the environmental doctor to get the results of the urine test he said will give us some answers, it came back and Annabelle seems to be very deficient in all the B vitamins her immune system is down and they recommended that she takes large quantities of Vitamin C. She needs CoQ10, Lipoic Acid, Carnitine, Mg, Mn, Argnine, Biotin, and the scariest thing about the test is that the doctor said that her DNA was under attack, the test was inconclusive as to what was attacking her DNA but it was under stress. His recommendation was that we start giving her a multivitamin, (which when I got it home and compared the ingredients to the one she is already taking it is pretty identical) The doctor says it could possibly be the mold attacking her system and we could do another test ($900) that could pinpoint if it is the mold causing the damage. Well I just about had enough of this doctor why could we not have done that test in the first place? Is he just dragging things out so that he gets in lots of visits? Well I fired him, just like Katy does in her post here, and not going back, we really don't have time for people to waste our precious time and resources.

So we went back this past week to our previous doctor the one that recommended HBOT.
I updated her on the situation and here were her recommendations for Annabelle
She said to stop taking all multiple supplements and introduce one new one at a time and the ones that she is most deficient in first
Methylcobalamin B12 - 2500mcg a day
Folate MTHF - 1000mcg a day
Culturelle Probiotic - 2 a day
Glutathione cream - 1 ml to skin at night before bed ( if you don't know what this is check out the link)

She also recommended a mold allergy test
and also agreed to do this test I found, Urine test from Real time labs that will tell us if Annabelle has Mold toxins present in her body, so just waiting for the test kit to come and so wait and see in mold case part 3 for the results.

Annabelle busy raiding brothers Lego box

Oh Geez why do they torture us parents?

2010-09-23T01:29:00.000-07:00

Yes Annabelle turned 2 years and 8 months and the process of transferring from the regional center to the school district has begun. The preschool called to schedule the transition meeting ( which is tomorrow ) and as usual I haven't filled in the forms yet. Husbands has been away this week on business, so I have been juggling things by myself, and filling the forms in was the last thing on the list! So I pull them out and as usual they want to know the childs developmental history:
Developmental milestones: When did she do things fist well here is what it looks like:

Rolled over: 8 weeks ( yes I thought she was going to be so advanced because she rolled so early )
Sat Alone: ------------
Crawled: 15 months
Walked alone: -----------
Dressed Self: ------------
Ate Solids: 12 months
Fed self with fork or spoon:-----------
Smiled in response to people: 6 months
First single words: --------------
Two word phrases: -------------
Three word phrases:-----------
Ave # of words per utterance : -----------
Estimated no of words in childs vocabulary: --------
Percentage of speech intelligible to other: 0%
Toilet trained: ---------------

Who the heck comes up with these forms? Do they want to torture us parents by making us fill them in? Well what I mean by filling in, by putting lines next to everything.

We had such a nice summer didn't think much about what my child couldn't do, only focused on what she has achieved, they might be small achievements to a typical child but to Annabelle she has being trying so hard to master certain tasks, like trying to lift her sippy cup to her mouth, where is that on the list?

My Everything

2010-09-19T00:02:00.000-07:00

From the moment I met you, I knew you were the one,
you were my lobster,
my soul mate,
my best friend,
my everything,

We have been through some ups,
and we have been through some downs,
but what a ride it has been,
with you by my side,

You weren't keen on changing things by having children,
but you have embraced fatherhood with all your being,
you are a wonderful father,
our children could not ask for a better Dad,

Sometimes we fight,
we always make up,
you put up with me on my crazy days,
you accept me on my bad hair days,
(I am not sure which I have more of?)
but you can always make me laugh,
and I will always love you,
Thank you for marrying me,
and even though you joke by saying
'I didn't know what true happiness was until I got married, then it was too late...
I know you don't mean it
Happy anniversary my darling, wonderful husband
Twelve years and still going strong.

September 19, 1998, Our wedding day

Working the system

2010-09-14T01:10:00.000-07:00

We have been in California 4 years now and I am only just starting to understand how things work here. (talk about slow learner!) Especially when it comes to our medical insurance. Prime example, Annabelle's been going to see a doctor (actually a DO doctor osteopath) since the beginning of the year, this doctor is out of network so the insurance doesn't pay the doctor directly, you have to pay the doctor and then claim back from the insurance (you usually cross your fingers and pray when you send in the claim and hope for the best) because I don't really understand how insurance works I never knew what I would be getting back from the insurance sometimes they would cover a good percentage of the bill then other times nothing. So in this particular doctors case the first few times we saw her I sent in the claim and the insurance paid back a good percentage, then after the 6th visit they only paid $25 on a $160 claim. I couldn't understand why all of a sudden they weren't paying as well as before. So we saw the DO a few more times and I then took all the paper work to the ladies that worked in the doctors office and asked them why there was a difference in what the insurance was now paying. They were extremely helpful looked over the paperwork, they said that most probably one of our benefits had run out and if they changed our invoices to reflect just "office visit" instead of breaking it down into office visit and cranial manipulation that may be they would pay more, and printed me off a new invoice with the new format.

A week ago I sent off the new claim, and I was only expecting to get $100 back (4visits x$25)
To my surprise I had managed to work the system, the check I got was..........

Yes you saw correctly $407.40 I think the ladies at the doctors office deserve a big box of chocolates what do you think?

Mold Case Part 1

2010-09-10T01:53:00.000-07:00

Talking about TV shows, my all time favourite TV show "House" is starting its new season on the September 20, I love this show, it has everything humour, romance, suspense, drama, oh did I mention humour. Well you get the drift but my favourite part is when he always seems to be able to diagnose the patient, even if the patient is dead. He will send his team out Foreman, 13 or Chase to the patients house (even if they have to break in!) to find out more about the patient and get a history. Taking samples of anything toxic in the house, sniffing around bottles, riffling through drawers. Well you would never have guessed no doctor has ever come round to our house to get a history on Annabelle or even broken in to get one. I wish more doctors were more like Gregory House may be, just may be we would have a diagnosis by now!

So the last you heard about the mold we had seen an environmental doctor and he had ordered a urine test that was going to give us some answers.

I also went to see the environment doctor, because I was also having symptoms and he said that if it was the mold causing the problems I would be a good person to test, (being an adult I can take pain better not!)
Well his first suggestion was to do a CBC blood test, the second was to do an allergy test this is where they inject minute amounts of dead mold under your skin and see what reactions you come up with. Well I would not recommend this test for to anybody especially if they are allergic to the substance that they are injecting, the first injection I started to feel dizzy, then she would wait 10 minutes and see what symptoms would appear then inject me with a lesser dose, the injections felt like fire going into my arm stinging like you won't believe, other symptoms I had were my left hand itching, my chest becoming tight, and started coughing, my nose burning, and it also felt like I had taken recreational drugs I was so woozy (Note to Mom "not that I would know what that feels like I just could imagine") 2 hours after the test, my arm swelled up like a balloon. They injected me with the 2 types of molds that was prevalent in the house, which were ( the first line on my arm) Aspergilus/Penicillium and (the second line on my arm) Chaetomium. In the first picture she drew round circles on my arm where the liquid had gone in just in case I had no reaction, then they would know where it originated from.

.

The photos really don't do it justice, my arm felt like it was on fire, it still itches now when I think about it. So guess what? I am allergic to the 2 prevalent types of mold that were in the house. The results of the CBC were that my white blood cell count was low. This still doesn't tell us did the mold affect Annabelle? Well you have to wait for Mold Case Part 2 coming soon.

Labor Day and a Recipe

2010-09-06T01:18:00.000-07:00

Labor day 4 years ago, we moved to the USA from England. I had never been to California only my husband had, and with my 2,5 year old son, we moved to a place I didn't know. We stayed in a furnished apartment until our furniture arrived that was being shipped from England. I had started to look for a house for us to rent and a realtor, Amanda had showed me around a few places. She was friends with the wife of a colleague of my husband, and she was part of the Moms club. On the second day after I arrived the phone rang in our apartment my husband picked up the phone and said it was for me, it was strange because I didn't know anybody here yet, it was Zen (I didn't know it yet but she was to become my very good friend) she invited me to come walking with some ladies the next day and then go the the park afterward. Oh boy how my life has changed in 4 years!
Happy Labor day! Hope even if you are a busy mom you too can get a chance to enjoy a break from "work".

With labor day comes the changing of the seasons, summer is on its way out and autumn/fall is on its way in, well here in Orange county you don't seem to notice the seasons as much because most of the time it is quite pleasant weather. But if you are feeling the chill in the air you might want to try this great recipe I found in a magazine, it is dairy free, gluten free, egg free, and it tastes great and it reminds me of when I was little we used to love rice pudding, yum! enjoy!

Brown rice pudding

1 1/2 cups organic coconut milk
3 1/2 Tbs honey ( you can use Agarve nectar instead or even leave it out it )
1 Tbs arrowroot powder
2 cups cooked short-grain brown rice ( I find using 1 cup uncooked rice makes what you need)
3 Tbs organic raisins
2 Tsp gluten free vanilla extract or vanilla flavor
Ground cinnamon for sprinkling

Heat coconut milk and honey in saucepan over medium heat until mixture starts to bubble. Whisk in arrowroot. Add rice and raisins and simmer 3 minutes, stirring constantly.
Remove from heat, and stir in vanilla. Spoon into an oven proof bowl and sprinkle cinnamon generously over the top put in oven temperature 380 F for about 15 minutes.
Take out of oven cool slightly and serve and enjoy.

Confessions

2010-08-31T00:37:00.000-07:00

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

2010-08-27T20:28:00.000-07:00

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

2010-08-25T22:10:00.000-07:00

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

2010-08-24T01:43:00.000-07:00

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

2010-08-20T15:00:00.000-07:00

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

2010-08-19T02:29:00.000-07:00

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

2010-08-17T12:27:00.000-07:00

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

2010-08-11T00:57:00.000-07:00

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

2010-08-07T00:34:00.000-07:00

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!

2010-08-03T13:07:00.000-07:00

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.

Mold update

2010-07-31T23:49:00.000-07:00

After a hard day packing up our worldly possessions, with two wonderful cleaning ladies and my parents in-laws helping us, we managed to get everything packed in boxes.

Tomorrow we move a mile down the road to a new house.

A nerve wrecking week of searching for a new place to live, with trying to stay in the same area so that my son does not have to change schools, and also staying in a one bedroom hotel all four of us, all week, my nerves were shot! We eventually got a call Friday morning (thank you Jesus) that we were accepted, and we get to rent the house we wanted.

Tomorrow we move in, hopefully a clean start, MOLD free!

This means tomorrow morning before they take our furniture to the new house, we have to wipe down every surface just in case any mold has settled. I don't want to be taking the mold with us. We have already thrown out any soft furnishings because it is very hard to get mold out of those by just wiping them down.

Annabelle has taken everything in her stride this week, only had one melt down in all that has been happening (which is pretty good for her even in a good week she can have more than one) she has been eating well and is quite happy, we suspect she is happy to be away from the mold or may be she is happy because mummys happy to be away from the mold, who knows?

We have seen yet another doctor, he specializes in environmental medicine so in other words things that make you sick from the environment, he has recommended a urine test for Annabelle this will test if any mycotoxins are coming out of her body through her urine, the results take 3-4 weeks I will keep you posted, next hurdle actully getting urine out of my daughter, who ever invented those pediatric bags to collect urine in babies was obviously a man because they do not work on girl babies.

Well see ya next post will be from the new house.

The Mold Truth

2010-07-29T01:36:00.000-07:00

No doctor has ever told us Annabelle will never, walk, talk, sit ect. No doctor has ever given us a prognosis, for them to be able to do that they first need to have a diagnosis. We don't have a diagnosis!

I read other moms blogs about how they were told there child would be a vegetable for the rest of their lives and never do anything and their child every day proves that doctor wrong by sitting, walking, talking.

We saw 2 new doctors at the beginning of this year and they ran some more tests, we did an EEG and a repeat MRI (the MRI we did at 6 months old was normal) from all of that we got that she had an abnormal EEG but she has no clinical seizures, and the MRI showed that she has a metabolic condition causing things to happen in her brain. All he other tests came back normal the last test that hasn't been done is a muscle biopsy where they cut a chunk of muscle out of your child's leg to see if the child has a mitochondrial disorder. May be all along the problem was right under our noses!?

Well here we sit in a hotel room because at present we are homeless, what started as a leak in the upstairs bathroom has now become a huge problem, walls being torn down and Mold found
behind those walls, and its been going on for a long time. When the remediation company came
in to start the work the guy said to us that we have to be so careful because mold is very
toxic and especially with young children, could cause problems with their development.
At that point he did not know about Annabelle.
Well alarm bells started ringing in my head and what did I do, I went straight to the Internet that place you go to when you want to "scare the hell out of yourself!" especially if you have an undiagnosed child.

Loads of sights come up scaring me more as I read what do I do, who do I call? Should we do tests? what tests? It's all a bit vague with no clear direction.

So I email the doctor that we have been seeing that prescribed HBOT, ask her what to do, she recommends that I call J to come in and do some tests in the house, we stop the remediation company from tearing down any more walls. J comes in the next day and does some air samples. He is also appalled at the poor set up the remediation company had and was really worried they had spread mould all over the house not just in the family room where the damage was.
The test results come back and yes there is mould in our house mostly in the family room and in his report he is most concerned about one type that is hard to capture and there was quite a high amount in the air. It's name I can't recall now but starts with a C, I google it and low and behold it possibly could cause neurological problems. We have been in this house 3,5 years, I was pregnant with Annabelle, she was just a small baby when I brought her home, all these things are going through my head, could this mold have caused all her problems no, no, no, stop yourself your hypercondriac self is showing up have we all been affected? My son suffers from chronic nosebleeds is that a side affect I have been coughing, sneezing since they came in and tore down walls?
OMG will this nightmare never end, will I never have peace, will I be searching for answers for the rest of my life!? This is the Mold Truth!

Trying new things they might surprise you -VitalStim Update

2010-07-11T20:08:00.000-07:00

It has been a month since we stopped doing VitalStim therapy and when the therapists told me that they thought we should take a break for 3 months my heart did stop for a while. I didn't think Annabelle was ready to stop the therapy especially not for 3 months. It's like somebody telling you to stop putting diapers on your child and you know your child is not potty trained, you will just end up with a big old mess, or will you? Will your child surprise you?

Well having a special needs child with developmental delays you become overly cautious about expecting your child to surprise you, as you have had months of wishing, wanting, praying they will surprise you (especially around Christmas and birthdays "wouldn't it be a great present if she just .... ?). This leads you to not trying new things and getting stuck in a rut of what you know they can do. This can be detrimental to your child's progress.

I have been in this situation all to often with Annabelle, scared to try new things because it might upset the status quo, but I am learning that sometimes you don't know until you try. The therapists seemed to be convinced that Annabelle was ready to stop therapy, but all I had in my mind was how she was like before we began therapy choking, coughing, gagging then refusing to eat. Well may be this time round Annabelle will surprise me.

Annabelle is still eating, swallowing and even drinking. We have less than 2 months to go till the swallow study we will keep you posted.

Annabelle decided to surprise us by sitting at the beach

Dive 35 - HBOT update

2010-07-05T10:50:00.000-07:00

I was going to do a post about The Feldenkrais Method but still need to upload some video and so I thought I would do this post first.
Well here we are, in the HBOT chamber doing our 35th dive, time has gone fast and I really don't want them to end because we have seen a few good changes, here are a few we have noticed since we started 7 weeks ago.
I will try list the gains in the order we noticed them,

Hands softened and opened more (mostly tight fist most of the time before)
Lateralization of the tongue, moving tongue to side of mouth
New found interest in toys
Which leads her to crawl around the house more to find more toys
More interest in trying to open cupboards
Crawled up a step that was a foot high
Getting onto knees and climb into toy box with both arms
Cognitively - more interest at school
Making more sounds "v" 'b" "d" "g"
Ability to make choices better
Able to hold objects better, release better
Able to get hand to her mouth and chew on fingers
Pincer grip emerging (using thumb and pointer finger to pick things up)
Sitting more stable and arms supporting more

All these might not seem like huge gains or milestones to anybody that reads them but to Annabelle these are major breakthroughs.

So Martin and I have decided that HBOT has been such a positive therapy for Annabelle that we are going to continue and do another 40 more sessions Yippee! I am so happy.

Why? Why me?

2010-07-02T00:52:00.000-07:00

Well we were at a Feldenkrais lesson today (that is going to be the theme of my next post I am still working on it) and I was talking to Elinor who is the practitioner. Elinor and I have been taping Annabelle's lessons and Elinor has been putting them up on You Tube for other practitioners to see and learn from, (if you want to see search "Elinor Silverstein") especially how to work with children, Elinor was saying how many emails she has received from practitioners all over north America and beyond, saying how much they are learning from the videos.
Then I said that was the purpose of doing all this work taping Annabelle was to inspire practitioners so that more have the confidence to work with special children and more children would be helped, and also if parents with special kids saw these, they might seek out a practitioner to help their child.
Then I said, and had an aaahhhhh moment - this is the reason why there are special needs children in this world because they inspire people not to be ordinary but extraordinary, to go beyond their capabilities. Learn new techniques, invent new techniques (feldenkrais, ABR, feeding therapies etc all are relatively new to this world ) to help that child develop. What kind of life this would be if everybody was the same, everybody was able bodied, intelligent, average!! Boring?
Elinor then said -well they won't know it!
Yes they won't know it for sure because until you are faced with the differences, faced with the challenges, faced with overcoming adversities, you just don't know it!
Like when before you had children you knew what it was like to stay up all night( par-tying or studying)it was all about you! But until you faced the challenge of of staying up all night looking after a sick child you just didn't know you could do that, that you had that capability in you.
I still remember when Annabelle was a small baby and she used to wake up frequently at night and not go back to sleep for sometimes 2 hours and I would nurse her and rock her until she eventually go back to sleep - and I would cry and cry and sob and think oh God why me? Why have you given me this child. Well I now know, to challenge me, to become a better person, and inspire, and challenge other people in this world too.
What challenges you? I would love to hear?

My son Matthew and Annabelle 8 months old - I always love rainbows because it always makes me think that no matter how bad the storm you can usually find a rainbow somewhere

Cuteness contest

2010-06-28T23:43:00.000-07:00

So Annabelles brother, Matthew gets to bring home a bunny rabbit from school to look after for the weekend. On the first day Annabelle eyed out the bunny, as if she was thinking "why are they all paying so much attention to that fur ball and none to me!" Then she became more interested and even crawled up a step (first time doing this) to get closer to the cage. She scoped out the competition and eventually conceded it was a tie!

Yes I can hear I have selective hearing because I'm 2

2010-06-17T10:18:00.000-07:00

So we have always thought Annabelle could hear but it was brought into question when a speech therapist was doing an evaluation,( Annabelle has no speech she makes sounds, mostly vowels and of course the incessant 2 year old whining!) and did the test where you rattle something behind the child and see if they turn. Well Annabelle turned to the right but didn't turn to the left. So then we were worried that she couldn't hear in her left ear, and we proceeded to take Annabelle to a formal evaluation. They put Annabelle in booth and piped sounds directly in her ears and if she turned then a bird in a box would light up. She would consistently turn to the right but not to the left, they recommended we do an ABR test - auditory brainstem response test. This is a test where the child is sedated and with a special test it checks if the brain is actually hearing the sounds.

We get up 5am in the morning to get up to CHOC to get the test done at 7 am. They gave us the results straight away, yes Annabelle has normal hearing in both ears. I should have known my daughter loves to pass tests!

VitalStim - the importance of being able to swallow!

2010-06-14T18:48:00.000-07:00

Ever since Annabelle was about 2 weeks old I had trouble feeding her. Because I think breast milk is the best thing for a baby I persevered even though she arched back, lost her latch on, coughed choked, burped, cried, refused to feed, bit me, had to give up loads of foods because of all her allergies I never gave up! I eventually figured out that she was a child that needed little and often feeds and that lying on the bed and I would cradle her she wouldn't arch so much and I could keep her latched on long enough to get enough and she wouldn't cough and choke as much either.
When she turned 6 months I started trying her on solids it was a bit of a disaster to say the least her tongue thrust was so strong it just pushed any puree out as soon as I got it in, the food that did go in she coughed and choked on, we weren't getting any therapies yet and I didn't know what to do but thought maybe she wasn't ready for solids so put it on hold.
We started a group program when she was 7 months old and only received OT when she was 12 months old, I got a few tips on feeding from the OT's at the group program and heard about something called a swallow study, I asked our pediatrician about this and he said that the OT needs to do an evaluation, eventually got the OT at CCS to do an evaluation. They weren't sure if Annabelle was aspirating but I convinced them to recommend we do a swallow study ( this is where they x-Ray the child while feeding and they can see how and where is goes down). Annabelle was 15 months when we did the first swallow study it was found she was aspirating ( when she swallowed the airway would not close properly and liquid/food would go into her lungs) and she wouldn't always cough when this happened this is called silent aspirating, and aspirating on thin, thick liquids and purees.When this happens you are at high risk of getting chest infections, pneumonia because there are objects in the lungs that shouldn't be there. Luckily Annabelle never had chest infections because she was mostly breast fed. But she did alway have a runny nose this was because when she swallowed she would also reflux up into her nose.
Well the recommendations from the swallow study was that we see a GI, we had already taken Annabelle to see a GI when Annabelle was 6 months old, she had said that all of Annabelle's problems were neurological and that she couldn't help us (but proceeded to charge us for
the appointment anyway) Well we thought we would get a second opinion this time this GI suggested that Annabelle should get a g-tube ( this is a surgery where the a tube is fitted directly to the stomach and a button is placed on the belly and food can be syringed directly into the stomach) Well I am not big on any kind of surgery especially not on my 15 month old child.

I had heard about this therapy called E stim / VitalStim and I asked the GI if would could try this out before we went ahead with anything as invasive as surgery, we got referred over to CHOC Rehab for an evaluation. They said Annabelle would be a good candidate for trying VitalStim, we started VitalStim a year ago.
What is VitalStim? Electrical stimulation therapy is a specialized form of neuro-muscular electrical stimulation designed to treat dysphagia (difficulty swallowing). It is a non-invasive therapy that uses a small electrical current delivered by specially designed electrodes, which are placed on the face and or neck. The current stimulates the motor nerves and the muscles responsible for swallowing. This stimulation facilitates strength, coordination, endurance and increases sensory feedback and timing in the muscles involved in feeding and swallowing. While the electrical stimulation is being administered, a certified therapist helps patients train their muscles with special exercises. With repeated therapy, muscles are trained the movements required for swallow. The main goal of electrical stimulation therapy is to strengthen weak muscles and to help in the recovery of motor control.

We went twice a week for a year we had two great therapists, after 6 months we did another swallow study and Annabelle wasn't aspirating on anything during the study.
We continued with therapy for 6 more months and the therapist and I decided that we should take a break for three months and then do another swallow study to see if there is carry over of the therapy or if Annabelle regresses. There is always a chance that the muscles will atrophy if they are not used. So the best way to prevent this is keep Annabelle eating. I will keep you posted.

5,4,3,2,1, blastoff!!

2010-05-28T09:06:00.000-07:00

We have been going for rides in a rocket recently.

Yes Annabelle and I have been doing Hyperbaric Oxygen Therapy everyday for the past 3 weeks. Here is a picture of us getting into the chamber, I just sit inside with her and change DVDs when they are finished and act as a chair for her. Things seem to be going well she doesn't seem to mind going in and tolerates the pressure. We go into the chamber that is pressurized and Annabelle wears a treatment hood and pure oxygen is piped directly to her to breathe. We stay in the chamber for about 90min.

A quick explanation what Hyperbaric Oxygen Therapy (HBOT) is - a prescription- only medical treatment in which the patient breathes pure oxygen under greater than normal atmospheric pressure. The patient's blood-oxygen level is then raised many times above normal, helping control infections and promote healing of many illnesses/injuries.Pressure is built inside the chamber and therefore allows the oxygen inhaled to be dissolved at great levels in the blood, spinal and lymph fluids, as well as all other tissues.

HBOT has been a treatment that has been around a while and illnesses such as MS, Stoke, Cerebral palsy, head injury, Autism, are well known to be helped by HBOT.

Spring brings new hope

2010-04-05T19:30:00.000-07:00

"Expect to have hope rekindled. Expect your prayers to be answered in wondrous ways. The dry season in life do not last. The spring rains will come again" Sarah Ban Breathnach

I can't believe it has been over two months since I last posted, so much has happened in those two months, and I wish I had a week just to spend updating this blog on all that has happened.
I will start by saying that we still have no answers yet but we did see a wonderful doctor today, a geneticist, we have been waiting 3 months to see her and well it was worth the wait, she was recommended by another Mom at CCS ( California children services - Annabelle goes there for therapy PT and OT) This Mom said she is really good at diagnosing, I always prefer a recommendation from another parent you feel you can trust it more than say one that comes from another doctor, well she did a thorough examination on Annabelle which most doctors don't do, she asked loads on questions which most doctors don't do! She basically said that we have done most of the tests that could possibly be done but there are 2 more that have not been done and they might be what Annabelle has.

So the quest is back on to find a diagnosis the roller coaster ride has began again! First the blood draw the screaming that accompanies that, the searching and googling to find the disorders that the doctor is testing for and scaring yourself half to death reading what you child might have, then the waiting for the results, then getting the results, just one long roller coaster ride (did I ever mention that I hate roller coasters!)

Well I will post again soon with what has happened in the last 2 months. I am also going to cover all the therapies that we are doing with Annabelle and hopefully some new ones soon too.

The lessons we come to learn

2010-01-23T17:22:00.000-08:00

I believe that people come into our lives to help us learn the lessons we were meant to learn in this life, and especially our children. At first I thought Annabelle was given to me to learn patience, I always thought I was a patient person but oh boy Annabelle has stretched me to my limits and beyond some days.

But now I think that wasn't the real lesson I need to learn, I now think it is my ability to ask for help was the real lesson. I have always been a very independent person never wanting help from anybody to do anything and always thought my way was the best way to do it. Take for instance packing the dishwasher if my husband does not pack the dishwasher exactly the way I would do it, it would be wrong, and I would have to re-organize all the dishes my way. To the point were I would have to do everything because it wasn't being done my way. Well now that Annabelle needs so much of my time some days I don't even have time to pack the dishwasher let alone repack it if it was not done in the right way. Now I let my husband pack the dishes the way he wants to, its not wrong, its just different. I do need help to get through this I can't help Annabelle if I don't get help myself.
I came to this realization when 2 of my neighbors came by my house offering to help me, either to look after my son, help me clean my house, look after Annabelle while I take a shower. Before Annabelle's Angels they did not know about Annabelle and I would not have dreamed about asking for help. But without family nearby we have to rely on friends, neighbors to be there for us when things are tough. I just need to learn how to ask.

Annabelle doing really well sitting on the couch if you put her in the groove she will stay there for about 10-15 minutes before toppling over and of course if the right show is on the TV.

Truly Angels!!!!

2010-01-13T17:06:00.000-08:00

These ladies are my dear friends and are truly Angels, the original Angels,

Zen, Thalia, Erin, Lyndsey, Madeline, Simone, Raegen, Melanie, Pamela and Casey.

At the busiest time of the year, just before Christmas, they all took time out to help my daughter, and I am truly grateful.

They amazed us all by showing how powerful moms are, in less than a month they managed to fund raise $12000,00 for tests and therapies for Annabelle.

Not only did they raise money but prayers where being said for my daughter and our family, I received notes and emails saying people where thinking of us we were truly blessed.

THANK YOU.

Our Search for Answers - Cousin Caroline

2010-01-12T20:53:00.000-08:00

On returning from England, we were a little disappointed that we could not obtain the medical records for Cousin Caroline. My husbands Aunt called various doctors and hospitals and they all said they do not keep records for more than 12 years and since it has been 26 years since Caroline passed away we have given up hope on getting our answers there. We did manage to get these 2 photos of her and we are hoping that "a picture will tell a thousand words" to the next set of doctors we see. Caroline Age 3.

My Prayer for Annabelle

2010-01-02T07:51:00.000-08:00

O God of the impossible
All things are possible with Thee!
Give me the faith for the impossible -
To trust implicitly!
And when I ask impossibilities
Our Father God, of Thee,
And know that Thou art able,
I prove my faith in Thee
If I ask only "possibles"
I reduce Thee to my size,
And limit Thee to my requests
As seen through human eyes,
But Thou dost love to give much more
Than my mean cup can hold,
So, Father, help me ask aright,
And in Thy Will be bold.
Give me the vision of Thy Power
Thy inexhaustible store,
That, no matter what I ask of Thee,
There is forever - more!
Give me the faith to comprehend
Thy Will, O Lord, for me...
That in Thy Will Thou wilt perform
IMPOSSIBILITY!
Mavis L Greig

" with God all things are possible.
(Matt. 19 :26)