Burnt out

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!

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!

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

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

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

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?

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

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

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

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

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!

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

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

 

 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!